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  • 1. REQUIRED PROVIDER TRAINING FOR MEDICAID WAIVER SERVICES (5123:2-2-01) COMPLETION TIME: 8 HOURS House of New Hope (revised 3/2010) 1
  • 2. Overview  This eight-hour course covers all areas required by 5123:2-2-01 - Provider Certification. This includes:  Understand basic concepts for serving individuals with developmental disabilities  Learn the rights of individuals with developmental disabilities  Understand the basic principles and requirements of providing home and community-based waiver services;  Requirements for incidents adversely affecting health and safety; and  Universal precautions for infection control, including hand washing and the disposal of bodily waste. 2
  • 3. Objectives include:  The foundation for the information that providers of Medicaid waiver services will need to be knowledgeable about providing services and supports to individuals with disabilities,  To gain a basic understanding of current philosophies and best practice for working with individuals with disabilities,  To understand the individual service plan (ISP) and the responsibility of providing service in accordance with the plan,  To have an understanding of MUI’s and the provider’s responsibility for reporting MUI’s,  To be aware of what bloodborne infections are, how to prevent illness from bloodborne pathogens and how to handle contaminated matter, and  To understand Medicaid waivers, documentation requirements, reporting requirements and where to find forms and additional information.  This competency-based training requires the applicant/employee to take and pass a multiple-choice quiz at the end of the training—100% accuracy is required. The applicant/employee will be allowed multiple attempts to take and pass the quiz. The quiz contains questions from all resources provided in the course.  The course contains a narrative section and numerous required reading assignments including articles written by experts in the field. 3
  • 4. What is Developmental Disability (DD)? 4  The term ‘developmental disability’ includes a wide array of disabilities that includes mental retardation. Examples of other developmental disabilities include: vision impairment, hearing impairment, cerebral palsy, autism and others.  Developmental disabilities are defined as “severe chronic disabilities that can be cognitive or physical or both. The disabilities appear before the age of 22 and are likely to be life-long.”  “Cognitive” disabilities are those disabilities that are related to thought processes and the ability to comprehend and respond to what a person hears and sees. This includes such disabilities as mental retardation/intellectual disability, learning disabilities, Asperger’s syndrome, brain injury and others. A person with a cognitive disability may not be able to process information in the same way or as quickly as a person who does not have a cognitive disability.  Because cognitive and physical disabilities can both affect one person, providers will often work with people who have both types of disabilities.  Some developmental disabilities are purely physical, such as congenital deafness or visual impairment. These are not intellectual disabilities. Other developmental disabilities can be caused by cerebral palsy, epilepsy, autism or other disabling conditions. These conditions might or might not include intellectual disabilities.
  • 5. 5  Still other developmental disabilities can result from chromosomal disorders, such as Down Syndrome and fragile X syndrome.  These instances could well include intellectual disabilities—but not always. For example, according to the Centers for Disease Control, males with fragile X syndrome generally have mild to severe intellectual disabilities, whereas females can have average intelligence.  On the other hand, some causes of intellectual disabilities are not physical. These include social & environmental factors such as the level of interaction & stimulation a child has during the developmental period and educational factors such as the availability of family and educational supports that promote mental development and greater adaptive skills.  Some disabilities are preventable. This includes fetal alcohol syndrome caused by the mother consuming alcohol during pregnancy. FAS can cause both physical and cognitive disabilities.
  • 6. ✧ Introduction ✧ Every year, under the federal law known as theIndividualswithDisabilitiesEducationAct (IDEA),millionsofchildrenwithdisabilities receivespecialservicesdesignedtomeettheir uniqueneeds.Forinfantsandtoddlerswith disabilitiesbirththroughtwoandtheirfamilies, special services are provided through an early intervention system. For school-aged children and youth (aged 3 through 21), special education and related services are provided through the school system. These services can be very important in helping children and youth with disabilities develop, learn, and succeed in schoolandothersettings. ✧ Who is Eligible for Services? ✧ Under the IDEA, states are responsible for meeting thespecialneedsofeligiblechildrenwithdisabilities.To find out if a child is eligible for services, he or she must first receive a full and individual initial evaluation. This evaluation is free. Two purposes of the evaluation are: • to see if the child has a disability, as defined by IDEA, and • to learn in more detail what his or her special needs are. Infants and Toddlers, Birth Through Two. Under the IDEA, “infants and toddlers with disabilities“ are defined as children “from birth through age two who needearlyinterventionservicesbecausethey— ✧ areexperiencingdevelopmentaldelays,asmeasured byappropriatediagnosticinstrumentsandproce- dures, in one or more of the following areas: • cognitivedevelopment. • physicaldevelopment,includingvision and hearing. • communicationdevelopment. • socialoremotionaldevelopment. • adaptivedevelopment;or ✧✧✧✧✧ have a diagnosed physical or mental condition that has a high probability of resultingindevelopmentaldelay. The term may also include, if a state chooses, children from birth through age two who are at risk of having substantial developmentaldelaysifearlyintervention services are not provided.” (34 Code of Federal Regulations §303.16) Children Aged 3 Through 9. It is important to know that, under IDEA, states and local educational agencies (LEAs) are allowed to use the term “developmental delay” with children aged 3 through 9, rather than one of the disability categories listed at the top of page 2. This means that, if they choose, states and LEAs do not have to say that a child has a specific disability. For children aged 3 through 9, a state and LEA may choose to include as an eligible “child with a disability” a child whoisexperiencingdevelopmentaldelaysinoneor more of the following areas: • physicaldevelopment, • cognitivedevelopment, • communicationdevelopment, • socialoremotionaldevelopment,or • adaptivedevelopment;and who,becauseofthedevelopmentaldelays,needsspecial educationandrelatedservices. “Developmentaldelays”aredefinedbythestateand mustbemeasuredbyappropriatediagnosticinstru- mentsandprocedures. Children and Youth Aged 3 Through 21. The IDEA lists 13 different disability categories under which 3- through 21-year-olds may be eligible for services. For a child to be eligible for services, the disabilitymustaffectthechild’seduca- tionalperformance.Thedisability categories listed in IDEA are: General Information About Disabilities: Disabilities That Qualify Infants, Toddlers, Children, and Youth for Services under the IDEA National Dissemination Center for Children with Disabilities E-mail: nichcy@aed.org Web: www.nichcy.org P.O. Box 1492 Washington, DC 20013-1492 1.800.695.0285 (Voice/TTY)
  • 7. • autism, • deaf-blindness, • emotional disturbance, • hearing impairment (including deafness), • mental retardation, • multiple disabilities, • orthopedic impairment, • other health impairment, • specific learning disability, • speech or language impairment, • traumatic brain injury, or • visual impairment (including blindness). Under IDEA, a child may not be identified as a “child with a disability” just because he or she speaks a language other than English and does not speak or understand English well. A child may not be identified as having a disability just because he or she has not had enough instruction in math or reading. ✧ How Does the IDEA Define the 13 Disability Categories? ✧ The IDEA provides definitions of the 13 disability categorieslistedabove.Thesefederaldefinitionsguide how states define who is eligible for a free appropriate public education under IDEA. The definitions of disabil- ity terms are as follows: 1. Autism... meansadevelopmentaldisabilitysignificantlyaffecting verbal and nonverbal communication and social interaction,generallyevidentbeforeagethree,that adverselyaffectseducationalperformance.Characteris- tics often associated with autism are engaging in repeti- tiveactivitiesandstereotypedmovements,resistanceto changes in daily routines or the environment, and unusualresponsestosensoryexperiences.Theterm autism does not apply if the child's educational perfor- mance is adversely affected primarily because the child has emotional disturbance, as defined in #4 below. A child who shows the characteristics of autism after age 3 could be diagnosed as having autism if the criteria above are satisfied. 2. Deaf-Blindness... meansconcomitant[simultaneous]hearingand visualimpairments,thecombinationofwhich causessuchseverecommunicationandother developmentalandeducationalneedsthatthey cannotbeaccommodatedinspecialeducation programs solely for children with deafness or childrenwithblindness. 3. Deafness... means a hearing impairment so severe that a child is impairedinprocessinglinguisticinformationthrough hearing,withorwithoutamplification,thatadversely affectsachild'seducationalperformance. 4. Emotional Disturbance... means a condition exhibiting one or more of the follow- ing characteristics over a long period of time and to a marked degree that adversely affects a child's educa- tionalperformance: (a) An inability to learn that cannot be explained by intellectual, sensory, or health factors. (b) An inability to build or maintain satisfactory interpersonalrelationshipswithpeersandteachers. (c) Inappropriate types of behavior or feelings undernormalcircumstances. (d) A general pervasive mood of unhappiness or depression. (e) A tendency to develop physical symptoms or fearsassociatedwithpersonalorschoolproblems. Thetermincludesschizophrenia.Thetermdoesnot apply to children who are socially maladjusted, unless it isdeterminedthattheyhaveanemotionaldisturbance. 5. Hearing Impairment... meansanimpairmentinhearing,whetherpermanentor fluctuating,thatadverselyaffectsachild’seducational performancebutisnotincludedunderthedefinitionof “deafness.” NICHCY: 1- 800-695-0285 General Information About Disabilities (GR3)2
  • 8. 6. Mental Retardation... meanssignificantlysubaveragegeneralintel- lectualfunctioning,existingconcurrently[at thesametime]withdeficitsinadaptive behaviorandmanifestedduringthedevelop- mental period, that adversely affects a child’s educationalperformance. 7. Multiple Disabilities... meansconcomitant[simultaneous]impairments(such asmentalretardation-blindness,mentalretardation- orthopedicimpairment,etc.),thecombinationofwhich causessuchsevereeducationalneedsthattheycannotbe accommodated in a special education program solely for one of the impairments. The term does not include deaf-blindness. 8. Orthopedic Impairment... meansasevereorthopedicimpairmentthatadversely affectsachild’seducationalperformance.Theterm includesimpairmentscausedbyacongenitalanomaly (e.g. clubfoot, absence of some member, etc.), impair- ments caused by disease (e.g., poliomyelitis, bone tuberculosis,etc.),andimpairmentsfromothercauses (e.g., cerebral palsy, amputations, and fractures or burnsthatcausecontractures). 9. Other Health Impairment... meanshavinglimitedstrength,vitality,oralertness, includingaheightenedalertnesstoenvironmental stimuli,thatresultsinlimitedalertnesswithrespectto theeducationalenvironment,that— (a) is due to chronic or acute health problems such asasthma,attentiondeficitdisorderorattentiondeficit hyperactivitydisorder,diabetes,epilepsy,aheart condition,hemophilia,leadpoisoning,leukemia, nephritis, rheumatic fever, and sickle cell anemia; and (b) adversely affects a child’s educational perfor- mance. 10. Specific Learning Disability... means a disorder in one or more of the basic psycho- logical processes involved in understanding or in using language, spoken or written, that may manifest itself in an imperfect ability to listen, think, speak, read, write, spell, or to do mathematical calculations. The term includessuchconditionsasperceptualdisabilities,brain injury, minimal brain dysfunction, dyslexia, and developmentalaphasia.Thetermdoesnotinclude learning problems that are primarily the result of visual, hearing, or motor disabili- ties;ofmentalretardation;ofemotional disturbance;orofenvironmental,cultural, oreconomicdisadvantage. 11. Speech or Language Impairment... meansacommunicationdisordersuchasstuttering, impaired articulation, a language impairment, or a voice impairment that adversely affects a child’s educa- tionalperformance. 12. Traumatic Brain Injury... means an acquired injury to the brain caused by an external physical force, resulting in total or partial functionaldisabilityorpsychosocialimpairment,or both, that adversely affects a child's educational perfor- mance. The term applies to open or closed head injuries resulting in impairments in one or more areas, such as cognition;language;memory;attention;reasoning; abstractthinking;judgment;problem-solving;sensory, perceptual,andmotorabilities;psychosocialbehavior; physicalfunctions;informationprocessing;andspeech. The term does not include brain injuries that are con- genital or degenerative, or brain injuries induced by birthtrauma. 13. Visual Impairment Including Blindness... means an impairment in vision that, even with correc- tion,adverselyaffectsachild’seducationalperformance. The term includes both partial sight and blindness. ✧ Finding Out More About Disabilities ✧ IDEA’sdefinitionsofdisabilitytermshelpstates, schools, service providers, and parents decide if a child is eligible for early intervention or special education and relatedservices.Beyondthesedefinitions,thereisagreat dealofinformationavailableaboutspecificdisabilities, including disabilities not listed in IDEA. NICHCY would be pleased to help you find that information, beginningwith: • our disability fact sheets and other publications on the disabilities listed in IDEA; • contact information for many organizations that focus their work on a particular disability. NICHCY: 1- 800-695-0285General Information About Disabilities (GR3) 3
  • 9. ✧ More About Services ✧ Special services are available to eligible children with disabilities and can do much to help children develop and learn. For infants and toddlers aged birth through two, services are provided through an early intervention system. This system may be run by the HealthDepartmentinthestate,oranotherdepartment such as Education. If you are a parent and you would like to find out more about early intervention in your state, including how to have your child evaluated at no cost to you, try any of these suggestions: • ask your child's pediatrician to put you in touchwiththeearlyinterventionsystemin your community or region; • contact the Pediatrics branch in a local hospital and ask where you should call to find out about early intervention services in your area; • call NICHCY and ask for the contact informa- tion for early intervention in your state. The state office will refer you to the contact person or agency in your area. For children and youth ages 3 through 21, special education and related services are provided through the public school system. Probably the best way to find out about these services is to call your local public school. The school should be able to tell you about special education policies in your area or refer you to a district or county office for this information. If you are a parent who thinks your child may need special education and related services, be sure to ask how to have your child evaluated under IDEA for eligibility. Often there are materials available to tell parents and others more about local and state policies for special educationandrelatedservices. There is a lot to know about early intervention, about special education and related services, and abouttherightsofchildrenwithdisabilitiesunderthe IDEA, our nation's special education law. NICHCY offers many publications, all of which are available on our Web site or by contacting us directly. We can also tell you about materials available from other groups. GR3, June 2002 ✧ Other Sources of Information for Parents ✧ There are many sources of information about servicesforchildrenwithdisabilities.Withinyour community, you may wish to contact: • the Child Find Coordinator for your district or county (IDEA requires that states conduct Child Find activities to identify, locate, and evaluateinfants,toddlers,children,andyouth with disabilities aged birth through 21); • the principal of your child's school; or • the Special Education Director of your child's school district or local school. Any of these individuals should be able to answer specific questions about how to obtain special educa- tion and related services, or early intervention services for your child. In addition, every state has a Parent Training and Information (PTI) center, which is an excellent source of information. The PTI can: • help you learn about early intervention and specialeducationservices; • tell you about what the IDEA requires; • connect you with disability groups and parent groups in the community or state; and • much,muchmore! To find out how to contact your state’s PTI, look at the NICHCY State Resource Sheet for your state (avail- able on our Web site or by contacting us directly). You'll find the PTI listed there, as well as many other informationresources,suchascommunityparent resourcecenters,disability-specificorganizations,and stateagenciesservingchildrenwithdisabilities. This publication is copyright free. Readers are encouraged to copy and share it, but please credit NICHCY. Publication of this document is made possible through a Cooperative Agreement be- tween the Academy for Educational Development and the Office of Special Education Programs of the U.S. Department of Education. The contents of this document do not necessarily reflect the views or policies of the Department of Education, nor does mention of trade names, commercial products, or organizations imply endorsement by the U.S. Government.
  • 10. NICHCYDisabilityFactSheet—No.1 DisabiDisabiDisabiDisabiDisabilitlitlitlitlity Fy Fy Fy Fy Fact Sact Sact Sact Sact Sheet, Nheet, Nheet, Nheet, Nheet, No. 1o. 1o. 1o. 1o. 1 AAAAApripripripripril 2007l 2007l 2007l 2007l 2007 ✧ RRRRRyan’yan’yan’yan’yan’s Ss Ss Ss Ss Storytorytorytorytory ✧ Ryan is a healthy, active two-year- old, but his parents are concerned because he doesn’t seem to be doing the same things that his older sister did at this age. He’s not really talking, yet; although sometimes, he repeats, over and over, words that he hears others say. He doesn’t use words to communi- cate, though. It seems he just enjoys the sounds of them. Ryan spends a lot of time playing by himself. He has a few favorite toys, mostly cars, or anything with wheels on it! And sometimes, he spins himself around as fast as he does the wheels on his cars. Ryan’s parents are really concerned, as he’s started throwing a tantrum whenever his routine has the smallest change. More and more, his parents feel stressed, not knowing what might trigger Ryan’s next upset. Often, it seems Ryan doesn’t notice or care if his family or anyone else is around. His parents just don’t know how to reach their little boy, who seems so rigid and far too set in his ways for his tender young age. After talking with their family doctor, Ryan’s parents call the Early Intervention office in their community and make an appointment to have Ryan evaluated. When the time comes, Ryan is seen by several professionals who play with him, watch him, and ask his parents a lot of questions. When they’re all done, Ryan is diagnosed with a form of autism. As painful as this is for his parents to learn, the early intervention staff try to encourage them. By getting an early diagnosis and beginning treatment, Ryan has the best chance to grow and develop. Of course, there’s a long road ahead, but his parents take comfort in knowing that they aren’t alone and they’re getting Ryan the help he needs. is the National Dissemination Center for Children with Disabilities. NICHCY P.O. Box 1492 Washington, DC 20013 1.800.695.0285 (voice / TTY) 202.884.8200 (voice / TTY) nichcy@aed.org www.nichcy.org AAAAAutututututism / PDDism / PDDism / PDDism / PDDism / PDDAAAAAutututututism / PDDism / PDDism / PDDism / PDDism / PDD
  • 11. ✧ What is AWhat is AWhat is AWhat is AWhat is Autututututism / PDD?ism / PDD?ism / PDD?ism / PDD?ism / PDD? ✧ Autism/Pervasive Developmental Disorder (PDD) is a neuro- logical disorder that affects a child’s ability to communicate, understand language, play, and relate to others. PDD repre- sents a distinct category of developmental disabilities that share many of the same characteristics. The different diagnostic terms that fall within the broad meaning of PDD, include: • AutisticDisorder, • Asperger’sDisorder, • Rett’sDisorder, • ChildhoodDisintegrativeDisorder,and • PervasiveDevelopmentalDisorderNot OtherwiseSpecified(PDD-NOS). While there are subtle differences and degrees of severity among these conditions, treatment and educational needs can be very similar for all of them. In the diagnostic manual used to classify mental disorders, the DSM-IV-TR (American Psychiatric Association, 2000), “Autistic Disorder” is listed under the heading of “Pervasive Developmental Disorders.” A diagnosis of autistic disorder is made when an indi- vidual displays 6 or more of 12 symptoms across three major areas: (a) social interaction, (b) communication, and (c) behavior. When children display similar behaviors but do not meet the specific criteria for autistic disorder (or the other disorders listed above), they may receive a diagnosis of Pervasive Developmental Disorder Not Otherwise Specified, or PDD-NOS. Autism is one of the disabilities specifically de- fined in the Individuals with Disabilities Education Act (IDEA), the federal legislation under which infants, toddlers, children, and youth with disabilitiesreceiveearlyintervention,special education and related services. IDEA defines the disorder as “a developmental disability significantly affecting verbal and nonverbal communication and social interaction, generally evident before age 3, that adversely affects a child’s educational performance. Other characteristics often associated with autism are engagement in repetitive NICHCY: 1.800.695.0285 2 Fact Sheet on Autism (FS1) DDDDDon’t Bon’t Bon’t Bon’t Bon’t Be Se Se Se Se Shy!hy!hy!hy!hy! All of our publications and resource lists are online—help yourself! Visit us at: www.nichcy.org If you’d like personalized assistance, email or call us: nichcy@aed.org 1.800.695.0285 (V/TTY)
  • 12. activities and stereotyped movements, resistance to environmental change or change in daily routines, and unusual responses to sensory experiences.” See 34 Code of Federal Regulations §300.8(c)(1). ✧ HHHHHow Common is Aow Common is Aow Common is Aow Common is Aow Common is Autututututism / PDD?ism / PDD?ism / PDD?ism / PDD?ism / PDD? ✧ Information from the National Institute of Mental Health and the Center for Disease Control and Prevention (CDC) indicates that between 2 to 6 per 1,000 children (from 1 in 500 to 1 in 150) have some form of autism/PDD. These disorders are four times more common in boys than in girls, although Rett’s Disorder has only been reported and diagnosed in girls. The causes of autism or PDD are unknown. Currently, research- ers are investigating areas such as brain development, structure, genetic factors and biochemical imbalance in the brain as possible causes. These disorders are not caused by psychological factors. ✧ WhatWhatWhatWhatWhat are tare tare tare tare thhhhhe Se Se Se Se Signs of Aigns of Aigns of Aigns of Aigns of Autututututism / PDD?ism / PDD?ism / PDD?ism / PDD?ism / PDD? ✧ Some or all of the following characteristics may be observed in mild to severe forms: • Communication problems (e.g., using and understanding language); • Difficulty relating to people, objects, and events; • Unusual play with toys and other objects; • Difficulty with changes in routine or familiar surroundings; and • Repetitive body movements or behavior patterns. Children with autism/PDD vary widely in abilities, intelligence, and behaviors. Some children do not speak; others have language that often includes repeated phrases or conversations. Children with more advanced language skills tend to use a small range of topics and have difficulty with abstract concepts. Repetitive play skills, a limited range of interests, and impaired social skills are generally evident as well. Unusual responses to sensory information—for example, loud noises, lights, certain textures of food or fabrics—are also common. OtOtOtOtOther Hher Hher Hher Hher Helpfelpfelpfelpfelpfululululul Things to KThings to KThings to KThings to KThings to Knownownownownow These NICHCY publications talk about topics important to parents of a child with a disability. Parenting a Child with Special Needs Your Child’s Evaluation Parent to Parent Support Questions Often Asked by Parents About Special Education Services Developing Your Child’s IEP All are available in English and in Spanish— on our Web site or by contacting us. Early diagnosis and appropriate educational programs are very important to children with autism/PDD. NICHCY: 1.800.695.0285 3 Fact Sheet on Autism (FS1)
  • 13. ✧ What Research is Being Done?What Research is Being Done?What Research is Being Done?What Research is Being Done?What Research is Being Done? ✧ Thanks to federal legislation—the Children’s Health Act of 2000 and the Combating Autism Act of 2006—nearly $1 billion over the next five years (2007-2012) has been authorized to combat autism through research, screening, early detection, and early intervention. The Na- tional Institutes of Health and the CDC are the lead entities conducting and coordinating multiple research activities. On the education front, the PDA Center at the University of Washington has several sites around the country that provide training and support to schools and families for students with autism spectrum disorders. Research on instructional interventions for children with a broad range of needs is an ongoing national endeavor. Check NICHCY’s Research to Practice database and OSEP’s discretionary projects directories on our web site to learn more. Additional information can also be found on the web sites included in the list of Organizations at the end of this publication. ✧ What about SWhat about SWhat about SWhat about SWhat about Schoolchoolchoolchoolchool????? ✧ Early diagnosis and intervention are very important for children with autism/PDD. Under the Individuals with Disabilities Education Act (IDEA), children with autism/PDD may be eligible for early intervention services (birth to 3) and an educational program appropriate to their individual needs. In addition to academic instruction, special education programs for students with autism/PDD (ages 3 to 22) focus on improving communication, social, academic, behav- ioral, and daily living skills. Behavior and communication problems that interfere with learning often require the assistance of a professional who is particularly knowledge- able in the autism field to develop and help implement a plan which can be carried out at home and school. The classroom environment should be structured so that the program is consistent and predictable. Students with autism/ PDD learn better and are less confused when information is pre- sented visually as well as verbally. Interaction with nondisabled peers is also important, for these students provide models of appropriate lan- guage, social, and behavioral skills. Consistency and continuity are very important for children with autism/PDD, and parents should always be involved in the development of their child’s program, so that learning activities, experiences, and approaches will be most effective and can be carried over into the home and community. With educational programs designed to meet a student’s individual needs and specialized adult support services in employment and living arrangements, many children and adults with autism/PDD grow to live, work, and participate fully in their communities. NICHCY: 1.800.695.0285 4 Fact Sheet on Autism (FS1) WWWWWananananant Mt Mt Mt Mt More Iore Iore Iore Iore Info?nfo?nfo?nfo?nfo? NICHCY’s State Resources Sheets list organizations in each state related to autism, early intervention, special education, parent centers, and other disability-related issues and concerns. Help yourself! Our “A to Z Topics” include connections to a treasure trove of links to the latest research, publications, confer- ences and more! (Just two of the many resources available to you online and at no cost from NICHCY.)
  • 14. ✧ TTTTTips for Pips for Pips for Pips for Pips for Parenarenarenarenarentststststs ✧ ❑ Learn about autism/PDD. The more you know, the more you can help yourself and your child. Your State’s PTI can be especially helpful. You’ll find resources and organizations at the end of this publication and in NICHCY’s online State Resources Sheet. ❑ Be mindful to interact with and teach your child in ways that are most likely to get a positive response. Learn what is likely to trigger a melt-down for your child, so you can try to minimize them. Remember, the earliest years are the toughest, but it does get better! ❑ Learn from professionals and other par- ents how to meet your child’s special needs, but remember your son or daughter is first and foremost a child; life does not need to become a neverending round of therapies. ❑ If you weren’t born loving highly struc- tured, consistent schedules and routines, ask for help from other parents and professionals on how to make it second nature for you. Behavior, communication, and social skills can all be areas of con- cern for a child with autism and experi- ence tells us that maintaining a solid, loving, and structured approach in caring for your child, can help greatly. ❑ Learn about assistive technology (AT) that can help your child. This may include a simple picture communication board to help your child express needs and desires, or may be as sophisticated as an augmen- tative communication device. ❑ Work with professionals in early interven- tion or in your child’s school to develop an IFSP or an IEP that reflects your child’s needs and abilities. Be sure to include related services, supplementary aids and services, AT, and a positive behavioral support plan, if needed. ❑ Be patient and stay optimistic. Your child, like every child, has a whole lifetime to learn and grow. ✧ TTTTTips for Tips for Tips for Tips for Tips for Teacherseacherseacherseacherseachers ✧ ❑ Learn more about autism/PDD. Check out the research on effective instructional interventions and behavior on NICHCY’s web site. The resources and organizations listed in this publication can also help. ❑ Make sure directions are given step-by- step, verbally, visually, and by providing physical supports or prompts, as needed by the student. Students with autism spectrum disorders often have trouble interpreting facial expressions, body language, and tone of voice. Be as con- crete and explicit as possible in your instructions and feedback to the student. ❑ Find out what the student’s strengths and interests are and emphasize them. Tap into those avenues and create opportuni- ties for success. Give positive feedback and lots of opportunities for practice. ❑ Build opportunities for the student to have social/collaborative interactions through- out the regular school day. Provide sup- port, structure, and lots of feedback. ❑ If behavior is a significant issue for the student, seek help from expert profession- als (including parents) to understand the meanings of the behaviors and to develop a unified, positive approach to resolving them. ❑ Have consistent routines and schedules. When you know a change in routine will occur (e.g., a field trip or assembly) prepare the student by telling him or her what is going to be different and what to expect or do. Reward students for each small suc- cess. ❑ Work together with the student’s parents and other school personnel to create and implement an educational plan tailored to meet the student’s needs. Regularly share information about how the student is doing at school and at home. NICHCY: 1.800.695.0285 5 Fact Sheet on Autism (FS1)
  • 15. Publication of this document is made possible through Cooperative Agreement #H326N030003 between the Academy for Educational Development and the Office of Special Education Programs of the U.S. Department of Education. The contents of this document do not necessarily reflect the views or policies of the Department of Education, nor does mention of trade names, commercial products, or organizations imply endorsement by the U.S. Government. This publication is copyright free. Readers are encouraged to copy and share it, but please credit NICHCY. ✧ ResourcesResourcesResourcesResourcesResources ✧ Baldi, H., & Detmers, D. (2000). Embracing play: Teaching your child with autism [Video]. Bethesda, MD: Woodbine House. (Phone: 800.843.7323; Web: www.woodbinehouse.com) Beytien, A. (2004). Family to family: A guide to living life when a child is diagnosed with an autism spectrum disorder [Video]. Higganum, CT: Starfish Specialty Press. (Phone: 877.782.7347; Web: www.starfishpress.com) Bondy, A., & Frost, L. (2002). A picture’s worth: PECS and other visual communication strategies in autism. Bethesda, MD: Woodbine House. (See contact information above.) Bruey, C.T. (2003). Demystifying autism spectrum disorders: A guide to diagnosis for parents and professionals. Bethesda, MD: Woodbine House. (See contact information above.) Cafiero, J.M. (2005). Meaningful exchanges for people with autism: An introduction to augmentative & alternative communication. Bethesda, MD: Woodbine House. (See contact information above.) DuCharme, R., & Gullotta, T.P. (Eds.) (2004). Asperger syndrome: A guide for professionals and families. New York: Springer Publishers. (Phone: 800.777.4643; Web: www.springeronline.com) Glasberg, B. (2005). Functional behavior assessment for people with autism: Making sense of seemingly senseless behavior. Bethesda, MD: Woodbine House. (See contact information above.) Journal of Autism and Developmental Disorders. New York: Springer Publishers. (See contact information above.) Mesibov, G.B., Shea, V., & Schopler, E. (2004). The TEACCH approach to autism spectrum disorders. New York: Springer Publishers. (See contact information above.) O’Brien, M., & Daggett, J.A. (2006). Beyond the autism diagnosis: A professional’s guide to helping families. Baltimore, MD: Brookes Publish- ing (Phone: 800.638.3775; Web: www.brookespublishing.com) Richman, S. (2000). Raising a child with autism: A guide to applied behavior analysis for parents. London: Jessica Kingsley Publishers. (Web: www.jkp.com/) Tsai, L.Y. (1998). Pervasive developmental disorders. Washington, DC: NICHCY. (Available online at: www.nichcy.org/pubs/factshe/fs20txt.htm) Volkmar, F.R., & Wiesner, L.A. (2003) Healthcare for children on the autism spectrum: A guide to medical, nutritional, and behavioral issues. Bethesda, MD: Woodbine House. (See contact information above.) Wiseman, N.D. (2006). Could it be autism? New York: Broadway Books. (Web: www.broadwaybooks.com) For more information, books, and videos on autism spectrum disor- ders, the Autism Society of North Carolina Bookstore has over 400 titles in their collection. (Phone: 919.743.0204; Web: www.autismbookstore.com) ✧ OrganizatOrganizatOrganizatOrganizatOrganizationsionsionsionsions ✧ (★ indicates member of OSEP’s Technical Assistance and Dissemination Network) Autism Information Center at CDC Phone: 800.311.3435 Web: www.cdc.gov/ncbddd/autism/index.htm Autism Society of America Phone:800.328.8476 Web: www.autism-society.org Autism Treatment Network Web: www.autismtreatmentnetwork.org ★ Center on Positive Behavioral Interventions and Supports (PBIS) Web: www.pbis.org ★ Center for Implementing Technology in Education (CITEd) Web: www.citededucation.org Cure Autism Now Phone:888.828.8476 Web: www.cureautismnow.org ★ Family Center on Technology and Disability Web: www.fctd.info/ Indiana Resource Center for Autism Web: www.iidc.indiana.edu/irca Interactive Autism Network Web: www.ianproject.org/ MAAP Services for Autism & Asperger Syndrome Web: www.asperger.org National Alliance for Autism Research Phone:888.777.6227 Web: www.naar.org/ NIH Autism Research Network Web: www.autismresearchnetwork.org/AN/ ★ NIMAS Development and Technical Assistance Centers Web: http://nimas.cast.org O.A.S.I.S. Online Asperger Syndrome Information and Support Web: www.aspergersyndrome.org/ ★ Professional Development in Autism Center Web: depts.washington.edu/pdacent/ Yale Developmental Disabilities Clinic Web: www.autism.fm FS1, April 2007
  • 16. NICHCYDisabilityFactSheet—No.7 DisabiDisabiDisabiDisabiDisabilitlitlitlitlity Fy Fy Fy Fy Fact Sact Sact Sact Sact Sheet, Nheet, Nheet, Nheet, Nheet, No. 7o. 7o. 7o. 7o. 7 JJJJJanuary 2004anuary 2004anuary 2004anuary 2004anuary 2004 4 SSSSSararararara’a’a’a’a’s Ss Ss Ss Ss Storytorytorytorytory 4 When Sara was in the first grade, her teacher started teaching the students how to read. Sara’s parents were really surprised when Sara had a lot of trouble. She was bright and eager, so they thought that reading would come easily to her. It didn’t. She couldn’t match the letters to their sounds or combine the letters to create words. Sara’s problems continued into second grade. She still wasn’t reading, and she was having trouble with writing, too. The school asked Sara’s mom for permission to evaluate Sara to find out what was causing her problems. Sara’s mom gave permission for the evalua- tion. The school conducted an evaluation and learned that Sara has a learning disability. She started getting special help in school right away. Sara’s still getting that special help. She works with a reading specialist and a resource room teacher every day. She’s in the fourth grade now, and she’s made real progress! She is working hard to bring her reading and writing up to grade level. With help from the school, she’ll keep learning and doing well. Learning disability is a general term that describes specific kinds of learning problems. A learning disability can cause a person to have trouble learning and using certain skills. The skills most often affected are: reading, writing, listening, speaking, reasoning, and doing math. Learning disabilities (LD) vary from person to person. One person with LD may not have the same kind of learning problems as another person with LD. Sara, in our example above, has trouble with reading and writing. Another person with LD may have problems with understanding math. Still another per- is the National Dissemination Center for Children with Disabilities. NICHCY P.O. Box 1492 Washington, DC 20013 1.800.695.0285 (Voice / TTY) 202.884.8200 (Voice / TTY) nichcy@aed.org www.nichcy.org LLLLLearning Disabiearning Disabiearning Disabiearning Disabiearning DisabilitlitlitlitlitiesiesiesiesiesLLLLLearning Disabiearning Disabiearning Disabiearning Disabiearning Disabilitlitlitlitlitiesiesiesiesies 4 What are LWhat are LWhat are LWhat are LWhat are Learning Disabiearning Disabiearning Disabiearning Disabiearning Disabilitlitlitlitlities?ies?ies?ies?ies? 4
  • 17. NICHCY: 1.800.695.0285 2 Fact Sheet on Learning Disabilities (FS7) son may have trouble in each of these areas, as well as with understanding what people are saying. Researchers think that learning disabilities are caused by differences in how a person’s brain works and how it processes information. Children with learning disabilities are not “dumb” or “lazy.” In fact, they usually have average or above average intelligence. Their brains just process information differently. The definition of “learning disability” in the box on page 4 comes from the Individuals with Disabilities Education Act (IDEA). The IDEA is the federal law that guides how schools provide special education and related services to children with disabilities. The special help that Sara is receiving is an example of special education. There is no “cure” for learning disabilities. They are life-long. However, children with LD can be high achievers and can be taught ways to get around the learning disability. With the right help, children with LD can and do learn successfully. Very common! As many as 1 out of every 5 people in the United States has a learning disability. Almost 3 million children (ages 6 through 21) have some form of a learning disability and receive special education in school. In fact, over half of all children who receive special education have a learning disability (Twenty- fourth Annual Report to Congress, U.S. Department of Education, 2002). There is no one sign that shows a person has a learning disability. Experts look for a noticeable difference between how well a child does in school and how well he or she could do, given his or her intelligence or ability. There are also certain clues that may mean a child has a learning disability. We’ve listed a few below. Most relate to elementary school tasks, because learning disabilities tend to be identified in elementary school. A child probably won’t show all of these signs, or even most of them. However, if a child shows a number of these problems, then parents and the teacher should consider the possibility that the child has a learning disability. When a child has a learning disability, he or she: • may have trouble learning the alphabet, rhyming words, or connecting letters to their sounds; • may make many mistakes when reading aloud, and repeat and pause often; • may not understand what he or she reads; • may have real trouble with spelling; • may have very messy handwriting or hold a pencil awkwardly; • may struggle to express ideas in writing; • may learn language late and have a limited vocabu- lary; • may have trouble remembering the sounds that letters make or hearing slight differences between words; • may have trouble understanding jokes, comic strips, and sarcasm; • may have trouble following directions; • may mispronounce words or use a wrong word that sounds similar; • may have trouble organizing what he or she wants to say or not be able to think of the word he or she needs for writing or conversation; • may not follow the social rules of conversation, such as taking turns, and may stand too close to the listener; • may confuse math symbols and misread numbers; • may not be able to retell a story in order (what happened first, second, third); or • may not know where to begin a task or how to go on from there. If a child has unexpected problems learning to read, write, listen, speak, or do math, then teachers and parents may want to investigate more. The same is true if the child is struggling to do If a child has unexpected problems learning to read, write, listen, speak, or do math, then teachers and parents may want to investi- gate more. The same is true if the child is struggling to do any one of these skills. The child may need to be evaluated to see if he or she has a learning disability. 4 What About SWhat About SWhat About SWhat About SWhat About Schoolchoolchoolchoolchool????? 4 Learning disabilities tend to be diagnosed when children reach school age. This is because school focuses on the very things that may be difficult for the child—reading, writing, math, listening, speaking, reasoning. Teachers and parents notice that the child is not learning as expected. The school may ask to evaluate the child to see what is causing the problem. Parents can also ask for their child to be evaluated. With hard work and the proper help, children with LD can learn more easily and successfully. For 4 How Common are Learning Disabilities?How Common are Learning Disabilities?How Common are Learning Disabilities?How Common are Learning Disabilities?How Common are Learning Disabilities? 4 4 What AWhat AWhat AWhat AWhat Are tre tre tre tre the She She She She Signs of a Ligns of a Ligns of a Ligns of a Ligns of a Learning Disabiearning Disabiearning Disabiearning Disabiearning Disabilitlitlitlitlity?y?y?y?y? 4
  • 18. Fact Sheet on Learning Disabilities (FS7) 3 NICHCY: 1.800.695.0285 4 TTTTTips for Pips for Pips for Pips for Pips for Parenarenarenarenarentststststs 4 u Learn about LD. The more you know,the more you can help yourself and your child. See the list of resources and organiza- tions at the end of this publica- tion. u Praise your child when he or she does well. Children with LD are often very good at a variety of things. Find out what your child really enjoys doing, such as dancing, playing soccer, or working with computers. Give your child plenty of opportunities to pursue his or her strengths and talents. u Find out the ways your child learns best. Does he or she learn by hands-on practice, looking, or listening? Help your child learn through his or her areas of strength. u Let your child help with household chores. These can build self-confidence and concrete skills. Keep instructions simple, break down tasks into smaller steps, and reward your child’s efforts with praise. u Make homework a priority. Read more about how to help your child be a success at home- work. (See resource list on page 4.) u Pay attention to your child’s mental health (and your own!). Be open to counseling, which can help your child deal with frustration, feel better about himself or herself, and learn more about social skills. u Talk to other parents whose children have learning disabilities. Parents can share practical advice and emotional support. Call NICHCY (1.800.695.0285) and ask how to find parent groups near you. Also let us put you in touch with the parent training and information (PTI) center in your state. u Meet with school personnel and help develop an educational plan to address your child’s needs. Plan what accommodations your child needs, and don’t forget to talk about assistive technology! u Establish a positive working relationship with your child’s teacher. Through regular communi- cation, exchange information about your child’s progress at home and at school. 4 TTTTTips for Tips for Tips for Tips for Tips for Teacherseacherseacherseacherseachers 4 u Learn as much as you can about the different types of LD. The resources and organizations on page 4 can help you identify specific techniques and strategies to support the student education- ally. u Seize the opportunity to make an enormous difference in this student’s life! Find out and emphasize what the student’s strengths and interests are. Give the student positive feedback and lots of opportunities for practice. u Review the student’s evaluation records to iden- tify where specifically the student has trouble. Talk to specialists in your school (e.g., special educa- tion teacher) about methods for teaching this student. Provide instruction and accommoda- tions to address the student’s special needs. Examples include:  breaking tasks into smaller steps, and giving directions verbally and in writing;  giving the student more time to finish school- work or take tests;  letting the student with reading problems use textbooks-on-tape (available through Record- ing for the Blind and Dyslexic, listed on page 4);  letting the student with listening difficulties borrow notes from a classmate or use a tape recorder; and  letting the student with writing difficulties use a computer with specialized software that spell checks, grammar checks, or recognizes speech. u Learn about the different testing modifications that can really help a student with LD show what he or she has learned. u Teach organizational skills, study skills, and learning strategies. These help all students but are particularly helpful to those with LD. u Work with the student’s parents to create an educa- tional plan tailored to meet the student’s needs. u Establish a positive working relationship with the student’s parents. Through regular communica- tion, exchange information about the student’s progress at school.
  • 19. school-aged children (including preschoolers), special education and related services are important sources of help. School staff work with the child’s parents to develop an Individualized Education Program, or IEP. This document describes the child’s unique needs. It also describes the special education services that will be provided to meet those needs. These services are pro- vided at no cost to the child or family. Supports or changes in the classroom (sometimes called accommodations) help most students with LD. Some common accommodations are listed in the “Tips for Teachers” box on page 3. Assistive technology can also help many students work around their learning disabilities. Assistive technology can range from “low-tech” equipment such as tape recorders to “high-tech” tools such as reading machines (which read books aloud) and voice recognition systems (which allow the student to “write” by talking to the computer). It’s important to remember that a child may need help at home as well as in school. The resources listed below will help families and teachers learn more about the many ways to help children with learning disabilities. 4 ResourcesResourcesResourcesResourcesResources 4 Cronin, E.M. (1997). Helping your dyslexic child: A step-by-step program for helping your child improve reading, writing, spelling, comprehension, and self-esteem. Roseville, CA: Prima. (Phone: 800.726.0600. Web: www.primapublishing.com/index.pperl) Currie, P.S., & Wadlington, E.M. (2000). The source for learning disabilities. East Moline, IL: LinguiSystems. (Phone: 800.776.4332. Web: www.linguisystems.com) Hall, S., & Moats, L.C. (1998). Straight talk about reading: How parents can make a difference during the early years. New York: McGraw Hill/Contemporary. (Phone: 877.833.5524. Web: http://books.mcgraw-hill.com) Harwell, J.M. (2002). Complete learning disabilities handbook: Ready-to-use strategies and activities for teaching students with learning disabilities (2nd ed.). West Nyack, NJ: John Wiley & Sons. (Phone: 877.762.2974. Web: www.josseybass.com) Lerner, J.W. (2003). Learning disabilities: Theories, diagnosis, and teaching strategies (9th ed.). Boston: Houghton Mifflin. (Phone: 877.859.7241. Web: http:// college.hmco.com/students/index.html) Mercer, C.D., & Mercer, A.R. (2001). Teaching students with learning problems (6th ed.). Upper Saddle River, NJ: Prentice Hall. (Phone: 800.282.0693. Web: vig.prenhall.com) Silver, L. (1998). The misunderstood child: Understand- ing and coping with your child's learning disabilities (3rd ed.). New York: Three Rivers Press. (To find a local or online bookseller go to: www.randomhouse.com/ reader_resources/ ordering. html) Smith, C., & Strick, L.W. (1999). Learning disabilities from A to Z. New York: Simon & Schuster. (To find a local or online bookseller go to: www.simonsays.com) Smith, S. (1995). No easy answers (Rev. ed.). New York: Bantam. (To find a local or online bookseller go to: www.randomhouse.com/reader_resources/ordering.html) 4 OrganizationsOrganizationsOrganizationsOrganizationsOrganizations 4 Division for Learning Disabilities (DLD), The Council for Exceptional Children (CEC), 1110 North Glebe Road, Suite 300, Arlington, VA 22201-5704. Phone: 703.620.3660. E-mail: cec@cec.sped.org; Web: www.dldcec.org International Dyslexia Association, Chester Building, Suite 382, 8600 LaSalle Road, Baltimore, MD 21286-2044. Phone: 410.296.0232; 800.222.3123. E-mail: info@interdys.org; Web: www.interdys.org LDOnline - Website Only: www.ldonline.org Learning Disabilities Association of America (LDA), 4156 Library Road, Pittsburgh, PA 15234-1349. Phone: 412.341.1515. E-mail: info@ldaamerica.org; Web: www.ldaamerica.org National Center for Learning Disabilities, 381 Park Avenue South, Suite 1401, New York, NY 10016. Phone: 212.545.7510; 888.575.7373. Web: www.ld.org Recording for the Blind and Dyslexic, 20 Roszel Road, Princeton, NJ 08540. Phone: 609.452.0606; 866.732.3585. E-mail: custserv@rfbd.org Web: www.rfbd.org Schwab Learning - Website only: www.schwablearning.org This publication is copyright free. Readers are encouraged to copy and share it, but please credit the National Dissemination Center for Children with Disabilities (NICHCY). FS7, January 2004 Our nation’s special education law, the Individuals with Disabilities Education Act, defines a specific learning disabil- ity as . . . “. . . a disorder in one or more of the basic psychological processes involved in understanding or in using language, spoken or written, that may manifest itself in an imperfect ability to listen, think, speak, read, write, spell, or do mathematical calculations, including conditions such as perceptual disabilities, brain injury, minimal brain dys- function, dyslexia, and developmental aphasia.” However, learning disabilities do not include, “…learning problems that are primarily the result of visual, hearing, or motor disabilities, of mental retardation, of emotional disturbance, or of environmental, cultural, or economic disadvantage.” 34 Code of Federal Regulations §300.7(c)(10)
  • 20. The National Dissemination Center for Children with Disabilities Intellectual Disability (formerly Mental Retardation) Matthew's Story Matt is 15 years old. Because Matt has an intellectual disability, he has been receiving special education services since elementary school. These services have helped him tremendously, because they are designed to fit his special learning needs. Last year he started high school. He, his family, and the school took a good hard look at what he wants to do when secondary school is over. Does he want more education? A job? Does he have the skills he needs to live on his own? Answering these questions has helped Matt and the school plan for the future. He's always been interested in the outdoors, in plants, and especially in trees. He knows all the tree names and can recognize them by their leaves and bark. So this year he's learning about jobs like forestry, landscaping, and grounds maintenance. Next year he hopes to get a part-time job. He's learning to use public transportation, so he'll be able to get to and from the job. Having an intellectual disability makes it harder for Matt to learn new things. He needs things to be very concrete. But he's determined. He wants to work outside, maybe in the park service or in a greenhouse, and he's getting ready! What is Intellectual Disability? Intellectual disability is a term used when a person has certain limitations in mental functioning and in skills such as communicating, taking care of him or herself, and social skills. These limitations will cause a child to learn and develop more slowly than a typical child. Children with intellectual disability may take longer to learn to speak, walk, and take care of their personal needs such as dressing or eating. They are likely to have trouble learning in school. They will learn, but it will take them longer. There may be some things they cannot learn. What Causes Intellectual Disability? Doctors have found many causes of intellectual disability. The most common are: Genetic conditions. Sometimes intellectual disability is caused by abnormal genes inherited from parents, errors when genes combine, or other reasons. Examples of genetic conditions are Down syndrome, fragile X syndrome, and phenylketonuria (PKU). Problems during pregnancy. Intellectual disability can result when the baby does not develop inside the mother properly. For example, there may be a problem with the way the baby's cells divide as it grows. A woman who drinks alcohol or gets an infection like rubella during pregnancy may also have a baby with intellectual disability. Problems at birth. If a baby has problems during labor and birth, such as not getting enough oxygen, he or she may have intellectual disability. Health problems. Diseases like whooping cough, the measles, or meningitis can cause an intellectual disability. Intellectual disabilities can also be caused by extreme malnutrition (not eating right), not getting enough medical care, or by being exposed to poisons like lead or mercury.
  • 21. Intellectual disability is not a disease. You can't catch it from anyone. Mental retardation or intellectual disability is also not a type of mental illness, like depression. There is no cure for intellectual disability. However, most children with intellectual disability can learn to do many things. It just takes them more time and effort than other children. How is Intellectual Disability Diagnosed? Intellectual disability is the currently preferred term for the disability historically referred to as mental retardation. Although the preferred name is intellectual disability, the authoritative definition and assumptions put forth by the American Association on Intellectual and Developmental Disabilities (AAIDD) remain the same as those found in the Mental Retardation: Definition, Classification and Systems of Supports manual (Luckasson et al., 2002). The term intellectual disability covers the same population of individuals who were diagnosed previously with mental retardation in number, kind, level, type, and duration of the disability and the need of people with this disability for individualized services and supports. Intellectual disability is diagnosed by looking at two main things. These are: the ability of a person's brain to learn, think, solve problems, and make sense of the world (called IQ or intellectual functioning); and whether the person has the skills he or she needs to live independently (called adaptive behavior, or adaptive functioning). Intellectual functioning, or IQ, is usually measured by a test called an IQ test. The average score is 100. People scoring below 70 to 75 are thought to have an intellectual disability. To measure adaptive behavior, professionals look at what a child can do in comparison to other children of his or her age. Certain skills are important to adaptive behavior. These are: daily living skills, such as getting dressed, going to the bathroom, and feeding one's self; communication skills, such as understanding what is said and being able to answer; social skills with peers, family members, adults, and others. To diagnose an intellectual disability, professionals look at the person's mental abilities (IQ) and his or her adaptive skills. Both of these are highlighted in the definition provided in the Individuals with Disabilities Education Act (IDEA). The IDEA is the federal law that guides how schools provide early intervention and special education and related services to children with disabilities. IDEA's Definition of "Mental Retardation" Our nation's special education law, the IDEA, defines mental retardation as . . . ". . . significantly subaverage general intellectual functioning, existing concurrently with deficits in adaptive behavior and manifested during the developmental period, that adversely affects a child's educational performance." [34 Code of Federal Regulations §300.8(c)(6)] Providing services to help individuals with an intellectual disability has led to a new understanding of the disability. After the initial diagnosis of intellectual disability is made, we look at a person's strengths and weaknesses. We also look at how much support or help the person needs to get along at home, in school, and in the community. This approach gives a realistic picture of each individual. It also recognizes that the "picture" can change. As the person grows and learns, his or her ability to get along in the world grows as ell.w
  • 22. How Common is Intellectual Disability? As many as 3 out of every 100 people in the country have an intellectual disability (The Arc, 2001). Nearly 614,000 children ages 3 to 21 have some level of intellectual disability and need special education in school (Twenty-sixth Annual Report to Congress, U.S. Department of Education, 2006). In fact, 1 out of every 10 children who need special education has some form of intellectual disability. What Are the Signs of Intellectual Disability? There are many signs of intellectual disability. For example, children with intellectual disability may: sit up, crawl, or walk later than other children; learn to talk later, or have trouble speaking, find it hard to remember things, not understand how to pay for things, have trouble understanding social rules, have trouble seeing the consequences of their actions, have trouble solving problems, and/or have trouble thinking logically. About 87% of people with intellectual disability will only be a little slower than average in learning new information and skills. When they are children, their limitations may not be obvious. They may not even be diagnosed as having intellectual disability until they get to school. As they become adults, many people with intellectual disability can live independently. Other people may not even consider them as having an intellectual disability. The remaining 13% of people with intellectual disability score below 50 on IQ tests. These people will have more difficulty in school, at home, and in the community. A person with more severe intellectual disability will need more intensive support his or her entire life. Every child with intellectual disability is able to learn, develop, and grow. With help, all children with intellectual disability can live a satisfying life. What About School? A child with an intellectual disability can do well in school but is likely to need individualized help. Fortunately, states are responsible for meeting the educational needs of children with disabilities. For children up to age three, services are provided through an early intervention system. Staff work with the child's family to develop what is known as an Individualized Family Services Plan, or IFSP. The IFSP will describe the child's unique needs. It also describes the services the child will receive to address those needs. The IFSP will emphasize the unique needs of the family, so that parents and other family members will know how to help their young child with an intellectual disability. Early intervention services may be provided on a sliding-fee basis, meaning that the costs to the family will depend upon their income. In some states, early intervention services may be at no cost to parents. For eligible school-aged children (including preschoolers), special education and related services are made available through the school system. School staff will work with the child's parents to develop an Individualized Education Program, or IEP. The IEP is similar to an IFSP. It describes the child's unique needs and the services that have been designed to meet those needs. Special education and related services are provided at no cost to parents. Many children with an intellectual disability need help with adaptive skills, which are skills needed to live, work, and play in the community. Teachers and parents can help a child work on these skills at both school and home. Some of these skills include: communicating with others; taking care of personal needs (dressing, bathing, going to the bathroom); health and safety;
  • 23. home living (helping to set the table, cleaning the house, or cooking dinner); social skills (manners, knowing the rules of conversation, getting along in a group, playing a game); reading, writing, and basic math; and as they get older, skills that will help them in the workplace. Supports or changes in the classroom (called adaptations) help most students with an intellectual disability. Some common changes that help students are listed under "Tips for Teachers." The resources below also include ways for parents to help their child with an intellectual disability. Tips for Parents Learn about intellectual disability. The more you know, the more you can help yourself and your child. See the resources and organizations in the boxes at the right. Encourage independence in your child. For example, help your child learn daily care skills, such as dressing, feeding him or herself, using the bathroom, and grooming. Give your child chores. Keep her age, attention span, and abilities in mind. Break down jobs into smaller steps. For example, if your child's job is to set the table, first ask her to get the right number of napkins. Then have her put one at each family member's place at the table. Do the same with the utensils, going one at a time. Tell her what to do, step by step, until the job is done. Demonstrate how to do the job. Help her when she needs assistance. Give your child frequent feedback. Praise your child when he or she does well. Build your child's abilities. Find out what skills your child is learning at school. Find ways for your child to apply those skills at home. For example, if the teacher is going over a lesson about money, take your child to the supermarket with you. Help him count out the money to pay for your groceries. Help him count the change. Find opportunities in your community for social activities, such as scouts, recreation center activities, sports, and so on. These will help your child build social skills as well as to have fun. Talk to other parents whose children have intellectual disability. Parents can share practical advice and emotional support. Call NICHCY (1.800.695.0285) and ask how to find a parent group near you. Meet with the school and develop an educational plan to address your child's needs. Keep in touch with your child's teachers. Offer support. Find out how you can support your child's school learning at home. Tips for Teachers Learn as much as you can about intellectual disability. The organizations and resources listed in the boxes at the right will help you identify specific techniques and strategies to support the student educationally. We've also listed some strategies below. Recognize that you can make an enormous difference in this student's life! Find out what the student's strengths and interests are, and emphasize them. Create opportunities for success. If you are not part of the student's Individualized Education Program (IEP) team, ask for a copy of his or her IEP. The student's educational goals will be listed there, as well as the services and classroom accommodations he or she is to receive. Talk to specialists in your school (e.g., special educators), as necessary. They can help you identify effective methods of teaching this student, ways to adapt the curriculum, and how to address the student's IEP goals in your classroom. Be as concrete as possible. Demonstrate what you mean rather than just giving verbal directions. Rather than just relating new information verbally, show a picture. And rather than just showing a picture, provide the student with hands-on materials and experiences and the opportunity to try things out. Break longer, new tasks into small steps. Demonstrate the steps. Have the student do the steps, one at a time. Provide assistance, as necessary. Give the student immediate feedback.
  • 24. Teach the student academic and life skills such as daily living, social skills, and occupational awareness and exploration, as appropriate. Involve the student in group activities or clubs. Work together with the student's parents and other school personnel to create and implement an educational plan tailored to meet the student's needs. Regularly share information about how the student is doing at school and at home. Contact NICHCY P.O. Box 1492 Washington, DC 20013 Tel: (800) 695-0285 Fax: (202) 884-8441 nichcy@aed.org Publication of this Web resource page is made possible through Cooperative Agreement #H326N030003 between AED and the Office of Special Education Programs of the U.S. Department of Education (Office of Special Education Programs of the U.S. Department of Education (OSEP). The contents of this document do not necessarily reflect the views or policies of the Department of Education, nor does mention of trade names, commercial products, or organizations imply endorsement by the U.S. Government. Readers are encouraged to copy and share this information, but please credit the National Dissemination Center for Children with Disabilities (NICHCY). NICHCY relies on feedback from users to enhance our collection, development, and dissemination of information. We encourage you to share your ideas and feedback with us! Please contact us at our email address (nichcy@aed.org) or visit the NICHCY Feedback Page at: www.nichcy.org/Pages/Feedback.aspx. NICHCY thanks our Project Officer, Dr. Judy L. Shanley, at the Office of Special Education Programs (OSEP), U.S. Department of Education. Publication of this Web resource page is made possible through Cooperative Agreement #H326N030003 between the Academy for Educational Development and the Office of Special Education Programs of the U.S. Department of Education. The contents of this document do not necessarily reflect the views or policies of the Department of Education, nor does mention of trade names, commercial products, or organizations imply endorsement by the U.S. Government. NICHCY · P.O. Box 1492 · Washington, DC 20013 (800) 695-0285 v/tty · (202) 884-8441 fax nichcy@aed.org · www.nichcy.org
  • 25. NICHCYDisabilityFactSheet—No.10 DisabiDisabiDisabiDisabiDisabilitlitlitlitlity Fy Fy Fy Fy Fact Sact Sact Sact Sact Sheet, Nheet, Nheet, Nheet, Nheet, No. 10o. 10o. 10o. 10o. 10 JJJJJanuary 2004anuary 2004anuary 2004anuary 2004anuary 2004 4 DDDDDefefefefefinitinitinitinitinitionionionionion 4 Peoplewithseveredisabilitiesare those who traditionally have been labeled as having severe or profound mental retardation. These people require ongoing extensive support in more than one major life activity in order to participate in integrated community settings and enjoy the quality of life available to people with fewer or no disabilities. They frequently have additional disabilities, including movement difficulties, sensory losses, and behavior problems. 4 IIIIIncidencencidencencidencencidencencidence 4 In the 2000-2001 school year, the states reported to the U.S. Department of Education that they were providing special education and related services to 122,559 students with multiple disabilities(Twenty-fourthAnnualReport to Congress, 2002). 4 CharCharCharCharCharacteristacteristacteristacteristacteristicsicsicsicsics 4 Peoplewithsevereormultiple disabilities may exhibit a wide range of characteristics, depending on the combination and severity of disabili- ties, and the person’s age. There are, however, some traits they may share, including: • Limited speech or communica- tion; • Difficulty in basic physical mobility; • Tendency to forget skills through disuse; • Trouble generalizing skills from one situation to another; and • A need for support in major life activities, e.g., domestic, leisure, community use, vocational. SSSSSevevevevevere/Mere/Mere/Mere/Mere/Multultultultultipleipleipleipleiple DisabiDisabiDisabiDisabiDisabilitlitlitlitlitiesiesiesiesies SSSSSevevevevevere/Mere/Mere/Mere/Mere/Multultultultultipleipleipleipleiple DisabiDisabiDisabiDisabiDisabilitlitlitlitlitiesiesiesiesies is the National Dissemination Center for Children with Disabilities. NICHCY P.O. Box 1492 Washington, DC 20013 1.800.695.0285 (Voice / TTY) 202.884.8200 (Voice / TTY) nichcy@aed.org www.nichcy.org
  • 26. NICHCY: 1.800.695.0285 2 Fact Sheet on Severe Disabilities (FS10) DDDDDon’t Bon’t Bon’t Bon’t Bon’t Be Se Se Se Se Shy!hy!hy!hy!hy! All of our publications and resource lists are online— help yourself! Visit us at: www.nichcy.org If you’d like personalized assistance, email or call us: nichcy@aed.org 1.800.695.0285 (V/TTY) 4 MMMMMedical Iedical Iedical Iedical Iedical Implicatmplicatmplicatmplicatmplicationsionsionsionsions 4 A variety of medical problems may accompany severe disabilities.Examplesincludeseizures,cerebralpalsy, sensory loss, hydrocephalus, and scoliosis. These conditions should be considered when establishing services. A multidisciplinary team consisting of the student’s parents, educational specialists, and medical specialists in the areas in which the individualdemonstratesproblemsshouldwork together to plan and coordinate necessary services. 4 EEEEEducatducatducatducatducational Iional Iional Iional Iional Implicatmplicatmplicatmplicatmplicationsionsionsionsions 4 In the past, students with severe and/or multiple disabilities were routinely excluded from public schools. Since the implementation of Public Law 94-142 (the Education of the Handicapped Act, now called the Individuals with Disabilities Education Act, or IDEA), public schools now serve large numbers of students with severe and/or multiple disabilities. Educational programming is likely to begin as early as infancy. At that time, as well as later on, the primary focus is upon increasing the child’s independence. In order to be effective, educational programs need to incorporate a variety of components to meet the consider- able needs of individuals with severe and/or multiple disabilities. Programs should asseess needs in four major areas: domestic, leisure/recreational, community, and vocational. These assessments enable the identification of functional objectives (objectives which will result in the learner’s increased skill and indepen- dence in dealing with the routine activities of his/her life). Instruction should include: Expression of choice; communication; functional skill development; and age-appropriate social skills training. Related services are of great impor- tance, and the multidisciplinary approach is crucial. Appropriate people such as speech and language therapists, physical and occupational therapists, and medical
  • 27. NICHCY: 1.800.695.0285 3 Fact Sheet on Severe Disabilities (FS10) Other HelpfulOther HelpfulOther HelpfulOther HelpfulOther Helpful Things to KThings to KThings to KThings to KThings to Knownownownownow These NICHCY publications talk about topics important to parents of a child with a disability. Parenting a Child with Special Needs Your Child’s Evaluation Parent to Parent Support Questions Often Asked by Parents About Special Education Services Developing Your Child’s IEP All are available in English and in Spanish— on our Web site or by contacting us. specialists need to work closely with classroom teachers and parents. Because of problems with skill generaliza- tion, related services are best offered during the natural routine in the school and community rather than removing a student from class for isolated therapy. Frequently, classroom arrangements must take into consideration students’ needs for medications, special diets, or special equipment. Adaptive aids and equipment enable students to increase their range of functioning. For example, in recent years computers have become effective communication devices. Other aids include: wheelchairs, typewriters, headsticks (head gear), clamps, modified handles on cups and silverware, and communication boards. Computerized communi- cation equipment and specially built vocational equipment also play important roles in adapting working environments for people with serious movement limitations. Integration with nondisabled peers is another important component of the educational setting. Attending the same school and participating in the same activities as their nondisabled peers are crucial to the development of social skills and friendships for people with severe disabilities. Integration also benefits nondisabled peers and professionals through positive attitude change. Beginning as early as the elementary school years, community- based instruction is an important characteristic of educational program- ming. In order to increase the student’s ability to generalize (transfer) skills to appropriate situations, this type of instruction takes place in the actual setting where the skills will be used. As students grow older, increasing time is spent in the community; high school students may spend as much as 90 percent of their day there. Programs should draw on existing adult services in the community, including group homes, vocational programs, and recreational settings. To be effective, educationalprograms need to incorporate a variety of components to meet the considerable needs of individuals with severe and/or multiple disabilities.
  • 28. Publication of this document is made possible through Cooperative Agreement #H326N030003 between the Academy for Educational Development and the Office of Special Education Programs of the U.S. Department of Education. The contents of this document do not necessarily reflect the views or policies of the Department of Education, nor does mention of trade names, commercial products, or organizations imply endorsement by the U.S. Government. This publication is copyright free. Readers are encouraged to copy and share it, but please credit NICHCY. FS10, January 2004 4 In light of the current Vocational Rehabilitation Act and the practice of supported employment, schools are now using school-to-work transition planning and working toward job placement in integrated, competitive settings rather than sheltered employment and day activity centers. 4 ResourcesResourcesResourcesResourcesResources 4 Downing, J.E. (2002). Including students with severe and multiple disabilities in typical classrooms: Practical strategies for teachers (2nd ed.). Baltimore, MD: Paul H. Brookes. (Phone: 800.638.3775. Web: www.brookespublishing.com) Klein, M.D., Chen, D., & Haney, M. (2002). PLAI: A guide to communication with young children who have multiple disabilities. Baltimore, MD: Paul H. Brookes. (See contact information above.) Orelove, F., & Sobsey, D. (1996). Educating children with multiple disabilities: A transdisciplinary approach (3rd ed.). Balti- more, MD: Paul H. Brookes. (See contact information above.) Rainforth, B., York, J., & Macdonald, C. (1997). Collaborative teams for students with severe disabilities: Integrating therapy and educational services (2nd ed.). Baltimore, MD: Paul H. Brookes. (See contact information above.) TASH Newsletter. Monthly newsletter from TASH. (See contact information under “Organizations.”) 4 OrganizatOrganizatOrganizatOrganizatOrganizationsionsionsionsions 4 TASH 29 W. Susquehanna Avenue, Suite 210 Baltimore, MD 21204 410.828.8274; 410.828.1306 (TTY) info@tash.org www.tash.org National Rehabilitation Information Center (NARIC) 4200 Forbes Boulevard, Suite 202 Lanham, MD 20706 301.459.5900; 800.346.2742 (Toll-free) naricinfo@heitechservices.com www.naric.com The Arc of the United States 1010 Wayne Avenue, Suite 650 Silver Spring, MD 20910 301.565.3842 info@thearc.org; www.thearc.org United Cerebral Palsy Associations, Inc. 1660 L Street NW, Suite 700 Washington, DC 20036 800.872.5827 (Toll-free) 202.776.0406; 202.973.7197 (TTY) www.ucp.org
  • 29. NICHCYDisabilityFactSheet—No.18 DisabiDisabiDisabiDisabiDisabilitlitlitlitlity Fy Fy Fy Fy Fact Sact Sact Sact Sact Sheet, Nheet, Nheet, Nheet, Nheet, No. 18o. 18o. 18o. 18o. 18 May 2006May 2006May 2006May 2006May 2006 ✧ SSSSSusan’usan’usan’usan’usan’s Ss Ss Ss Ss Storytorytorytorytory ✧ Susan was 7 years old when she was hit by a car while riding her bike. She broke her arm and leg. She also hit her head very hard. The doctors say she sustained a traumatic brain injury. When she came home from the hospi- tal, she needed lots of help, but now she looks fine. In fact, that’s part of the problem, especially at school. Her friends and teachers think her brain has healed because her broken bones have. But there are changes in Susan that are hard to understand. It takes Susan longer to do things. She has trouble remembering things. She can’t always find the words she wants to use. Reading is hard for her now. It’s going to take time before people really understand the changes they see in her. ✧ What is TWhat is TWhat is TWhat is TWhat is TBI?BI?BI?BI?BI? ✧ A traumatic brain injury (TBI) is an injury to the brain caused by the head being hit by something or shaken violently. (The exact definition of TBI, according to special education law, is given in the box on the right.) This injury can change how the person acts, moves, and thinks. A traumatic brain injury can also change how a student learns and acts in school. The term TBI is used for head injuries that can cause changes in one or more areas, such as: • thinking and reasoning, • understanding words, • remembering things, • paying attention, • solving problems, • thinking abstractly, • talking, • behaving, • walking and other physical activities, • seeing and/or hearing, and • learning. The term TBI is not used for a person who is born with a brain injury. It also is not used for brain injuries that happen during birth. The definition of TBI in the box on page 4 comes from the Individuals with Disabilities Education Act (IDEA). The IDEA is the federal law that guides how schools provide special education and related services to children and youth with disabilities. is the National Dissemination Center for Children with Disabilities. NICHCY P.O. Box 1492 Washington, DC 20013 1.800.695.0285 (Voice / TTY) 202.884.8200 (Voice / TTY) nichcy@aed.org www.nichcy.org TTTTTrrrrraumataumataumataumataumatic Bric Bric Bric Bric Braaaaain Iin Iin Iin Iin InjurynjurynjurynjurynjuryTTTTTrrrrraumataumataumataumataumatic Bric Bric Bric Bric Braaaaain Iin Iin Iin Iin Injurynjurynjurynjurynjury
  • 30. NICHCY: 1.800.695.0285 2 Fact Sheet on Traumatic Brain Injury (FS18) ✧ HHHHHow Common is Tow Common is Tow Common is Tow Common is Tow Common is TBI?BI?BI?BI?BI? ✧ More than one million children receive brain injuries each year. More than 30,000 of these children have lifelong disabilities as a result of the brain injury. ✧ What AWhat AWhat AWhat AWhat Are tre tre tre tre the She She She She Signs of Tigns of Tigns of Tigns of Tigns of TBI?BI?BI?BI?BI? ✧ The signs of brain injury can be very different depending on where the brain is injured and how severely. Children with TBI may have one or more difficulties, including: • Physical disabilities: Individuals with TBI may have problems speaking, seeing, hearing, and using their other senses. They may have headaches and feel tired a lot. They may also have trouble with skills such as writing or drawing. Their muscles may suddenly contract or tighten (this is called spastic- ity). They may also have seizures. Their balance and walking may also be affected. They may be partly or completely paralyzed on one side of the body, or both sides. • Difficulties with thinking: Because the brain has been injured, it is common that the person’s ability to use the brain changes. For example, children with TBI may have trouble with short-term memory (being able to remember something from one minute to the next, like what the teacher just said). They may also have trouble with their long-term memory (being able to remember information from a while ago, like facts learned last month). People with TBI may have trouble concentrating and only be able to focus their attention for a short time. They may think slowly. They may have trouble talking and listening to others. They may also have difficulty with reading and writing, planning, understanding the order in which events happen (called sequenc- ing), and judgment. • Social, behavioral, or emotional problems: These difficulties may include sudden changes in mood, anxiety, and depression. Children with TBI may have trouble relating to others. They may be restless and may laugh or cry a lot. They may not have much motivation or much control over their emotions. A child with TBI may not have all of the above difficulties. Brain injuries can range from mild to severe, and so can the changes that result from the injury. This means that it’s hard to predict how an individual will recover from the injury. Early and ongoing help can make a big difference in how the child recovers. This help can include physical or occupational therapy, counseling, and special education. It’s also important to know that, as the child grows and develops, parents and teachers may notice new problems. This is because, as students grow, they are expected to use their brain in new and different ways. The damage to the brain from the earlier injury can make it hard for the student to learn new skills that come with getting older. Sometimes parents and educators may not even realize that the student’s difficulty comes from the earlier injury. ✧ What About SWhat About SWhat About SWhat About SWhat About Schoolchoolchoolchoolchool????? ✧ Although TBI is very common, many medical and education professionals may not realize that some difficulties can be caused by a childhood brain injury. Often, students with TBI are thought to have a learning disability, emotional distur- bance, or mental retardation. As a result, they don’t receive the type of educational help and support they really need. When children with TBI return to school, their educational and emotional needs are often very different than before the injury. Their disability has happened suddenly and traumatically. They can often remember how they were before the brain injury. This can bring on many emotional and social changes. The child’s family, friends, and teachers also recall what the child was like before the injury. These other people in the child’s life may have trouble changing or adjusting their expectations of the child. Therefore, it is extremely important to plan carefully for the child’s return to school. Parents will want to find out ahead of time about special education services at the school. This information is usually available from the school’s principal or special education teacher. The school will need to evaluate the child thoroughly. This evaluation will let the school and parents know what the student’s educational needs are. The school and parents will then develop an Individualized Educa- tion Program (IEP) that addresses those educa- tional needs. It’s important to remember that the IEP is a flexible plan. It can be changed as the parents, the school, and the student learn more about what the student needs at school.
  • 31. Fact Sheet on Traumatic Brain Injury (FS18) 3 NICHCY: 1.800.695.0285 ✧ TTTTTips for Pips for Pips for Pips for Pips for Parenarenarenarenarentststststs ✧ ❑ Find out as much as you can about the child’s injury and his or her present needs. Find out more about TBI. See the list of resources and organizations at the end of this publication. ❑ Give the student more time to finish schoolwork and tests. ❑ Give directions one step at a time. For tasks with many steps, it helps to give the student written directions. ❑ Show the student how to perform new tasks. Give examples to go with new ideas and concepts. ❑ Have consistent routines. This helps the student know what to expect. If the routine is going to change, let the student know ahead of time. ❑ Check to make sure that the student has actually learned the new skill. Give the student lots of opportunities to practice the new skill. ❑ Show the student how to use an assign- ment book and a daily schedule. This helps the student get organized. ❑ Realize that the student may get tired quickly. Let the student rest as needed. ❑ Reduce distractions. ❑ Keep in touch with the student’s parents. Share information about how the stu- dent is doing at home and at school. ❑ Be flexible about expectations. Be pa- tient. Maximize the student’s chances for success. ❑ Learn about TBI. The more you know, the more you can help yourself and your child. See the list of resources and organizations at the end of this publication. ❑ Work with the medical team to understand your child’s injury and treatment plan. Don’t be shy about asking questions. Tell them what you know or think. Make sugges- tions. ❑ Keep track of your child’s treatment. A 3- ring binder or a box can help you store this history. As your child recovers, you may meet with many doctors, nurses, and others. Write down what they say. Put any paperwork they give you in the notebook or throw it in the box. You can’t remember all this! Also, if you need to share any of this paperwork with someone else, make a copy. Don’t give away your original! ❑ Talk to other parents whose children have TBI. There are parent groups all over the U.S. Parents can share practical advice and emotional support. Call NICHCY (800- 695-0285) or find resources in your state, online at (www.nichcy.org/states.htm) to locate parent groups near you. ❑ If your child was in school before the injury, plan for his or her return to school. Get in touch with the school. Ask the principal about special education services. Have the medical team share information with the school. ❑ When your child returns to school, ask the school to test your child as soon as pos- sible to identify his or her special educa- tion needs. Meet with the school and help develop a plan for your child called an Individualized Education Program (IEP). ❑ Keep in touch with your child’s teacher. Tell the teacher about how your child is doing at home. Ask how your child is doing in school. ✧ TTTTTips for Tips for Tips for Tips for Tips for Teacherseacherseacherseacherseachers ✧
  • 32. ✧ ResourcesResourcesResourcesResourcesResources ✧ DeBoskey, D.S. (Ed.). (1996). Coming home: A discharge manual for families of persons with a brain injury. Houston, TX: HDI. (Phone: 800-321-7037; Web: www.braininjurybooks.com) DePompei, R., Blosser, J., Savage, R., & Lash, M. (1998). Special education: IEP checklist for a student with a brain injury. Wolfeboro, NH: L&A Publishing/ Training. (Phone: 919-562-0015. Web: www.lapublishing.com) DePompei, R., & Cluett, B. (1998). All about me! Wolfeboro, NH: L&A Publishing/Training. (For use by elementary school children with TBI. See contact information above.) DePompei, R., & Tyler, J. (2004). Learning and cognitive communication challenges: Developing educational programs for students with brain injuries. Wolfeboro, NH: L&A Publishing/Training. (See contact information above.) Hibbard, M., Gordon, W., Martin, T., Rashkin, B., & Brown, M. (2001). Students with traumatic brain injury: Identification, assessment, and classroom accommodations. New York: Research and Training Center on Community Integration of Individuals with Traumatic Brain Injury. (Phone: 888-241-5152; Web: www.mssm.edu/tbinet/alt/ pubs/tbikids.pdf Lash, M., Wolcott, G., & Pearson, S. (2000). Signs and strategies for educating students with brain injuries: A practical guide for teachers and schools. (2nd ed.). Hous- ton, TX: HDI. (See contact information above.) Schoenbrodt, L. (Ed.). (2001). Children with trau- matic brain injury: A parents’ guide. Bethesda, MD: Woodbine House. (Phone: 800-843-7323; Web: www.woodbinehouse.com) Senelick, R.C., & Dougherty, K. (2001). Living with brain injury: A guide for families (2nd ed.). San Diego, CA: Singular. (Phone: 800-347-7707; Web: www.delmarhealthcare.com) Snyder, H. (1998). Elvin the elephant who forgets. Wolfeboro, NH: L&A Publishing/Training. (A 16-page picture book for children. See contact information above.) ✧ OrganizationsOrganizationsOrganizationsOrganizationsOrganizations ✧ Brain Injury Association (formerly the National Head Injury Foundation), 8201 Greensboro Drive, Suite 611 Mclean, VA 22102. Phone: 703.761.0750; 800.444.6443 (Family Helpline) Email: FamilyHelpline@biausa.org Web site: www.biausa.org Emergency Medical Services for Children— National Resource Center, 111 Michigan Avenue N.W., Washington, DC 20010. Phone: 202.884.4927 Email: information@emscnrc.com Web site: www.ems-c.org/ Epilepsy Foundation-National Office, 4351 Garden City Drive, Suite 500, Landover, MD 20785-7223. Phone: 301.459.3700; 800.332.1000; 800.332.2070 (TTY) Web site: www.epilepsyfoundation.org Family Caregiver Alliance, 180 Montgomery St., Suite 1100 San Francisco, CA 94104. Phone: 415.434.3388; 800.445.8106 Email: info@caregiver.org Web site: www.caregiver.org Family Voices, 2340 Alamo SE, Suite 102 Albuquerque, NM 87106. Phone: 505.872.4774; 888.835.5669 Email: kidshealth@familyvoices.org Web site: www.familyvoices.org Head Injury Hotline, 212 Pioneer Building, Seattle, WA 98104-2221. Phone: 206.621.8558 Email: brain@headinjury.com Web site: www.headinjury.com National Resource Center for Traumatic Brain Injury Department of Physical Medicine and Rehabilitation P.O. Box 980542 Richmond, VA 23298-0542 . Phone: 804.828.9055 E-mail: mbking@hsc.vcu.edu Web site: www.neuro.pmr.vcu.edu Our nation’s special education law, the Individuals with Disabili- ties Education Act (IDEA) defines traumatic brain injury as. . . “. . . an acquired injury to the brain caused by an external physical force, resulting in total or partial functional disabil- ity or psychosocial impairment, or both, that adversely affects a child’s educational performance. The term applies to open or closed head injuries resulting in impairments in one or more areas, such as cognition; language; memory; attention; reasoning; abstract thinking; judgment; problem-solving; sensory, perceptual, and motor abilities; psycho-social behavior; physical functions; information processing; and speech. The term does not apply to brain injuries that are congenital or degenerative, or to brain injuries induced by birth trauma.” 34 Code of Federal Regulations §300.7(c)(12) Publication of this document is made possible through Cooperative Agreement #H326N030003 between the Acad- emy for Educaitonal Development and the Office of Special Education Programs of the U.S. Department of Education. The contenets of this document do not necessarily reflect the views or policies of the Department of Education, nor does mention of trade names, commercial products, or organizations imply endorsement by the U.S. Government. This publication is copyright free. Readers are encouraged to copy and share it, but please credit the National Dissemina- tion Center for Children with Disabilities (NICHCY). FS18, May 2006
  • 33. NICHCYDisabilityFactSheet—No.6 DisabiDisabiDisabiDisabiDisabilitlitlitlitlity Fy Fy Fy Fy Fact Sact Sact Sact Sact Sheet, Nheet, Nheet, Nheet, Nheet, No. 6o. 6o. 6o. 6o. 6 JJJJJanuary 2004anuary 2004anuary 2004anuary 2004anuary 2004 4 DDDDDefefefefefinitinitinitinitinitionionionionion 4 According to the Epilepsy Foundation of America, epilepsy is a physical condition that occurs when there is a sudden, brief change in how the brain works. When brain cells are not working properly, a person’s consciousness, movement, or actions may be altered for a short time. These physical changes are called epileptic seizures. Epilepsy is therefore sometimes called a seizure disorder. Epilepsy affects people in all nations and of all races. Some people can experience a seizure and not have epilepsy. For example, many young children have convulsions from fevers. These febrile convulsions are one type of seizure. Other types of seizures not classified as epilepsy include those caused by an imbalance of body fluids or chemicals or by alcohol or drug withdrawal. A single seizure does not mean that the person has epilepsy. 4 IIIIIncidencencidencencidencencidencencidence 4 About two million Americans have epilepsy; of the 125,000 new cases that develop each year, up to 50% are in children and adolescents. 4 CharacteristicsCharacteristicsCharacteristicsCharacteristicsCharacteristics 4 Although the symptoms listed below are not necessarily indicators of epilepsy, it is wise to consult a doctor if you or a member of your family experiences one or more of them: • “Blackouts” or periods of confused memory; • Episodes of staring or unexplained periods of unresponsiveness; is the National Dissemination Center for Children with Disabilities. NICHCY P.O. Box 1492 Washington, DC 20013 1.800.695.0285 (Voice / TTY) 202.884.8200 (Voice / TTY) nichcy@aed.org www.nichcy.org EEEEEpipipipipilepsylepsylepsylepsylepsyEEEEEpipipipipilepsylepsylepsylepsylepsy
  • 34. NICHCY: 1.800.695.0285 2 Fact Sheet on Epilepsy (FS6) DDDDDon’t Bon’t Bon’t Bon’t Bon’t Be Se Se Se Se Shy!hy!hy!hy!hy! All of our publications and resource lists are online— help yourself! Visit us at: www.nichcy.org If you’d like personalized assistance, email or call us: nichcy@aed.org 1.800.695.0285 (V/TTY) • Involuntary movement of arms and legs; • “Fainting spells” with incontinence or followed by excessive fatigue; or • Odd sounds, distorted perceptions, episodic feelings of fear that cannot be explained. Seizures can be generalized, meaning that all brain cells are involved. One type of generalized seizure consists of a convulsion with a complete loss of consciousness. Another type looks like a brief period of fixed staring. Seizures are partial when those brain cells not working properly are limited to one part of the brain. Such partial seizures may cause periods of “automatic behavior” and altered consciousness. This is typified by purposeful-looking behavior, such as buttoning or unbuttoning a shirt. Such behavior, however, is unconscious, may be repetitive, and is usually not recalled. 4 EEEEEducatducatducatducatducational Iional Iional Iional Iional Implicatmplicatmplicatmplicatmplicationsionsionsionsions 4 Students with epilepsy or seizure disorders are eligible for special education and related services under the Individuals with Disabilities Education Act (IDEA). Epilepsy is classified as “other health impaired”andanIndividualized Education Program (IEP) would be developedtospecifyappropriate services. Some students may have additional conditions such as learning disabilities along withtheseizuredisorders. Seizures may interfere with the child’s ability to learn. If the student has the type of seizure characterized by a brief period of fixed staring, he or she may be missing parts of what the teacher is saying. It is important that the teacher observe and document these episodes and report them promptly to parents and to school nurses.
  • 35. Depending on the type of seizure or how often they occur, some children may need additional assistance to help them keep up with classmates. Assistance can include adaptations in classroom instruction, first aid instruction on seizure management to the student’s teachers, and counseling, all of which should be written in the IEP. It is important that the teachers and school staff are informed about the child’s condition, possible effects of medication, and what to do in case a seizure occurs at school. Most parents find that a friendly conversation with the teacher(s) at the beginning of the school year is the best way to handle the situation. Even if a child has seizures that are largely controlled by medication, it is still best to notify the school staff about the condition. School personnel and the family should work together to monitor the effectiveness of medication as well as any side effects. If a child’s physical or intellectual skills seem to change, it is important to tell the doctor. There may also be associated hearing or perception problems caused by the brain changes. Written observations of both the family and school staff will be helpful in discussions with the child’s doctor. Children and youth with epilepsy must also deal with the psychological and social aspects of the condition. These include public misperceptions and fear of seizures, uncertain occurrence, loss of self control during the seizure episode, and compliance with medications. To help children feel more confident about themselves and accept their epilepsy, the school can assist by providing epilepsy education programs for staff and students, including information on seizure recognition and first aid. Students can benefit the most when both the family and school are working together. There are many materials available for families and teachers so that they can understand how to work most effectively as a team. NICHCY: 1.800.695.0285 3 Fact Sheet on Epilepsy (FS6) Other HelpfulOther HelpfulOther HelpfulOther HelpfulOther Helpful Things to KThings to KThings to KThings to KThings to Knownownownownow These NICHCY publications talk about topics important to parents of a child with a disability. Parenting a Child with Special Needs Your Child’s Evaluation Parent to Parent Support Questions Often Asked by Parents About Special Education Services Developing Your Child’s IEP All are available in English and in Spanish— on our Web site or by contacting us. Students with epilepsy or seizure disorders are eligible for special education and related services under IDEA.
  • 36. 4 Publication of this document is made possible through Cooperative Agreement #H326N030003 between the Academy for Educational Development and the Office of Special Education Programs of the U.S. Department of Education. The contents of this document do not necessarily reflect the views or policies of the Department of Education, nor does mention of trade names, commercial products, or organizations imply endorsement by the U.S. Government. This publication is copyright free. Readers are encouraged to copy and share it, but please credit NICHCY. FS6, January 2004 4 ResourcesResourcesResourcesResourcesResources 4 Epilepsy Foundation of America. (n.d.). Epilepsy: Questions and answers about seizure disorders. Landover, MD: Author. (See address below.) Freeman, J.M., Vining, E.P.G., & Pillas, D.J. (2003). Seizures and epilepsy in childhood: A guide for parents (3rd ed.). Baltimore, MD: Johns Hopkins University Press. (Phone: 800.537.5487. Web: www.press.jhu.edu/books/index.html) Lechtenberg, R. (2002). Epilepsy and the family: A new guide (2nd ed.). Cambridge, MA: Harvard University Press. (Phone: 800.448.2242. Web: www.hup.harvard.edu) 4 OrganizatOrganizatOrganizatOrganizatOrganizationsionsionsionsions 4 Epilepsy Foundation—National Office 4351 Garden City Drive Landover,MD20785-7223 301.459.3700;800.332.1000 301.577.0100 (For publications) www.epilepsyfoundation.org National Institute of Neurological Disorders and Stroke (NINDS) National Institutes of Health P.O. Box 5801 Bethesda, MD 20824 301.496.5751;800.352.9424 www.ninds.nih.gov/
  • 37. NICHCYDisabilityFactSheet—No.19 DisabiDisabiDisabiDisabiDisabilitlitlitlitlity Fy Fy Fy Fy Fact Sact Sact Sact Sact Sheet, Nheet, Nheet, Nheet, Nheet, No. 19o. 19o. 19o. 19o. 19 January 2004January 2004January 2004January 2004January 2004 ✧ Mario’Mario’Mario’Mario’Mario’s Ss Ss Ss Ss Storytorytorytorytory ✧ Mario is 10 years old. When he was 7, his family learned he had AD/HD. At the time, he was driving everyone crazy. At school, he couldn’t stay in his seat or keep quiet. At home, he didn’t finish his homework or his chores. He did scary things, too, like climb out of his win- dow onto the roof and run across the street without looking. Things are much better now. Mario was tested by a trained professional to find out what he does well and what gives him trouble. His parents and teachers came up with ways to help him at school. Mario has trouble sitting still, so now he does some of his work standing up. He’s also the student who tidies up the room and washes the chalkboard. His teachers break down his lessons into several parts. Then they have him do each part one at a time. This helps Mario keep his attention on his work. At home, things have changed, too. Now his parents know why he’s so active. They are careful to praise him when he does something well. They even have a reward program to encour- age good behavior. He earns “good job points” that they post on a wall chart. After earning 10 points he gets to choose something fun he’d like to do. Having a child with AD/HD is still a challenge, but things are looking better. ✧ What is AD/HD?What is AD/HD?What is AD/HD?What is AD/HD?What is AD/HD? ✧ Attention-Deficit/Hyperactivity Disorder (AD/HD) is a condition that can make it hard for a person to sit still, control behavior, and pay attention. These difficulties usually begin before the person is 7 years old. However, these behaviors may not be noticed until the child is older. Doctors do not know just what causes AD/HD. However, researchers who study the brain are coming closer to understanding what may cause AD/ HD. They believe that some people with AD/HD do not have enough of certain chemicals (called neurotransmitters) in their brain. These chemicals help the brain control behavior. Parents and teachers do not cause AD/HD. Still, there are many things that both parents and teachers can do to help a child with AD/HD. is the National Dissemination Center for Children with Disabilities. NICHCY P.O. Box 1492 Washington, DC 20013 1.800.695.0285 (Voice / TTY) 202.884.8200 (Voice / TTY) nichcy@aed.org www.nichcy.org AAAAAttenttenttenttenttentttttion-Dion-Dion-Dion-Dion-Defefefefeficit/Hicit/Hicit/Hicit/Hicit/Hyperyperyperyperyperactactactactactivivivivivititititityyyyy Disorder (AD/HD)Disorder (AD/HD)Disorder (AD/HD)Disorder (AD/HD)Disorder (AD/HD) AAAAAttenttenttenttenttentttttion-Dion-Dion-Dion-Dion-Defefefefeficit/Hicit/Hicit/Hicit/Hicit/Hyperyperyperyperyperactactactactactivivivivivititititityyyyy Disorder (AD/HD)Disorder (AD/HD)Disorder (AD/HD)Disorder (AD/HD)Disorder (AD/HD)
  • 38. NICHCY: 1.800.695.0285 2 Fact Sheet on AD/HD (FS19) ✧ How Common is AD/HD?How Common is AD/HD?How Common is AD/HD?How Common is AD/HD?How Common is AD/HD? ✧ As many as 5 out of every 100 children in school may have AD/HD. Boys are three times more likely than girls to have AD/HD. ✧ What AWhat AWhat AWhat AWhat Are tre tre tre tre the She She She She Signs of AD/HD?igns of AD/HD?igns of AD/HD?igns of AD/HD?igns of AD/HD? ✧ There are three main signs, or symptoms, of AD/HD. These are: ◆ problems with paying attention, ◆ being very active (called hyperactivity), and ◆ acting before thinking (called impulsivity). More information about these symptoms is listed in a book called the Diagnostic and Statistical Manual of Mental Disorders (DSM), which is published by the American Psychiatric Association (2000). Based on these symptoms, three types of AD/HD have been found: ◆ inattentive type, where the person can’t seem to get focused or stay focused on a task or activity; ◆ hyperactive-impulsive type, where the person is very active and often acts without thinking; and ◆ combined type, where the person is inattentive, impulsive, and too active. Inattentive type. Many children with AD/HD have problems paying attention. Children with the inattentive type of AD/HD often: ◆ do not pay close attention to details; ◆ can’t stay focused on play or school work; ◆ don’t follow through on instructions or finish school work or chores; ◆ can’t seem to organize tasks and activities; ◆ get distracted easily; and ◆ lose things such as toys, school work, and books. (APA, 2000, pp. 85-86) Hyperactive-impulsive type. Being too active is prob- ably the most visible sign of AD/HD. The hyperactive child is “always on the go.” (As he or she gets older, the level of activity may go down.) These children also act before thinking (called impulsivity). For example, they may run across the road without looking or climb to the top of very tall trees. They may be surprised to find themselves in a dangerous situation. They may have no idea of how to get out of the situation. Hyperactivity and impulsivity tend to go together. Children with the hyperactive-impulsive type of AD/HD often may: ◆ fidget and squirm; ◆ get out of their chairs when they’re not supposed to; ◆ run around or climb constantly; ◆ have trouble playing quietly; ◆ talk too much; ◆ blurt out answers before questions have been completed; ◆ have trouble waiting their turn; ◆ interrupt others when they’re talking; and ◆ butt in on the games others are playing. (APA, 2000, p. 86) Combined type. Children with the combined type of AD/HD have symptoms of both of the types described above. They have problems with paying attention, with hyperactivity, and with controlling their impulses. Of course, from time to time, all children are inatten- tive, impulsive, and too active. With children who have AD/HD, these behaviors are the rule, not the exception. These behaviors can cause a child to have real problems at home, at school, and with friends. As a result, many children with AD/HD will feel anxious, unsure of themselves, and depressed. These feelings are not symptoms of AD/HD. They come from having problems again and again at home and in school. ✧ HHHHHow Dow Dow Dow Dow Do Yo Yo Yo Yo You Kou Kou Kou Kou Know if a Chinow if a Chinow if a Chinow if a Chinow if a Childldldldld Has AD/HD?Has AD/HD?Has AD/HD?Has AD/HD?Has AD/HD? ✧ When a child shows signs of AD/HD, he or she needs to be evaluated by a trained professional. This person may work for the school system or may be a professional in private practice. A complete evaluation is the only way to know for sure if the child has AD/HD. It is also important to: ◆ rule out other reasons for the child’s behavior, and ◆ find out if the child has other disabilities along with AD/HD. ✧ What About TWhat About TWhat About TWhat About TWhat About Treatreatreatreatreatmenmenmenmenmenttttt????? ✧ There is no quick treatment for AD/HD. However, the symptoms of AD/HD can be managed. It’s important that the child’s family and teachers: ◆ find out more about AD/HD; ◆ learn how to help the child manage his or her behavior;
  • 39. Fact Sheet on AD/HD (FS19) 3 NICHCY: 1.800.695.0285 ✧ TTTTTips for Pips for Pips for Pips for Pips for Parenarenarenarenarentststststs ✧ ❑ Learn about AD/HD. The more you know, the more you can help yourself and your child. See the list of resources and organizations at the end of this publication. ❑ Praise your child when he or she does well. Build your child’s abilities. Talk about and encourage his or her strengths and talents. ❑ Be clear, be consistent, be positive. Set clear rules for your child. Tell your child what he or she should do, not just what he shouldn’t do. Be clear about what will happen if your child does not follow the rules. Have a reward program for good behavior. Praise your child when he or she shows the behaviors you like. ❑ Learn about strategies for managing your child’s behavior. These include valuable techniques such as: charting, having a reward program, ignoring behaviors, natural conse- quences, logical consequences, and time-out. Using these strategies will lead to more positive behaviors and cut down on problem behaviors. You can read about these techniques in many books. See “Resources” on page 4 of this publication. ❑ Talk with your doctor about whether medica- tion will help your child. ❑ Pay attention to your child’s mental health (and your own!). Be open to counseling. It can help you deal with the challenges of raising a child with AD/HD. It can help your child deal with frustration, feel better about himself or herself, and learn more about social skills. ❑ Talk to other parents whose children have AD/ HD. Parents can share practical advice and emotional support. Call NICHCY to find out how to find parent groups near you. ❑ Meet with the school and develop an educa- tional plan to address your child’s needs. Both you and your child’s teachers should get a written copy of this plan. ❑ Keep in touch with your child’s teacher. Tell the teacher how your child is doing at home. Ask how your child is doing in school. Offer support. ✧ TTTTTips for Tips for Tips for Tips for Tips for Teacherseacherseacherseacherseachers ✧ ❑ Learn more about AD/HD. The resources and organizations at the end of this publication will help you identify behavior support strategies and effective ways to support the student educationally. We’ve listed some strategies below. ❑ Figure out what specific things are hard for the student. For example, one student with AD/HD may have trouble starting a task, while another may have trouble ending one task and starting the next. Each student needs different help. ❑ Post rules, schedules, and assignments. Clear rules and routines will help a student with AD/ HD. Have set times for specific tasks. Call attention to changes in the schedule. ❑ Show the student how to use an assignment book and a daily schedule. Also teach study skills and learning strategies, and reinforce these regularly. ❑ Help the student channel his or her physical activity (e.g., let the student do some work standing up or at the board). Provide regularly scheduled breaks. ❑ Make sure directions are given step by step, and that the student is following the directions. Give directions both verbally and in writing. Many students with AD/HD also benefit from doing the steps as separate tasks. ❑ Let the student do work on a computer. ❑ Work together with the student’s parents to create and implement an educational plan tailored to meet the student’s needs. Regularly share information about how the student is doing at home and at school. ❑ Have high expectations for the student, but be willing to try new ways of doing things. Be patient. Maximize the student’s chances for success.
  • 40. ◆ create an educational program that fits the child’s individual needs; and ◆ provide medication, if parents and the doctor feel this would help the child. ✧ What About SWhat About SWhat About SWhat About SWhat About Schoolchoolchoolchoolchool????? ✧ School can be hard for children with AD/HD. Success in school often means being able to pay attention and control behavior and impulse. These are the areas where children with AD/HD have trouble. There are many ways the school can help students with AD/HD. Some students may be eligible to receive special education services under the Individuals with Disabilities Education Act (IDEA). Under the newest amendments to IDEA, passed in 1997, AD/HD is specifically mentioned under the category of “Other Health Impairment” (OHI). We’ve included the IDEA’s definition of OHI in the box on this page. Other students will not be eligible for services under IDEA. However, they may be eligible for services under a different law, Section 504 of the Rehabilitation Act of 1973. In both cases, the school and the child’s parents need to meet and talk about what special help the student needs. Most students with AD/HD are helped by supports or changes in the classroom (called adaptations). Some common changes that help students with AD/HD are listed in the “Tips for Teachers” box on page 3. More information about helpful strategies can be found in NICHCY’s briefing paper called Attention-Deficit/ Hyperactivity Disorder. The resources listed below will also help families and teachers learn more about ways to help children with AD/HD. ✧ ResourcesResourcesResourcesResourcesResources ✧ American Academy of Pediatrics. (2001, October). Clinical practice guideline: Treatment of the school-aged child with attention-deficit/hyperactivity disorder. Pediatrics, 108(4), 1033-1044. (Available online at: www.aap.org/policy/s0120.html) Barkley, R. (2000). A new look at ADHD: Inhibition, time, and self-control [video]. New York: Guilford. (Phone: 800.365.7006. Web: www.guilford.com) Barkley, R. (2000). Taking charge of AD/HD: The com- plete authoritative guide for parents (Rev. ed.). New York: Guilford. (Seecontactinformationabove.) Many students with AD/HD may qualify for special education services under the “Other Health Impairment” category within the Individuals with Disabilities Education Act (IDEA). IDEA defines “other health impairment” as... “...having limited strength, vitality or alertness, including a heightened alertness to environmental stimuli, that results in limited alertness with respect to the educational environment, that is due to chronic or acute health problems such as asthma, attention deficit disorder or attention deficit hyperactivity disorder, diabetes, epilepsy, a heart condition, hemophilia, lead poisoning, leukemia, nephritis, rheumatic fever, and sickle cell anemia; and adversely affects a child's educational performance.” 34 Code of Federal Regulations §300.7(c)(9) Dendy, C.A.Z. (1999). Teaching teens with ADD and ADHD: A quick reference guide for teachers and parents. Bethesda, MD: Woodbine. (Phone: 800.843.7323. Web: www.woodbinehouse.com.) Fowler, M. (1999). Maybe you know my kid: A parent’s guide to helping your child with attention deficit hyperactiv- ity disorder (3rd ed.). Kensington, NY: Citadel. (Phone: 877.422.3665. Web: www.kensingtonbooks.com) Fowler, M. (2002). Attention-deficit/hyperactivity disorder. NICHCY Briefing Paper, 1-24. (Phone: 800.695.0285. Also available on the Web site: www.nichcy.org) National Institutes of Health. (1998). Diagnosis and treatment of attention deficit hyperactivity disorder. NIH Consensus Statement, 16(2), 1-37 [On-line]. Available: odp.od.nih.gov/consensus/cons/110/110_statement.htm ✧ OrganizationsOrganizationsOrganizationsOrganizationsOrganizations ✧ Attention Deficit Disorder Association P.O. Box 543 Pottstown, PA 19464 484.945.2101 E-mail: mail@add.org Web: www.add.org CH.A.D.D. (Children and Adults with Attention-Deficit/ Hyperactivity Disorder) 8181 Professional Place, Suite 150 Landover, MD 20785 301.306.7070 800.233.4050 Web: www.chadd.org FS19, January 2004 Publication of this document is made possible through Cooperative Agreement #H326N030003 between the Academy for Educational Development and the Office of Special Education Programs of the U.S. Department of Education. The contents of this document do not necessarily reflect the views or policies of the Department of Education, nor does mention of trade names, commercial products, or organizations imply endorsement by the U.S. Government. This publication is copyright free. Readers are encouraged to copy and share it, but please credit the National Dissemination Center for Children with Disabilities (NICHCY).
  • 41. NICHCYDisabilityFactSheet—No.4 DisabiDisabiDisabiDisabiDisabilitlitlitlitlity Fy Fy Fy Fy Fact Sact Sact Sact Sact Sheet, Nheet, Nheet, Nheet, Nheet, No. 4o. 4o. 4o. 4o. 4 January 2004January 2004January 2004January 2004January 2004 4 DDDDDefefefefefinitinitinitinitinitionionionionion 4 Down syndrome is the most common and readily identifiable chromosomal condition associated with mental retardation. It is caused by a chromosomal abnormality: for some unexplained reason, an accident in cell development results in 47 instead of the usual 46 chromosomes. This extra chromosome changes the orderly development of the body and brain. In most cases, the diagnosis of Down syndrome is made according to results from a chromosome test administered shortly after birth. 4 IIIIIncidencencidencencidencencidencencidence 4 Approximately 4,000 children with Down syndrome are born in the U.S. each year, or about 1 in every 800 to 1,000 live births. Although parents of any age may have a child with Down syndrome, the incidence is higher for women over 35. Most common forms of the syndrome do not usually occur more than once in a family. 4 CharacteristicsCharacteristicsCharacteristicsCharacteristicsCharacteristics 4 There are over 50 clinical signs of Down syndrome, but it is rare to find all or even most of them in one person. Some common characteristics include: • Poor muscle tone; • Slanting eyes with folds of skin at the inner corners (called epicanthal folds); • Hyperflexibility (excessive ability to extend the joints); • Short, broad hands with a single crease across the palm on one or both hands; is the National Dissemination Center for Children with Disabilities. NICHCY P.O. Box 1492 Washington, DC 20013 1.800.695.0285 (Voice / TTY) 202.884.8200 (Voice / TTY) nichcy@aed.org www.nichcy.org DDDDDown Sown Sown Sown Sown SyndromeyndromeyndromeyndromeyndromeDDDDDown Sown Sown Sown Sown Syndromeyndromeyndromeyndromeyndrome
  • 42. • Broad feet with short toes; • Flat bridge of the nose; • Short, low-set ears; • Short neck; • Small head; • Small oral cavity; and/or • Short, high-pitched cries in infancy. Individuals with Down syndrome are usually smaller than their nondisabled peers, and their physical as well as intellectual development is slower. Besides having a distinct physical appearance, children with Down syndrome frequently have specific health- related problems. A lowered resistance to infection makes these children more prone to respiratory problems. Visual problems such as crossed eyes and far- or nearsightedness are higher in individuals with Down syndrome, as are mild to moderate hearing loss and speech difficulty. Approximately one third of babies born with Down syndrome have heart defects, most of which are now successfully correctable. Some individuals are born with gastrointestinal tract problems that can be surgically corrected. Some people with Down syndrome also may have a condition known as Atlantoaxial Instability, a misalignment of the top two vertebrae of the neck. This condition makes these indi- viduals more prone to injury if they participate in activities which overex- tend or flex the neck. Parents are urged to have their child examined by a physician to determine whether or not their child should be restricted from sports and activities which place stress on the neck. Although this misalignment is a potentially serious condition, proper diagnosis can help prevent seriousinjury. NICHCY: 1.800.695.0285 2 Fact Sheet on Down Syndrome (FS4) DDDDDon’t Bon’t Bon’t Bon’t Bon’t Be Se Se Se Se Shy!hy!hy!hy!hy! All of our publications and resource lists are online— help yourself! Visit us at: www.nichcy.org If you’d like personalized assistance, email or call us: nichcy@aed.org 1.800.695.0285 (V/TTY)
  • 43. Children with Down syndrome may have a tendency to become obese as they grow older. Besides having negative social implications, this weight gain threatens these individuals’ health and longevity. A supervised diet and exercise program may help reduce this problem. 4 EEEEEducatducatducatducatducational Iional Iional Iional Iional Implicatmplicatmplicatmplicatmplicationsionsionsionsions 4 Shortly after a diagnosis of Down syndrome is con- firmed, parents should be encouraged to enroll their child in an infant development/early intervention program. These programs offer parents special instruction in teach- ing their child language, cognitive, self-help, and social skills, and specific exercises for gross and fine motor development. Research has shown that stimulation during early developmental stages improves a child’s chances of developing to his or her fullest potential. Continuing education, positive public attitudes, and a stimulating home environment have also been found to promote the child’soveralldevelopment. Just as in the normal population, there is a wide variation in mental abilities, behavior, and develop- mental progress in individuals with Down syn- drome. Their level of retardation may range from mild to severe, with the majority functioning in the mild to moderate range. Due to these individual differences, it is impossible to predict future achieve- ments of children with Down syndrome. Because of the range of ability in children with Down syndrome, it is important for families and all members of the school’s education team to place few limita- tions on potential capabilities. It may be effective to emphasize concrete concepts rather than abstract ideas. Teaching tasks in a step-by-step manner with frequent reinforcement and consistent feedback has proven successful. Improved public acceptance of persons with disabilities, along with increased opportunities for adults with disabilities to live and work independently in the community, have expanded goals for individuals with Down syndrome. Independent Living Centers, group- NICHCY: 1.800.695.0285 3 Fact Sheet on Down Syndrome (FS4) Other HelpfulOther HelpfulOther HelpfulOther HelpfulOther Helpful Things to KThings to KThings to KThings to KThings to Knownownownownow These NICHCY publications talk about topics important to parents of a child with a disability. Parenting a Child with Special Needs Your Child’s Evaluation Parent to Parent Support Questions Often Asked by Parents About Special Education Services Developing Your Child’s IEP All are available in English and in Spanish— on our Web site or by contacting us. Research has shown that stimulation during early developmental stages improves a child’s chances of developing to his or her fullest potential.
  • 44. 4 Publication of this document is made possible through Cooperative Agreement #H326N030003 between the Academy for Educational Development and the Office of Special Education Programs of the U.S. Department of Education. The contents of this document do not necessarily reflect the views or policies of the Department of Education, nor does mention of trade names, commercial products, or organizations imply endorsement by the U.S. Government. This publication is copyright free. Readers are encouraged to copy and share it, but please credit NICHCY. FS4, January 2004 shared and supervised apartments, and support services in the community have proven to be important resources for persons withdisabilities. 4 ResourcesResourcesResourcesResourcesResources 4 Cunningham, C. (1999). Understanding Down syndrome: An introduction for parents (2nd ed.). Cambridge, MA: Brookline. (Phone: 800.666.2665. Web: www.brooklinebooks.com) Pueschel, S.M. (Ed.). (2001). A parent’s guide to Down syndrome: Toward a brighter future (2nd ed.). Baltimore, MD: Paul H. Brookes. (Phone: 800.638.3775. Web: www.brookespublishing.com) Unruh, J.F. (1994). Down syndrome: Successful parenting of children with Down syndrome. Eugene, OR: Fern Ridge Press. (Phone: 800.816.5679. Web: www.fernridgepress.com/) Woodbine House (Phone: 800.843.7323, Web: www.woodbinehouse.com) publishes a series on Down syndrome, including: • Babies with Down syndrome: A new parent’s guide • Differences in common: Straight talk about mental retardation, Down syndrome, and life • Down syndrome: The first 18 months (DVD or Video) • Early Communication skills in children with Down syndrome: A guide for parents and professionals • Fine motor skills in children with Down syndrome • Gross motor skills in children with Down syndrome • Medical and surgical care for children with Down syndrome: A guide for parents • Teaching reading to children with Down syndrome 4 OrganizatOrganizatOrganizatOrganizatOrganizationsionsionsionsions 4 National Down Syndrome Congress 1370 Center Drive, Suite 102 Atlanta, GA 30338 770.604.9500; 800.232.6372 info@ndsccenter.org www.ndsccenter.org National Down Syndrome Society 666 Broadway New York, NY 10012 212.460.9330; 800.221.4602 info@ndss.org ndss.org The Arc of the United States 1010 Wayne Avenue, Suite 650 Silver Springs, MD 20910 301.565.3842 info@thearc.org www.thearc.org
  • 45. NICHCYDisabilityFactSheet—No.2 DisabiDisabiDisabiDisabiDisabilitlitlitlitlity Fy Fy Fy Fy Fact Sact Sact Sact Sact Sheet, Nheet, Nheet, Nheet, Nheet, No. 2o. 2o. 2o. 2o. 2 January 2004January 2004January 2004January 2004January 2004 4 JJJJJennifer’ennifer’ennifer’ennifer’ennifer’s Ss Ss Ss Ss Storytorytorytorytory 4 Jen was born 11 weeks early and weighed only 2½ pounds. The doctors were surprised to see what a strong, wiggly girl she was. But when Jen was just a few days old, she stopped breathing and was put on a ventilator. After 24 hours she was able to breathe on her own again. The doctors did a lot of tests to find out what had happened, but they couldn’t find anything wrong. The rest of Jen’s time in the hospital was quiet, and after two months she was able to go home. Everyone thought she would be just fine. At home, Jen’s mom noticed that Jen was really sloppy when she drank from her bottle. As the months went by, Jen’s mom noticed other things she didn’t remember seeing with Jen’s older brother. At six months, Jen didn’t hold her head up straight. She cried a lot and would go stiff with rage. When Jen went back for her six-month checkup, the doctor was concerned by what he saw and what Jen’s mom told him. He suggested that Jen’s mom take the little girl to a doctor who could look closely at Jen’s development. Jen’s mom took her to a developmental specialist who finally put a name to all the little things that hadn’t seemed right with Jen—cerebral palsy. 4 What is CP?What is CP?What is CP?What is CP?What is CP? 4 Cerebral palsy—also known as CP— is a condition caused by injury to the parts of the brain that control our ability to use our muscles and bodies. Cerebral means having to do with the brain. Palsy means weakness or prob- lems with using the muscles. Often the injury happens before birth, sometimes during delivery, or, like Jen, soon after being born. CP can be mild, moderate, or severe. Mild CP may mean a child is clumsy. Moderate CP may mean the child walks with a limp. He or she may need a special leg brace or a cane. is the National Dissemination Center for Children with Disabilities. NICHCY P.O. Box 1492 Washington, DC 20013 1.800.695.0285 (Voice / TTY) 202.884.8200 (Voice / TTY) nichcy@aed.org www.nichcy.org CerebrCerebrCerebrCerebrCerebral Pal Pal Pal Pal PalsyalsyalsyalsyalsyCerebrCerebrCerebrCerebrCerebral Pal Pal Pal Pal Palsyalsyalsyalsyalsy
  • 46. NICHCY: 1.800.695.0285 2 Fact Sheet on Cerebral Palsy (FS2) More severe CP can affect all parts of a child’s physical abilities. A child with moderate or severe CP may have to use a wheelchair and other special equipment. Sometimes children with CP can also have learning problems, problems with hearing or seeing (called sensory problems), or mental retardation. Usually, the greater the injury to the brain, the more severe the CP. However, CP doesn’t get worse over time, and most children with CP have a normal life span. 4 How Common is CP?How Common is CP?How Common is CP?How Common is CP?How Common is CP? 4 About 500,000 people in America have some form of CP. Each year 8,000 infants and nearly 1,500 preschool-age children are diagnosed with CP. 4 What AWhat AWhat AWhat AWhat Are tre tre tre tre the She She She She Signs of CP?igns of CP?igns of CP?igns of CP?igns of CP? 4 There are three main types of CP: • Spastic CP is where there is too much muscle tone or tightness. Movements are stiff, especially in the legs, arms, and/or back. Children with this form of CP move their legs awkwardly, turning in or scissoring their legs as they try to walk. This is the most common form of CP. • Athetoid CP (also called dyskinetic CP) can affect movements of the entire body. Typically, this form of CP involves slow, uncontrolled body movements and low muscle tone that makes it hard for the person to sit straight and walk. • Mixed CP is a combination of the symptoms listed above. A child with mixed CP has both high and low tone muscle. Some muscles are too tight, and others are too loose, creating a mix of stiffness and involuntary movements. More words used to describe the different types of CP include: • Diplegia—This means only the legs are af- fected. • Hemiplegia—This means one half of the body (such as the right arm and leg) is affected. • Quadriplegia—This means both arms and legs are affected, sometimes including the facial muscles and torso. 4 What About TWhat About TWhat About TWhat About TWhat About Treatreatreatreatreatmenmenmenmenmenttttt????? 4 With early and ongoing treatment the effects of CP can be reduced. Many children learn how to get their bodies to work for them in other ways. For example, one infant whose CP keeps him from crawling may be able to get around by rolling from place to place. Children younger than three years old can benefit greatly from early intervention services. Early intervention is a system of services to support infants and toddlers with disabilities and their families. For older children, special education and related services are available through the public school to help each child achieve and learn. Typically, children with CP may need different kinds of therapy, including: • Physical therapy (PT), which helps the child develop stronger muscles such as those in the legs and trunk. Through PT, the child works on skills such as walking, sitting, and keeping his or her balance. • Occupational therapy (OT), which helps the child develop fine motor skills such as dressing, feeding, writing, and other daily living tasks. • Speech-language pathology (S/L), which helps the child develop his or her communication skills. The child may work in particular on speaking, which may be difficult due to problems with muscle tone of the tongue and throat. The child may also find a variety of special equipment helpful. For example, braces (also called AFOs) may be used to hold the foot in place when the child stands or walks. Custom splints can provide support to help a child use his or her hands. A variety of therapy equipment and adapted toys are available to help children play and have fun while they are working their bodies. Activities such as swimming or horseback riding can help strengthen weaker muscles and relax the tighter ones. New medical treatments are being developed all the time. Sometimes surgery, Botox injections, or other medications can help lessen the effects of CP, but there is no cure for the condition.
  • 47. Fact Sheet on Cerebral Palsy (FS2) 3 NICHCY: 1.800.695.0285 4 TTTTTips for Pips for Pips for Pips for Pips for Parenarenarenarenarentststststs 4 u Learn about CP. The more you know, the more you can help yourself and your child. See the list of resources and organizations at the end of this publication. u Love and play with your child. Treat your son or daughter as you would a child without disabilities. Take your child places, read together, have fun. u Learn from professionals and other par- ents how to meet your child’s special needs, but try not to turn your lives into one round of therapy after another. u Ask for help from family and friends. Caring for a child with CP is hard work. Teach others what to do and give them plenty of opportunities to practice while you take a break. u Keep informed about new treatments and technologies that may help. New ap- proaches are constantly being worked on and can make a huge difference to the quality of your child’s life. However, be careful about unproven new “fads.” u Learn about assistive technology that can help your child. This may include a simple communication board to help your child express needs and desires, or may be as sophisticated as a computer with special software. u Be patient, keep up your hope for im- provement. Your child, like every child, has a whole lifetime to learn and grow. u Work with professionals in early interven- tion or in your school to develop an IFSP or an IEP that reflects your child’s needs and abilities. Be sure to include related services such as speech-language pathol- ogy, physical therapy, and occupational therapy if your child needs these. Don’t forget about assistive technology either! 4 TTTTTips for Tips for Tips for Tips for Tips for Teacherseacherseacherseacherseachers 4 u Learn more about CP. The resources and organizations at the end of this publica- tion will help you. u This may seem obvious, but sometimes the “look” of CP can given the mistaken impression that a child who has CP cannot learn as much as others. Focus on the individual child and learn firsthand what needs and capabilities he or she has. u Tap into the strategies that teachers of students with learning disabilities use for their students. Become knowledgeable about different learning styles. Then you can use the approach best suited for a particular child, based upon that child’s learning abilities as well as physical abilities. u Be inventive. Ask yourself (and others), “How can I adapt this lesson for this child to maximize active, hands-on learning?” u Learn to love assistive technology. Find experts within and outside your school to help you. Assistive technology can mean the difference between independence for your student or not. u Always remember, parents are experts, too. Talk candidly with your student’s parents. They can tell you a great deal about their daughter’s or son’s special needs and abilities. u Effective teamwork for the child with CP needs to bring together professionals with diverse backgrounds and expertise. The team must combine the knowledge of its members to plan, implement, and coordi- nate the child’s services.
  • 48. FS2, January 2004 4 What About SWhat About SWhat About SWhat About SWhat About Schoolchoolchoolchoolchool????? 4 A child with CP can face many challenges in school and is likely to need individualized help. Fortunately, states are responsible for meeting the educational needs of children with disabilities. For children up to age three, services are provided through an early intervention system. Staff work with the child’s family to develop what is known as an Individualized Family Services Plan, or IFSP. The IFSP will describe the child’s unique needs as well as the services the child will receive to address those needs. The IFSP will also emphasize the unique needs of the family, so that parents and other family members will know how to help their young child with CP. Early intervention services may be pro- vided on a sliding-fee basis, meaning that the costs to the family will depend upon their income. For school-aged children, including preschoolers, special education and related services will be provided through the school system. School staff will work with the child’s parents to develop an Individualized Education Program, or IEP. The IEP is similar to an IFSP in that it describes the child’s unique needs and the services that have been designed to meet those needs. Special education and related services, which can include PT, OT, and speech-language pathology, are provided at no cost to parents. In addition to therapy services and special equip- ment, children with CP may need what is known as assistive technology. Examples of assistive technology include: • Communication devices, which can range from the simple to the sophisticated. Communication boards, for example, have pictures, symbols, letters, or words attached. The child communicates by pointing to or gazing at the pictures or symbols. Augmentative communication devices are more sophisticated and include voice synthesizers that enable the child to “talk” with others. • Computer technology, which can range from electronic toys with special switches to sophisticated computer programs operated by simple switch pads or keyboard adaptations. 4 ResourcesResourcesResourcesResourcesResources 4 Geralis, E. (1998). Children with cerebral palsy: A parents’ guide (2nd ed.). Bethesda, MD: Woodbine House. (Phone: 800.843.7323. Web: www.woodbinehouse.com) Kelker, K.A., & Holt, R. (2000). Family guide to assistive technology. Cambridge, MA: Brookline Books. (Phone: 800.666.2665. Web: www.brooklinebooks.com) Miller, F., & Bachrach, S.J. (1998). Cerebral palsy: A complete guide for caregiving. Baltimore, MD: Johns Hopkins University Press. (Phone: 800.537.5487. Web: www.press.jhu.edu) Videos to rent: My Left Foot and Gaby: A True Story. 4 OtOtOtOtOther Wher Wher Wher Wher Web Seb Seb Seb Seb Sitesitesitesitesites 4 www.ninds.nih.gov—site of the National Institute of Neurological Disorders and Stroke at the National Institutes of Health www.dreamms.org—a non-profit information clearing- house on assistive technology www.lburkhart.com—ideas and instructions for adapting toys for use by children with CP 4 OrganizationsOrganizationsOrganizationsOrganizationsOrganizations 4 United Cerebral Palsy Associations, Inc. 1660 L Street, NW, Suite 700, Washington, DC 20036 202.776.0406; 202.973.7197 (TTY); 800.872.5827 (V/TTY) www.ucp.org Easter Seals—National Office 230 W. Monroe Street, Suite 1800, Chicago, IL 60606-4802 312.726.6200; 312.726.4258 (TTY); 800.221.6827 www.easter-seals.org Publication of this document is made possible through Cooperative Agreement #H326N030003 between the Academy for Educational Development and the Office of Special Education Programs of the U.S. Department of Education. The contents of this document do not necessarily reflect the views or policies of the Department of Education, nor does mention of trade names, commercial products, or organizations imply endorsement by the U.S. Government. This publication is copyright free. Readers are encouraged to copy and share it, but please credit the National Dissemination Center for Children with Disabilities (NICHCY). The Individuals with Disabilities Education Act (IDEA) guides how early intervention services and special education and related services are provided to children with disabilities. Under IDEA, cerebral palsy is considered an “orthopedic impairment,” which is defined as “. . . a severe orthopedic impairment that adversely affects a child’s educational performance. The term includes impairments caused by congenital anomaly (e.g. clubfoot, absence of some member, etc.), impairments caused by disease (e.g., poliomyelitis, bone tuberculosis, etc.), and impairments from other causes (e.g., cerebral palsy, amputations, and fractures or burns that cause contractures).” 34 Code of Federal Regulations §300.7(c)(8)
  • 49. NICHCYDisabilityFactSheet—No.5 DisabiDisabiDisabiDisabiDisabilitlitlitlitlity Fy Fy Fy Fy Fact Sact Sact Sact Sact Sheet, Nheet, Nheet, Nheet, Nheet, No. 5o. 5o. 5o. 5o. 5 January 2004January 2004January 2004January 2004January 2004 4 DDDDDefefefefefinitinitinitinitinitionionionionion 4 Many terms are used to describe emotional, behavioral, or mental disorders. Currently, students with such conditions are categorized as having an emotional disturbance, which is defined under the Individu- als with Disabilities Education Act (IDEA) as follows: “...a condition exhibiting one or more of the following characteristics over a long period of time and to a marked degree that adversely affects a child's educational performance— (A) An inability to learn that cannot be explained by intellectual, sensory, or health factors. (B) An inability to build or maintain satisfactory interpersonal relationships with peers and teachers. (C) Inappropriate types of behavior or feelings under normal circumstances. (D) A general pervasive mood of unhappiness or depression. (E) A tendency to develop physical symptoms or fears associated with personal or school problems.” [Code of Federal Regulations, Title 34, §300.7(c)(4)(i)] As defined by IDEA at §300.7(c)(4)(ii), emotional distur- bance includes schizophrenia but does not apply to children who are socially maladjusted, unless it is determined that they have an emotional disturbance. is the National Dissemination Center for Children with Disabilities. NICHCY P.O. Box 1492 Washington, DC 20013 1.800.695.0285 (Voice / TTY) 202.884.8200 (Voice / TTY) nichcy@aed.org www.nichcy.org EEEEEmotmotmotmotmotional Disturional Disturional Disturional Disturional DisturbancebancebancebancebanceEEEEEmotmotmotmotmotional Disturional Disturional Disturional Disturional Disturbancebancebancebancebance
  • 50. 4 IIIIIncidencencidencencidencencidencencidence 4 In the 2000-2001 school year, 473,663 children and youth with emotional disturbance were provided special education and related services in the public schools (Twenty-fourth Annual Report to Congress, U.S. Department of Education, 2002). 4 CharCharCharCharCharacteristacteristacteristacteristacteristicsicsicsicsics 4 The causes of emotional disturbance have not been adequately determined. Although various factors such as heredity, brain disorder, diet, stress, and family function- ing have been suggested as possible causes, research has not shown any of these factors to be the direct cause of behavior or emotional problems. Some of the characteristics and behaviors seen in children who have emotional disturbances include: • Hyperactivity (short attention span, impulsiveness); • Aggression/self-injurious behavior (acting out, fighting); • Withdrawal (failure to initiate interaction with others, retreat from exchanges or social interaction, excessive fear or anxiety); • Immaturity (inappropriate crying, temper tantrums, poor coping skills); and • Learning difficulties (academically performing below grade level). Children with the most serious emotional disturbances may exhibit distorted thinking, excessive anxiety, bizarre motor acts, and abnormal mood swings. Some are identified as children who have severe psychosisorschizophrenia. Many children who do not have emotional disturbance may display some of these same behaviors at various times during their development. However, when children have an emotional disturbance, these behaviors continue over long periods of time. Their behavior signals that they are not coping with their environmentorpeers. NICHCY: 1.800.695.0285 2 Fact Sheet on Emotional Disturbance (FS5) DDDDDon’t Bon’t Bon’t Bon’t Bon’t Be Se Se Se Se Shy!hy!hy!hy!hy! All of our publications and resource lists are online— help yourself! Visit us at: www.nichcy.org If you’d like personalized assistance, email or call us: nichcy@aed.org 1.800.695.0285 (V/TTY)
  • 51. 4 EEEEEducatducatducatducatducational Iional Iional Iional Iional Implicatmplicatmplicatmplicatmplicationsionsionsionsions 4 The educational programs for children with an emotional disturbance need to include attention to providing emotional and behavioral support as well as helping them to master academics, develop social skills, and increase self-awareness, self-control, and self-esteem. A large body of research exists regarding methods of providing students with positive behavioral support (PBS) in the school environment, so that problem behaviors are minimized and positive, appropriate behaviors are fostered. (See the resource list at the end of this publica- tion for more information on PBS.) It is also important to know that, within the school setting: • For a child whose behavior impedes learning (including the learning of others), the team develop- ing the child’s Individualized Education Program (IEP) needs to consider, if appropriate, strategies to address that behavior, including positive behavioral interven- tions, strategies, and supports. • Students eligible for special education services under the category of emotional disturbance may have IEPs that include psychological or counseling services. These are important related services which are available under law and are to be provided by a qualified social worker, psycholo- gist, guidance counselor, or other qualified personnel. • Career education (both vocational and academic) is also a major part of secondary education and should be a part of the transition plan included in every adolescent’s IEP. There is growing recognition that families, as well as their children, need support, respite care, intensive case management, and a collaborative, multi-agency approach to services. Many communities are working toward providing these wrap-around services. There are a growing number of agencies and organizations actively involved in establishing support services in the community. NICHCY: 1.800.695.0285 3 Fact Sheet on Emotional Disturbance (FS5) Other HelpfulOther HelpfulOther HelpfulOther HelpfulOther Helpful Things to KThings to KThings to KThings to KThings to Knownownownownow These NICHCY publications talk about topics important to parents of a child with a disability. Parenting a Child with Special Needs Your Child’s Evaluation Parent to Parent Support Questions Often Asked by Parents About Special Education Services Developing Your Child’s IEP All are available in English and in Spanish— on our Web site or by contacting us. A large body of research exists regarding methods of providing students with positive behavioral support (PBS) in the school environment.
  • 52. 4 Publication of this document is made possible through Cooperative Agreement #H326N030003 between the Academy for Educational Development and the Office of Special Education Programs of the U.S. Department of Education. The contents of this document do not necessarily reflect the views or policies of the Department of Education, nor does mention of trade names, commercial products, or organizations imply endorsement by the U.S. Government. This publication is copyright free. Readers are encouraged to copy and share it, but please credit NICHCY. FS5, January 2004 4 OtOtOtOtOther Consher Consher Consher Consher Consideriderideriderideratatatatationsionsionsionsions 4 Families of children with an emotional disturbance may need help in understanding their children’s condition and in learning how to work effectively with them. Parent support groups can be helpful in this regard. Organizations such as the National Mental Health Association (NMHA) and the National Alliance for the Mentally Ill (NAMI) have parent groups in every state. (See “Organizations.”) Help is also available from psychiatrists, psychologists, or other mental health professionals in public or private mental health settings. Children should be provided services based on their individual needs, and all persons who are involved with these children should be aware of the care they are receiving. It is important to coordinate all services between home, school, and therapeutic community with open communication. 4 ResourcesResourcesResourcesResourcesResources 4 Greene, R.W. (2001). The explosive child: A new approach for understanding and parenting easily frustrated chronically inflexible children. New York: Harper Collins. (Phone: 212.207.7000. Web: www.harpercollins.com/hc/home.asp) Jordan, D. (2001). A guidebook for parents of children with emo- tional or behavior disorders (3rd ed.). Minneapolis, MN: PACER. (Phone: 888.248.0822. Web: www.pacer.org) Koplewicz, H.S. (1997). It’s nobody's fault: New hope and help for difficult children. New York: Three Rivers Press. (To find a local or online bookseller, go to: www.randomhouse.com/reader_resources/ ordering.html) Miller, J.A. (1999). The childhood depression sourcebook. New York: McGraw-Hill. (Phone: 877.833.5524. Web: http://books.mcgraw- hill.com) Papolos, D., & Papolos, J. (2002). The bipolar child. New York: Broadway. (To find a local or online bookseller, go to: www.randomhouse.com/reader_resources/ordering.html) Wilen, T.E. (1998). Straight talk about psychiatric medications for kids. New York: Guilford. (Phone: 800.365.7006. Web: www.guilford.com) 4 OrganizatOrganizatOrganizatOrganizatOrganizationsionsionsionsions 4 American Academy of Child and Adolescent Psychiatry, Public Information Office 3615 Wisconsin Ave., NW Washington, DC 20016-3007 202.966.7300 www.aacap.org Center on Positive Behavioral Interventions and Supports 5262 University of Oregon Eugene, OR 97403-5262 541.346.2505 pbis@oregon.uregon.edu www.pbis.org Federation of Families for Children’s Mental Health, 1101 King Street, Suite 420 Alexandria, VA 22314 703.684.7710 ffcmh@ffcmh.org www.ffcmh.org National Alliance for the Mentally Ill (NAMI) Colonial Place Three, 2107 Wilson Boulevard, Suite 300, Arlington, VA 22201-3042 703.524.7600; 703.516.7227 (TTY) 800.950.6264 www.nami.org National Mental Health Association 2001 N. Beauregard St., 12th Floor Alexandria, VA 22311 703.684.7722; 800.969.6642 800.433.5959 (TTY) www.nmha.org National Mental Health Information Center P.O. Box 42557 Washington, DC 20015 800.789.2647;866.889.2647(TTY) www.mentalhealth.org
  • 53. NICHCYDisabilityFactSheet—No.3 DisabiDisabiDisabiDisabiDisabilitlitlitlitlity Fy Fy Fy Fy Fact Sact Sact Sact Sact Sheet, Nheet, Nheet, Nheet, Nheet, No. 3o. 3o. 3o. 3o. 3 January 2004January 2004January 2004January 2004January 2004 4 DDDDDefefefefefinitinitinitinitinitionionionionion 4 The Individuals with Disabilities Education Act (IDEA), formerly the Education of the Handicapped Act (P.L. 94-142), includes “hearing impairment” and “deafness” as two of the categories under which children with disabilities may be eligible for special education and related services programming. While the term “hearing impairment” is often used generically to describe a wide range of hearing losses, including deafness, the regulations for IDEA define hearing loss and deafness separately. Hearing impairment is defined by IDEA as “an impairment in hearing, whether permanent or fluctuating, that adversely affects a child’s educational performance.” Deafness is defined as “a hearing impairment that is so severe that the child is impaired in processing linguis- tic information through hearing, with or without amplification.” Thus, deafness may be viewed as a condition that prevents an individual from receiving sound in all or most of its forms. In contrast, a child with a hearing loss can generally respond to auditory stimuli, including speech. 4 IIIIIncidencencidencencidencencidencencidence 4 Hearing loss and deafness affect individuals of all ages and may occur at any time from infancy through old age. The U.S. Department of Education (2002) reports that during the 2000- 2001 school year, 70,767 students aged 6 to 21 (or 1.3% of all students with disabilities) received special education services under the category of “hearing impairment.” However, the number of children with hearing loss and deaf- is the National Dissemination Center for Children with Disabilities. NICHCY P.O. Box 1492 Washington, DC 20013 1.800.695.0285 (Voice / TTY) 202.884.8200 (Voice / TTY) nichcy@aed.org www.nichcy.org DDDDDeafeafeafeafeafnessnessnessnessness & H& H& H& H& Hearing Learing Learing Learing Learing Lossossossossoss DDDDDeafeafeafeafeafnessnessnessnessness & H& H& H& H& Hearing Learing Learing Learing Learing Lossossossossoss
  • 54. ness is undoubtedly higher, since many of these students may have other disabilities as well and may be served under other categories. 4 CharCharCharCharCharacteristacteristacteristacteristacteristicsicsicsicsics 4 It is useful to know that sound is measured by its loudness or intensity (measured in units called decibels, dB) and its frequency or pitch (measured in units called hertz, Hz). Impairments in hearing can occur in either or both areas, and may exist in only one ear or in both ears. Hearing loss is generally described as slight, mild, moderate, severe, or profound, depending upon how well a person can hear the intensities or frequencies most greatly associated with speech. Generally, only children whose hearing loss is greater than 90 decibels (dB) are considered deaf for the purposes of educational placement. There are four types of hearing loss. Conductive hearing losses are caused by diseases or obstructions in the outer or middle ear (the conduction pathways for sound to reach the inner ear). Conductive hearing losses usually affect all frequencies of hearing evenly and do not result in severe losses. A person with a conductive hearing loss usually is able to use a hearing aid well or can be helped medically or surgically. Sensorineural hearing losses result from damage to the delicate sensory hair cells of the inner ear or the nerves which supply it. These hearing losses can range from mild to profound. They often affect the person’s ability to hear certain frequencies more than others. Thus, even with amplification to increase the sound level, a person with a sensorineural hearing loss may perceive distorted sounds, sometimes making the successful use of a hearingaidimpossible. A mixed hearing loss refers to a combination of conductive and senso- rineural loss and means that a problem occurs in both the outer or middle and the inner ear. A central hearing loss results from damage or impairment to the nerves or nuclei of the central nervous system, either in the pathways to the brain or in the brain itself. NICHCY: 1.800.695.0285 2 Fact Sheet on Deafness (FS3) DDDDDon’t Bon’t Bon’t Bon’t Bon’t Be Se Se Se Se Shy!hy!hy!hy!hy! All of our publications and resource lists are online— help yourself! Visit us at: www.nichcy.org If you’d like personalized assistance, email or call us: nichcy@aed.org 1.800.695.0285 (V/TTY)
  • 55. 4 EEEEEducatducatducatducatducational Iional Iional Iional Iional Implicatmplicatmplicatmplicatmplicationsionsionsionsions 4 Hearing loss or deafness does not affect a person’s intellectual capacity or ability to learn. However, children who are either hard of hearing or deaf generally require some form of special education services in order to receive an adequate education. Such services may include: • regular speech, language, and auditory training from a specialist; • amplification systems; • services of an interpreter for those students who use sign language; • favorable seating in the class to facilitate lip reading; • captioned films/videos; • assistance of a notetaker, who takes notes for the student with a hearing loss, so that the student can fully attend to instruction; • instruction for the teacher and peers in alternate communication methods, such as sign language; and • counseling. Children who are hard of hearing will find it much more difficult than children who have normal hearing to learn vocabulary, grammar, word order, idiomatic expressions, and other aspects of verbal communication. For children who are deaf or have severe hearing losses, early, consistent, and conscious use of visible communication modes (such as sign language, fingerspelling, and Cued Speech) and/or amplification and aural/oral training can help reduce this language delay. By age four or five, most children who are deaf are enrolled in school on a full- day basis and do special work on communication and language development. It is important for teachers and audiologists to work together to teach the child to use his or her residual hearing to the maximum extent possible, even if the preferred means of communication is manual. Since the great majority of deaf children (over 90%) are born to hearing parents, programs should provide instruction for parents on implications of deafness within the family. NICHCY: 1.800.695.0285 3 Fact Sheet on Deafness (FS3) OtOtOtOtOther Hher Hher Hher Hher Helpfelpfelpfelpfelpfululululul Things to KThings to KThings to KThings to KThings to Knownownownownow These NICHCY publications talk about topics important to parents of a child with a disability. Parenting a Child with Special Needs Your Child’s Evaluation Parent to Parent Support Questions Often Asked by Parents About Special Education Services Developing Your Child’s IEP All are available in English and in Spanish— on our Web site or by contacting us. Hearing loss or deafness does not affect a person’s intellectual capacity or ability to learn.
  • 56. 4 Publication of this document is made possible through Cooperative Agreement #H326N030003 between the Academy for Educational Development and the Office of Special Education Programs of the U.S. Department of Education. The contents of this document do not necessarily reflect the views or policies of the Department of Education, nor does mention of trade names, commercial products, or organizations imply endorsement by the U.S. Government. This publication is copyright free. Readers are encouraged to copy and share it, but please credit NICHCY. FS3, January 2004 People with hearing loss use oral or manual means of communication or a combination of the two. Oral comm- unication includes speech, lip reading, and the use of residual hearing. Manual communication involves signs and fingerspelling. Total Communication, as a method of instruction, is a combination of the oral method plus signing and fingerspelling. Individuals with hearing loss, including those who are deaf, now have many helpful devices available to them. Text telephones (known as TTs, TTYs, or TDDs) enable persons to type phone messages over the telephone network. The Telecommunications Relay Service (TRS) makes it possible for TT users to communicate with virtually anyone (and vice versa) via telephone. Dial 711 to access all TRSs anywhere in the United States. The relay service is free. 4 ResourcesResourcesResourcesResourcesResources 4 Luterman, D.M. (2002). When your child is deaf: A guide for parents (2nd ed.). Parkton, MD: York Press. (Phone: 800.962.2763. Web: www.yorkpress.com/index.html) Medwid, D.J., & Weston, D.C. (1995). Kid-friendly parenting with deaf and hard of hearing children: A treasury of fun activities toward better behavior. Washington, DC: Gallaudet University Press. (Phone: 800.621.2736; 888.630.9347 (V/TTY). Web: http://gupress.gallaudet.edu) Ogden, P.W. (1996). The silent garden: Raising your deaf child (Rev. ed.). Washington, DC: Gallaudet University Press. (See contact information above.) Schwartz, S. (Ed.). (1996). Choices in deafness: A parents’ guide to communication options (2nd ed.). Bethesda, MD: Woodbine House. (Phone: 800.843.7323. Web: www.woodbinehouse.com) So your child has a hearing loss: Next steps for parents (n.d.). (Available online at: www.agbell.org/information/ brochures_parent_so.cfm) 4 OrganizatOrganizatOrganizatOrganizatOrganizationsionsionsionsions 4 Alexander Graham Bell Association for the Deaf and Hard of Hearing 3417 Volta Place, NW, Washington, DC 20007 202.337.5220; 202.337.5221 (TTY) info@agbell.org www.agbell.org American Society for Deaf Children P.O. Box 3355, Gettysburg, PA 17325 717.334.7922 (V/TTY); 800.942.2732 (V/TTY) ASDC1@aol.com www.deafchildren.org American Speech-Language-Hearing Association 10801 Rockville Pike, Rockville, MD 20852 301.897.5700 (V/TTY) 800.638.8255 (V/TTY) www.asha.org Laurent Clerc National Deaf Education Center KDES PAS-6, Gallaudet University 800 Florida Avenue N.E. Washington, DC 20002-3695 202.651.5051 (V/TTY) Clearinghouse.InfoToGo@gallaudet.edu http://clerccenter.gallaudet.edu/InfoToGo National Institute on Deafness and Other Communication Disorders Information Clearinghouse 1 Communication Avenue Bethesda, MD 20892-3456 800.241.1044; 800.241.1055 (TTY) nidcdinfo@nidcd.nih.gov www.nidcd.nih.gov/ Self Help for Hard of Hearing People (SHHH) 7910 Woodmont Avenue, Suite 1200 Bethesda, MD 20814 301.657.2248;301.657.2249(TTY) info@hearingloss.org www.hearingloss.org
  • 57. NICHCYDisabilityFactSheet—No.13 DisabiDisabiDisabiDisabiDisabilitlitlitlitlity Fy Fy Fy Fy Fact Sact Sact Sact Sact Sheet, Nheet, Nheet, Nheet, Nheet, No. 13o. 13o. 13o. 13o. 13 JJJJJanuary 2004anuary 2004anuary 2004anuary 2004anuary 2004 4 DDDDDefefefefefinitinitinitinitinitionionionionion 4 The terms partially sighted, low vision, legally blind, and totally blind are used in the educational context to describe students with visual impairments. These terms are defined as follows: • “Partially sighted” indicates some type of visual problem has resulted in a need for special education; • “Low vision” generally refers to a severe visual impairment, not necessarily limited to distance vision. Low vision applies to all individuals with sight who are unable to read the newspaper at a normal viewing distance, even with the aid of eyeglasses or contact lenses. They use a combination of vision and other senses to learn, although they may require adaptations in lighting, the size of print, and, sometimes, braille; • “Legally blind” indicates that a person has less than 20/200 vision in the better eye or a very limited field of vision (20 degrees at its widest point); and • Totally blind students, who learn via braille or other non-visual media. Visual impairment is the consequence of a functional loss of vision, rather than the eye disorder itself. Eye disorders which can lead to visual impairments can include retinal degeneration, albinism, cataracts, glaucoma, muscular problems that result in visual disturbances, corneal disorders, diabetic retinopathy, congenital disorders, and infection. is the National Dissemination Center for Children with Disabilities. NICHCY P.O. Box 1492 Washington, DC 20013 1.800.695.0285 (Voice / TTY) 202.884.8200 (Voice / TTY) nichcy@aed.org www.nichcy.org VVVVVisual Iisual Iisual Iisual Iisual ImpampampampampairmenirmenirmenirmenirmentststststsVVVVVisual Iisual Iisual Iisual Iisual Impampampampampairmenirmenirmenirmenirmentststststs
  • 58. NICHCY: 1.800.695.0285 2 Fact Sheet on Visual Impairments (FS13) Don’t Be Shy!Don’t Be Shy!Don’t Be Shy!Don’t Be Shy!Don’t Be Shy! All of our publications and resource lists are online— help yourself! Visit us at: www.nichcy.org If you’d like personalized assistance, email or call us: nichcy@aed.org 1.800.695.0285 (V/TTY) 4 IIIIIncidencencidencencidencencidencencidence 4 The rate at which visual impairments occur in individuals under the age of 18 is 12.2 per 1,000. Severe visual impairments (legally or totally blind) occur at a rate of .06 per 1,000. 4 CharCharCharCharCharacteristacteristacteristacteristacteristicsicsicsicsics 4 The effect of visual problems on a child’s development depends on the severity, type of loss, age at which the condition appears, and overall functioning level of the child. Many children who have multiple disabilities may also have visual impairments resulting in motor, cognitive, and/or social developmental delays. A young child with visual impairments has little reason to explore interesting objects in the environment and, thus, may miss opportunities to have experiences and to learn. This lack of exploration may continue until learning becomes motivating or until intervention begins. Because the child cannot see parents or peers, he or she may be unable to imitate social behavior or under- stand nonverbal cues. Visual disabilities can create obstacles to a growingchild’sindependence. 4 EEEEEducatducatducatducatducational Iional Iional Iional Iional Implicatmplicatmplicatmplicatmplicationsionsionsionsions 4 Children with visual impairments should be assessed early to benefit from early intervention programs, when applicable. Technology in the form of computers and low-vision optical and video aids enable many partially sighted, low vision, and blind children to participate in regular class activities. Large print materials, books on tape, and braille books are available.
  • 59. Students with visual impairments may need additional help with special equipment and modifications in the regular curriculum to emphasize listening skills, communi- cation, orientation and mobility, vocation/career options, and daily living skills. Students with low vision or those who are legally blind may need help in using their residual vision more efficiently and in working with special aids and materials. Students who have visual impairments combined with other types of disabilities have a greater need for an interdisciplinary approach and may require greater emphasis on self care and daily living skills. 4 ResourcesResourcesResourcesResourcesResources 4 American Foundation for the Blind. Search AFB’s Service Center on the Internet to identify services for blind and visually impaired persons in the United States and Canada. Available: www.afb.org/services.asp Holbrook, M.C. (Ed.). (1996). Children with visual impairments: A parents' guide. Bethesda, MD: Woodbine. (Phone: 800.843.7323. Web: www.woodbinehouse.com) Lewis, S., & Allman, C.B. (2000). Seeing eye to eye: An administrator's guide to students with low vision. New York: American Foundation for the Blind. (Phone: 800.232.3044. Web: www.afb.org) National Eye Institute. (2003, December). Eye health organizations list. (Available online at: www.nei.nih.gov/health/organizations.htm) NICHCY: 1.800.695.0285 3 Fact Sheet on Visual Impairments (FS13) OtOtOtOtOther Hher Hher Hher Hher Helpfelpfelpfelpfelpfululululul Things to KnowThings to KnowThings to KnowThings to KnowThings to Know These NICHCY publications talk about topics important to parents of a child with a disability. Parenting a Child with Special Needs Your Child’s Evaluation Parent to Parent Support Questions Often Asked by Parents About Special Education Services Developing Your Child’s IEP All are available in English and in Spanish— on our Web site or by contacting us. The terms partially sighted, low vision, legally blind, and totally blind are used in the educational context to describe students with visual impairments.
  • 60. Publication of this document is made possible through Cooperative Agreement #H326N030003 between the Academy for Educational Development and the Office of Special Education Programs of the U.S. Department of Education. The contents of this document do not necessarily reflect the views or policies of the Department of Education, nor does mention of trade names, commercial products, or organizations imply endorsement by the U.S. Government. This publication is copyright free. Readers are encouraged to copy and share it, but please credit NICHCY. FS13, January 2004 4 OrganizatOrganizatOrganizatOrganizatOrganizationsionsionsionsions 4 American Council of the Blind 1155 15th St. N.W., Suite 1004 Washington, D.C. 20005 202.467.5081;800.424.8666 info@acb.org www.acb.org American Foundation for the Blind 11 Penn Plaza, Suite 300 New York, NY 10001 800.232.5463 (Hotline) For publications call: 800.232.3044 afbinfo@afb.net www.afb.org Blind Children’s Center 4120 Marathon Street Los Angeles, CA 90029-0159 323.664.2153;800.222.3566 info@blindchildrenscenter.org www.blindchildrenscenter.org National Association for Parents of the Visually Impaired, Inc. P.O. Box 317 Watertown, MA 02472-0317 617.972.7441;800.562.6265 napvi@perkins.org www.napvi.org National Association for Visually Handicapped 22 West 21st Street, 6th Floor New York, NY 10010 212.889.3141 staff@navh.org www.navh.org National Braille Association, Inc. (NBA) 3 Townline Circle Rochester, NY 14623-2513 585.427.8260 nbaoffice@nationalbraille.org www.nationalbraille.org/ National Braille Press 88 St. Stephen Street Boston, MA 02115 617.266.6160;888.965.8965 orders@nbp.org www.nbp.org National Eye Institute 31 Center Drive MSC2510 Bethesda, MD 20892-2510 301.496.5248 2020@nei.nih.gov www.nei.nih.gov National Federation of the Blind, Parents Division 1800 Johnson Street Baltimore, MD 21230 410.659.9314,ext.360 nfb@nfb.org www.nfb.org/nopbc.htm National Library Service for the Blind and Physically Handicapped, Library of Congress 1291 Taylor Street, N.W. Washington, D.C. 20011 202.707.5100;202.707.0744(TTY); 800.424.8567 nls@loc.gov www.loc.gov/nls Prevent Blindness America 500 E. Remington Road Schaumburg, IL 60173 847.843.2020;800.331.2020 info@preventblindness.org www.preventblindness.org The Foundation Fighting Blindness (formerly the National Retinitis Pigmentosa Foundation) 11435 Cronhill Drive Owings Mills, MD 21117-2220 410.568.0150;410.363.7139(TTY) 888.394.3937;800.683.5551(TTY) info@blindness.org www.blindness.org 4
  • 61. NICHCYDisabilityFactSheet—No.11 DisabiDisabiDisabiDisabiDisabilitlitlitlitlity Fy Fy Fy Fy Fact Sact Sact Sact Sact Sheet, Nheet, Nheet, Nheet, Nheet, No. 11o. 11o. 11o. 11o. 11 JJJJJanuary 2004anuary 2004anuary 2004anuary 2004anuary 2004 4 DDDDDefefefefefinitinitinitinitinitionionionionion 4 Speech and language disorders refer to problems in communication and related areas such as oral motor function. These delays and disorders range from simple sound substitu- tions to the inability to understand or use language or use the oral-motor mechanism for functional speech and feeding. Some causes of speech and language disorders include hearing loss, neurological disorders, brain injury, mental retardation, drug abuse, physical impairments such as cleft lip or palate, and vocal abuse or misuse. Frequently, however, the cause is unknown. 4 IIIIIncidencencidencencidencencidencencidence 4 More than one million of the students served in the public schools’ special education programs in the 2000-2001 school year were categorized as having a speech or language impairment. This estimate does not include children who have speech/ language problems secondary to other conditions such as deafness. Language disorders may be related to other disabilities such as mental retardation, autism, or cerebral palsy. It is estimated thatcommunicationdisorders (including speech, language, and hearing disorders) affect one of every 10 people in the United States. 4 CharCharCharCharCharacteristacteristacteristacteristacteristicsicsicsicsics 4 A child’s communication is considered delayed when the child is noticeably behind his or her peers in the acquisition of speech and/or language skills. Sometimes a child will have greater receptive (understand- ing) than expressive (speaking) language skills, but this is not always the case. is the National Dissemination Center for Children with Disabilities. NICHCY P.O. Box 1492 Washington, DC 20013 1.800.695.0285 (Voice / TTY) 202.884.8200 (Voice / TTY) nichcy@aed.org www.nichcy.org SSSSSpeech & Languagepeech & Languagepeech & Languagepeech & Languagepeech & Language IIIIImpampampampampairmenirmenirmenirmenirmentststststs SSSSSpeech & Languagepeech & Languagepeech & Languagepeech & Languagepeech & Language IIIIImpampampampampairmenirmenirmenirmenirmentststststs
  • 62. NICHCY: 1.800.695.0285 2 Fact Sheet on Speech/Language Disorders (FS11) Don’t Be Shy!Don’t Be Shy!Don’t Be Shy!Don’t Be Shy!Don’t Be Shy! All of our publications and resource lists are online— help yourself! Visit us at: www.nichcy.org If you’d like personalized assistance, email or call us: nichcy@aed.org 1.800.695.0285 (V/TTY) Speech disorders refer to difficulties producing speech sounds or problems with voice quality. They might be characterized by an interruption in the flow or rhythm of speech, such as stuttering, which is called dysfluency. Speech disorders may be problems with the way sounds are formed, called articulation or phonological disorders, or they may be difficulties with the pitch, volume, or quality of the voice. There may be a combination of several problems. People with speech disorders have trouble using some speech sounds, which can also be a symptom of a delay. They may say “see” when they mean “ski” or they may have trouble using other sounds like “l” or “r.” Listeners may have trouble understanding what someone with a speech disorder is trying to say. People with voice disorders may have trouble with the way their voices sound. A language disorder is an impairment in the ability to understand and/or use words in context, both verbally and nonverbally. Some characteristics of language disorders include improper use of words and their meanings, inabil- ity to express ideas, inappropriate grammatical patterns, reduced vocabulary, and inability to follow directions. One or a combination of these characteristics may occur in children who are affected by language learning disabilities or developmental language delay. Children may hear or see a word but not be able to understand its meaning. They may have trouble getting others to understand what they are trying to communicate. 4 EEEEEducatducatducatducatducational Iional Iional Iional Iional Implicatmplicatmplicatmplicatmplicationsionsionsionsions 4 Becauseallcommunicationdisorders carry the potential to isolate individuals from their social and educational surroundings, it is essential to find appropriatetimelyintervention.While many speech and language patterns can be called “baby talk” and are part of a young child’s normal development, they
  • 63. can become problems if they are not outgrown as expected. In this way an initial delay in speech and language or an initial speech pattern can become a disorder that can cause difficulties in learning. Because of the way the brain develops, it is easier to learn language and communication skills before the age of 5. When children have muscular disorders, hearing problems, or developmental delays, their acquisition of speech, language, and related skills is often affected. Speech-language pathologists assist children who have communication disorders in various ways. They provide individual therapy for the child; consult with the child’s teacher about the most effective ways to facilitate the child’s communication in the class setting; and work closely with the family to develop goals and techniques for effective therapy in class and at home. The speech- language pathologist may assist vocational teachers and counselors in establishing communication goals related to the work experiences of students and suggest strategies that are effective for the important transition from school to employment and adult life. Technology can help children whose physical conditions make communication difficult. The use of electronic communication systems allow nonspeaking people and peoplewithseverephysicaldisabilities to engage in the give and take of shared thought. Vocabulary and concept growth continues during the years children are in school. Reading and writing are taught and, as students get older, the understanding and use of language becomes more complex. Communication skills are at the heart of the education experience. Speech and/or language therapy may continue throughout a student’s school years either in the form of direct therapy or on a consultant basis. NICHCY: 1.800.695.0285 3 Fact Sheet on Speech/Language Disorders (FS11) OtOtOtOtOther Hher Hher Hher Hher Helpfelpfelpfelpfelpfululululul Things to KnowThings to KnowThings to KnowThings to KnowThings to Know These NICHCY publications talk about topics important to parents of a child with a disability. Parenting a Child with Special Needs Your Child’s Evaluation Parent to Parent Support Questions Often Asked by Parents About Special Education Services Developing Your Child’s IEP All are available in English and in Spanish— on our Web site or by contacting us. Because of the way the brain develops, it is easier to learn language and communication skills before the age of 5.
  • 64. 4 Publication of this document is made possible through Cooperative Agreement #H326N030003 between the Academy for Educational Development and the Office of Special Education Programs of the U.S. Department of Education. The contents of this document do not necessarily reflect the views or policies of the Department of Education, nor does mention of trade names, commercial products, or organizations imply endorsement by the U.S. Government. This publication is copyright free. Readers are encouraged to copy and share it, but please credit NICHCY. FS11, January 2004 4 ResourcesResourcesResourcesResourcesResources 4 Brice, A. (2001). Children with communication disorders (ERIC Digest #E617). Arlington, VA: ERIC Clearinghouse on Disabilities and Gifted Education. (Available online at: http://ericec.org/digests/e617.html) Charkins, H. (1996). Children with facial differences: A parents' guide. Bethesda, MD: Woodbine House. (Phone: 800.843.7323. Web: www.woodbinehouse.com) Cleft Palate Foundation. (1997). For parents of newborn babies with cleft lip/cleft palate. Chapel Hill, NC: Author. (Phone: 800.242.5338. Also available online at: www.cleftline.org) Gruman-Trinker, C. (2001). Your cleft-affected child: The complete book of information, resources and hope. Alameda, CA: Hunter House. (Web: www.hunterhouse.com) Hamaguchi, P.M. (2001). Childhood speech, language, and listening problems: What every parent should know (2nd ed.). New York: John Wiley. (Phone: 800.225.5945. Web: www.wiley.com/) 4 OrganizatOrganizatOrganizatOrganizatOrganizationsionsionsionsions 4 Alliance for Technology Access 2175 E. Francisco Blvd., Suite L San Rafael, CA 94901 415.455.4575; 800.455.7970 atainfo@ataccess.org www.ataccess.org American Speech-Language-Hearing Association (ASHA) 10801 Rockville Pike, Rockville, MD 20852 301.897.5700 (V/TTY); 800.638.8255 actioncenter@asha.org www.asha.org Childhood Apraxia of Speech Association of North America (CASANA) 123 Eisele Road, Cheswick, PA 15024 412.767.6589 helpdesk@apraxia.org www.apraxia-kids.org Cleft Palate Foundation 104 South Estes Drive, Suite 204 Chapel Hill, NC 27514 919.933.9044;800.242.5338 info@cleftline.org www.cleftline.org Easter Seals—National Office 230 West Monroe Street, Suite 1800 Chicago, IL 60606 312.726.6200;312.726.4258(TTY); 800.221.6827 info@easter-seals.org www.easter-seals.org Learning Disabilities Association of America (LDA) 4156 Library Road Pittsburgh, PA 15234-1349 412.341.1515 info@ldaamerica.org www.ldaamerica.org Scottish Rite Foundation Southern Jurisdiction, U.S.A., Inc. 1733 Sixteenth Street, N.W. Washington, DC 20009 202.232.3579. www.srmason-sj.org/web/index.htm Trace Research and Development Center University of Wisconsin- Madison 1550 Engineering Dr. 2107 Engineering Hall Madison, WI 53706 608.262.6966;608.263.5408(TTY) info@trace.wisc.edu www.trace.wisc.edu
  • 65. Causes and Prevention of Mental Retardation What is mental retardation? The definition used most often in the United States is from the American Association on Mental Retardation (AAMR). According to AAMR, mental retardation is a disability that occurs before age 18. It is characterized by significant limitations in intellectual functioning and adaptive behavior as expressed in conceptual, social and practical adaptive skills. It is diagnosed through the use of standardized tests of intelligence and adaptive behavior. Mental retardation is generally thought to be present if an individual has an IQ test score of approximately 70 or below and a significant deficit in at least one area of adaptive behavior (AAMR, 2002). What are the causes of mental retardation? Mental retardation can be caused by any condition that impairs development of the brain before birth, during birth or in the childhood years. Several hundred causes have been discovered, but in about one-third of the people affected, the cause remains unknown. The three major known causes of mental retardation are Down syndrome, fetal alcohol syndrome and fragile X syndrome. The causes can be categorized as follows: • Genetic conditions - These result from abnormalities of genes inherited from parents, errors when genes combine, or from other disorders of the genes caused during pregnancy by infections, overexposure to x-rays and other factors. There are many genetic diseases associated with mental retardation. Some examples include PKU (phenylketonuria), a single gene disorder. Due to a missing or defective enzyme, children with PKU cannot process a part of a protein called phenylalanine. Without treatment, phenylalanine builds up in the blood and causes mental retardation. Down syndrome is an example of a chromosomal disorder. Chromosomal disorders happen sporadically and are caused by too many or too few chromosomes, or by a change in structure of a chromosome. Fragile X syndrome is a single gene disorder located on the X chromosome and is the leading inherited cause of mental retardation. • Problems during pregnancy - Use of alcohol or drugs by the pregnant mother can cause mental retardation. In fact, alcohol is known to be the leading preventable cause of mental retardation. Recent research has implicated smoking in increasing the risk of mental retardation. Other risks include malnutrition, certain environmental toxins, and illnesses of the mother during pregnancy, such as toxoplasmosis, cytomegalovirus, rubella and syphillis. • Problems at birth - Prematurity and low birth weight predict serious problems more often than any other conditions. Difficulties in the birth process such as temporary oxygen deprivation or birth injuries may cause mental retardation. • Problems after birth - Childhood diseases such as whooping cough, chicken pox, measles, and Hib disease that may lead to meningitis and encephalitis can damage the brain, as can injuries such as a blow to the head or near drowning. Lead, mercury and other environmental toxins can cause irreparable damage to the brain and nervous system. • Poverty and cultural deprivation - Children growing up in poverty are at higher risk for malnutrition, childhood diseases, exposure to environmental health hazards and often receive inadequate health care. These factors increase the risk of mental retardation. Also, children in disadvantaged areas may be deprived of many common cultural and educational experiences provided to other youngsters. Research suggests that such under-stimulation can result in irreversible damage and can serve as a cause of mental retardation. Can mental retardation be prevented? During the past 30 years, significant advances in research have prevented many cases of mental retardation. For example, every year in the United States, we prevent: • 250 cases of mental retardation due to phenylketonuria (PKU) by newborn screening and dietary treatment; • 1,000 cases of mental retardation due to congenital hypothyroidism thanks to newborn screening and thyroid hormone replacement therapy; • 1,000 cases of mental retardation by use of anti-Rh immune globulin to prevent Rh disease and severe jaundice in newborn infants; • 5,000 cases of mental retardation caused by Hib diseases by using the Hib vaccine; • 4,000 cases of mental retardation due to measles encephalitis thanks to the measles vaccine; and untold numbers of cases of mental retardation caused by National Headquarters, 1010 Wayne Ave., Suite 650, Silver Spring, MD 20910, (301) 565-3842, (301) 565-5342 FAX Web site: www.thearc.org E-mail: info@thearc.org
  • 66. German measles during pregnancy thanks to rubella vaccine (Alexander, 1998). Other interventions have reduced the chance of mental retardation. Removing lead from the environment reduces brain damage in children. Preventive interventions such as child safety seats and bicycle helmets reduce head trauma. Early intervention programs with high-risk infants and toddlers have shown positive effects on intellectual functioning. Finally, early comprehensive prenatal care and preventive measures prior to and during pregnancy increase a woman's chances of preventing mental retardation. Dietary supplementation with folic acid, taken before and during pregnancy, reduces the risk of neural tube defects. Women who have phenylketonuria (PKU) should be counseled to go on a restricted phenylalanine diet three months prior to pregnancy to prevent mental retardation in their baby. What can a couple do to reduce the chances of having a baby born with mental retardation? The health of a baby can depend on how healthy a mother is before pregnancy. Ideally, she should obtain a general health assessment six months before pregnancy that includes: • updating immunizations; • reviewing use of medications; • reviewing diet and vitamin supplementation, including folic acid; • considering genetic counseling; and • stopping use of alcohol, cigarettes or other tobacco forms, illegal drugs, and legal drugs not approved by the doctor. Prenatal care should begin as soon as she suspects she is pregnant. During pregnancy, a woman can protect the developing fetus by: • getting plenty of rest and sleep; • eating nutritious meals; • avoiding alcohol, cigarettes and drugs; • avoiding people who are sick; • wearing seat belts in a car; and • not lifting heavy objects. When should a couple consider genetic counseling? Genetic counseling should be considered if: • the child may inherit a genetic or chromosomal disorder because of a specific condition in the family; • a previous birth to either parent resulted in a child with a genetic disorder, unexplained mental retardation or a birth defect; • the mother has had two or more miscarriages or a baby who died in infancy; • the mother is 35 years of age or over; • either partner is of a race or ethnic group with a high incidence of a genetic condition; and • the partners are blood relatives. How can children be protected to avoid childhood causes of mental retardation? Mental retardation can be prevented during childhood by knowing the causes and taking steps to keep children safe and healthy. These steps include: • Immunizations to protect children from at least six diseases that can lead to brain damage. These include measles, mumps, pertussis (whooping cough), Hib disease, varicella (chicken pox), and pneumococcal disease. • Injury prevention to avoid brain damage, such as using bicycle helmets and safety seats and seat belts in automobiles; preventing near-drowning; preventing falls and protecting babies from severe shaking. • Newborn screening to identify treatable genetic conditions. • Reducing the incidence of Reye’s syndrome caused by giving medicines containing salicylate (aspirin); instead, using medicines containing acetaminophen (such as Tylenol) to reduce the brain damage caused by Reye’s syndrome. • Reducing exposure to lead, mercury and other toxins in the environment that are known to cause brain damage. • Protecting children from household products that are poisonous. References American Association on Mental Retardation. (2002). Mental Retardation: Definition, Classification, and Systems of Supports, 10th Edition. Washington, DC. Alexander, D. (1998). Prevention of Mental Retardation: Four Decades of Research. Mental Retardation and Developmental Disabilities Research Reviews. 4: 50- 58. The Arc of the United States. (2001). Preventing Mental Retardation: A Guide to the Causes of Mental Retardation and Strategies for Prevention. Silver Spring, MD. http://www.thearc.org/publications/prevention.pdf Where can I go for more information? You will find a wide variety of information on The Arc’s web site: http://www.thearc.org/causes.html and on the web site of the National Center on Birth Defects and Developmental Disabilities: http://www.cdc.gov/ncbddd/ The Arc thanks members of the Health Promotion and Disability Committee, Deborah Cohen, NJ; Joan Arnold, OH; and Peter Leibert, CA, for editing this fact sheet. May 2005
  • 67. Mental Retardation vs. Mental Illness -- What's the Difference? Mental Retardation Mental Illness 1. Mental retardation* refers to subaverage intellectual functioning. 1. Mental illnesses are medical conditions that disrupt a person’s thinking, feeling, mood, ability to relate to others, and daily functioning. Just as diabetes is a disorder of the pancreas, mental illnesses are medical conditions that often result in a diminished capacity for coping with the ordinary demands of life. Mental illness has nothing to do with intelligence. Serious mental illnesses include major depression, schizophrenia, bipolar disorder, obsessive compulsive disorder (OCD), panic disorder, post traumatic stress disorder (PTSD), and borderline personality disorder. 2. Mental retardation refers to impairment in social adaptation. 2. A person with a mental illness may be very competent socially, but may have a character disorder or other aberration. 3. National incidence: 3% of the general population. Ohio incidence: 1.4 to 1.9% of the general population of Ohio is estimated to have severe functional limitation due to mental retardation or other developmental disabilities. 3. Mental disorders fall along a continuum of severity. Even though mental illness disorders are widespread in the population, the main burden of illness is concentrated in a much smaller proportion — about 6 percent, or 1 in 17 Americans — who suffer from a serious mental illness. It is estimated that mental illness affects 1 in 5 families in America. 4. Mental retardation is present at birth or occurs during the period of development. 4. Mental illnesses can affect persons of any age, race, religion, or income. Mental illnesses are not the result of personal weakness, lack of character, or poor upbringing. Mental illnesses are treatable. Most people diagnosed with a serious mental illness can experience relief from their symptoms and manage symptoms by actively participating in an individual treatment plan. 5. In mental retardation, some degree of intellectual impairment can be expected to be permanent. 5. Individuals with mental illness and their families receive support and services from private practice, their local mental health authority (which may be county-based or regional) and the Ohio Department of Mental Health.** 6. A person with mental retardation can be expected to behave rationally at his/her functional level. 6. A person with mental illness may vacillate between normal and irrational behavior. 7. People with mental retardation can also experience different types of mental illness with symptoms such as hallucinations or severe depression, secondary to the condition of mental retardation. 7. The term mental illness covers a wide variety of symptoms that may indicate that someone is in emotional trouble, including: belligerence, excessive moodiness, suspicion and mistrust, or poor emotional control. *Mental retardation is a developmental disability. People with developmental disabilities may experience difficulty in such areas as self-care, language, mobility, learning, self-direction, independent living or self-sufficiency. Some common developmental disabilities in addition to mental retardation are epilepsy, autism, cerebral palsy, learning disabilities, and Tourette syndrome. From the Ohio Public Images Web Site.
  • 68. What are the Characteristics of FASD? © 2000-2005 Teresa Kellerman FAS Community Resource Center Babies diagnosed with Fetal Alcohol Syndrome (FAS) have the following physiological characteristics: • Small birth weight • Small head circumference • Small eye openings • Smooth, wide philtrum • Thin upper lip Babies who have some but not all of these characteristics may be diagnosed with partial Fetal Alcohol Syndrome (pFAS). Note: Facial characteristics may not be as apparent immediately after birth or during adolescence or adulthood as they are between the ages of two and ten. Facial characteristics may not be present at all if the mother did not drink alcohol during the brief period that the midface was forming - around the 20th day of pregnancy. Children who were prenatally exposed to alcohol may have significant neurological dysfunction even without the facial characteristics. Those who have central nervous system damage without the physical symptoms may be diagnosed with Alcohol Related Neurodevelopmental Disorders (ARND). Together, the diagnoses of FAS, pFAS and ARND comprise the umbrella term Fetal Alcohol Spectrum Disorders (FASD). Most infants with FASD are irritable, have trouble sleeping and eating, are sensitive to sensory stimulation, and startle easily. They may hyperextend their heads or limbs, and can exhibit hypertonia (too much muscle tone) or hypotonia (too little muscle tone) or both. Some infants may have heart defects or suffer anomalies to the ears, eyes, liver, or joints. Most children with FAS have developmental delays but some have no delays at all. Some individuals with FASD may have lower than normal IQ. However, most children with FAS and ARND have normal intelligence and appearance. The most serious characteristics of FASD are the invisible symptoms of neurological damage that results from prenatal exposure to alcohol, These symptoms include: • Attention deficits (with or without hyperactivity) • Memory deficits • Difficulty with abstract concepts (math, time, money) • Poor problem solving skills • Difficulty learning from consequences • Poor judgment • Immature behavior • Poor impulse control Note: These symptoms are not "behavior problems" but are a result of permanent, unchanging damage to the brain (static encephalopathy) and are not within the child's control. Adults with FASD have difficulty maintaining successful independence. They have trouble staying in school, keeping jobs, or sustaining healthy relationships. Without appropriate support services, these individuals have a high risk of developing secondary disabilities such as mental illness, getting into trouble with the law, abusing alcohol and other drugs, and unwanted pregnancies. Children and adults with FAS are also quite vulnerable to physical, sexual, and emotional abuse. For more information on FASD, visit the FAS Community Resource Center www.fasstar.com/fas
  • 69. What is Intellectual Disability? 7  The term ‘intellectual disability’ is a fairly new term that has the same meaning as mental retardation. You may see both terms used to mean the same thing.  The term “mental retardation” is the term used in law and public policy to determine eligibility for state and federal programs, including the Individuals with Disabilities Education Act—IDEA (2004), Social Security Disability Insurance, and Medicaid Home and Community Based Waiver.  Also, the term ‘mental retardation’ is used for citizenship and legal status, civil and criminal justice, early care and education, training and employment, income support, health care, and housing and zoning.  While Ohio still uses the term mental retardation in the Ohio Revised Code, administrative rules and other places, in 2009, Governor Strickland signed a bill into law removing the words “Mental Retardation” from the name of the Ohio Department of Mental Retardation and Developmental Disabilities and from the titles of other state and county entities, councils, commissions and various funds that use the term. As the Ohio Department of Developmental Disabilities, S.B. 79 recognized that mental retardation was merely a subset of developmental disabilities and had taken on an uncomplimentary connotation.
  • 70. Definition of Intellectual Disability 8  The American Association on Intellectual and Developmental Disabilities (AAIDD) defines ‘intellectual disability, as “a disability characterized by significant limitations both in intellectual functioning and in adaptive behavior, which covers many everyday social and practical skills. This disability originates before the age of 18’.  Intellectual functioning — also called intelligence — refers to general mental capacity, such as learning, reasoning, problem solving, and so on.  Adaptive behavior - Adaptive Behavior includes the age-appropriate behaviors necessary for people to live independently and to function safely and appropriately in daily life. Adaptive behaviors include real life skills such as grooming, dressing, safety, safe food handling, school rules, ability to work, money management, cleaning, making friends, social skills, and personal responsibility.  One criterion to measure intellectual functioning is an IQ test. Generally, an IQ test score of around 70 or as high as 75 indicates a limitation in intellectual functioning.
  • 71. 9  Standardized tests can also determine limitations in adaptive behavior. Adaptive behavior includes three skill types:  Conceptual skills—includes skills such as language and literacy; money, time, number concepts and self-direction.  Social skills— such as interpersonal skills, social responsibility, self- esteem, gullibility, naïveté (i.e., wariness), social problem solving, and the ability to follow rules/obey laws and to avoid being victimized.  Practical skills— including activities of daily living (personal care), occupational skills, healthcare, travel/transportation, schedules/routines, safety, use of money, use of the telephone.
  • 72. 10  On the basis of such many-sided evaluations, professionals can determine whether an individual has an intellectual disability and can tailor a support plan for each individual.  But in defining and assessing intellectual disability, professionals must take additional factors into account, such as the community environment typical of the individual’s peers and culture.  Professionals should also consider language and cultural differences in the way people communicate, move, and behave.  Finally, assessments must also assume that limitations in individuals often coexist with strengths, and that a person’s level of life functioning will improve if appropriate personalized supports are provided over a sustained period.
  • 73. What does it Mean to Treat People with Dignity and Respect?11  It is important to remember that you may be a person with a disability, but you are not a “disabled person.” You are, first and foremost, a person. Not unlike any other person, you have your own set of strengths and weaknesses.  Every individual has rights, is capable of learning, working, and being a contributing member of society.  People with disabilities should live in a home of their choice, participate in chosen activities, employment and life-style and each person deserves to be treated with dignity and respect.
  • 74. 12  Providers and others who work and interact with individuals with disabilities must always treat the individual with dignity and respect. A few examples include:  Speaking to a person directly  Speaking to individuals in a respectful manner and tone of voice  Listening to the person, however they communicate  Getting to know the person as an individual  Not discussing a person in front of that person as if they are not present  Not discussing an individual’s personal business in public where others can hear  Not sharing information about an individual that is private or personal unless you have permission of the individual to share specific information  Allowing the individual to do those things independently that they are capable of doing  Using a person’s name when speaking to them or about them  Avoiding derogatory terms when talking about a person – never refer to a person based on their needs. For example, never call a person a tube feeder, or a pooper.
  • 75. 13  Several important points to remember:  Everyone can learn  Everyone should have the opportunity to work if they choose  Everyone should have choice in where they live  Everyone should be treated with dignity and respect  People with disabilities can be contributing members of their community  People with disabilities can make their own decisions  Providers and others are not in control of a person’s life  Individuals with disabilities want to have control of their own lives  Providers and others need to listen to what a person is telling you and learn how each person communicates  It is important to listen, support and provide what the individual wants and needs  Everyone should have the opportunity to be as independent as possible  People with disabilities are not ill  Everyone is a citizen with equal rights, whether or not they have a disability
  • 76. Remember to Think “People First” 14  Language is a reflection of how people see each other. That's why the words we use can hurt. It's also why responsible communicators are now choosing language that reflects the dignity of people with disabilities-words that put the person first, rather than the disability. Read on for a short course on using language that empowers.  Think "people first." Say "a woman who has a developmental disability" rather than "a developmentally disabled woman."  Avoid words like "unfortunate," "afflicted," and "victim." Try to avoid casting a person with a disability as a superhuman model of courage. People with disabilities are just people, not tragic figures or demigods.  A developmental disability is not a disease. Do not mention "symptoms," "patient" or "treatment," unless the person you're writing about has an illness as well as a disability.  Use common sense. Avoid terms with obvious negative or judgmental connotations, such as "crippled," "deaf and dumb," "lame" and "defective." If you aren't sure how to refer to a person's condition, ask. And if the disability is not relevant to your story or conversation, why mention it at all?  Never refer to a person as "confined to a wheelchair." Wheelchairs enable people to escape confinement. A person with mobility impairment "uses" a wheelchair.  Try to describe people without disabilities as "typical" rather than "normal."
  • 77. Current Philosophy and Best Practices 15  Some of the key fundamentals in providing services and supports for individuals with Developmental Disability include:  Supporting the individual in having control over his/her own life  Supporting the individual in building friendships and relationships  Supporting the individual in working and living in their own community  Assisting the individual establish & maintain financial control and stability  Assuring that each person achieves and maintains an acceptable quality of life is an important factor in providing services and supports.  This section of the course will give a brief overview of several principles that will help providers meet this goal. The more familiar you are with each of these principles the better you will be able to support each individual. These principles include self-advocacy, person-centered planning, self-determination, supported employment and supported living. The chart below shows some of the key elements of a quality life.
  • 78. 16
  • 79. Self-Advocacy 17  Self-advocacy means advocating on one's own behalf. It is the root of all social activist movements. The self-advocacy movement was started by and for people with developmental disabilities because they wanted to be their own advocates rather than having others, such as professionals, parents and other family members, and advocates with or without other disabilities, speak about their needs and desires. As part of the broader disability rights/independent living movement, the self-advocacy movement is first and foremost a civil rights movement. As with all social activist movements, self-advocacy started at the grass-roots level where local leadership was drawn upon to organize groups of people to stand up and speak with a goal to effect social change. The national self-advocacy organization, Self- Advocates Becoming Empowered (SABE), has defined self-advocacy in 1991 as the following:  " [It] is about independent groups of people with disabilities working together for justice by helping each other take charge of our lives and fight discrimination. It teaches us how to make decisions and choices that affect our lives so we can be more independent. It also teaches us about our rights, but along with learning about our rights we learn responsibilities. The way we learn about advocating for ourselves is by supporting each other and helping each other gain confidence in ourselves so we can speak out for what we believe in." The Research and Training Center on Community Living (RTC), The University of Minnesota
  • 80. Person-Centered Planning 18  The concept of person-centered planning developed from the work of John O’Brien, Beth Mount, Marsha Forest, Judith Snow and Jack Pearpoint. They wanted to change the way families and communities looked at and planned for the futures of persons with disabilities. Up to this point, programs had been created to serve people with disabilities and then people were “plugged into” the program where they best fit. Many of these programs did not help individuals succeed in community environments and did not focus on functional skills. Traditionally, services, goals and objectives were determined by and controlled by staff and were based on remediating a person’s deficits. Through person-centered planning the individual and those closest to him or her control the development of the plan to help the person live a life in the community similar to the lives of other community members and the plan focuses on a persons strengths and choices.  With person-centered planning, the main concept is to develop a plan to meet personal needs, desires, dreams and choices of individuals, then find or create the services, supports and budget to make that plan happen. The purpose of the plan is to help the person live the life of his or her choosing in the environment of choice. Person-centered planning changed the focus from existing services and systems to focus on the individual and each person’s individual choices, strengths, dreams and needs. Planning focuses on personal strengths, choices and dreams rather than on a person’s weaknesses and deficits.
  • 81. 19  Getting to know someone is a very important part of person-centered planning. The best way to get to know someone is to spend enough time together doing things, talking, listening, and watching to figure out how someone chooses to live their life, where someone wants to live, how they want to spend time each day, who they want to spend time with, and what are their hopes and dreams for the future. It is also important to figure out the things that get in the way of those life choices and how to eliminate barriers.  There have been a number of formal approaches to person–centered planning including Personal Futures Planning, Making Action Plans or MAPS, PATH or Planning Alternative Tomorrows with Hope, Essential Lifestyle Planning and Circle of Friends. “All person centered planning approaches share three basic features: 1. Everyday events and activities in which the individual participates should be the focus of planning; 2. Family and connections within the community are more important than the services historically available; and 3. Planning must be done with the individual with the disability and a group of people who know the person well and are committed to helping the person achieve their goals.” (Falvey et al.,1994).
  • 82. 20  Some of the most important features of person-centered planning include:  Planning must be based on the individual’s informed choices, preferences, desires, needs, and knowing one’s options  Being in control of one's own life  Being accepted by other community members as a member of the community  Being valued by the community  Living, working and enjoying recreational opportunities in the community  Having needed supports available  Having friends and relationships  Having financial resources  Having financial stability  Holistic planning and support occur  Forming interdependent relationships and partnerships with others and the community is important  Natural supports are identified and used  Services and supports are provided in a respectful, image enhancing manner  Nonintrusive delivery of services and supports is essential
  • 83. 21  When using the person-centered planning approach, the plan results in the commitment of many people supporting the person in reaching his or her desired future, not just the “professionals”. The plan is not based on traditional assessment or evaluation methods but rather on a process effective for determining each individual’s choices, preferences and desires. The planning process focuses on building relationships and belonging. To implement such a plan, methods and resources for supporting choices, community connections and support, and an agency design that enables supporting individual’s choices are needed.  Ohio has come a long way over the past 20 years since person-centered planning first came to the forefront. Individual budgets, service and support administration, new funding streams, and choice of providers have all opened the doors to the person-centered approach.
  • 84. Self-Determination 22  Self-determination is a belief that was applied to people, other than those with disabilities, for many years prior to being applied to persons with developmental disabilities.  This belief had roots in the civil rights movements and was often applied to Native Americans.  Self-determination is the belief that people can and should be in charge of their own lives to whatever degree that person is capable.  For a person to be self-determining, they may need supports, opportunities for decision-making and resources to implement their choices in all aspects of their lives.
  • 85. 23  The four main principles of self-determination are freedom, authority, support and responsibility. These have been defined as follows: Freedom:  The ability to make life decisions about where and with whom one lives and what important things one undertakes that parallels in every important way the decisions that those without disabilities make everyday.  People have the freedom to determine a meaningful life for themselves with the assistance of an independent facilitator and their chosen circle of support.
  • 86. 24 Authority:  The ability to control a targeted amount of public dollars together and any available private money in order to craft a life plan that results in the everyday freedoms that all Americans desire and the expectations that the lives of those with disabilities will mirror, with appropriate assistance when necessary, the lives of others in this society.  People have the authority to develop and control their own individual support budget within the constraints of the funding allocation.
  • 87. 25 Support:  The organization of these resources in ways that are unique for the individual and address the support needed because of a disability with a more holistic way of planning and budgeting that address perennial issues often lost in the system of traditional long term care: a place to call home, sustained relationships, community membership and for adults the production of private income through the world of business and commerce.  People set up and control the support they need to have a meaningful life with the assistance of an independent broker.
  • 88. 26 Responsibility:  The commitment for the wise use of public dollars and with added flexibility in public funding seeking a more cost effective way to support individuals with disabilities.  From its very inception Self-Determination challenged the high cost of “serving” individuals with significant disabilities with very few discernable outcomes that would be acceptable to a person without a disability.  People take responsibility for managing their individual budget with the assistance of an independent fiscal intermediary.
  • 89. 27  Ohio has accomplished a number of goals toward the implementation of self- determination including:  the Medicaid Buy-In as a start toward allowing people to work without fear of losing their health insurance;  service and support administrators are now responsible for completing functional assessment, developing individual plans, developing individual budgets and overseeing the plan implementation;  Medicaid Waivers have been approved;  rules have been changed;  new rules have been developed to help change the system in support of person-centered planning and self-determination concepts;  Home and Community Based Services (HCBS) waiver rules support the development of individual budgets;  adoption of the Core Indicators;  and many other changes as well.
  • 90. 28
  • 91. Supported Employment 29  Supported employment has opened the door for many adults with disabilities to leave sheltered work environments and become employed in a wide variety of community jobs with the supports needed to remain successfully employed.  Community employment programs existed in several counties in Ohio in the early 1980’s. These eventually evolved into supported employment programs. Currently, one of the sources of payment for supported employment comes from one of Ohio’s Home and Community Based Waivers.
  • 92. 30  What is Supported Employment?*  Supported employment facilitates competitive work in integrated work settings for individuals with the most severe disabilities (i.e. psychiatric, mental retardation, learning disabilities, traumatic brain injury) for whom competitive employment has not traditionally occurred, and who, because of the nature and severity of their disability, need ongoing support services in order to perform their job. Supported employment provides assistance such as job coaches, transportation, assistive technology, specialized job training, and individually tailored supervision.  Supported employment is a way to move people from dependence on a service delivery system to independence via competitive employment. Recent studies indicate that the provision of on-going support services for people with severe disabilities significantly increases their rates for employment retention. Supported employment encourages people to work within their communities and encourages work, social interaction, and integration. *Excerpted from: U.S. Department of Labor, Office of Disability Employment Policy
  • 93. 31  Definitions  A job coach is a person who is hired by the placement agency to provide specialized on-site training to assist the employee with a disability in learning and performing the job and adjusting to the work environment.  Natural supports are support from supervisors and co-workers, such as mentoring, friendships, socializing at breaks and/or after work, providing feedback on job performance, or learning a new skill together at the invitation of a supervisor or co-workers. These natural supports are particularly effective because they enhance the social integration between the employee with a disability and his/her co-workers and supervisor. In addition, natural supports may be more permanent, consistently and readily available, thereby facilitating long-term job- retention.
  • 94. 32  Basic Components  Supported employment services should achieve the following outcomes: opportunity to earn equitable wages and other employment-related benefits, development of new skills, increased community participation, enhanced self-esteem, increased consumer empowerment, and quality of life. The types of supported employment services used depend on the needs of individual consumers.  The following are the basic components of supported employment:  Paid Employment -- Wages are a major outcome of supported employment. Work performed must be compensated with the same benefits and wages as other workers in similar jobs receive. This includes sick leave, vacation time, health benefits, bonuses, training opportunities, and other benefits. Employment must be for at least 18 hours per week.  Integrated Work Sites -- Integration is one of the essential features of supported employment. Individuals with disabilities should have the same opportunities to participate in all activities in which other employees participate and to work alongside other employees who do not have disabilities.  Ongoing Support -- A key characteristic which distinguishes supported employment from other employment programs is the provision of ongoing support for individuals with severe disabilities to maintain employment.
  • 95. 33  Supported Employment Models  Several supported employment models are being used to provide the benefits of work for people with severe disabilities.  Individual Placement Model -- A person with a disability is placed in a job in a community business which best suits his/her abilities and preferences. Training is provided on the job site in job skills and work related behaviors, including social skills, by a job coach. As the employee gains skills and confidence, the job coach gradually spends less time at the worksite. Support is never completely removed. The private or public vocational rehabilitation agency furnishing the job coach is always available to the employer for retraining for new assignments, assisting in dealing with challenging behaviors, supplying periodic consultations with co-workers and employer, giving orientation and training for co-workers.  Enclave Model -- A small group of people with disabilities (generally 5-8) is trained and supervised among employees who are not disabled at the host company's work site. Persons in the enclave work as a team at a single work site in a community business or industry. Initial training, supervision, and support are provided by a specially trained on-site supervisor, who may work for the host company or the placement agency. Another variation of the enclave approach is called the "dispersed enclave." This model is used in service industries (e.g., universities, restaurants, and hotels). Each person works on a separate job, and the group is dispersed throughout the company.  Mobile Work Crew -- A small crew of persons with disabilities (up to 6) works as a distinct unit and operates as a self-contained business that generates employment for their crew members by selling a service. The crew works at several locations within the community, under the supervision of a job coach. Examples of this type of work might include janitorial or grounds keeping. People with disabilities work with people who do not have disabilities in a variety of settings, such as offices and apartment buildings.  Small Business Model -- Within a small business, there may be up to six employees with disabilities, but not more than the number of employees without disabilities. The small business operates like any business, generating work and paying employees from revenues received. The small business is located within the community
  • 96. 34  Benefits to Employers  No fee to employer  Thoroughly screened applicants  Employees' abilities matched to job requirements  On-site job training by professionals  Additional training, as necessary  Follow-up services for the duration of employment
  • 97. Supported Living & Other Residential Options35  Supported Living Supported Living is a way to assist individuals with mental retardation and developmental disabilities to live as independently as possible in their own homes in their own communities, with support from public funds. Most often, people in supported living arrangements live with family members, with roommates or by themselves. They may live in an apartment, condo, duplex, single family home or any other type of housing. Supported living services may be provided in the individual’s home regardless of the type of home. An individual may share supported living with up to three other individuals with disabilities in a supported living arrangement. Service providers chosen by the individuals sharing services may not be the landlord. Services and supports are identified on an Individual Service Plan (ISP). An individual selects a supported living service provider from a list of certified providers. Supported living “includes the provision of housing, food, clothing, habilitation, staff support, professional services, and any related support services necessary to ensure the health, safety, and welfare of the individual receiving the services”.
  • 98. 36  Capital Housing The Ohio Department of Developmental Disabilities (ODDD) makes available state capital assistance (bond) funds to assist local County Boards of DD in purchasing housing for individuals receiving Supported Living services, or Supported Living services funded through Home and Community Based waivers. The goal of the program is to provide housing options in their own communities that allow people with disabilities to be as fully integrated and independent as possible. The process for accessing Capital Housing dollars is governed through ODDD administrative rule. Typically, County Boards of DD establish non-profit housing corporations to receive the funds, and match them with other funding sources. Existing homes in the community are then purchased with these dollars for individuals with developmental disabilities, often with their active involvement. Capital housing dollars are allocated to counties through an established formula based on available funds.
  • 99. 37  Licensed Facilities There are many homes throughout Ohio that are licensed residential facilities for person with mental retardation and developmental disabilities, often called group homes. These homes are funded through waivers and ICFMR funds. Ohio law requires the licensure of facilities that provide services to two or more unrelated individuals with DD, unless the individuals are sharing services in a Supported Living arrangement. In a licensed setting, a specific provider holds the license to operate the facility for a specific number of individuals at a specific location. Holding the license means that the provider of the housing is the same as the provider of the services received by the individuals who live there. Currently there are over 1,200 licensed facilities housing over 10,000 individuals. This number of facilities has now been “capped” and will not continue to grow.
  • 100. 38  Intermediate Care Facility Mentally Retarded (ICFMR) ICFMR facilities typically serve persons with the most severe disabilities and, often, multiple disabilities. ICFMR facilities must provide "active treatment" to individuals residing there. Active treatment is defined as a program of specialized and generic training, treatment and health services. Intermediate Care Facilities for the Mentally Retarded (ICFMR) are funded through Medicaid dollars and, in Ohio, are licensed by the ODDD, to be operated by a specific provider at a specific location. The Department of Health (DOH) certifies the licensed facility as meeting the Federal requirements for funding as an ICFMR. The provider is responsible for all aspects of care for the individual, including financial matters, transportation, habilitation, and medical needs. According to the federal regulations, an ICFMR is primarily for the diagnosis, treatment, or rehabilitation for people with mental retardation and provides, in a protected residential setting, ongoing evaluation, planning, 24-hour supervision, coordination, and integration for health or rehabilitative services to help individuals function at their greatest ability.
  • 101. 39 Developmental Centers  Ohio operates ten developmental centers (as of 2010) that are located throughout the state.  Approximately 1,660 individuals reside in these facilities.  All developmental centers are licensed as ICFMR facilities.  Individuals residing in these facilities typically have severe challenges and receive comprehensive and intensive services.  No resident is ever considered permanently placed at a developmental center.  In addition to providing habilitation, centers provide extensive outreach services to county boards and other providers, including case consultation and staff training.
  • 102. 1 I know there is quality in when… By Quincy Abbot October 2004 I know there is quality in Becky’s life when: - She refuses Saturday lunch with me because she is having lunch with her boyfriend. - We go for a walk in the local park on a Sunday afternoon and fellow walkers say “Hi, Becky.”It is someone she knows from attending local church services. - One of the women on her inclusive bowling team invites her to a meal at her house. - At the voting place four years ago, she was not listed at her current address (she’d moved a few months before), and a former neighbor at the desk said “Didn’t you use to live at 25 Main Street?”Becky responded “yes”and was allowed to vote. - She has work or volunteer jobs in the community where she is valued for her contribution. - She has a boyfriend who makes her laugh and who she makes laugh. - She has Wilbur, a guinea pig, to care for and love. - She makes needlepoint and pottery for gifts to family and friends. - She has the funds to buy a second TV for her bedroom, to take a vacation trip to Cape Cod or to Disneyland, and to belong to CURVES. I must admit that the supplier of last resort for such funds is often Quincy. - Her three sisters agree that Becky lives life far closer to her potential than any one of them. But quality also exists in more mundane areas. I know there is quality in Becky’s life when: - Her apartment and workplace are safe. - She has good, nutritious food to eat. - She has regular medical checkups and monitoring. - She has a stable staff who have known her as an individual for a long time, who trust her and whom she trusts, and who allow her to experience the risks of ordinary life like the rest of us. Relationships These are just a few snapshots of Becky’s life that give me the clues to know that she leads a quality life. What is the single, most important source of this quality in Becky’s life? It is long term, enduring relationships with individuals without a disability. In the words of Tom Nerney: “the single greatest predictor for health and safety risks is the absence”of such relationships. I would go much further and say positively that the presence of long term, enduring relationships with family, staff, co-workers and others in the community, not only minimizes risks, but also contributes to higher levels of quality - self esteem and even self actualization.
  • 103. 2 Maslov’s Hierarchy of Needs. While pondering the subject of quality of life and how we measure it for individuals with or without disabilities, my mind naturally went to Maslov’s Hierarchy of Needs. To refresh your memory these range from the bottom level physiological needs (hunger, thirst, bodily comforts) through Safety/Security needs, Belongingness and Love needs, Esteem needs, Cognitive needs, and Aesthetic needs to the top level needs of Self- actualization and Transcendence. It is interesting that the personal quality indicators that occurred to me first were higher up the scale, even reaching to self-actualization. Maslov and People with Disabilities. Fifty years ago, when custodial care in institutions was the norm, people with disabilities were stuck at the bottom. Their physiological needs and their safety needs were met and little more; sometimes not even that. As individuals moved into the community, the tendency was still to focus quality assurance at these two levels. However, being in the community opened up the opportunity for satisfying the needs of “belonging and love”and “self-esteem.”Satisfaction based quality assurance tools made a start at this. Tom’s recommendations will improve upon this. The Challenge. I commented above that Becky’s sisters believe that she comes the closest of the four of them to realizing her full potential, i. e. self-actualization. The challenge that I bring to all of us is to find a way to assure that individuals with disabilities will be supported in realizing these higher levels of human needs. Perhaps this starts at the bottom. We must first include the higher levels of needs in our person- centered planning. We must incorporate the resources to realize these needs in our funding and then we must find a way to assure that individuals with disabilities have fulfilled those needs. The quality measures must relate back to this individually determined plan. In Connecticut, I am part of the Steering Committee for a federal grant to determine a new Level of Need, i.e. a funds allocation, tool as well as a new Quality Assurance System. Preparing these comments made me realize that so far we mostly contemplate funding Maslov’s first two levels of need and assure quality in meeting the first two levels of need. We, in Connecticut, have some more work to do…and so I assume do the rest of you. This speech was delivered at a New England Region AAMR conference in 2003. Mr. Abbot is a past president of the ARC of the United States. His daughter Becky lives in a condominium with supports from a community provider.
  • 104. Centers for Medicare and Medicaid Services’ Definition Person-Centered Planning A Closer Look at the Centers for Medicare and Medicaid Services’ Definition of Person-Centered Planning Person-centered planning reaches beyond service planning to help friends and supporters understand an individual’s needs and preferences and plan for a positive future. It is not a new idea; it has been around for almost 20 years. The Centers for Medicare and Medicaid Services (CMS), the federal Medicaid agency, has highlighted person-centered planning and is promoting its use through Home and Community Based Services Waivers. CMS describes person-centered planning this way: “Person-centered planning is a process, directed by the family or the individual with long term care needs, intended to identify the strengths, capacities, preferences, needs and desired outcomes of the individual. The family or individual directs the family or person-centered planning process. The process includes participants freely chosen by the family or individual who are able to serve as important contributors. The family or participants in the person-centered planning process enables and assists the individual to identify and access a personalized mix of paid and non-paid services and supports that will assist him/her to achieve personally-defined outcomes in the most inclusive community setting. The individual identifies planning goals to achieve these personal outcomes in collaboration with those that the individual has identified, including medical and professional staff. The identified personally-defined outcomes and the training supports, therapies, treatments, and or other services the individual is to receive to achieve those outcomes becomes part of the plan of care.” CMS’ definition of person-centered planning is a good starting place for individuals, their family members, and supporters to begin to understand person-centered planning and its benefits. Person-Centered Principles John O’Brien and Connie Lyle Community presence: the sharing of the ordinary places that define community life. Choice: the experience of autonomy both in small, everyday matters (e.g., what to eat or what to wear) and in large, life- defining matters (e.g., with whom to live or what sort of work to do). Competence: the opportunity to perform functional and meaningful activities with whatever level or type of assistance is required. Respect: a valued place among a network of people and valued roles in community life. Community participation: the experience of being part of a growing network of personal relationships that include close friends.
  • 105. Page 2 of 4 A Closer Look… (continued) “Person-centered planning is a process…” Person-centered planning is not a one-time event. It is an ongoing activity that allows people who care about an individual to listen, to learn, and to lend support to that person. The process is interactive and lifelong. While a written plan may be a product of the planning process, the plan is only as good as the effort that goes into listening to the individual, learning what is important to and for the individual, and lending time and energy to support the individual on an everyday basis. “…directed by the family or the individual…” In person-centered planning, the person who is to be supported and his or her family controls the process rather than case managers, agencies, or service providers. It is not an activity organized by staff to assist in getting the plan of care written. The presence of the individual and/or their family member(s) at a planning meeting and their participation in needs assessments or preference inventories, while a good thing, is not person-centered planning. The individual and his or her family actively direct the process. Many individuals may find that being at the center of the planning process is difficult at first because their experiences have not provided them with opportunities to “run the show” when it comes to expressing how they want their lives to look. Many family members who have experience in planning for their own daily lives may not feel very skilled at helping a family member translate needs and preferences into supports and services that are complicated by rules and regulations, and are sometimes in short supply. Thus case managers and other providers are essential in helping individuals and families take leadership roles in directing the planning process. Like many things that we do in life, person-centered planning gets better with practice. Initial attempts may feel awkward or even unsuccessful, but time and effort pay off. The inexperience that we feel in doing this type of planning is the very reason that person- centered planning is often a “facilitated process”, meaning that the different tools available to be used in person-centered planning come with instructions and a person trained in walking us through the process. “…intended to identify the strengths, capacities, preferences, needs and desired outcomes of the individual...” Looking at how an individual can live a life filled with choices, connections, and contributions requires a shift in our usual thinking away from a deficit and needs based model. We are so focused on needs, slots and programs that we often do not see giftedness and strengths. We are not used to asking for and following the directions of the person and those who know him/her best.
  • 106. A Closer Look… (continued) Page 3 of 4 “Traditional forms of planning are based on the ideal of the developmental model…emphasizing the deficits and needs of people, overwhelming people with endless program goals and objectives, and assigning responsibility for decision- making to professionals. Traditional planning often reinforces the status quo of organizations by focusing solely on accomplishments that are possible within existing programs and structures” (John O’Brien and Connie Lyle O’Brien). Person-centered planning helps us to focus on a person and in so doing make room for a new way of thinking that makes us listen and learn about the abilities of individuals. After learning how a person wants to live, we can then develop an understanding of how the person’s disabilities challenge that vision, and work together to identify and provide needed supports. “…The process includes participants freely chosen by the family or individual who are able to serve as important contributors...” Person-centered planning encourages the participation of family, friends, professionals and community members in the process of listening to and discovering the goals, preferences, gifts, and potential contributions of the individual. There is no set number of people who must be part of a person-centered planning team. However, since helping an individual become better connected to his or her community is a key part of person -centered planning, those who know and care about the person are encouraged to enroll and lend their support, resources, creativity, and problem solving skills. It is not just the writing of a plan, but also the means to make it happen, that is critical to successful planning. “…The family or participants in the person-centered planning process enables and assists the individual to identify and access a personalized mix of paid and non-paid services and supports that will assist him/her to achieve personally-defined outcomes in the most inclusive community setting...” Successful person-centered planning is directed at a larger picture-- exploring and defining how an individual wants his or her life to be. While it may include Medicaid waiver and/or other publicly funded services it is more comprehensive and holistic than just service planning. The process can begin at any time in an individual’s life, and, because it is a process, it reflects changes as the individual’s experiences change. CMS rightly draws the connection to the wider community where natural supports exist for all of us.
  • 107. A Closer Look… continued Page 4 0f 4 “…The individual identifies planning goals to achieve these personal outcomes…” Perhaps the reason that person-centered planning can be such a natural fit with service planning is that they are both goal oriented processes. The major difference with person-centered planning is that the outcomes of the plan are defined by the individual and those who know and love him or her best. While goals established through the person-centered planning process may include the development of skills, the identification of those skills is driven by what the individual says he or she wants to accomplish. “…in collaboration with those that the individual has identified, including medical and professional staff…” CMS points out that the selection of the members of the planning team is based on whom the individual wants. One of the major problems of our current community based services is that they do not support individuals in making meaningful community connections. As a result, many individuals who do not have family members also do not have friends and community relationships to support them in this planning process. While this may make the challenge greater it also argues for the importance of person- centered planning. “…The identified personally-defined outcomes and the training supports, therapies, treatments, and or other services the individual is to receive to achieve those outcomes becomes part of the plan of care.” Life planning and service planning come together in person-centered planning. Focusing on the “person” in person-centered planning ensures that the individual, his or her family, and other supporters move beyond program planning for the individual and look at the whole picture of the individual’s life. Goals, objectives, therapies, treatments, and other services become means to an end, a present and a future defined by the individual and those who know him or her best. As one self- advocate sums it up, “My parents always had a dream for my brothers and sisters for when they grew up, but nobody had a dream for me, so I never had a dream for myself. You can never have a good life if nobody ever has a dream for you, unless you learn to have a dream for yourself” (Connie Martinez). The Partnership for People with Disabilities is a university center for excellence in developmental disabilities at Virginia Commonwealth University. VCU is an equal opportunity/affirmative action institution providing access to education and employment without regards to age, race, color, national origin, gender, religion, sexual orientation, veteran’s status, political affiliation or disability. If alternative formats of this document are needed, please contact the Partnership for People with Disabilities at 804/ 828-3876 or 800/ 828-1120 (TDD Relay). Support for this initiative was provided through a contract with the Virginia Department of Medical Assistance Services (DMAS) with funding from the Centers for Medicare and Medicaid Services. No copies or reproductions, electronic or otherwise, in whole or in part, of the following materials may be made without the expressed written permission of DMAS. This document was developed under Grant No. P- 91599/3 from the U.S. Department of Health and Human Services, Centers for Medicare and Medicaid Services. However, the contents herein do not necessarily represent the policy of the U.S. Department of Health and Human Services, and you should not infer endorsement by the Federal government. Please include this disclaimer whenever copying or using all or any part of this document in dissemination activities.
  • 108. What can person- centered planning do for you? It can help you discover and share your goals for a better or different life. Person-Centered Planning Renewed Interest Person-centered planning is a process for learning how a person wants to live and what is important to him or her in everyday life. Person- centered planning: ♦ looks to the future and helps the individual plan for positive outcomes. ♦ puts the person, his or her gifts, talents, goals, preferences, needs, and choices, in the center of the planning process. ♦ helps people find and use their voices to state what is truly important to and for them. ♦ requires really listening to the person and the people who know the individual best, and translating a vision for a better or different life into action plans. ♦ enlists the support of family, friends, and professionals to follow through on those action plans and journey with the person to a life enriched by community connections and opportunities to contribute and receive support. Person-centered planning is not a new idea. It has been around for almost 20 years. Facilitators use an assortment of tools to introduce person- centered planning to individuals with disabilities and their families. The tools help individuals and their supporters understand the process and desired outcomes. WHY THE RENEWED INTEREST IN PERSON- CENTERED PLANNING? ♦ The basic idea of person- centered planning-- planning with and for a person-- makes good sense. ♦ Reports have shown that person-centered planning assists individuals and their families as they seek to develop ordinary lives and connects people to their communities. ♦ With the growing national emphasis on consumer- directed services with Medicaid funding, the Centers for Medicare and Medicaid Services (CMS), the federal Medicaid agency, has highlighted person-centered planning as a promising practice and is promoting its use. It can help you make important choices. It can help you find people in your community to support you. It can help you get everyone singing off the same page, your page!
  • 109. Person-Centered Planning…Renewed Interest Page 2 of 2 SOME TOOLS OF PERSON-CENTERED PLANNING ESSENTIAL LIFESTYLE PLANNING (ELP) ♦ Developed by Michael Smull. ♦ ELP is a guided process for learning how someone wants to live and for developing a plan to help make it happen. ♦ The process has 5 steps (listen, understand, plan, implement, and assess). ♦ During the process, people who care about the individual listen to learn what is important to and for the individual. ♦“…a practical down to earth approach to get a written document that contains what is important to an individual: likes and dislikes, daily routines and rituals, what makes sense and doesn’t, etc. It ends up as a useful guide for anyone who needs to know about the person” (A Good ELP is a Work in Progress, Molly Drummond’s mother). PATH ♦ Developed by Marsha Forest, Jack Pearpoint, and John O’Brien. ♦ the /her dreams. ♦ ey want their future to be - identify their ards desirable PATH is a creative planning tool that starts with end in mind and focuses the person with whom planning is being done on naming his The facilitated process has eight steps 1. Touch the dream - get people to explore images of how th purpose 2. Sense the goal - get the group to look backw from the future describe that positive future as if it had already happened Describe the present and3. Ground it in the now - explore how that feels eds to be ge? f things will have to be done to realize the 8. Commit to the first step 4. Identify people to enroll - Who ne involved to make change possible? 5. Recognize ways to build strength - How can we improve our skills, our relationships, our knowled 6. Chart action for the next few months - What kinds o goal? 7. Pl n t e next mo th's wa h n ork PERSONAL FUTURES PLANNING ♦Developed by Beth Mount. ♦Personal Futures Planning is a facilitated that seeks to discover capacities, identify opportunities in the local community, and develop service supports that are responsive process to the unique interests and needs of individuals. ♦The process has a series of 6 tasks. Task 1: Getting to know you (relationship map) Task 2: Finding capacities in people Task 3: Finding capacities in community life (the community building map) Task 4: Creating a vision for the future (the futures map) Task 5: Supporting people over time to take act and try new th ion ings (follow along meetings and action plans) Task 6: ORGANIZATIONAL CHANGE: Constructive system supports (designing platforms for change) For more information about person- centered planning tools or upcoming training opportunities, contact: Eileen Hammar Partnership for People with Disabilities at Virginia Commonwealth University 804-827-0202 (voice) 804-828-0042 (fax) or email: eghammar@vcu.edu This information and the training events are sponsored by the Partnership for People with Disabilities at VCU through a contract with the Department of Medical Assistance Services with funding from the Centers for Medicare and Medicaid Services under the Real Choice Systems Change grant # P91599/3. VCU is an equal opportunity/affirmative action institution providing access to education and employment without regard to age, race, color, national origin, gender, religion, sexual orientation, veteran’s status, political affiliation, or disability.
  • 110. Guiding Principles* Based on current trends and philosophies in the field of developmental disabilities, the following guiding principles should be considered when assisting an individual in planning his or her life: Control of One's Own Life Opportunities to become self-determined Informed choice making Individual is aware of available options Select own lifestyle Control in major life decisions as well as everyday matters Circle of support to assist in decision and choice making when needed and desired by the individual Choice in where to live and with whom Opportunities for home ownership Choice in where/whether to work, doing what Choice in recreational and leisure pursuits Hopes and dreams for the future Opportunities for growth and learning Choice in religious and cultural beliefs and practices Community Community and neighborhood connections Part of the mainstream of community life Community presence and participation Accepted and respected by community members Development of friendships and relationships Valued roles Interdependence Sense of belonging Full community inclusion Contributes to community Finances Financial stability Fund people, not programs or structures Control of own finances/individual budgets
  • 111. Supports Individual chooses who provides his or her supports Support in maintaining health and safety Supports to participate in chosen lifestyle Supports follow individual - not agency tied Continuity of supports over time and settings Family ties Rights and Responsibilities Support in accepting and meeting responsibilities Individual knows and exercises their rights Individual is free from abuse and neglect Individual has privacy Individual has health care Individual is satisfied with their services and supports * from ODMR/DD Quality Enhancement: Determining if Services and Supports Uphold Individually Chosen Lifestyles
  • 112. Circle of Support The concept of the ‘circle of support’ was developed in Canada based on the needs of an individual with disabilities who could not live the life of her choosing without supports. With the type of support available through a ’circle of support’ a person can take more control of his or her own life. The circle of support can be a very powerful tool to help a person achieve personal goals and the lifestyle they could not otherwise accomplish. The circle is typically made up of friends, family and other community members who care about the individual and who the individual chooses to invite into his or her circle. The circle is not made up of paid staff. A ‘circle of support’ is a group of people who care about an individual and are willing to meet and assist the individual in a variety of ways to establish and meet their goals in life. This is an ongoing process – not just a one-time event. As the person grows, changes and meets some or all of their goals and choices, new direction can be taken and new goals set. The person who the circle is formed to assist is always in charge of the group, the goals set and the process to accomplish those goals. One member of the group generally becomes the group facilitator to help keep meetings focused and running smoothly toward the person’s goals and desires. All members of the group commonly benefit from the relationships formed while assisting the focus person become more independent and live a fulfilling life.
  • 113. NRC FACT SHEET: SUMMARY OF SELF-DETERMINATION What Self-Determination Is and What it Is Not • Self-Determination is NOT a model or a program with a predetermined menu of available services and a set way of delivering them. • Self-Determination IS a process that differs from person to person according to what each individual determines is necessary and desirable to create a satisfying and personally meaningful life. Persons with disabilities no longer have to receive services as determined by the traditional model. They are free to "order off the menu," including those services they desire to be provided in ways that meet their needs. • Self-Determination is both person-centered and person-directed. It acknowledges the rights of people with disabilities to take charge of and responsibility for their lives. In Self-Determination, the individual, not the service system, decides where he or she will live, and with whom; what type of services he or she requires, and who will provide them; how he or she will spend his or her time, which may include the type of vocational or educational opportunities he or she wishes to engage in, and how he or she will relate to the community, which may include joining in community events, taking part in civic groups, and developing and maintaining relationships with others in the community. The Principles of Self-Determination • Freedom – The ability for an individual together with freely chosen family and friends to plan a life with necessary support rather than purchase a program. • Authority – The ability for a person with a disability (with a social support network or circle if needed) to control a certain sum of dollars in order to purchase services. • Autonomy – The arranging of resources and personnel–both formal and informal-that will assist an individual with a disability to live a life in the community rich in community affiliations. • Responsibility – The acceptance of a valued role in a person’s community through competitive employment, organizational affiliations, spiritual development, and general caring of others in the community, as well as accountability for spending public dollars in ways that are life-enhancing for persons with disabilities. (From: Thomas Nerney and Donald Shumway, Beyond Managed Care: Self-Determination for Persons with Disabilities, September, 1996). Values Supported by Self-Determination Respect – Self-Determination, by its nature, recognizes that persons with disabilities are valuable, capable persons who deserve to be treated with respect. Respect is more than politeness and paying lip service. It is acknowledging the individual’s value as a person, seeing his or her strengths and abilities, granting him or her the same consideration we each desire, and holding him and her in esteem. Choice – Choice is central to Self-Determination. Many times people with disabilities have very limited choices. They often cannot choose very important aspects of their lives, such as where they live, with whom, how they will spend their time and their money, and sometimes even what they eat. At other times, selections are limited. For instance, individuals may be able to choose who their roommate will be, but not whether or not they will have one. True choice is being able to pick from the same wide variety of lifestyles, goals, and individual preferences most people enjoy.
  • 114. Ownership – Self-Determination not only supports persons with disabilities to have more choices in their lives, but ownership of their lives. Ownership implies more than just decision-making. It means that the individual is the final and total authority–the boss. While most people are supported in the decision-making process by a circle of support, Self-Determination gives the person the final say. Ownership allows him or her control over his or her life and services. He or she may hire, manage, and if necessary, fire those who provide services. It also gives him or her control over the management of his or her financial affairs. Ownership also means that the individual accepts the responsibility for his or her actions and decisions, including spending public monies conservatively. Support – Support is a keystone to making Self-Determination work. Most people have some type of support network in their lives that they turn to when they must make an important decision or take a step forward in their lives. Persons with disabilities are no different. However, before Self- Determination, those persons who helped establish goals and devise plans were mostly paid workers who in many instances were assigned rather than chosen. In Self-Determination the individual selects and invites each member of his or her circle of support. They can be family members, friends, people from the community–anyone that the person desires. Most importantly, they are people with whom the individual has or wishes to build a trusting relationship. Opportunity – Many persons with disabilities have had only limited opportunities to experience many aspects of life. Self-Determination expands those opportunities allowing and encouraging individuals to explore the possibilities that are present in their communities. Since they are able to spend their funds in ways that they now choose, they are able to take part in events and activities that previously were unavailable. When someone has had limited experience, it may be difficult for others to allow him or her to take risks. However, opportunity also includes the ability to take risks, to make mistakes, and to grow from them. Self-Determination Calls for a Systems Shift If Self-Determination is going to be successful, it requires that those who supply services and fund them make certain changes in both the way they think about persons with disabilities and the way they serve them. Without a shift in the service system, no philosophy can truly support persons with disabilities to become self-determining individuals. In order for Self-Determination to happen, the system must shift: • From seeing persons with disabilities as having limitations that prevent them from participating fully in life to seeing them as valuable citizens who have many talents, strengths, and abilities to contribute to their communities. • From seeing persons with disabilities as service recipients to seeing them as individuals with rights and entitlements. • From providing agency-controlled services to supporting person-directed services. • From systemic and agency control of financial resources to individual control. • From control to empowerment. A Final Thought "Self-Determination is what life is all about. Without it, you might be alive, but you wouldn’t be living–you would just be existing". (M. Kennedy, "Self-Determination and Trust: My Experiences and Thoughts," In Sands & Wehmeyer, Self-Determination Across the Life Span, 1996, p. 48). Prepared by Michael Kennedy & Lori Lewin, Staff Associates National Resource Center on Supported Living and Choice Center on Human Policy Syracuse University Reprinted with permission of the Center on Human Policy 12-2008
  • 115. Supported Living Per Ohio Revised Code 5126.01 “Supported living” means services provided for as long as twenty-four hours a day to an individual with mental retardation or other developmental disability through any public or private resources, including moneys from the individual, that enhance the individual’s reputation in community life and advance the individual’s quality of life by doing the following: (a) Providing the support necessary to enable an individual to live in a residence of the individual’s choice, with any number of individuals who are not disabled, or with not more than three individuals with mental retardation and developmental disabilities unless the individuals are related by blood or marriage; (b) Encouraging the individual’s participation in the community; (c) Promoting the individual’s rights and autonomy; (d) Assisting the individual in acquiring, retaining, and improving the skills and competence necessary to live successfully in the individual’s residence. (2) “Supported living” includes the provision of all of the following: (a) Housing, food, clothing, habilitation, staff support, professional services, and any related support services necessary to ensure the health, safety, and welfare of the individual receiving the services; (b) A combination of lifelong or extended-duration supervision, training, and other services essential to daily living, including assessment and evaluation and assistance with the cost of training materials, transportation, fees, and supplies; (c) Personal care services and homemaker services; (d) Household maintenance that does not include modifications to the physical structure of the residence; (e) Respite care services; (f) Program management, as described in section 5126.14 of the Revised Code.
  • 116. Individual Planning 41  Individuals with developmental disabilities often receive services from a wide variety of service providers. In the past, each provider of services developed an individual plan that contained the services and supports that they or their agency would provide. Staff from the varying agencies often attended each other’s team meetings and attempted to coordinate services, sometimes very successfully and other times, not so successfully. Having more than one plan often led to duplication of services, services that conflicted, and service needs that were not met at all.  With the onset of service and support administration came the requirement for a single point of contact. This person has the overall responsibility to focus on the individual, develop one coordinated plan rather than multiple, discordant plans, and assure the plan is carried out in accordance with all applicable rules and best practices. Service and support administration also assures that quality assurance reviews are carried out and the results of those reviews are incorporated into the individual’s plan and services.
  • 117. 42  One person now has the responsibility for overseeing and coordinating services, supports and needs of an individual. This person also has the responsibility for developing one plan thereby assuring comprehensive, coordinated planning and service delivery for and with each individual. That responsible person is the service and support administrator. The service and support administrator can have any assigned job title. Some examples are case manager, case coordinator, service coordinator, service & support specialist and many other titles. County boards are required to provide service and support administration to any individual, regardless of age, who is applying for or enrolled in an HCBS waiver; any individual three years of age or older who is eligible for county board services, and requests, or a person on the individual’s behalf requests service and support administration; and any individual residing in an ICF/MR is eligible for service and support administration related to moving the individual from the ICF/MR to a non-ICF/MR community setting. County boards may provide service and support administration to any other individuals who are eligible for county board services. Individuals with a sole diagnosis of mental illness are not eligible for county board services. Each individual who receives services and support administration must have a service and support administrator who is the single point of accountability. This means that an SSA is identified who is responsible to an individual for the development, effective implementation and coordination of his or her ISP process.
  • 118. Individual Plan Development Requirements43  Service and support administrators are responsible for developing and revising the individual’s individual service plan (ISP). The ISP is the basis for all service delivery and should focus on the individual’s strengths, interests, talents, choices, preferences and dreams as well as skill development, increasing independence, and assuring health and safety. The ISP defines the goals and objectives established by the individual and the services needed to assist the individual in meeting his/her goals. It also defines the type, frequency and duration of each service selected by the individual and serves as the authorizing document for all services. For individuals on waivers, the payment authorization form must be completed prior to commencement of services. SSAs must assure that the individual to be served and other persons selected by the individual, and, when applicable, the provider(s) selected by the individual, are all active participants in the development of the ISP. SSAs are also responsible for integrating all sources of supports available to meet the needs and desired outcomes of the individual including alternative services.
  • 119. 44  When assisting individuals with plan development, the focus should be on such areas as helping the individual engage in meaningful, productive activities and develop community connections; selecting the provider; identifying the frequency of services and supports; and identifying the funding source for each service and activity. The plan needs to specify which services will be coordinated among which providers and across all appropriate settings for the individual. If an ISP includes HCBS waiver services, the plan must be in compliance with all applicable rules. The ISP also serves as a key document to ensure that services are provided in accordance with the plan, no matter who the service provider is, and ensure that the health and welfare needs of the individual are met as outlined in the plan. The ISP is also key to monitoring that the number of Board authorized units of service are delivered. SSAs do not “own” the plan but are the “recorders” of the plan who document the process for the individual to achieve desired outcomes.
  • 120. Critical Issues of Planning 45  The ISP is the document that is the basis for not only what services and supports the individual is to receive and what the health and welfare needs are of the individual, but the ISP is also the means that allows for the monitoring of service providers. The plan must be sufficiently specific to be able to document that the intent of the plan was met. It also needs to be written to allow for adequate flexibility to meet the needs of the individual…sometimes a fine line to walk. Individual plans must be written in a manner that is easily understood by all concerned persons including the individual, family members and those who will be implementing various service and supports outlined in the plan. Plans need to contain sufficient detail to clearly define the services to be delivered and must clearly identify health and safety concerns of the individual. The plan must indicate how those involved in plan implementation will address those concerns. Within the ISP, there must also be a balance between choices of the individual and the risks incurred by those choices that may impact health and safety. The planning process is an ongoing process. This means that the ISP will be changed and updated as needed. This may be in response to changing desires of the individual, change in providers, changes due to results of monitoring, changes in the individuals health or circumstances or many other issues/occurrences.
  • 121. Why is the ISP important? 46  Individual service plans are important for a multitude of reasons. Some of the most important reasons include:  Individuals are relying on this plan to help them achieve their goals and identified choices, preferences, desires, dreams and needs.  Individuals are relying on this plan to develop more independence and acquire more community connections.  Individuals are relying on this plan to maintain their health and safety.  Individuals are relying on this plan to develop new skills and improve existing skills.  Individuals are relying on this plan to develop community connections.  Individuals are relying on providers to deliver services based on this plan.  Providers are responsible for delivering services as outlined in the plan.  Providers are held accountable for the proper delivery of services as outlined in the plan.  This is a legal document that provides a roadmap of the person’s life plan.  Over time the ISP provides an historical view of the person’s life.
  • 122. 47  SSAs need to be work collaboratively with the individual and his or her family and circle of support, be responsive to the needs and desires of the individual and family, and be respectful, in all interactions with the individual and family. The individual service plan (ISP) is what provides the content and direction for what services and support are to be provided to the individual. The best practices discussed above are some of the many tools, principles and philosophies that should be used in the planning and delivery of the services and supports to assure that those services and supports result in meeting the intent of the plan, the expected outcomes of the plan and provide the quality of life chosen by the individual and his/her circle of support.
  • 123. Preparation and Quality Assurance for the ISP48  Planning is a critical process that drives services and supports and involves many people and numerous steps and processes. These typically include:  evaluating/determining choices, preferences needs and desires of the individual;  meeting to develop a plan, developing a budget based on available resources, implementing the plan;  evaluating the outcomes of the plan through quality assurance reviews, revising or redeveloping the plan as needed. Each of these are briefly discussed below. These steps may differ based on the chosen planning process and other variables.
  • 124. 49  Evaluation and data gathering provide the basis for the plan. The SSA oversees the process of working with the individual and others to gather and review information that is already available about the individual including strengths, choices, preferences, desires and needs. The SSA in conjunction with the team then decides if the group needs more information to develop a plan to support the individual. If so, additional information can be gathered using best practices.  Collecting needed information. The designated person gains permission to gather the needed information. If there are guardians they must give informed, written permission. Information can be gathered through a variety of means including formal and informal assessments, functional assessments, circles of support, person- centered planning, and other chosen best practices. Communication with the individual and those who know the person best is critical to determining what should be included in the person’s plan.
  • 125. 50  Developing the individual’s plan based on gathered data. The content of the individual plan drives the services and supports the individual will receive. This plan must be clearly and well written. It is key to achieving the desired outcomes and assuring the health and safety of the individual. Team meetings are commonly held to develop the plan. Meetings are usually composed of people that the individual invites. They are person centered and typically include many of the people that provide services and support to the individual. During the team meeting discussions and planning occur to help the individual achieve their desired goals in life.  Determining how the services and supports will be funded and developing an individual budget. How are services and supports to be funded? Is the individual eligible for DD and related services? What other sources of funds are available? The team/circle of support works with the individual to identify, secure and budget available resources.
  • 126. 51  Choosing a provider. The individual has free choice of provider. The individual, with assistance as needed, will choose the provider(s) to carry out the plan. This may include residential providers, county boards, and a host of private providers.  Implementation and Quality Assurance Reviews Implementing the plan is the next essential step in providing services and supports to assist the individual attain his or her desired outcomes. Quality assurance reviews are periodically conducted to assure the plan is carried out in accordance with the individual’s wishes as written in the plan and the expected outcomes are achieved.  Revision & Redevelopment of the Plan When it is determined that the plan needs to be revised or redeveloped the process begins again. The plan may need to be revised, reviewed or redeveloped for various reasons, some of which include rule requirements, changes desired by the individual, as a result of the quality assurance review, due to a change in the persons circumstances, or many other reason.
  • 127. 52  Examples of team members that may help the individual with planning and supports:  Guardians, family members, friends and advocates  Providers and agencies  Sheltered workshop personnel  The individual’s employer  Speech/Physical/Occupational therapists  Service and Support Administrators  Social Workers  Local Transportation Agencies  Supported Employment Staff (BVR or local employment agencies)
  • 128. Excerpts from… ISP Requirements in Rule 5123:2-1-11 Service and support administration. (J) ISP development The persons employed by or under subcontract with a county board to provide service and support administration shall develop ISPs. If an ISP includes HCBS waiver services or Medicaid case management services, those services shall be subject to approval by the department and ODJFS. If either department approves, reduces, denies, or terminates HCBS waiver services, or Medicaid case management services included in an ISP, the service and support administrator who is the single point of accountability for the individual shall communicate with the individual to ensure compliance with paragraphs (J)(3) and (S) of this rule. That person shall also: (1) Ensure that the development or revision of the ISP: (a) Occurs with the active participation of the individual to be served and other persons selected by the individual, and, when applicable, the provider(s) selected by the individual; (b) Addresses the results of the assessment process pursuant to paragraph (I) of this rule and of the monitoring conducted pursuant to paragraph (N) of this rule; (c) Focuses on the individual’s strengths, interests and talents; (d) Integrates all sources of supports, including alternative services, available to meet the needs and desired outcomes of the individual; (e) Occurs in accordance with rules adopted by the department. (2) Certify by signature and date that an ISP meets the following criteria for approval. This approval shall occur prior to implementation. (a) All ISPs shall: (i) Assist the individual to engage in meaningful, productive activities and develop community connections; and (ii) Indicate the provider, the frequency, and the funding source for each service and activity; and (iii) Specify which services will be coordinated among which providers and across all appropriate settings for the individual. (b) An ISP that includes HCBS waiver services shall: (i) Meet the requirements of paragraph (J)(2)(a) of this rule; (ii) Indicate the provider type; and (iii) With respect to that portion of the ISP that pertains to HCBS waiver services, meet the requirements of paragraph (C)(2) of rule 5123:2-9-04 of the Administrative Code. (3) Review and revise the ISP as appropriate under any of the following circumstances: (a) At the request of the individual or a member of the individual’s team; (b) Whenever the individual’s assessed needs, circumstances or status changes; (c) As a result of ongoing monitoring of ISP implementation, quality assurance reviews, and/or identified trends and patterns of unusual incidents or major unusual incidents; or (d) With respect to HCBS waiver services and Medicaid case management services, if a service is reduced, denied, or terminated by the department or ODJFS.
  • 129. (4) Provide a complete copy of the ISP to the individual or his or her guardian and a copy of relevant sections of the ISP to the individual’s providers. (5) Provide an individual with written notification and explanation of the individual’s right to a Medicaid fair hearing if the ISP process results in a recommendation for the approval, reduction, denial, or termination of an HCBS waiver service or Medicaid case management service. Notice shall be provided in accordance with section 5101.35 of the Revised Code. (6) Provide an individual with written notification and explanation of the individual’s right to use the administrative resolution of complaint process if the ISP process results in the reduction, denial, or termination of a service other than an HCBS waiver service or Medicaid case management service. Such written notice and explanation shall also be provided to an individual if the ISP process results in an approved service that the individual does not want to receive, but is necessary to ensure the individual’s health, safety, and welfare. Notice shall be provided in accordance with rule 5123:2-1-12 of the Administrative Code. 5123:2-9-04 Medicaid local administrative authority. (C) Duties of MLAA (MLAA means a county board with Medicaid local administrative authority for HCBS) (1) The MLAA shall perform assessments and evaluations of the individual in accordance with division (A)(1) of section 5126.055 of the Revised Code. (2) ISPs shall be developed for each individual in accordance with applicable requirements and shall: (a) Be written. (b) Be developed by the person(s) employed by, or contracting with, the county board that is responsible for service and support administration with the active participation of the individual, other persons chosen by the individual, and, where applicable, the individual’s provider in accordance with sections 5126.055 and 5126.15 of the Revised Code. (c)Describe, regardless of funding source, medical and other services identified through the assessment process to be furnished to the recipient, the service frequency, the service duration, the type of provider who will furnish each service, and the completion and approval date(s) of the ISP. (d) Be the fundamental tool by which the MLAA and state will ensure the health, safety, and welfare of the individuals served under the waiver. As such, it will be subject to periodic review and update. These reviews will take place to determine the appropriateness and adequacy of the services, and to ensure that the services furnished are consistent with the nature and severity of the individual’s disability; (e) Be updated annually. The ISP shall be updated more frequently if there is a change in the individual’s condition, if the individual chooses a new provider or types of services. The county board shall convene an ISP meeting within ten working days of a request from an individual for a review of the ISP. (f) Be subject to the approval of ODMRDD and ODJFS in accordance with sections 5111.871 and 5126.055 of the Revised Code. (g) Identify the county board representative(s) responsible for service and support administration. (h) Maximize the use of natural supports and generic resources. (i) Be maintained in accordance with rule 5101:3-1-17.2 of the Administrative Code.
  • 130. Individual Rights: An Ohio Focus 54  Throughout history, individuals with disabilities have often been denied their rights that most Americans take for granted.  Ohio has reinforced the rights of individuals with developmental disability through statute. Section 5123.62 of the ORC Rights of Persons with Mental Retardation or a Developmental Disabilities is the statute that addresses these rights. Other Ohio statute and Federal law address other aspects of rights of individuals as well.  When interacting with individuals, including when providing services and supports, it is imperative that you be aware of and honor each individual’s rights. Following is information that will help you recognize and honor those individual rights.
  • 131. 55  What is the Revised Code? The Ohio Revised Code (ORC) is the law in the state of Ohio. When a bill is passed by the state legislature and signed by the Governor, it becomes a part of the Ohio Revised Code. It is the law. ORC 5123.62 The Ohio legislature passed a bill that identifies the “rights for persons with mental retardation or a developmental disability” in 1986. It remains the law in Ohio today. Federal Law Rights for persons with DD are also in federal law. In addition, all U.S. citizens have the rights guaranteed them in the U.S. Constitution. There are the basic civil rights for everyone with or without disabilities.
  • 132. 56  What are ‘Rights’? ‘Rights’ are the rules that help to make everyone equal. As a person, you have some rights when you are born. These are called ‘human rights’. In addition, you have ‘legal rights’ that are a part of the law in this country and in this state (Ohio). It is important to know your rights so that if people try to take them away, you can stop them or get help to stop them.  Differences in Adult and Children Rights Legal rights are held by parents for their children because parents are legal guardians unless a court has intervened. Every child has basic human rights protected by state and federal law. A person is “emancipated” at the age of 18 and assumes his/her legal rights. This is true for people with or without disabilities.
  • 133. 57  Guardianship Individuals with DD are their own guardian at the age of 18 unless a court has appointed a legal guardian. Guardianship may be full or limited to specific areas. An individual who has a court appointed guardian maintains all rights unless a specific right has been restricted by the court or the guardian.  What are ‘Responsibilities’? ‘Responsibilities’ are the things that other people expect us to do. Responsible people know what their rights are and respect the rights of other people. Being responsible means that you care about the rights of other people.
  • 134. 58  Additional Support Needed Individuals with DD often need additional education in learning their rights and responsibilities. Special classes and teaching materials help people with DD learn more about their rights and how to speak up and advocate for themselves.  The Bill of Rights Ohio’s law has specified ‘rights’ for individuals with mental retardation and/or other developmental disabilities.  It is the responsibility of all staff to assure that these rights are granted and that each person with a developmental disability is aware of and understands his or her rights.
  • 135. ORC 5123.62  The rights of persons with a developmental disability include, but are not limited to, the following:  ORC 5123.62… 59
  • 136. 60  Courtesy and Respect…  Individuals have the right to be treated at all times with courtesy and respect and with full recognition of their dignity and individuality.  In simple terms… To always be treated nicely and as a person no matter the circumstances.  A Safe Place To Live…  The right to an appropriate, safe, and sanitary living environment that complies with local, state, and federal standards and recognizes the persons’ need for privacy and independence.  In simple terms… Have a clean safe place to live in and a place to be alone
  • 137. 61  Good Nutrition…  The right to food adequate to meet accepted standards of nutrition.  In simple terms… to have food that is good for you.  Freedom of Religion…  The right to practice the religion of their choice or to abstain from the practice of religion.  In simple terms… to be able to go, if you want, to any church, temple, mosque
  • 138. 62  Medical Care…  The right of timely access to appropriate medical or dental treatment.  In simple terms…to be able to go to a doctor or dentist when you are sick or need a check-up.  Ancillary Services…  The right of access to necessary ancillary services, including, but not limited to, occupational therapy, physical therapy, speech therapy, behavior modification and other psychological services.  In simple terms…To be able to have people help you with the way you walk, talk, do things with your hands, act or feel, if you need it.
  • 139. 63  Medical Treatment…  The right to receive appropriate care and treatment in the least intrusive manner.  In simple terms…To be treated kindly and gently when you receive the care you need and want.  Privacy…  The right to privacy, including both periods of privacy and places of privacy.  In simple terms…To be able to have time and a place to go to be by yourself.
  • 140. 64  Communication…  The right to communicate freely with persons of their choice in any reasonable manner they choose.  In simple terms… To be able to call, write letters or talk to anyone you want about anything you want  Personal Property…  The right to ownership and use of personal possessions so as to maintain individuality and personal dignity.  In simple terms… To be able to have your own things and to be able to use them.
  • 141. 65  Friendships…  The right to social interaction with members of either sex.  In simple terms… To be able to have men and women as friends.  Be All That You Can Be…  The right of access to opportunities that enable individuals to develop their full human potential.  In simple terms… To be able to join in activities, have friends, participate in community activities and do things that will help you grow to be the best person you can be.
  • 142. 66  Contribute to Your Own Support…  The right to pursue vocational opportunities that will promote and enhance economic independence.  In simple terms…To be able to work at a job of one’s choosing and make money.  Americans with Disabilities Act …  Assures employers shall not discriminate against a qualified individual with a disability.  Legislation passed by the United States Congress in 1990 to prohibit discrimination against people with disabilities and to guarantee them equal access to employment, public services, public accommodations, and telecommunications.
  • 143. 67  Equality…  The right to be treated equally as citizens under the law.  In simple terms…To be treated just like everyone else.  Free From Harm…  The right to be free from emotional, psychological or physical abuse.  In simple terms…To not be hit, yelled at, cursed at or called names that hurt you.
  • 144. 68  Learning, Growing, Playing…  The right to participate in appropriate programs in education, training, social development, and habilitation and in programs of reasonable recreation.  In simple terms…To be able to learn new things, make friends, have activities to do, and go out in your community  Freedom To Choose…  The right to participate in decisions that affect their lives.  In simple terms…To be able to tell people what you want and be part of making plans or decisions about your life
  • 145. 69  Advocacy or Representation…  The right to select a parent or advocate to act on their behalf.  In simple terms…To be able to ask someone you want to help you, let others know how you feel or what you want.  It’s My Money…  The right to manage their personal financial affairs, based on individual ability to do so.  In simple terms…To be able to use your money to pay for things you need and want.
  • 146. 70  Privacy…  The right to confidential treatment of all information in their personal; and medical records, except to the extent that disclosure or release of records is permitted under sections 5123.89 and 5126.044 of the Revised Code.  In simple terms…To be able to say yes or no before people talk about what you do at work or home or look at your file.  ORC 5123.89  Confidentiality of records; disclosure.  ORC 5126.044  Disclosure of identity of individual or release of record or report.
  • 147. 71  Freedom of Speech…  The right to voice grievances and recommend changes in policies and services without restraint, interference, coercion, discrimination, or reprisal.  In simple terms…To be able to complain or ask for changes if you do not like something without being afraid of getting in trouble.  Freedom…  The right to be free from unnecessary chemical or physical restraints.  In simple terms… Not be given medicine that you don't need or want, nor be held down if you are not hurting yourself or others.
  • 148. 72  The Right to Vote…  The right to participate in the political process.  In simple terms…To vote, learn about laws and your community.  The Right To Say “NO”…  The right to refuse to participate in medical, psychological, or other research experiments.  In simple terms…To say “yes” or “no” to being a part of a study or experiment.
  • 149. ORC 5123.62 Client Rights 73  Every state agency, county board of mental retardation and developmental disabilities, or political subdivision that provides services, either directly or through a contract, to persons with a developmental disability shall give each provider a copy of the list of rights contained in section 5123.62 of the Revised Code. Each public and private provider of services shall carry out the requirements of this section in addition to any other posting or notification requirements imposed by local, state, or federal law or rules.  The provider shall make copies of the list of rights and shall be responsible for an initial distribution of the list to each individual receiving services from the provider. If the individual is unable to read the list, the provider shall communicate the contents of the list to the individual to the extent practicable in a manner that the individual understands. The individual receiving services or the parent, guardian, or advocate of the individual shall sign an acknowledgement of receipt of a copy of the list of rights, and a copy of the signed acknowledgement shall be placed in the individual’s file. The provider shall also be responsible for answering any questions and giving any explanations necessary to assist the individual to understand the rights enumerated. Instruction in these rights shall be documented.  Each provider shall make available to all persons receiving services and all employees and visitors a copy of the list of rights and the addresses and telephone numbers of the legal rights service, the department of mental retardation and developmental disabilities, and the county board of mental retardation and developmental disabilities of the county in which the provider provides services.
  • 150. House of New Hope 5123.62 Rights of persons with a developmental disability. The rights of persons with mental retardation or a developmental disability include, but are not limited to, the following: (A) The right to be treated at all times with courtesy and respect and with full recognition of their dignity and individuality; (B) The right to an appropriate, safe, and sanitary living environment that complies with local, state, and federal standards and recognizes the persons’ need for privacy and independence; (C) The right to food adequate to meet accepted standards of nutrition; (D) The right to practice the religion of their choice or to abstain from the practice of religion; (E) The right of timely access to appropriate medical or dental treatment; (F) The right of access to necessary ancillary services, including, but not limited to, occupational therapy, physical therapy, speech therapy, and behavior modification and other psychological services; (G) The right to receive appropriate care and treatment in the least intrusive manner; (H) The right to privacy, including both periods of privacy and places of privacy; (I) The right to communicate freely with persons of their choice in any reasonable manner they choose; (J) The right to ownership and use of personal possessions so as to maintain individuality and personal dignity; (K) The right to social interaction with members of either sex; (L) The right of access to opportunities that enable individuals to develop their full human potential; (M) The right to pursue vocational opportunities that will promote and enhance economic independence; (N) The right to be treated equally as citizens under the law; (O) The right to be free from emotional, psychological, and physical abuse;
  • 151. House of New Hope (P) The right to participate in appropriate programs of education, training, social development, and habilitation and in programs of reasonable recreation; (Q) The right to participate in decisions that affect their lives; (R) The right to select a parent or advocate to act on their behalf; (S) The right to manage their personal financial affairs, based on individual ability to do so; (T) The right to confidential treatment of all information in their personal and medical records, except to the extent that disclosure or release of records is permitted under sections 5123.89 and 5126.044 of the Revised Code; (U) The right to voice grievances and recommend changes in policies and services without restraint, interference, coercion, discrimination, or reprisal; (V) The right to be free from unnecessary chemical or physical restraints; (W) The right to participate in the political process; (X) The right to refuse to participate in medical, psychological, or other research or experiments. Effective Date: 09-22-2000
  • 152. 75  5123.64 Enforcement duties of providers; procedure upon violation  Every provider of services to persons a developmental disability shall establish policies and programs to ensure that all staff members are familiar with the rights enumerated in section 5123.62 of the Revised Code and observe those rights in their contacts with persons receiving services.  Any policy, procedure, or rule of the provider that conflicts with any of the rights enumerated shall be null and void. Every provider shall establish written procedures for resolving complaints of violations of those rights. A copy of the procedures shall be provided to any person receiving services or to any parent, guardian, or advocate of a person receiving services.  Any person with mental retardation or a developmental disability who believes that the person’s rights as enumerated in section 5123.62 of the Revised Code have been violated may:  Bring the violation to the attention of the provider for resolution;  Report the violation to the department of mental retardation and developmental disabilities, the ombudsperson section of the legal rights service, or the appropriate county board of mental retardation and developmental disabilities;  Take any other appropriate action to ensure compliance with sections 5123.60 to 5123.64 of the Revised Code, including the filing of a legal action to enforce rights or to recover damages for violation of rights.
  • 153. 76  5123.65 Self-administration of medication.  In addition to the rights specified in section 5123.62 of the Revised Code, individuals with developmental disabilities who can safely self-administer medication or receive assistance with self-administration of medication have the right to self-administer medication or receive assistance with the self-administration of medication. The department of mental retardation and developmental disabilities shall adopt rules as it considers necessary to implement and enforce this section. The rules shall be adopted in accordance with Chapter 119. of the Revised Code.
  • 154. 77  Remember….it is the responsibility of everyone who works with, supports or otherwise interacts with persons with disabilities to assure they are aware of, understand and are afforded their rights.  When Rights Violations Becomes an MUI Some rights violations must be reported as a Major Unusual Incident. A rights violation that results in physical or emotional harm must be reported as an MUI.
  • 155. 78  Restricting Rights  Rights must never be restricted without the approval of the individual and/or his or her guardian. Rights are often violated through the use of behavior plans, through the mode of “not enough money” and through medication “restraint.” Everyone who supports an individual with DD must be on guard to guarantee and protect rights.  Reporting Rights Violations…  Any person with DD who believes their rights have been violated may:  Tell their provider so it may be resolved;  Report it to the Department of DD or the Ohio Legal Rights Service;  Tell their Service and Support Administrator; or,  File a legal action.  Annual Review of Rights  Individuals who receive services from a county board of DD must have their rights reviewed each year and sign a statement that it was done.
  • 156. Rights: An International Focus 79  The United Nations Department of Economic and Social Affairs based in New York and the Office of the High Commissioner for Human Rights in Geneva have multiple responsibilities including:  to support the full and effective participation of persons with disabilities in social life and development;  to advance the rights and protect the dignity of persons with disabilities and;  to promote equal access to employment, education, information, goods and services.  One of the mandates of the Secretariat for the Convention on the Rights of Persons with Disabilities was to develop the Convention on the Rights of Persons with Disabilities which was adopted in 2006.  The Convention on the Rights of Persons with Disabilities and Optional Protocol entered into force on May 3, 2008. This marked ‘a major milestone in the effort to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms of persons with disabilities and to promote respect for their inherent dignity’.
  • 157. 80  Over 130 nations have now signed the Convention agreeing to abide by its principles. There are eight guiding principles that underlie the Convention and each one of its specific articles. These are:  Respect for inherent dignity, individual autonomy including the freedon to make one’s own choices, and independence of person’s  Non-discrimination  Full and effective participation and inclusion in society  Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity  Equality of opportunity  Accessibility  Equality between men and women  Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities  Monitoring occurs to assure implementation through a committee on the rights of persons with disabilities. For more information on the Convention, visit www. un.org/disabilities.
  • 158. Harvard Project on Disability (www.hpod.org) A human rights handbook for people with developmental disabilities We Have Human Rights We Have Human Rights
  • 159. 2 Contents About human rights . . . . . . . . . . . . . . . . . . . . .3 Section A. Your rights Chapter 1. Respect for the individual . . . . . .4 Equality . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .5 Safety . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6 Home and family . . . . . . . . . . . . . . . . . . . . . . .7 Privacy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .8 Chapter 2. Inclusion in the community . . . . .9 Independent Living . . . . . . . . . . . . . . . . . . . .10 Work . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .11 Education . . . . . . . . . . . . . . . . . . . . . . . . . . . .12 Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .13 Chapter 3. Change in the society . . . . . . . . .14 Access . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .15 Political life . . . . . . . . . . . . . . . . . . . . . . . . . .16 New attitudes . . . . . . . . . . . . . . . . . . . . . . . . .17 Culture and sports . . . . . . . . . . . . . . . . . . . . .18 Section B. Building skills together Exercise 1: I want to live like this! . . . . . . .19-22 Exercise 2: Speak up with power . . . . . . . .23-26 Get together•Make a plan•Take action . . . . .27 A book for self-advocates Welcome to the power of human rights. This book is for people with developmental disabilities. You can use it to learn about your rights. You can also use it to talk with others about your rights. When you speak up for yourself, you are a self-advocate. When you work together with others, you can make change happen. Welcome to the power of human rights! Harvard Project on Disability (www.hpod.org) A human rights handbook for people with developmental disabilities We Have Human Rights We Have Human Rights • Authors: Bret Hesla and Mary Kay Kennedy, Advocating Change Together (www.selfadvocacy.org) • Design: Donn Poll • Special thanks to * BlueLaw International LLP * Authors of Human Rights. Yes! Janet E. Lord, Katherine N. Guernsey, Joelle M. Balfe, Valerie Karr and Editor Nancy Flowers. • All photos printed with permission. We’re grateful to the many generous contributors, as listed with each photo. The Harvard Project on Disability is generously supported by a grant from Foundation Open Society (Zug). © 2008 The President and Fellows of Harvard College. All rights reserved. ISBN 978-1-60643-065-1 Hungary. Photo: Hungarian Society of People with Golden Heart.
  • 160. 3 Because we are human, we have human rights. This law is called the Convention on the Rights of Persons with Disabilities Up next: Chapter 1: Four key rights about respect for the individual In the past, people with disabilities have not been treated as equals. But that is changing. In 2007, the United Nations passed a new law. It says people with disabilities have the same rights as everyone else. It says all people with disabilities are equal before the law. It says this applies to women and girls, and children with disabilities, too. If my country signs on, what will change? Your government promises to take action to end discrimination based on disability! They will: • change laws and make new ones • protect people’s rights • enforce the laws • educate the public This book is about your human rights. It tells about some of the key rights you have because of this law. It also gives you ideas for how to work with others to get your rights. New York. Photo: UN photo/ Paulo FilgueirasVoices “We must forever keep to our own ideal and pursuit and continue making fresh efforts for the advancement of people with disabilities.” Deng Pufang, China
  • 161. 4 We have many rights that protect our basic human dignity, our bodies, and what we do at home. Here are four of those rights: Section A. Your rights Chapter 1. Respect for the individual Equality We have the right to be treated as equal citizens. Safety We have the right to be safe from violence and abuse. Home and family We have the right to be part of a family—and to start one. Privacy We have the right to privacy, no matter where we live. Up next: More about these rights of respect Romania. Photo: R. Antonovici Voices “My body’s nobody’s body but mine.You run your own body, let me run mine.” Peter Alsop, USA George-Daniel is from Romania. He lives at home with his mom and dad and sister. His family has taken vacations at the beach since he was young. Today he is ten years old and his family makes every effort to give him a life like any other child.
  • 162. 5 Chapter 1. Respect for the individual Equality We have the right to be treated as equal citizens. Voices “The problem is not how to wipe out the differences, but how to unite with the differences intact.” Rabindranath Tagore, Bengali poet and musician Nepal. Photo: CIL Kathmandu Sound familiar? What does equal mean? I can’t vote and I don’t have a job. My country’s law says I cannot make my own decisions. It feels like there is a wall between me and others. It’s a wall I can’t see but can feel. Our school didn’t have the money to teach me. My family often ignores what I want. What does the new law say about equality? We need laws that protect our equal rights. Society must break down the walls that keep us from having the same rights as everyone else. Discrimination is one wall. So is poverty. So is poor education. Once the walls are down, we still need support. Because of discrimination in the past, we need extra help to make things right. We have the legal right to make decisions about our lives. Group work Laws come from dreams Pass out paper. Ask each person (with support) to draw a picture or write down one law they would like to have to protect their equal rights. Later, ask a local leader to come to your meeting. Each person can show and tell about their idea. Then discuss what laws you do have. Also talk about how to get new ones.
  • 163. 6 Chapter 1. Respect for the individual Safety We have the right to be safe from violence and abuse. Sound familiar? We are abused in secret, in places where we live. I was given heavy drugs to control and punish me. I was deprived of food and water. They did experiments on me. I was not asked. I am forced to work hard for no pay. I think people harm us because they are afraid of us. What does the new law say about safety? We have a right to be safe—at home, at school, at the doctor. It is not our disability that puts us at risk; rather it is the attitude of the abusers. The state should seek out and punish abusers. Police should be trained about disability. Even in prison, we have the right to be safe from harm. We have the right to decide what happens to our bodies. Group work I know who to tell Find out how people with disabilities can report abuse. Tell it to your group. Have each person make a poster with this information on it. Talk about why it might be wise to let family and caretakers know that you will report abuse. Many people will need support to report. Decide who each person could ask to help them. Role-play telling someone you trust about abuse and asking for support and help. Note: This may bring out painful stories. Some in your group might need one-to-one support. Plan to have extra people to help with this. Also, know the laws in your area. Some stories may be told that you must report. Key fact People with disabilities are more likely to be sexually abused in their lives. Romania. Photo: R. Antonovici
  • 164. 7 Chapter 1. Respect for the individual Home and family We have the right to be a part of a family— and to start one. Alert If your country signed the UN treaty, it will help you get these rights. Key fact In many countries, it is common for people with disabilities to be taken away from family to live in institutions. Sri Lanka. Photo: Handicap International Sound familiar? I was taken away from my family when I was six years old. I was sterilized against my will so I can’t be a parent. I want to get married, but my guardian keeps saying no. I could raise children if I had a little help. They said the only way for me to get help was to move away from home. What does the new law say about family? Everyone deserves to be part of a family. Growing up in a safe home, with a family, is the right place for all kids to be. We have the right to form loving relationships. We can love whoever we want. We have the right to get married if we choose. Our bodies and our sexuality are good things. We should not be stopped from having kids just because of our disability. Group work Family portrait Ask each person to draw a picture. Say, “Show the family you’d like to be a part of someday. It could be what you have now or be very different.” Later, take turns telling about your picture. Then ask, “What’s one thing you need to reach this goal?”
  • 165. 8 Chapter 1. Respect for the individual Privacy We have the right to privacy, no matter where we live. Up next: Chapter 2: Four key rights about inclusion in the community Sound familiar? Someone is always hovering around when I’m with my boyfriend. My caregiver stole money from me. The doctor told my health story to a bunch of strangers in the room. My helper tells other people all sorts of stuff about me. What does the new law say about privacy? What we do in our room is our business. We decide what others can know about our lives. No one can read our letters unless we say it’s OK. No one can listen to our phone calls unless we say it’s OK. We have the right to private space to be with our sweetheart. Helpers have no right to tell others what they know about us. Group work Role reversal Make teams of two: one person with a disability (the watcher), one without (the doer). The doer does two private things. They may pretend to call their sweethearts. Or write a short letter. The watcher stays close by and watches the doer very carefully. After 10 minutes, gather as a large group. Take turns telling how it felt to role play. Next tell how it feels when people watch you do private things in real life. Australia. Photo: Tutti Ensemble Inc. Voices “My privacy is just like anyone else’s... it’s private.” Rosemary Kayess, Australia
  • 166. 9 We have many rights that help make sure we play an equal role in our community. Here are four of these rights. Section A. Your rights Chapter 2. Inclusion in the community Independent living We have an equal right to live on our own in the community. Work We have an equal right to work, in a job we choose, and to earn a decent living. Education We have the right to an equal education, side by side with everyone else. Health We have the right to the best possible health care. Guatemala. Photo: Regi Marroquin Voices “Living independently is about being able to make our own decisions as to where and with whom we live... It is about helping each other and working together.” Robert Martin, New Zealand
  • 167. 10 Chapter 2. Inclusion in the community Independent living We have an equal right to live on our own in the community (with support!). Alert If your country signs the treaty, it will pass laws and help you get these rights. Australia. Photo: Tutti Ensemble Inc. Sound familiar? I want to get out of this big institution. I live a long way from shops, and have no way to get there. They told me I have to live with someone I don’t know. I don’t have enough money for food and clothes. What does the new law say about independent living? We decide where we live. We decide who we live with. We decide how we live. We need key information so we can decide what is best for us. Independent does NOT mean that no one helps us. We have the right to support to be as independent as we can be. Our choices should be respected, not ignored. We have the right to a decent life. Enough food. Enough clothing. A place to live. Clean water. Group work I want to live like this. (Go to page 19.) Voices “These nurses were… doing things for me around the clock. I didn’t have to make any decisions for myself…. When they all finally left, that’s when I realized that I could have a life, despite what everyone was saying. I could make choices, and that is freedom.” Ed Roberts, USA
  • 168. 11 Chapter 2. Inclusion in the community Work We have the equal right to work, in a job we choose, and to earn a decent living. The right to work does not mean we will all get a job. But it means we have an equal chance to get a job. Voices ”Everybody can be great... because anybody can serve. You don’t have to have a college degree to serve.” Martin Luther King, Jr., USA Ethiopia. Photo: ILO/M. Crozet 2003 Sound familiar? The job was open, but I had no way to get there. “Hiring someone like you will cost me more than it’s worth.” I want a real job; one that makes a difference. When they saw me at the interview, I knew they would not hire me. They will not hire me because they think I am not healthy. What does the new law say about work? Our work is more than something to keep us busy. We are a labor force waiting to be tapped. We should get equal pay for equal work. Wages help us enjoy our other rights. We have an equal right to get a job. We need to be able to ride the bus to hold a job. We need good health care to be able to keep a job. We need laws to protect our right to work. We have a lot to give. Group work What does that mean? Work as a group to read what the new UN law says about work (below) and figure out what it means. Here’s how: Read it out loud. Pause every few words and ask what that part means. Include every person in the process. Rewrite with simple words, starting with “We have the right to...” When you’re done, rewrite on poster paper and decorate. Send copies to local leaders with a letter. Ask them how your country is making laws to protect this right. “State Parties recognize the right of persons with disabilities to work, on an equal bases with others: this includes the right to the opportunities to gain a living by work freely chosen or accepted in the labor market and work environment that is open, inclusive and accessible to people with disabilities.”
  • 169. 12 Chapter 2. Inclusion in the community Education We have the right to an equal education, side by side with everyone else. Alert If your country signed the treaty, it will help you get these rights. We cannot be excluded from any school activity because we have a disability. Key fact More than 90% of all children with disabilities in Africa do NOT attend school. J. Balescut, 2005 Sound familiar? I was taught in a separate classroom. My only classmates were kids with disabilities. We got babyish material to work on. I wanted art but our class never got it. There was no bus, so I didn’t go to school. I never was taught to read. What does the new law say about education? Just because we have a disability doesn’t mean we can’t learn. Our education should be just as good as that for any child. We belong in the regular classroom as much as possible. We want to learn, not just to be put in the classroom. The school must change so it works for us, too. We should be taught in a way we can understand. If we need support to take part in an equal way, we should get it. Teachers must be taught about their own prejudices. Teachers must learn how best to teach us. The government must hire trained teachers. Group work School days Each person find a partner. Give these instructions. “Think about school. Talk with your partner about: • the best parts of your school experience. What made it so good? • the worst parts of your school experience. What made it so bad?” Gather as a large group. Have each pair share two or three thoughts. Ask everyone: Did any “worst experiences” violate the right to education? How? Cambodia. Photo: Heng Sorin
  • 170. 13 Chapter 2. Inclusion in the community Up next: Chapter 3: Four key rights about how society must change Alert If your country signs the treaty, it will help you get these rights. Key fact In California, USA, almost 2/3 of people with developmental disabilities said their health worker talks to someone else in the room but not them. Kosovo. Photo: Mental Disability Rights International (MDRI) Health We have the right to the best possible health care.Sound familiar? I can’t afford health insurance. The doctor talks to my mom but not to me. No one told me about HIV. I don’t have the money to get my teeth fixed. My medications are wrong, but the doctor can’t fix it. What does the new law say about health? We should have the same health care as others. Our care should be as good as others’ and not cost more. We should not have to travel farther than others to get care. Insurance companies must treat us equally. Medical workers must treat us equally. Health is more than health care. These make us less healthy: being poor, poor schooling, poor housing. These help us be well: enough money, enough education, enough for a good life. Society must reach for the top—the best well-being for each person. Group work Teach the doctors Pretend you’ve been asked to teach a group of doctors and nurses. Teach them how to work with people who have a disability. In groups of three, make a list of the “dos and don’ts.” Then read your lists to the whole group. Make a combined list and consider who to share it with. You don’t have a right to be healthy. But you do have the right to the same quality of care as everyone else. Disability is not a sickness.
  • 171. 14 Section A. Your rights Chapter 3. Change in the society Voices “People in Qatar are finally starting to behave right. The family attitude is changing. Now they take the handicapped child to public malls and parks. This was not happening six or seven years ago. We must be patient and continue to educate society.” Saif al-Hajri, Qatar Access We have an equal right to be able to get to and use public spaces and public services. Political life We have an equal right to vote and have a say in laws and policies that affect us. New attitudes We are regular people and have the right to be treated as any other person. Culture and sports We have the right to take equal part in arts, sports and leisure. USA. Photo: Advocating Change Together “I work in food services at the college in my town. I love my job. My co-workers respect me and I respect them. We all learn from each other. My husband and I own our own home. We just paid off the loan. We take the bus a lot of places. We also get support from staff to drive us places.” - Brenda, USA Society has to change so that we have equal rights. Here are four of these rights:
  • 172. 15 Chapter 3. Change in the society Access We have an equal right to be able to use public spaces and public services. Alert If your country signed the treaty, it will help you get these rights. Voices “We cannot afford to let the issue of disabilities be simply an afterthought… Accessibility... has got to be a design feature, not an add-on.” William Kennard, USA Sound familiar? The courthouse was way up on a hill. I couldn’t get there. The explanation was to hard to understand. So I had no idea what to do. I couldn’t join the team. They said it wasn’t the place for me. There was no bus, so I couldn’t go to the doctor. What does the new law say about access? Buildings must have a way for us to get in. We have the right to information in a way we can understand: Sign language. Simple language. Someone explaining it to us. If we need rides to be included, we have the right to get them. If we need an assistant to be included, we have the right to get the help we need. When there is a vote, someone must tell us. Group work Practice seeing access Ask: “Was today's meeting accessible?” Make four teams, one each for “meeting space,” “meeting notice,” “transportation,” and “meeting process.” Ask each group: “When you look at who showed up for this meeting, what does it tell you about our own access?” Share results. Then ask, “How can we do better?” AND “How can our community do better?” Indonesia. Photo: Handicap International
  • 173. 16 Chapter 3. Change in the society Political life We have an equal right to vote and have a say in laws and policies that affect us. Voices “South Africans with disabilities astounded the nation in April 1994. They braved the bombs and threats that preceded South Africa’s first-ever democratic elections. Images of disabled people—queuing at the polls, arriving in wheelbarrows, being led by family members, some crawling for kilometers to cast their first vote—filled our television screens during those historic three days.” Maria Rantho, South Africa USA. Photo: Human Policy Press, Syracuse University Sound familiar? I have a disability so I can’t vote. Politicians and leaders often ignore us. We’re not seen as important, so we weren’t invited to the meeting. I could not understand what was happening, so I was not involved. How could I vote? I wasn’t told when and where the election was. What does the new law say about political life? We have an equal right to vote. We have a right to have someone help us vote. We have a right to a secret vote. We must have access to the polling place. When public meetings happen, we should be told about them. And we should have the support we need to be there. We should be included. We should have a say in policies and laws that affect our lives. Group work No vote, no voice Make a list of barriers to voting for people with developmental disabilities. Ask everyone: “Why is it hard to vote?” Divide into groups of three. Have each group create a very short skit showing one problem. Perform each for the group. After each, ask “What could we do to solve this problem?”
  • 174. 17 Chapter 3. Change in the society New attitudes We are regular people and have the right to be treated as any other person. Key fact In India, about half of all households that have a member with a disability view the cause of disability as a “curse of God.” World Bank survey, 2007 Voices “We are tired of being labeled ‘mentally retarded.’ We are people first before our disability.” Mia Farah, Lebanon Cambodia. Photo: Handicap International Sound familiar? Have you ever heard these bad ideas? Disability is a medical “problem,” to be fixed by experts. We are helpless. We are innocent children. People label us as “special.” We are objects of fear. Stories and movies are full of villains who have a disability. What does the new law say about attitudes? Our country must work to spread the word: We are regular people. We are not a problem. Society has a problem. The problem is we are treated badly and denied rights. We don’t need to be fixed. Society needs to be fixed. We are not broken. Society is broken. We must be included in decisions about our lives. We are in charge of our lives. Not some experts. Group work At the movies In your group, talk about how books and movies show disability. “Do you see people with disabilities in movies?” “Are they regular people?” “Heroes?” “Bad guys?” Ask, “What do books and movies teach people about disability?” and “What can we do about it?” bad idea bad idea bad idea bad idea bad idea bad idea
  • 175. 18 Chapter 3. Change in the society Culture and sports We have the right to take equal part in arts, sports and leisure. Up next: An exercise about where you want to live Alert If your country signs the treaty, it will help you get these rights. Voices “Whatever the speed of our feet or the power of our arms, each of us is capable of the highest virtues. Intelligence does not limit love, nor wealth produce friendship.” Eunice Kennedy Shriver, USA Iraq. Photo: Special Olympics Sound familiar? I was never encouraged to make music. If there’s no bus, we can’t go to the movies. We can’t read the menu, so can’t eat at the restaurant. The school soccer team does not allow me to play. What does the new law say about culture and sports? We are artists, musicians, actors, poets and athletes, just like everyone else. We have talents to give to the world. Arts give meaning to life. Arts and sports are a key part of belonging to society. In many cases, we are blocked from being a part of cultural events. Schools need to work to include children with disabilities in arts and sports. We have the right to play sports with others who have disabilities. We also have the right to play sports that are open to everyone. Group work The guessing game Give time for each person to make a list (with help, if needed) of things they like to do (basketball, reading, concerts, etc). Collect and read lists aloud one at a time. Everyone guesses who made that list. Afterwards, ask, “How did you guess? What do these lists tell us about a person?” and “How do these things make us who we are?”
  • 176. 19 We have the right to decide where we live. We have the right to decide how we live. We have the right to decide who we live with. But sometimes we have not been able to do so. In fact, when life is hard, it’s hard to even imagine what you want. This exercise gives you practice at deciding. It helps you imagine how you want to live. It gives you practice at telling others your dream. Section B. Building skills together Exercise 1: I want to live like this! Living independently in the community Turn the page for step-by-step instructions Argentina. UN Photo/ L. Solmssem • Korea. Photo: International Labor Organization • Romania. Photo: R. Antonovici
  • 177. 20 Section B. Building skills together Exercise 1: I want to live like this! This exercise adapted from Training for Transformation: A Handbook for Community Workers, by Anne Hope and Sally Timmel, Mambo Press, 1984 Goal: People learn about the right to live where they choose and how they choose. They notice what support they need and name what stands in their way. Description: People silently look over a number of photos. They choose one that shows something they want. Then they talk about the support they need to get it, and what, if anything, stands in the way. Materials needed: Lots of magazines, scissors, adhesive tape. In advance: Gather magazines with a big variety of pictures from your culture. Get pictures showing where and how people live—houses, apartments, institutions, tents, families, roommates, etc. Get as many as you can. Get a big variety. It’s OK to have several of each image. Spread the pictures out widely—maybe you’ll need more space than one table. On the wall, put “I choose where I live.” 1. Tell about this right (see page 10). 2. Explain the pictures. “On the table here we have lots of pictures showing different ways people live.” 3. Tell the plan. Look, don’t take. “You’ll have time to look at all the pictures and think about one or two that fit for you, that show where and how you want to live. Don’t pick up the pictures, just look.” 4. Prepare for silence. “While you’re looking, we’d like to have no talking.” 5. Invite everyone to go look. “Ready? OK, with no talking, we’ll take about five minutes for everyone to look at the pictures.” 6. Take one. After five minutes, invite everyone (again silently) to go take one or two pictures that show how they want to live. Then all sit down. 7. Show and tell. One at a time, ask each person to post their picture on the wall and tell the group about why they chose it—about where and how they want to live. LLeeaaddeerr oonnllyy lleeaaddss Do not try to take part if you are leading this exercise. Your job is to help others. You explain, you watch the time.
  • 178. 21 8. Discussion: After everyone has gone, notice similarities and differences among people’s choices. Also call attention to the images not picked. “Do any people with disabilities live like this?” “Why did no one pick these?” 9. Option: Worksheet. Have people work in pairs to think more deeply about their picture choices. Give each person a copy of the worksheet (page 22). Have people work in pairs to answer the questions, “What support do you need to live this way?” and “What stands in the way?” A DECENT LIFE (Follow-up Option A) Do the same exercise for the right to have enough for a decent life. Gather pictures showing things necessary for a decent life (food, clothes, etc). Repeat steps 1-9 for the right to live a decent life. CULTURE AND SPORTS (Follow-up Option B) Do the same exercise for the right to enjoy sports, leisure and art. Gather pictures showing how people enjoy life with culture, sports, leisure, art. Repeat steps 1-9 for the right to choose how you live (cultural life). Living independently in the community master--make copies I want to live like this: Glue picture here. Up next—an exercise to practice speaking up for yourself. What stands in the way? __________________________ __________________________ __________________________ __________________________ __________________________ __________________________ What support do I need? __________________________ __________________________ __________________________ __________________________ __________________________ __________________________ NAME Worksheet: p. 22 TTiimmee’’ss uupp As workshop leader, make sure everyone has a chance to talk. You have to be willing to gently cut people off if they are going too long, so that it’s fair to everyone. USA. Photo: Partnership Resources Inc. Bangladesh. Photo: Handicap International
  • 179. 22 worksheet—make copies I want to live like this: Glue picture here. Up next: An exercise to practice speaking up for yourself What stands in the way? __________________________ __________________________ __________________________ __________________________ __________________________ __________________________ What support do I need? __________________________ __________________________ __________________________ __________________________ __________________________ __________________________ NAME
  • 180. 23 stro ng Assertive Aggressive Three choices. When we talk, what we say is only half of the message. The other half is how we say it. There are three choices. One way is to be passive, or shy (you give up easily). A second way is to be aggressive, or threatening. The best way is to be assertive. Assertive means you respect others and stand up for yourself. This exercise helps you practice that skill. Passive r espect self and other person eye cont act det ermined weak shy no eye conta ct don’t respect se lf harsh th reat to the other person don’t respect the otherpe rson Section B. Building skills together Exercise 2: Speak up with power How to be assertive Turn the page to get started with this exercise
  • 181. 24 Section B. Building skills together Exercise 2: Speak up with power Role-play cards, p.26. Not a Performance Some people get nervous about acting. Try to get everyone involved in a way that is comfortable for them. The key is to have fun! 26 Section B. Building skills together Role-play ideas Getting health care Actor: a person needing health care Co-actors: the person’s friend and a nurse or doctor Scene: the local clinic A person with a disability needs treatment for a minor injury. The nurse looks only at the person’s friend. The nurse asks the friend about the prob- lem. The nurse does not ask the person who has the problem. The person tries to talk anyway, but the nurse keeps talking to the friend. The teaser Actor: a worker who is being teased Co-actors: a worker who is teasing and two workers who are watching Scene: the workplace A worker is busy doing her job. Another worker comes up and starts teasing her. She says, “You are slow.” Two other workers are watching. They do not know what they should do. The teaser will not stop the teasing. The meeting Actor: a person trying to speak at a meeting Co-actor: a person who keeps interrupting Scene: a community meeting A person is trying to speak at a meeting about buses. They want to tell how they need more buses. They want to tell about how they can’t get a job without a way to get there. It is their turn to speak, but another person keeps interrupting. Buying a shirt Actor: a shopper Co-actor: a sales person Scene: a clothing store A person is shopping in a clothing store. A sales person has decided that one certain shirt would be just right for the customer. The shirt is not what the customer likes. It is also too babyish. The sales person is really pushy. We have rights Actor: (you decide) Co-actor: (you decide) Scene: (you decide) Create your own role-play. Choose one right. Show how that right comes into everyday life. Show how a person wants something but does not get it. Keep it simple. One small step Actor: someone who uses a wheelchair Co-actor: the manager of a store Scene: a store A person who uses a wheelchair likes to shop. His favorite store is not accessible. There is a small step in front of the door. So, the person needs to have a friend along to help. Or he must wait until a stranger comes along to help. The person is meeting with the store manager to talk about this human rights problem. Goal: To learn how to be assertive. To see why it’s the best way to get your rights. Description: People take turns role-playing simple skits three times: once being passive, once aggressive, and once assertive. Talk about the difference afterward. 1. Introduce the topic. Ask people to gather in a circle. Explain the topic. (Use “Three choices,” page 23.) Ask, “Has anyone heard of any of these three?” Let people respond. Then ask, “Which do you think is the best way to get your human rights?” 2. Explain what a role-play is. Say, “We're going to learn about these three ways using role-play. Role-playing is acting. We make up a simple story. You get a part to play. Then you're told how to act.” Then say, “We will do each role-play three times. Each time you can try a different way of acting.” 3. Choose a story idea. Pick a simple situation where something is not right. You can use a suggestion from the group, or pick an idea from page 26. Ask for volunteers to act it out. Have one person be the main role. Help the actors think of a few simple lines of what to say. Run the role-play three times. First have the main character be passive. Next time, aggressive. Last time, assertive. 4. Let the skits be very short. Stop each role-play once the point is seen. Then say, “Now let’s talk about what we just saw.” Use some of the questions on page 23. 5. Repeat many times. Give every person a chance. Try other role-plays. Follow the same process (Steps 3 and 4 above). 6. Close by talking about the power to decide. “Today we practiced new skills. Just because you have a habit of being passive doesn’t mean that’s the way you have to be. We can choose how we act in our lives. We’re most likely to get what we want if we are assertive.” USA. Photo: Advocating Change Together
  • 182. 25 1. What did you see and hear that tells you a person is being assertive? (or passive, or aggressive) How did the person’s body look? (answers may include the following) How did the person sound? 2. How do you think the person feels about herself (or himself)? 3. How do you think others see her (or him)? 4. What do you think would happen to a person who was passive (or aggressive or assertive) all the time? 5. Did the person get what they wanted by being passive (or aggressive or assertive)? Did they say what they wanted? Passive: low energy, head down, eyes down Aggressive: standing too close, tense body posture, scowl on face Assertive: good eye contact, calm, reasonable, direct Passive: low voice, not excited, not confident Aggressive: loud voice, excited, angry, pushy, not respectful Assertive: normal voice, confident, open, calm Passive: no control, depressed, easily swayed, down, sad Aggressive: out of control, mean, not liked, angry Assertive: in control, happy, proud, self-respect, calm Passive: no respect, pushover, unsure Aggressive: scared, want to stay away, want to fight back, think the person is out of control and unreasonable Assertive: respectful, not a pushover Passive: No? Aggressive: No? Assertive: will not always get what you want, but you have a better chance Be a coach Once someone agrees to be in the role-play, help them prepare. Take them aside and briefly tell them what the role play is trying to show. Tell them to over-do it to make the point. The more they exaggerate the better!Passive: get depressed, get taken advantage of, low opinion of self Aggressive: lose friends, not respected, staff would put on “behavior program”, not happy, anger would eat them up Assertive: has a better chance of getting more of what they want out of life, happy life, self-directed How to be assertive Discussion questions for after each role-play USA. Photo: Advocating Change Together Section B. Building skills together Be aware that what is respectful behavior differs between countries.
  • 183. 26 Section B. Building skills together Role-play ideas Getting health care Actor: a person needing health care Co-actors: the person’s friend and a nurse or doctor Scene: the local clinic A person with a disability needs treatment for a minor injury. The nurse looks only at the person’s friend. The nurse asks the friend about the prob- lem. The nurse does not ask the person who has the problem. The person tries to talk anyway, but the nurse keeps talking to the friend. The teaser Actor: a worker who is being teased Co-actors: a worker who is teasing and two workers who are watching Scene: the workplace A worker is busy doing her job. Another worker comes up and starts teasing her. She says, “You are slow.” Two other workers are watching. They do not know what they should do. The teaser will not stop the teasing. The meeting Actor: a person trying to speak at a meeting Co-actor: a person who keeps interrupting Scene: a community meeting A person is trying to speak at a meeting about buses. They want to tell how they need more buses. They want to tell about how they can’t get a job without a way to get there. It is their turn to speak, but another person keeps interrupting. Buying a shirt Actor: a shopper Co-actor: a sales person Scene: a clothing store A person is shopping in a clothing store. A sales person has decided that one certain shirt would be just right for the customer. The shirt is not what the customer likes. It is also too babyish. The sales person is really pushy. We have rights Actor: (you decide) Co-actor: (you decide) Scene: (you decide) Create your own role-play. Choose one right. Show how that right comes into everyday life. Show how a person wants something but does not get it. Keep it simple. One small step Actor: someone who uses a wheelchair Co-actor: the manager of a store Scene: a store A person who uses a wheelchair likes to shop. His favorite store is not accessible. There is a small step in front of the door. So, the person needs to have a friend along to help. Or he must wait until a stranger comes along to help. The person is meeting with the store manager to talk about this human rights problem.
  • 184. 27 GET TOGETHER•MAKE A PLAN•TAKE ACTION Making Change Step by Step As we learn about our rights, we will see changes we want to make. People with disabilities can work together—step by step—to make those changes. Others can help, too. Here’s a true story about a group in the United States. This action took place in 2006 in Minnesota, USA. 1. One person’s dream The city buses were not running. There was a bus strike. I could not get to my job. I could not get to the store. I should be able to get around. This is my right. 2. Is it a good issue? Others in my group felt the same way. It seemed like a problem we could work on and have success. We decided to work together to make change. 3. Get the facts We found allies who could help us. We gathered new information. Who has the power to settle the strike. Is transportation a right or a privilege? Who is most affected? 4. Plan action We planned a meeting with state leaders. We planned a rally afterward. Our message: Settle the strike! We set a date. We practiced what we would say. Everyone in our group would say something. 5. Take action We met as planned. We explained the problem. We told them how we felt. We told them what we wanted. 6. Result They listened. The TV news covered our big rally. The strike was settled a few weeks later. Our action made a difference. Now the buses are running. We are able to get to work. 7. Follow up We keep talking to officials. We tell them: If we can’t get there, we’re not included.
  • 185. 28 We Have Human Rights A human rights handbook for people with developmental disabilities In 2007, the United Nations passed a new law: people with disabilities have the same rights as everyone else. We Have Human Rights is produced by the Harvard Project on Disability, which is generously supported by a grant from Foundation Open Society (Zug). Harvard Project on Disability (www.hpod.org) A human rights handbook for people with developmental disabilities We Have Human Rights We Have Human Rights To learn more about disability rights, get this companion book: Human Rights. Yes! is a human rights curriculum on the rights of persons with disabilities. It was written by people with a wide range of experience in human rights and disability. It will be valuable to human rights workers, advocacy groups, and people working on human rights education. www.humanrightsyes.org • Digni ty • Ability to choose • Independence • Non-d iscrimination Participation•Fullinclusion•Respectfordifference•Disabilityispartofeverydaylife•Equal opportunity•Accessibility•Equalityofmenandwomen•Respect forchildren•Dignity•Abilitytochoose•Independence•Non-discrimination•Participation ISBN 978-1-60643-065-1
  • 186. Incidents adversely affecting health and welfare. OAC 5123:2-17-02 1
  • 187. Objectives:  Provide new and/or current staff/providers with an awareness of the importance incident reporting  Create awareness about abuse and neglect so staff can identify and report information  Educate staff on types of Unusual Incidents and MUI’s  Educate staff/providers on the procedures and process of reporting incidents  Educate staff/providers of roles and responsibilities of providers, support administrators, and investigative agent 2
  • 188. The Rule:  Establishes the requirements for managing incidents adversely affecting health or welfare.  Implements a continuous quality improvement process in order to prevent or reduce the risk of harm to individuals. 3
  • 189. The Rule:  The Purpose is to establish a system to:  Report  Investigate  Review  Remedy  Analyze 4
  • 190. Common Acronyms  Provider: person giving services to eligible client.  MAR: Medical Administrative Record (Med sheet lists all med’s, dosages, and times given.)  ASD: Autism Spectrum Disorders  MR: Mental Retardation. (It is important to realize this is seen as an offensive term by most providers, SA’s and Individuals. It is recommended you use Developmental Disability when addressing a client or professional.)  UI Unusual Incident  MUI: Major Unusual Incident  PPI Primary Person of Interest  IA Investigative Agent 5
  • 191. Definitions Rule Reference: Page 1 (C )(2) "Agency provider" is a provider, certified or licensed by the department or a provider approved by the Ohio office of medical assistance to provide services under the transitions developmental disabilities waiver, that employs staff to deliver services to individuals and who may subcontract the delivery of services. "Agency provider" includes a county board while providing specialized services. 6
  • 192. Definitions Rule Reference: page 2 (C)(10)  Independent Provider (Replaces Individual Provider)  "Independent provider" means a self- employed person who provides services for which he or she must be certified under rule 5123:2-2-01 of the Administrative Code or approved by the Ohio office of medical assistance and does not employ, either directly or through contract, anyone else to provide the services. 7
  • 193. Support Broker SELF Waiver Rule Reference: Page 11(G)(1)(e)  Support broker for an individual enrolled in the self-empowered life funding waiver shall be notified of MUI’s. New addition with the SELF Waiver. 8
  • 194. QMRP Language change Rule Reference: Page 6(c)(18)  "Qualified intellectual disability professional“ QIDP has the same meaning as in 42 C.F.R. 483.430 (2012). 9
  • 195. Summary of MUI rule changes  Rule title to include MUI and UIs. The new title is Addressing major unusual incidents and unusual incidents to ensure health, welfare, and continuous quality improvement.  Changes to Protocols (A, B, and C category investigations.)  Peer-to-peer definition changes (Physical Abuse, Verbal Abuse, Misappropriation). Clarifies the definition for greater consistency  Verbal Abuse definition changes  Missing Individual Definition Changes 10
  • 196. Summary of MUI rule changes  Strengthening of the UI process. More incidents will be categorized as UI’s = assure process effectively addresses these incidents.  Revised communication and dispute resolution opportunities (i.e., information, appeal) for peer/guardian in a Peer-to-Peer case.  Law enforcement notifications on criminal Peer-to- Peer cases. Local conversations to assure appropriate follow-up  Law Enforcement and Attempted Suicide as an MUI – even when individual is not being served 11
  • 197. Summary of MUI Rule changes  Known / Unknown Injury Changes  Death- Suspicious or Accidental v.s. Natural  UI Definition  Health and Welfare  Provider Notifications  ICF Reporting Requirements  Support Broker Self Waiver  Peer to Peer Notifications  Incident Report Requirements  Quarterly to Semi Annual for MUI P& T Analysis 12
  • 198. Revisions emphasize…  Improvements that focus on triaging incidents based on severity  Providing the right amount of safety, verification and investigation  Reducing unnecessary worry, time, and effort on paper compliance that doesn’t impact outcomes 13
  • 199. Reporting Requirements Rule Reference: Page 8(D)(3)(a-e)  Reports regarding the following major unusual incidents shall be filed and the requirements of this rule followed only when the incident occurs in a program operated by a county board or when the individual is being served by a licensed or certified provider:  (i) Medical emergency;  (iii) Rights code violation;  (iv) Significant injury;  (v) Unapproved behavior support; and  (vi) Unscheduled hospitalization. 14
  • 200. Category A Category B Category C Accidental or Suspicious Death Attempted Suicide Law Enforcement Exploitation Medical Emergency Unscheduled Hospitalization Failure to Report Missing Individual Unapproved Behavior Support Misappropriation Death from Natural Causes or disease Rights code Violation Significant Injury Neglect Peer to Peer Acts Physical Abuse Sexual Abuse Verbal Abuse Prohibited Sexual relations 15
  • 201. Required reporting at all times MUI only when services are provided Attempted Suicide Medical Emergency Law Enforcement Rights code violation Physical, Sexual, Verbal abuse Significant Injury Peer to Peer Acts. Unapproved Behavior Support Misappropriation Unscheduled Hospitalization Exploitation Failure to Report Prohibited sexual relations Neglect Death 16
  • 202. Category Summaries  All MUI’s require an investigation meeting category A , B or C applicable requirements of this rule.  Category A Alleged Crimes (Police , CSB and IA involvement)  Category B Investigative Agent  Category C (Format Requirements)  Investigation categories may change based on the information obtained A, B and C. 17
  • 203. Training Rule Reference: Page 22 (P)(1)-(2)  Agency providers and county boards shall ensure staff employed in direct services positions are trained on the requirements of this rule regarding the identification and reporting of MUIs and UIs prior to direct contact with any individual. Thereafter, staff employed in direct service positions shall receive training during each calendar year which shall include annual training on the requirements of this rule including a review of health and welfare alerts issued by the department since the previous calendar year's training. 18
  • 204. Access To Records Rule Reference: Page 22-(O)  A county board or the department shall not review, copy, or include in any report required by this rule a provider's personnel records that are confidential under state or federal statutes or rules, including medical and insurance records, workers' compensation records, employment eligibility verification (I-9) forms, and social security numbers. The provider shall redact any confidential information contained in a record before copies are provided to the county board or the department. A provider shall make all other records available upon request by a county board or the department. 19
  • 205. Oversight Rule Reference: Page 22 F (N)  (1) The county board shall review, on at least a quarterly basis (not monthly), a representative sample of provider logs, including logs where the county board is a provider, to ensure that major unusual incidents have been reported, preventive measures have been developed, and that trends and patterns have been identified and addressed in accordance with this rule.  The sample shall be made available to the department for review upon request. 20
  • 206. Rule Reference: Page 22- (N)(2)  When the county board is a provider of services, the department shall review, on a monthly basis, a representative sample of county board logs to ensure that major unusual incidents have been reported and that trends and patterns have been identified and addressed in accordance with this rule. The county board shall submit the specified logs to the department upon request. 21
  • 207. Unusual Incidents Rule Reference: Pages 21 (M)(d)  Requires the provider to investigate unusual incidents, identify the cause and contributing factors when applicable, and develop preventive measures to protect the health and welfare of any at-risk individuals. 22
  • 208. Unusual Incidents Cont. Rule Reference: Page 21(M)(5)  Independent providers shall complete an incident report, notify the individual's guardian or other person whom the individual has identified, as applicable on the day an unusual incident is discovered.  Independent Providers will also maintain a log of unusual incidents. Rule Reference: Page 21 (M)(8) 23
  • 209. Rule Reference-Page18(L)(2)(a-j)  Specific individuals involved in established trends and patterns  (i.e., five major unusual incidents of any kind within six months,  ten major unusual incidents of any kind within a year, or other  pattern identified by the individual's team);  Specific trends by residence, region, or program;  Previously identified trends and patterns; and  Action plans and preventive measures to address noted trends and patterns. 24
  • 210. Analysis Rule Reference-Page18(L)(2)(a-j) All reviews and analyses shall be completed within thirty calendar days following the end of the six-month period. The semi-annual and annual analyses shall contain the following elements:  Date of review;  Name of person completing review;  Time period of review;  Comparison of data for previous three years;  Explanation of data;  Data for review by major unusual incident category type; 25
  • 211. Analysis Rule Reference: Page 18 (L)(1)  All agency providers shall produce a semi-annual (not quarterly) and annual report regarding MUI trends and patterns which shall be sent to the county board.  The county board shall semi-annually review all individual providers for MUI trends and patterns. The semi-annual review shall be cumulative for the first two quarters and include an in-depth analysis. The annual review shall be cumulative for all four quarters and include an in-depth analysis.  Each review period shall include the preventive measures taken to address the trends and patterns. 26
  • 212. PROVIDER NOTIFICATION OF DODD CASE CLOSURES  There is no longer a requirement that the County Board provide notification to the provider within 5 days of case being closed. 27
  • 213. Written Summaries Rule Reference: Page15 (J)(1)  No later than five working days following the county board's, developmental center's, or department's recommendation via the ITS incident tracking system that the report be closed, the county board, or developmental center, or department shall provide a written summary of the administrative investigation of each category A or category B major unusual incident… 28
  • 214. Written Summaries Rule Reference: Page 16 (J)(5)  An individual, individual's guardian, other person whom the individual has identified, or provider may dispute the findings by submitting a letter of dispute and supporting documentation to the county board superintendent, or to the director of the department if the department conducted the administrative investigation, within fifteen calendar days following receipt of the finding. An individual may receive assistance from any person selected by the individual to prepare a letter and provide supporting documentation. 29
  • 215. Written Summaries Rule Reference: Page15-Section15(J)(1) continued  including the allegations, the facts and findings, including as applicable, whether the case was substantiated or unsubstantiated, and preventive measures implemented in response to the incident to the following unless the information in the written summary has already been communicated. 30
  • 216. Investigations Rule Reference: Page 12 (H)(b)-(c)  Based on the facts discovered during administrative investigation of the major unusual incident, the category may change. If a major unusual incident changes category, the reason for the change shall be documented and the new applicable category administrative investigation procedure shall be used to investigate the major unusual incident.  Major unusual incidents that involve an active criminal investigation may be closed as soon as the county board ensures that the major unusual incident is properly coded, the history of the primary person involved has been reviewed, cause and contributing factors are determined, a finding is made, and prevention measures implemented. Information needed for closure of the major unusual incident may be obtained from the criminal investigation. 31
  • 217. Investigations Rule Reference: Pages 12(H)(2)(a)  All major unusual incidents require an administrative investigation meeting the applicable investigation procedure requirements established in appendix A, appendix B, or appendix C to this rule unless it is not possible or relevant to the administrative investigation to meet a requirement under this rule, in which case the reason shall be documented. Administrative Investigations shall be conducted and reviewed by investigative agents.  The department or county board may elect to follow the investigation procedure for category A major unusual incidents for any major unusual incident. 32
  • 218. Peer to Peer Notifications Rule Reference: Page 11(G)(4)  Notification shall be made to the individuals, individuals' guardians, and other persons whom the individuals have identified in a peer-to-peer act unless such notification could jeopardize the health and welfare of an individual involved. 33
  • 219. (E) Alleged Criminal Acts  Immediate reporting to law enforcement  Allegations of Abuse including Misappropriation and Neglect which may constitute a criminal act  The county board ensures notification has been made 34
  • 220. (F) Abused or Neglected Children  Allegations of Abuse or Neglect per Ohio Revised Code 2151.03 and 2151.031  Under the age of 21  Report to local public children’s agency  The county board shall ensure reports have been made 35
  • 221. Reporting Alleged criminal acts cont… Rule Reference: Page 10(E)(3)  The department shall immediately report to the Ohio state highway patrol, any allegation of physical abuse, sexual abuse, verbal abuse, misappropriation, exploitation, neglect, failure to report, or peer-to-peer act occurring at a developmental center which may constitute a criminal act. The department shall document the time, date, and name of person notified of the alleged criminal act. 36
  • 222. Reporting alleged Criminal acts Rule Reference: Page 10 (E)(2)  The provider shall immediately report to the law enforcement entity having jurisdiction of the location where the incident occurred, any allegation of physical abuse, sexual abuse, verbal abuse, misappropriation, exploitation, neglect, failure to report, or peer-to-peer act which may constitute a criminal act. The provider shall document the time, date, and name of person notified of the alleged criminal act. The county board shall ensure that the notification has been made. 37
  • 223. Reporting alleged Criminal acts Rule Reference: Page 10(E)(1)  Reporting of alleged criminal acts Nothing in this rule relieves mandatory reporters of the responsibility to immediately report to the intermediate care facility administrator or administrator designee, allegations of mistreatment, neglect or abuse, and injuries of unknown source when the source of the injury was not witnessed by any person and the source of the injury could not be explained by the individuals and the injury raises suspicions of possible abuse or neglect because of the extent of the injury or the location of the injury or the number of injuries observed at one particular point in time or the incidences of injuries over time pursuant to 42 C.F.R. 483.420(d)(2). 38
  • 224. Reporting MUI’s on Person served  Abuse, Neglect, Exploitation, Misappropriation, Death, Prohibited Sexual Relations, Law Enforcement, Attempted Suicide, Peer to Peer and Failure to Report  Regardless of where the incident occurred  Follow all rule requirements  Remaining categories (All other MUI’s) when:  Incident occurs in program operated by the county board  OR  When the individual is being served by a licensed or certified provider  Follow all requirements 39
  • 225. (D)(5) Immediate to 4 Hour Reporting  Provider or county board as a provider  Using county board identified system for MUIs  Report incidents or allegations of: ○ Abuse ○ Neglect ○ Exploitation ○ Misappropriation ○ Suspicious or accidental death ○ Media inquiries 40
  • 226. (D)(3) Upon Identification or Notification of MUI, Provider or County Board Shall:  Take immediate actions to protect all at risk individuals which shall include: ○ Immediate or ongoing medical attention as appropriate ○ Remove employee from direct contact until determined unnecessary ○ Other measures as necessary  The Department shall resolve any disagreements 41
  • 227. (D)(10)  County board shall have a system available 24-7 to receive and respond to reports.  MUI notification numbers:  During business hours (8am–4:30pm M-F) 740-201-3608 and 740-201-5812  After hours (4:30pm-8am), weekends, and holidays: Helpline 211 or1-800-684-2324. Ask to speak with DCBDD On Call. 42
  • 228. (G)(1) Notifications Upon Awareness of an Incident  To be made by provider or county board as a provider  Made the same day  Include immediate actions taken  DODD wants to see time of notification on the IRF. (Recommend you add a time slot)  Guardian, advocate, or person identified  SSA for individual  Licensed or certified residential provider  Staff or family in the home 43
  • 229. (G)(2)-(4)  Notifications or effort to notify shall be documented  The county board ensure notifications have been made  Do not notify the PPI, PPI’s spouse, or significant other  Not needed if the report came from person to be notified or in the case of death where the family is already aware 44
  • 230. (D)(4) County Board Upon Notification Shall:  Ensure reasonable measures are appropriate  Determine if additional measures are needed 45
  • 231. (G)(5) Notification to Providers When PPI Works for Multiple Providers  The Department makes these  Alleged crimes  The other provider determines if steps are needed to ensure health and safety  Notification of case disposition  Providers, county boards, developmental centers to notify the Department if the PPI works elsewhere in the system 46
  • 232. (D)(6) Submit Written Incident Report by 3:00 p.m. the Next Working Day  Agency providers, individual providers, and county boards as providers  Department prescribed format: DCBDD IRF is included in training packet  Fax #: (740) 201-3608 or (740) 201-5812 Attn: MUI Investigative Agents  DCBDD IA and SA must have report by 3pm the next working day – do not use postal service or inter-office mail; if fax is not available, hand delivery is suggested 47
  • 233. (K)(1) Written Procedure Implemented for Internal MUI Review  County boards and agency providers  Include responsibility for reasonable steps to prevent 48
  • 234. (K)(2) Development of Preventive Measures  Team including county board and provider  Address causes and contributing factors  Determine reasonable steps  Plans of Prevention/Correction are due in their entirety, 21 days from the date the IDF was mailed  In circumstances of few supports – implement what is reasonably possible. 49
  • 235. (D)(1) Any Person with DD Not Served  Report possible Abuse including Misappropriation or Neglect  To local law enforcement and the county board OR  Public Children’s Service Agency and county board  Entry page on ITS 50
  • 236. (H) General Investigation Requirements 51
  • 237. (H)(1)  All MUIs require an investigation meeting the requirements in Appendix A or B  Certified investigative agents shall conduct the investigations 52
  • 238. (H)(2)  The county board shall have at least one  investigative agent. The county board may  contract with a person or a government  entity.  Must be certified  Must receive annual Department-approved training 53
  • 239. (H)(5)  Agency Provider may conduct HR investigations from which information except for interviews may be used  The investigative agent shall conduct all interviews for MUIs unless Law enforcement or Children’s services is investigating  May obtain assistance with interviewing an individual 54
  • 240. (H)(6)  Commence an investigation immediately but no later than 24 hours for: ○ Abuse, Neglect, Exploitation, or Misappropriation ○ Rights Code ○ Suspicious or Accidental Death ○ Prohibited Sexual Relations ○ One determined by the county board 55
  • 241. (H)(7)  For other MUIs – Commence no later than 3 working days after identification or notification.  Decision based upon:  Initial information received  Consistent with health and safety of at risk persons 56
  • 242. (H)(10)  When an agency provider conducts an internal review of an incident, (HR investigation) and an MUI has been filed  The results of the review including statements and documents go to the county board within 14 calendar days of awareness of the incident 57
  • 243. (H)(11)  All DD and DODD Provider employees shall cooperate with any administrative investigation  Providers and the county board shall respond to information within timeframes requested 58
  • 244. (H)(12)  The investigative agent submits the report of investigation for closure in ITS within 30 working days.  Extensions may be granted by DODD based on established criteria. 59
  • 245. (I)(1) Dept directed investigations  The Department shall conduct the MUI investigation when the allegation is against:  Superintendent of a county board or developmental center  Executive Director or equivalent of a Counsel of Government  Management employee who reports to the Superintendent or Executive Director  An investigative agent  An SSA  An MUI contact for a county board  A current member of a county board 60
  • 246. (I)(1) Continued  Known relationship with A-G when it may present a conflict of interest or the appearance of a conflict of interest  County board employee who is alleged to be responsible for individual’s death, has committed sexual abuse, engaged in prohibited sexual activity, or committed physical abuse or neglect resulting in emergency room treatment or hospitalization. 61
  • 247. (J)(1)(2)  Those receiving written notice:  Individual or individual’s guardian or advocate  Licensed or certified provider and provider at the time of the incident  SSA or person selected to coordinate services  Not to family in case of death unless requested 62
  • 248. (J)(3)  Written summary not provided to PPI, PPI’s spouse, or significant other  A reasonable attempt to notify the PPI of disposition shall be made no later than 5 working days following case closure 63
  • 249. UI Definition Rule Reference: Page 7(c)(20)  "Unusual incident" means an event or occurrence involving an individual that is not consistent with routine operations, policies and procedures, or the individual's care or service plan, but is not a major unusual incident.  Unusual incident includes, but is not limited to: dental injuries; falls; an injury that is not a significant injury; medication errors without a likely risk to health and welfare; overnight relocation of an individual due to a fire, natural disaster, or mechanical failure; an incident involving two individuals served that is not a peer-to-peer act major unusual incident; and rights code violations or unapproved behavior supports without a likely risk to health and welfare. 64
  • 250. UI Definition Rule Reference: Page 7(c)(20)  Unusual incident includes, but is not limited to: dental injuries; falls; an injury that is not a significant injury; medication errors without a likely risk to health and welfare; overnight relocation of an individual due to a fire, natural disaster, or mechanical failure; an incident involving two individuals served that is not a peer-to-peer act major unusual incident; and rights code violations or unapproved behavior supports without a likely risk to health and welfare. 65
  • 251. Minor Injuries  lacerations, scrapes, contusions or  discolorations of known origin, minor burns, rash, minor, dental injuries  recreational/work related injuries, falls; peer-to-peer incidents that are not MUIs;  overnight relocation of an individual due to fire, natural disaster, or mechanical failure; 66
  • 252. Behavioral episode  a physical or verbal outburst of an eligible individual that does not require physical intervention.  Concerning Peer to Peer interaction that is not an MUI  Unapproved Behavior Supports without a risk to health or welfare. Ex. Taking radio away. 67
  • 253. Self-medication errors  an individual who administers their own medication (as outlined in their ISP) fails to administer the medication as prescribed (with no adverse effects). 68
  • 254. Atypical behavior  an occurrence where an eligible individual displays behavior that is unusual or displays a typical behavior increasingly which causes concern for health and safety. 69
  • 255. A Major Unusual Incident (MUI) is:  The alleged, suspected or actual occurrence of an incident when there is reason to believe the health or welfare of an individual may be adversely affected.  Or when an individual may be placed at a reasonable risk of harm.  If such individual is receiving services through the DCBDD service system or will be receiving such services as a result of the incident.  Major Unusual incidents directly relate to and are written about the individual receiving services that the incident happens to. Reports are about the victim, not the perpetrator 70
  • 256. MUI’s include:  Abuse  Attempted suicide  Death  Exploitation  Failure to report  Significant injury  Law enforcement  Medical emergency  Misappropriation 71
  • 257. MUI’s include:  Missing individual  Neglect  Peer-to-Peer acts  Prohibited sexual relations  Rights code violation  Unapproved behavior support  Unscheduled hospitalization 72
  • 258. Category Summaries  All MUI’s require an investigation meeting category A , B or C applicable requirements of this rule.  Category A Alleged Crimes (Police , CSB and IA involvement)  Category B Investigative Agent  Category C (Format Requirements)  Investigation categories may change based on the information obtained A, B and C. 73
  • 259. Category A Incidents  Require 4 hour notification to DCBDD  Require immediate Notification to Law Enforcement or Children Services in cases of suspected child abuse (up to age 21 for DCBDD Eligible individuals).  Require immediate notification to Law Enforcement for criminal cases. 74
  • 260. Category A Incidents  Cases in which Police, CSP, or IA may be involved in the investigation  Accidental or Suspicious Death  Exploitation  Failure to report  Misappropriation  Neglect  PTP act  Physical Abuse 75
  • 261. Category A Incidents  Prohibited Sexual Activity  Rights Code  Sexual Abuse  Verbal Abuse 76
  • 262. Failure to report:  When a person has reason to believe that an individual has suffered or faces substantial risk of suffering from any wound, injury, disability, or condition of such a nature as to indicate abuse or neglect. Including misappropriation. 77
  • 263. Failure to report:  And that person does not immediately report the incident to:  Law enforcement  Children Services  The DCBDD  The Omission of the reporting is itself the MUI and must be reported immediately. 78
  • 264. Abuse:  Physical:  use of physical force  That can be expected to or does result in physical or serious physical harm.  Including but not limited to: ○ Hitting ○ Slapping ○ Pushing ○ Throwing objects at an individual ○ Prone Restraints 79
  • 265. Abuse:  Sexual Abuse:  Unlawful sexual conduct or sexual contact  Verbal Abuse:  Purposefully using words, gestures or other communicative means to threaten, coerce, intimidate, harass, or humiliate an individual 80
  • 266. Misappropriation:  Depriving, defrauding, or otherwise obtaining the real or personal property of an individual by any means prohibited by the Ohio Revised Code.  It is a felony to steal even one penny! 81
  • 267. Exploitation:  The unlawful or improper act of using an individual’s resources for monetary or personal benefit, profit, or gain. 82
  • 268. Neglect:  When there is a duty to do so, failing to provide an individual with:  Treatment  Care  Goods  Supervision  Services necessary to maintain the health or safety of the individual. 83
  • 269. Neglect:  Consideration must be given to whether there is reasonable risk to health and safety.  Neglect includes patient endangerment which means an DD caretaker has created a substantial risk to the health or safety of an individual. 84
  • 270. Rule Reference: Page 4(a)(vi)  (vi) Peer-to-peer act. "Peer-to-peer act" means one of the following:  (a) Exploitation  (b) Theft…The $ limit for an MUI investigation regarding peer to peer was raised from $10 to $20. Peer To Peer 85
  • 271. Peer To Peer Rule Reference: Page 4(a)(vi)(c)  Physical act that occurs when an individual is targeting, or firmly fixed on another individual such that the act is not accidental or random. The incident results in an injury that is treated by a physician, physician assistant, or nurse practitioner. Allegations of one individual choking another or any head or neck injuries such as bloody nose, a bloody lip, a black eye or other injury to the eye, shall be considered major unusual incidents. 86
  • 272. Peer To Peer Rule Reference: Page 4 (a)(vi)(c)  Minor injuries such as scratches or reddened areas not involving the head or neck shall be considered unusual incidents and shall require immediate action, a review to uncover possible cause/contributing factors, and prevention measures. 87
  • 273. Peer to peer Rule Reference: Page 4 (a)(vi)(e)  Verbal act which means the use of words, gestures, or other communicative means to purposefully threaten, coerce, or intimidate the other individual when there is the opportunity and ability to carryout the threat. 88
  • 274. Peer to Peer & Law enforcement Notifications -discussion  Notifications shall be made to law enforcement or CSB as appropriate when an alleged crime has been committed. (The change in peer to peer physical act definition will help assure that appropriate notification to LE and CSB occurs regarding peer to peer MUI’s.) 89
  • 275. Prohibited Sexual Relations:  An DD employee engaging in consensual sexual conduct or having consensual sexual contact with an individual who is not the employee’s spouse, and for whom the DD employee was employed or under contract to provide care at the time of the incident and includes persons in the employee’s supervisory chain of command. 90
  • 276. Rights Code Violation:  Any violation of the rights enumerated in section 5123.62 of the Revised Code that creates a reasonable risk of harm to the health or safety of an individual. 91
  • 277. Category B Incidents  Required to report the same day  Required to implement immediate plan of correction to ensure health and welfare.  Attempted Suicide  Medical Emergency  Missing Individual  Death from natural causes or disease  Significant Injury (Combined known/unknown injury 92
  • 278. Attempted Suicide  Attempted Suicide:  A physical attempt by an individual that results in emergency room treatment, in-patient observation, or hospital admission. 93
  • 279. Death MUI’s  Natural Causes, medical condition or disease.  IA follows Coroner lead. 94
  • 280. MISSING INDIVIDUAL Rule Reference: Page 5 (b)(iv)  An incident that is not considered neglect and an individuals whereabouts after immediate measures taken are unknown and the individual is believed to be at or pose an imminent risk of harm to self or others.  An incident when an individual’s are unknown for longer than the period of time specified in the individuals service plan that does not result in imminent risk of harm to self or others shall be investigated as an unusual incident. 95
  • 281. Medical Emergency:  An incident where emergency medical intervention is required to save an individual’s life:  Heimlich maneuver  CPR  IV fluid for dehydration  Epi-Pen 96
  • 282. Known / Unknown Injury (Significant Injury) Rule Reference: Page 6 (b)(v)  Significant injury. "Significant injury" means an injury of known or unknown cause that is not considered abuse or neglect and that results in concussion, broken bone, dislocation, second or third degree burns or an injury that requires immobilization, casting, or five or more sutures. Significant injuries shall be designated in the incident tracking system as either known or unknown cause. 97
  • 283. Category C Incidents  Law Enforcement  Unapproved Behavior Supports  Unscheduled Hospitalizations 98
  • 284. Law Enforcement:  Any incident that results in the individual being charged, incarcerated, or arrested.  New: Required even if client is not receiving services. 99
  • 285. Unapproved Behavior Support Rule Reference: Page 6 (c)(ii)  “Unapproved behavior support” is an intervention that is prohibited by paragraph (J) of rule 5123:2-1-02 of the Administrative Code or an aversive strategy implemented without the approval by HRC or BSC or without informed consent, that results in a likely risk to health and welfare. An intervention that is prohibited by paragraph (J)of rule 5123:2-02 of the O.A.C. and does not likely pose a likely risk to health and welfare shall be investigated as an unusual incident. 100
  • 286. Unscheduled Hospitalization:  Any hospital admission that is not that is not scheduled unless the hospital admission is due to a condition that is specified in the ISP or nursing care plan indicating the specific symptoms and criteria that require hospitalization. 101
  • 287. Appendix C and the SSA  Appendix C cases are Law Enforcement, Unscheduled Hospitalizations and Unapproved Behavior Supports. These are the only 3 categories where the Appendix C Protocol and form can be used.  Appendix C forms can be completed by the SSA and the Provider who was providing services to the individual when the incident occurred.  The IA or MUI Contact will enter the information from Appendix C form into ITS.  The IA will be responsible for reviewing it and ensuring information is complete, incident is properly coded and meets the requirements of rule. 102
  • 288. Overview of Individual Options and Level One Waivers  What is a Waiver? A waiver is a part of a state’s Medicaid State Plan. It is an exception to the Medicaid legislation that is granted to a state by the federal Centers for Medicare and Medicaid Services allowing the state to waive some of the requirements of Medicaid. To gain approval, waivers must be cost effective, efficient, and consistent with the objectives of the Medicaid program. Waivers serve people who are elderly, who have mental retardation and/or developmental disabilities and/or who have physical disabilities. The purpose of waivers is to keep people living in their own homes rather than moving to more expensive options such as nursing homes or intermediate care facilities. Waivers are one of the optional benefits that states may choose to offer through the Medicaid State Plan as an alternative to institutional care. Through this option, Ohio’s State Plan offers Home and Community-Based Services Waivers (HCBS). These waiver programs provide alternatives to living in facility-based care settings such as a nursing home or intermediate care facility for the mentally retarded (ICFMR). Because this type of care can be costly, Ohio's Medicaid program can help Medicaid-eligible Ohioans pay for their long-term care. 112
  • 289.  Waiver programs were first authorized in 1981 under section 1915c of the Social Security Act. The first time these waivers became available in Ohio was July 1991. This first waiver was called the Individual Options waiver and is one of the two waivers available today in Ohio. The second waiver to become available is the Level One waiver that began in 2003. Waivers are available on a limited basis, based on available funds and meeting eligibility requirements.  Since waivers are a part of Medicaid, they are administered by the same agencies as the overall Medicaid program. At the Federal level, Medicaid is administered by the U.S. Department of Health and Human Services, Centers for Medicare and Medicaid Administration (CMS). In Ohio, the Medicaid program is administered by the Department of Jobs and Family Services (ODJFS). Other agencies administer specific Medicaid programs through interagency operating agreements with ODJFS. ODJFS applies for all HCBS waivers and sets parameters for waiver programs. 113
  • 290.  The ODDD Eligibility Unit, Division of Medicaid Administration and development processes all waiver applications and determines level of care for HCBS waivers. County Boards of DD administer HCBS waivers as defined in ORC Section 5126.055. There is an annual renewal process for continued waiver services and individuals enrolled on waivers must meet Medicaid eligibility requirements every month.  Before waiver services can be provided an authorization for waiver services must be secured. This process authorizes the ISP and associated payment. Why is authorization of waiver services important? The result specifies how much of what services an individual will receive, when, and according to what parameters. The process associated with the authorization of waiver services includes allocation of state and local resources for the reimbursement of services provided. 114
  • 291.  Individuals who have been approved to receive waiver services will choose their service provider through the Free Choice of Provider Process. It is the responsibility of the service and support administrator to assist individuals in the selection of service providers. Service providers must be certified through the ODDD. Per 5123:2-9-11 of the Ohio Administrative Code, which has details about the Free Choice of Provider Process, “An individual shall be responsible for making all decisions regarding free choice of providers unless the individual has a guardian, in which case the guardian shall be responsible for making such decisions. Individuals, including those with guardians, have the right to participate in decisions regarding the free choice of providers. An individual who does not have a guardian or an individual's guardian may designate another person, including a member of the individual's family, to participate in the process of making decisions regarding free choice of providers…”  Other details available in this rule include such areas as the requirement for ODDD to maintain a current provider list and details on the requirement that SSAs must utilize this list to assist individuals when selecting providers. 115
  • 292. Individual Options Waiver (IO Waiver)  Waiver services provide certain Ohio citizens the training and support that they need in addition to the Medicaid State Plan services that they can receive. Medicaid State Plan services are often called ‘Medicaid Card’ services and include prescription medication, hospital care, physician visits and other healthcare services.  Waiver services allow a limited number of people who meet certain conditions to stay in their own homes and receive services there and in the community instead of living in an Intermediate Care Facility for the Mentally Retarded (ICF/MR). To receive IO waiver services, an individual must be eligible for Medicaid and have an ICF/MR Level of Care approved by the Department of Job and Family Services.  As of 2008, all 88 counties have individuals enrolled on the IO waiver with approximately 12,000 individuals enrolled across the state.  The average cost in 2008 of Individual Options waiver services per person is approximately $47,000 while the average cost of ICF/MR services per person is approximately $90,000. Not only does an individual benefit from staying in their own home, but a significant cost savings can be gained. 116
  • 293.  Service and Support Administrators (SSAs) who work in each county board of mental retardation and developmental disabilities will assist individuals to apply for Medicaid and complete their Level of Care paperwork. Through the individual planning process, with help from the SSA and input from professionals and service providers, each individual, his/her family and advocates will determine which services are needed, how often they are needed, where they will be provided and who will provide them.  The funding ranges and payment amounts that will be available to an individual for the IO waiver funded portion of these services are based on the needs of each individual as measured by the Ohio Developmental Disabilities Profile (ODDP). The Acuity Assessment (AAI) is also used to determine a waiver budget amount if an adult needs out of home day services through the waiver. 117
  • 294. The IO waiver provides the following services:  Adult Day Services These services are available to individuals who are not eligible to receive educational services. Adult Day Services include:  Adult Day Support These services are provided separate from any home or facility in which an individual resides, focus on non-work activities, and include five components:  Assessment -- may be formal or informal, for the purpose of developing an Individual Service Plan (ISP)  Personal care -- includes personal hygiene, eating, communication, mobility, toileting, and dressing  Skill reinforcement -- includes implementing behavioral intervention plans, and help with the use of communication and mobility devices  Training in self-determination -- includes developing self-advocacy skills and acquiring skills that enable an individual to become more independent  Recreation and leisure -- includes supports identified in the ISP that are therapeutic, and help to develop and maintain social relationships and family contacts 118
  • 295.  Vocational Habilitation These services teach and reinforce concepts related to work such as:  * Responsibility  * Attendance  * Task completion  * Problem Solving  * Social Interaction  * Motor skill development  * Safety 119
  • 296.  Supported employment  Supported Employment – Community  This service provides job coaches, supervision and training to help individuals find and keep paying community jobs at places where persons without disabilities are employed and to work side-by-side with them.  Supported Employment – Enclave  This service provides job coaches, supervision and training to help individuals who work as a team to find and keep paying jobs at one or more work sites of the ‘host’ community business.  Non-Medical Transportation This service pays for transportation needed by an individual to get to and from places where he/she receives Supported-Employment – Community, Supported Employment – Enclave, Adult Day Services and/or Vocational Habilitation waiver services. 120
  • 297.  Environmental Accessibility Adaptations  This service includes changes to the individual’s home that help him/her to be more independent. The modifications may include widening doorways, building ramps into the home, changing bathrooms for individuals who use wheelchairs or other aids to walk, and installing special electric or plumbing changes needed to operate medical equipment.  Home Delivered Meals  Preparation and delivery of up to two meals each day, seven days per week is provided for individuals who are unable to make their own meals or get healthy meals for themselves in some other way. 121
  • 298.  Homemaker/Personal Care Services are provided to increase the independence of the individual within his/her home or the community and may include:  Basic personal care and grooming such as bathing, hair care and help dressing;  Assisting the individual going to and/or using the bathroom;  Help with household chores for the individual, such as changing bed linens and doing the laundry, so the individual remains in good health and is comfortable;  Helping the individual take his/her medication or perform health-related tasks that have been delegated by the individual’s physician and a licensed nurse;  Helping the individual to prepare shopping lists, to make meals, to shop in the community for food and clothing;  Assisting the individual to go to medical appointments, to use community services, to take walks and participate in recreational activities inside and outside the home;  Cooking meals with the individual or for the individual;  Assisting the individual to get to and from work and other vocational activities;  Running errands on behalf of the individual, such as picking up medication from the drug store. 122
  • 299.  Interpreter Services People who provide this service help the individual to communicate his/her messages and feelings and understand the messages of others.  Nutrition Service A nutritionist provides direction to individuals who are at risk because they a not eating the right kinds of foods to stay healthy. The service can be used to prepare a plan for healthy eating and can also be used to teach the individual, family or others who help with meals.  Respite Care Services are provided to individuals for a short period of time in an ICF/MR and/or other home licensed by the Department of DD in order to give persons who care for them a break. Respite services are also available when caregivers are unable to provide care because of their illness or absence 123
  • 300.  Social Work & Counseling Professional help is provided to assist individuals and their families to solve problems and gain social skills that will help the individual to have a better life in the community.  Specialized Adaptive or Assistive Equipment and Supplies Services include devices, controls, appliances, supplies and/or other equipment that an individual needs to do everyday activities or to communicate his/her needs. The waiver pays for items that cannot be paid for through the Medicaid State Plan.  Supported Employment – Adaptive Equipment Payment can be made to buy or modify equipment that will be owned by an individual who is receiving Supported Employment – Community or Supported Employment – Enclave and that the individual needs to get and/or keep his/her job.  Non-Medical Transportation Payment can be used to help individuals get to and from waiver services or other community services, activities or resources. 124
  • 301. Level One Waiver  The Level I Waiver is for people with developmental disabilities. Like the IO waiver, this waiver is also intended to allow people to stay in their own homes rather than live in an ICFMR.  This waiver is for people who require the care given in an Intermediate Care Facility for the Mentally Retarded (ICFMR) but want to live at home and who have a network of families, friends, neighbors and professionals who can safely and effectively provide the needed care.  The cost for this help cannot be more than the Level I Waiver allows. 125
  • 302.  Covered services include:  Homemaker/Personal Care Homemaker/Personal Care is provided in a person’s home and helps a person with daily living activities such as personal hygiene, dressing and eating.  Institutional Respite/Informal Respite Respite Care is support on a short-term basis for the person who receives the waiver to give family members a break.  Transportation Transportation enables people on the waiver to travel to waiver and community services, activities and resources. Whenever possible, family, neighbors, friends or community agencies that can provide the Transportation without charge will be used.  Personal Emergency Response Systems A Personal Emergency Response System is an electronic device that a person with disabilities uses to get help in an emergency. For example, the system may be a portable “help” button connected to a person’s phone that is programmed to send a signal to a response center when the “help” button is activated. Trained professionals staff the response center. 126
  • 303.  Specialized Medical Equipment and Supplies  Specialized Medical Equipment and Supplies include devices, controls or appliances that allow people to do daily living activities or to help them communicate; items necessary for life support and the supplies and equipment necessary for upkeep; and durable and non-durable equipment that is not paid for by the Medicaid State Plan (Medicaid card).  Environmental Accessibility Adaptations  These are changes to a home that enable a person to function with greater independence.  Emergency Assistance  Emergency Assistance provides increased levels of any covered service in crisis situations except for Informal Respite. Emergency situations include involuntary loss of home for any reason including legal action, loss of caregiver including death of a caregiver or changes in the caregiver’s mental or physical status that makes them unable to do their duties, abuse, neglect or exploitation of the person, health and welfare conditions that pose a serious risk of immediate harm or death to the person, and significant changes in the emotional or physical condition of the person that requires more support than the current caregiver can provide.  Day Habilitation  This is used when people go to workshops to increase independence. A wider selection of options is now available under Adult day Services.  Adult Day Services (Same as those described under the IO Waiver) 127
  • 304. The Ohio Developmental Disabilities Profile (ODDP) & the Acuity Assessment (AAI)  The Ohio Developmental Disabilities Profile (ODDP) is a standardized assessment has been tested for reliability and consistency and has been designed for predictability related to needs and circumstances for waiver services. The ODDP is used to determine the funding ranges and payment amounts that will be available to an individual for the IO waiver. It assigns a score that corresponds to the person’s needs and circumstances related to waiver services, links an individual to a funding range, and determines a range of funding for an individual’s residential services. It has been designed to predictably assess the relative needs and circumstances of the individual as compared to others. The ODDP scoring methodology enables similarly situated individuals to access comparable services under the waiver on a statewide basis. The ODDP is a clinical assessment tool that captures the current circumstances of an individual and it collects a subset of information about a person’s needs and circumstances. It is NOT a comprehensive functional assessment. The ODDP must be revised periodically to continue to reflect the current needs of an individual and whenever there is a significant change in life circumstances such as a change in living arrangement, a new diagnosis or maintenance medication, a change in the person’s health status, a change in level of independence, or a change in natural supports or voluntary care-giving. 128
  • 305.  The Information gathered for the ODDP can come from a variety of sources including the individual, people who know the individual well, or written records. The information needs to be reliable and comprehensive. To assure consistency across assessors and to assure that all assessors obtain the same result for same circumstance, staff who administer the ODDP must be trained and authorized in the use of the tool by the Ohio Department of Mental Retardation and Developmental Disabilities (ODDD). The Acuity Assessment (AAI) is a standardized instrument used to assess the relative needs and circumstances of an individual compared to other adults in a non-residential setting when receiving one or more of the Adult Day waiver services. A score is determined through this assessment and is used to calculate the annual funding limitation available to an individual to access one or more of the Adult Day waiver services and for non-medical transportation services. The AAI is used to determine groupings/staff intensity ratios. Once an individual is assigned to a group, budget limitations, payment rates and the level of staff needed for Adult Day services can then be determined. It takes approximately 10-15 minutes to complete this assessment. 129
  • 306.  The informant used to complete the assessment is the person who can best report the individual’s needs and circumstances in a non-residential setting. This can be the individual his or her self, a provider of related services, a parent or other family member, a guardian, an advocate, or other appropriate persons. SSAs who have been trained in the use of the instrument, gather the information to complete the assessment then will submit the completed document to the ODDD electronically. For individuals receiving Medicaid waiver services the SSA must annually submit a request for an ICFMR level of care re-determination to the Ohio Department of DD to document the continued need for an ICF/MR level of care. Staff members who administer the AAI must also be trained and authorized in the use of the tool by the ODDD. 130
  • 307. An Overview of Determining Budgets for Waiver Services  Historically rates for waiver services were negotiated with private providers and there was no cap for the IO waivers. This created a wide variation in rates paid for like services. This is no longer the case. Following is a brief overview of how rates are established and what waiver funds are available to eligible individuals. Level One Waivers  Level One Waiver services have a rate assigned for each type of service and each year an individual can use any combination of Homemaker/Personal Care, Informal Respite, Institutional Respite, or Transportation up to a combined total of $5000.  In addition, every three years, up to $6,000 total can be spent for Personal Emergency Response Systems, Specialized Medical Equipment and Supplies and Environmental Accessibility Adaptations. The first two cannot exceed $2,000 each, but the Environmental Accessibility Adaptations can utilize the entire amount (but would leave no funds for the other two.)  Finally, every three years, starting from the individual’s initial date of enrollment, up to $8,000 can be used for emergency assistance.  Adult Day Services generates a separate dollar amount that can be used in addition to the amount allocated for other Level One waiver services. The process for determining payment for adult day services is clearly delineated in 5123:2-9-19 of the Ohio Administrative code. 131
  • 308.  Level One Summary: Annually: Up to $5,000 for Homemaker/Personal Care, Respite, and/or Transportation Every 3 Years: Up to $6,000 for Emergency Response, Medical Equipment & Supplies, and/or Environmental Adaptations Every 3 Years: Up to $8,000 for Emergency Assistance Annually: For Adult Day Services, fifteen minute unit rates and daily rates vary depending on the county cost of doing business factor and staff intensity ratios as determined by the ODDD Acuity Assessment. This is then calculated into a budget limitation amount ranging from approximately $9,000 to $30,000 per person. The transportation rate is a per mile rate determined by the county cost of doing business factor. Transportation budget limitations range from approximately $8,800-$9,600. 132
  • 309.  IO Waivers For Adult Day Services funded through the IO waiver, the rates and budget limitations are set in the same way as it is set for the Level One waiver. For other IO waiver funded services, to ensure statewide accountability and equity in the delivery of waiver services, the waiver reimbursement methodology for individuals enrolled on the IO waiver will include two basic components: a standardized assessment tool (ODDP) which will link individuals to an assigned funding range and establishment of uniform provider rates. The funding ranges and payment amounts that will be available to an individual for the IO waiver are based on the needs of each individual as measured by the Ohio Developmental Disabilities Profile (ODDP). The Acuity Assessment Instrument (AAI) is also used to determine a waiver budget amount if an adult needs out of home day services through the waiver. Each individual is assigned a funding range based on his/her ODDP score (Ohio Developmental Disabilities Profile score). When completed statewide, the ODDP allows individuals with similar needs to access comparable waiver services throughout Ohio. An Individual Service Plan is then developed. The ISP process identifies the actual services needed by the individual and is the basis for the development of a funding level based on the assigned funding range. 133
  • 310. Annual Budget Limitations for Adult Day Services  Each individual who is eligible for and who wants to receive adult day services is assigned a budget limitation. This is the funding amount that is available to a person to purchase adult day waiver services. In order to obtain this budget limitation, several steps must be completed. The AAI is used to determine the staff intensity ratio that is needed by the individual. SSAs need to obtain and review information contained in the AAI for each individual and submit this information to the ODDD. A score is then assigned by the ODDD based on the data contained in the AAI. This score will assign an individual to one of four groups that correlate with the staff intensity ratios required by the individual. These groups are called Group A, Group A-1, Group B and Group C. A staff intensity ratio is the portion of time that one direct service staff member spends with an individual. Each county also has been assigned a cost of doing business category (CODB). There are eight COBDs. Budget limitation charts are available that allow the SSA to look up the amount of funding available to an individual based on their assigned Group and the county’s COBD category. 134
  • 311.  The SSA is responsible for keeping the individual and or their guardian, when applicable, notified of the AAI score, the resulting group assignment, the related budget limitation and any changes that occur. Once an individual’s ISP is in place, the budget limitation has been determined, and service delivery has begun, billing for services begins. If an individual receives between five and seven hours of adult day services from one certified provider, the provider is to bill using a daily billing unit. If the individual receives less than five hours of service or receives five-seven hours of service from more than one provider, fifteen minute billing units are used. Charts are also available to help staff determine the rate that can be billed for non-medical transportation to access adult day services. This amount can then be calculated for inclusion in the individual budget for a person. If an individual’s team determines that an individual’s needs exceed the funding level that has been assigned through the ODDP, the team can request an administrative review of the score. This review process is per the Waiver Reimbursement Rule 5123:2-9-06. Prior authorization must be obtained in accordance with rule 5101:3-41-12 of the Administrative Code to authorize an individual funding level that exceeds the maximum value of the funding range that is determined for an individual through the use of the ODDP. 135
  • 312. 5123:2-9-11 HCBS waivers - free choice of provider. (A) Purpose The purpose of this rule is to establish procedures for individuals to choose qualified and willing providers of home and community-based services in accordance with provisions set forth in sections 5126.046 and 5123.044 of the Revised Code. This rule clarifies the department's role in assuring the free choice of provider processes are adhered to and is intended to emphasize the right of individuals to choose any qualified provider of home and community-based services. Nothing in this rule shall have the effect or shall be interpreted as limiting that choice. (B) Application (1) This rule applies to all county boards; to all persons responsible for service and support administration in accordance with section 5126.15 of the Revised Code when assisting individuals/guardians who may be eligible for services through a county board to select home and community-based service providers; and to qualified providers of home and community- based services. This rule is applicable to qualified providers of home and community-based services when these services are provided in a facility licensed by the department in accordance with section 5123.19 of the Revised Code. The requirements of this rule supersede the requirements contained in paragraphs (C)(4), (C)(5), (C)(6), (C)(7) and (G)(1)(a) of rule 5123:2- 3-05 of the Administrative Code. (2) Notwithstanding paragraph (G)(1) of this rule, the SSA shall follow the provider choice process set forth in paragraphs (H) and (I) of this rule for each service specified in an ISP, at the time of an individual’s enrollment in a home and community-based services program, annually at the time of re-determination, and at any other time the individual/guardian expresses an interest in or makes a request to choose a new, different or additional provider. (C) Definitions (1) “County board” means a county board of mental retardation and developmental disabilities established under Chapter 5126. of the Revised Code or a regional council of government comprised of two or more county boards and formed under section 5126.13 of the Revised Code. (2) “Department” means the Ohio department of mental retardation and developmental disabilities as established by section 121.02 of the Revised Code. (3) “Guardian” means a guardian appointed by the probate court under Chapter 2111. of the Revised Code. If the individual is a minor for whom no guardian has been appointed under that chapter, “guardian” means the individual’s parents. If no guardians have been appointed for a minor and the minor is in the legal or permanent custody of a government agency or person other than the minor’s natural or adoptive parents, “guardian” means that government agency or person. “Guardian” also includes an agency under contract with the department for the provision of protective service under sections 5123.55 to 5123.59 of the Revised Code. (4) “Home and community-based services” means medicaid funded home and community-based services provided under a medicaid component the department administers pursuant to section 5111.871 of the Revised Code, as described and modified through rules promulgated by ODJFS and the department. (5) “Individual” means a person with mental retardation or other developmental disability who is eligible to receive home and community-based services as an alternative to receiving services in an intermediate care facility for the mentally retarded under the applicable waiver. A guardian may take any action on behalf of the individual, make choices for an individual, or may receive notice on behalf of an individual to the extent permitted by applicable law.
  • 313. (6) “ISP” means the individual service plan, a written description of the services, supports and activities to be provided to an individual. (7) “ODJFS” means the Ohio department of job and family services as established by section 121.02 of the Revised Code. (8) “Qualified provider” means an agency or individual certified by the department to provide home and community-based services and who has a medicaid agreement with ODJFS that covers the services. (9) “Service and support administration” means the duties performed by individuals employed or under contract with a county board to provide service and support administration as identified in section 5126.15 of the Revised Code. (10) “SSA” means service and support administrators who are certified in accordance with rules adopted by the department under Chapter 5123:2-5 of the Administrative Code and who provides the functions of service and support administration. (11) “Willing provider” means a qualified provider who, in accordance with the provider choice process contained in paragraphs (H) and (I) of this rule, agrees to provide home and community- based services. When determining willingness to provide federally funded waiver services to an individual, neither the provider nor any person acting on behalf of the provider shall discriminate, by reason of race, color, religion, sex, age, handicap, national origin or ancestry, against any individual eligible to receive home and community-based services. (D) Decision-making responsibility (1) An individual shall be responsible for making all decisions regarding free choice of providers unless the individual has a guardian, in which case the guardian shall be responsible for making such decisions. (2) Individuals, including those with guardians, have the right to participate in decisions regarding the free choice of providers. (3) An individual who does not have a guardian or an individual's guardian may designate another person, including a member of the individual's family, to participate in the process of making decisions regarding free choice of providers in accordance with paragraph (P) of rule 5123:2-1-11 of the Administrative Code. (E) Provider lists (1) The department shall create and maintain on its website lists of all providers of home and community-based services who meet the requirements of paragraph (C)(8) of this rule. The department shall update the list at least monthly. Providers shall update their information at the frequency and in the manner determined by the department. (2) The SSA shall utilize the lists of providers created by the department to assist the individual in identifying potential providers, in accordance with paragraph (H) of this rule. (F) Notification process (1) Annually, the county board shall provide to each individual, guardian and/or person designated by the individual the following information in writing and in a form and manner the individual can understand: (a) A description of the individual's right to choose any qualified provider from among all those available statewide and not limited to those who provide services currently in a given county. (b) Procedures the SSA will follow, in accordance with paragraph (H) of this rule, to assist an individual/guardian in the selection of providers of home and community-based services. The procedures shall be based upon written guidance developed and approved by the department and
  • 314. ODJFS and shall be made available to each individual without modification of the guidance provided. (c) A description of information available on the department’s website pertaining to providers of home and community-based services and instructions to access the information. (d) A description of the individual’s hearing rights pursuant to section 5101.35 of the Revised Code that are contained in a handbook developed and approved by the department and ODJFS. (2) The county board shall maintain documentation to verify compliance with the requirements of paragraph (F)(1) of this rule, including the list of individuals contacted, the date(s) on which the notification occurred, and the text of the notification. (G) Provider choice options available to an individual (1) When an individual/guardian identifies and/or chooses a qualified provider who is also willing to provide home and community-based services to the individual, the SSA shall honor the individual’s/guardian’s request and shall not utilize the provider selection process set forth in paragraphs (H) and (I) of this rule. The SSA shall document this selection. (2) An individual/guardian may choose homemaker/personal care services providers under the home and community-based services waivers through two options: (a) If an individual currently resides in a facility licensed by the department in accordance with section 5123.19 of the Revised Code in which the operator is certified to provide home and community-based services, or desires to reside in a licensed facility in the future, the individual/guardian is choosing both the place of residence and the homemaker/personal care services provider. To change providers of homemaker/personal care services, with assistance provided by the SSA, the individual/guardian shall: (i) Obtain the agreement of the licensee to permit another provider of homemaker/personal care services to provide services within the licensed home; or (ii) Relocate from the licensed home. (b) If the individual resides in any other setting in which it is permissible to receive home and community-based services, the individual/guardian may choose any qualified and willing provider using the processes described in this rule. (H) Responsibilities of the county board in the choice process Except as provided in paragraph (G)(1) of this rule, the county board shall adhere to 5123:2-9-11 4 the following processes to assist an individual/guardian to choose qualified providers of home and community-based services: (1) The county board shall inform the individual/guardian of the department's website containing the list of providers qualified to provide home and community-based services. (2) The county board shall assist the individual/guardian to access the website, if assistance is needed. (3) The county board shall assist the individual/guardian, if requested by the individual/guardian, to obtain outcomes of past internal and/or external monitoring reviews of home and community- based services provided. (4) Following the individual's/guardian's review of the list of qualified providers and identification of the individual's/ guardian's preliminary consideration of a qualified provider, the county board shall contact the provider(s) selected preliminarily by the individual to determine the provider’s interest in providing services to the individual. This contact shall be made within five working days following the county board’s receipt of the preliminary provider selections by
  • 315. the individual/guardian, unless the individual/ guardian or a person designated by the individual/guardian wishes to contact the provider(s) directly. (I) Responsibilities of the SSA, provider, and individual in the choice process (1) If at any time during the process protected health information is requested, the SSA shall obtain a HIPAA-compliant release of information from the individual/guardian before such information shall be provided. (2) At the time of the initial contact with the provider(s) who is the preliminary choice of the individual, the SSA shall describe the services and supports desired by the individual and the anticipated frequency, duration, and location of the services to be delivered. (3) The provider shall inform the SSA of the provider’s preliminary determination to proceed with the selection process within two working days following this initial contact by the SSA. (4) In each instance when the provider has indicated a preliminary interest in providing waiver services to the individual, the SSA shall assure that the individual/guardian is aware of his/her opportunity to meet with the provider. If the individual/guardian indicates the desire for this meeting, if requested, the SSA shall assist the individual/guardian to meet with the provider at a place and time acceptable to both parties. (5) When an agency provider has agreed to be available for consideration by an individual/guardian, if requested by the individual/guardian, the agency shall make available: (a) Description of all home and community-based services the provider is certified to provide; (b) Qualifications of the chief executive officer of the agency; (c) Written policies and procedures related to the provision of the home and community-based services desired by the individual; and (d) Additional information the provider elects to make available, including outcomes of past internal and/or external monitoring reviews of the home and community-based services provided. (6) When an individual provider has agreed to be available for consideration by an individual/guardian, if requested by the individual/guardian, the provider shall make available: (a) A description of all home and community-based services the provider is certified to provide; and (b) Additional information the provider considers to be relevant, including past experiences providing services and supports. (7) Unless the individual/guardian does not desire to have a meeting, within three working days following the meeting with the individual/guardian, the provider shall inform the county board whether the provider is interested in pursuing the referral. (8) If the provider is not interested in pursuing the referral, the county board shall notify the individual/guardian within two working days and resume the provider choice process with an alternative provider. (9) Nothing in this rule shall be construed to prohibit an individual/guardian from engaging simultaneously in the provider selection process with more than one provider.
  • 316. (10) If the provider is interested in pursuing the referral, the county board shall forward information to the provider sufficient to enable the provider to determine whether he/she can provide the desired waiver services and meet the health and welfare needs of the individual within the standards governing payment for the home and community-based services. This information shall be released within three working days following the county board’s receipt of an indication of interest by the provider and only upon consent from the individual/guardian. (a) When the potential provider indicates that supplemental information and/or assessments are needed to enable the provider to evaluate the service delivery strategy that will best support the individual and reach a conclusion concerning the provider’s willingness to serve the individual, based upon the reasonableness of the request, the individual/guardian shall determine the type and extent of supplemental information to be provided. (b) The county board shall obtain the individual’s consent to obtain the supplemental information. When consent is obtained, the county board shall initiate activities needed to obtain the information. In no instance shall the county board forward the supplemental material to the provider more than twenty working days following the date on which the individual’s/guardian’s consent was obtained. (11) The potential provider shall inform the individual/guardian and the county board of the provider’s determination to serve or not to serve the individual within five working days following receipt of the information described in paragraph (I)(10) of this rule or receipt of the supplemental information authorized for release, as described in paragraphs (I)(10)(a) and (I)(10)(b) of this rule, whichever is the later date. This communication shall be made in a form and manner the individual can understand. The notification also shall be made in writing to the county board. (12) Any timelines contained in paragraphs (H) and/or (I) of this rule may be extended with the written consent of the individual/guardian, county board and the involved waiver service provider. (13) The county board shall utilize all elements of the checklist described in appendix A to this rule to document compliance with the activities and timelines contained in paragraphs (G) to (I) of this rule. The checklist shall be completed in each instance when an individual engages in the free choice of a provider process, as described in paragraph (B)(2) of this rule. The county board shall retain completed checklists as a part of the individual’s service record. (J) Initiating services (1) The SSA shall assist the individual in making arrangements for initiation of home and community-based services with the chosen provider. (2) The SSA shall document the chosen provider and the type, frequency, duration, and location of home and community-based services on the individual's ISP. The ISP shall indicate ratios at which services are to be delivered when individuals share waiver services. (K) Due process and appeal rights for individuals (1) Any recipient or applicant for home and community-based services may utilize the process set forth in section 5101.35 of the Revised Code, in accordance with division-level designation 5101:6 of the Administrative Code, for any purpose authorized by that statute and the rules implementing the statute, including being denied the choice of a provider who is qualified and willing to provide a home and community-based service. The process set forth in section 5101.35 of the Revised Code is available only to applicants, recipients, and their lawfully authorized representatives. (2) Providers shall not utilize or attempt to utilize the process set forth in section
  • 317. 5101.35 of the Revised Code. Providers shall not appeal or pursue any other legal challenge to a decision resulting from the process set forth in section 5101.35 of the Revised Code. (3) The county board shall inform the individual or guardian, in writing and in a manner the individual can understand, of the individual's right to request a hearing in accordance with division-level designation 5101:6 of the Administrative Code. (4) The county board shall immediately implement any final state hearing decision or administrative appeal decision relative to free choice of provider for HCBS waiver services issued by ODJFS, unless a court of competent jurisdiction modifies such a decision as the result of an appeal by the medicaid applicant or recipient. (L) Department training and oversight (1) The department shall provide periodic training and assistance to familiarize individuals with the rights and responsibilities contained in this rule and to enable county boards and providers of home and community-based services to meet their respective obligations when implementing the rule. (2) The department shall assure the county board's compliance with this rule and initiate appropriate remedial action, when warranted, in accordance with sections 5123.044 and 5126.055 of the Revised Code. (3) The department shall investigate or cause an investigation of complaints when it is alleged by the individual/guardian that the individual is being denied free choice of a provider of home and community-based services. On receipt of these complaints, the department shall do either of the following: (a) Conduct an independent review or investigation of the complaint in accordance with section 5123.14 of the Revised Code; (b) Request that an independent review or investigation of the complaint be conducted by a county board that is not implicated in the report, a regional council of government, or any other entity authorized to conduct such investigations. (4) The department shall conduct an individual quality assurance review, at the frequency determined by the department, in accordance with rule 5123:2-12-01 of the Administrative Code to verify through an interview process with the individual, guardian and involved family members the extent of their participation in the choice of a provider. (5) The department shall utilize the accreditation process in accordance with rule 5123:2-4-01 of the Administrative Code to monitor county board compliance with requirements of this rule. (M) Assistance to parties interested in becoming providers (1) The county board shall refer all parties interested in becoming a provider of home and community-based services to the department's website. (2) The department shall include on the website a description of the entire certification process including an application for certification as a home and community-based service provider. (3) The department shall assist all parties interested in becoming providers. (4) The county board shall not require current or potential providers of home and community- based services to meet standards and/or training expectations that exceed or are separate from the provider certification requirements adopted by the department and contained in the Ohio Administrative Code.
  • 318. Universal Precautions 137
  • 319. Bloodborne Pathogens  What is a bloodborne pathogen?  A bloodborne pathogen is any organism that is present in human blood that can cause disease. Some of the most common bloodborne pathogens are HIV (Human Immunodeficiency Virus) that causes AIDS, Hepatitis B Virus (HBV) that causes liver disease and Hepatitis C Virus (HBC) that also causes liver disease.  Why do you need to know about bloodborne pathogens?  You need to know how to prevent yourself and others from acquiring bloodborne illness, what diseases are spread through contact with contaminated blood or other potentially infectious materials, and what type of contact does and does not pose a threat of illness from a bloodborne pathogen. 138
  • 320.  What diseases are spread through bloodborne pathogens?  HBV (Hepatitis B Virus)  HCV (Hepatitis C Virus)  HIV (Human Immunodeficiency Virus)  Syphilis  Malaria  Many Others  For health care workers in the United States, the top three are those of greatest concern. 139
  • 321. Most common bloodborne diseases  Hepatitis B  Hepatitis B is a liver disease caused by a virus that can be a mild to severe illness. It can be short-term or a serious long-term illness that can lead to liver disease and liver cancer. The Hepatitis B vaccine can prevent you from contracting Hepatitis B.  Hepatitis B can be acquired by contact with infected blood, semen and other body fluids, having sex with an infected person, using contaminated needles, or it can be passed from an infected mother to her newborn.  The Hepatitis B virus can survive outside of the body for at least 7 days and still be capable of causing infection.  Hepatitis C  Hepatitis C is a liver disease caused by the Hepatitis C virus. This can result in an acute or chronic illness. Hepatitis C can lead to cirrhosis of the liver and liver cancer.  Hepatitis can be acquired by contact with the blood of an infected person. This occurs most often through use of contaminated needles.  There is no vaccine or cure for hepatitis C. 140
  • 322.  HIV  HIV (Human Immunodeficiency Virus) causes AIDS. HIV attacks the immune system and destroys a type of white blood cell that the immune system needs to fight disease.  HIV is most often acquired through sexual contact, by injection into a vein (injected drug use), through mucous membranes, through contact of the virus into cuts and sores and from infected mothers passing it to their child before or during birth or through breast-feeding.  Healthcare workers have become infected with HIV by being stuck with needles contaminated with HIV- infected blood or by coming into contact with infected blood such as being splashed with blood or a contaminated body fluid into an open cut or being splashed in the eyes or nose. HIV is rarely contracted by health care workers through work activities.  The HIV virus dies very quickly outside of the body. There is no vaccine for HIV.  Following standard precautions (formerly called universal precautions) is the best way to prevent contact with infected blood or other potentially infectious materials. 141
  • 323. Symptoms of Disease  Hepatitis B & C Only blood tests can determine if you are infected. Symptoms may or may not be present. Symptoms may include:  fever  jaundice (yellow skin/eyes)  fatigue  loss of appetite  nausea  vomiting  dark urine  clay-colored stools  joint pain  abdominal discomfort or pain  HIV The only way to know if you are infected with HIV is to be tested. There may be no symptoms for 10 years or more after exposure. 142
  • 324. the ABC's of Hepatitis Hepatitis Facts: Worldwide Snapshot Hepatitis A Virus (HAV) Infection: • In 2005, there were an estimated 42,000 Hepatitis A infections. • Hepatitis A is the cause of 30 days of missed work and approximately $2,600 in lost wages each year. • Medical care alone for hepatitis A can cost $2,800 for each hospitalized case. • Approximately 100 Americans die each year from Hepatitis A. • The annual cost associated with Hepatitis A is estimated at $200 million in the U.S. Hepatitis B Virus (HBV) Infection: • HBV is 100 times more infectious than HIV, the virus that can cause AIDS. • Hepatitis B vaccine can provide immunity in over 95% of young healthy adults. • An estimated 350 million people are infected globally with HBV. • Approximately 1 million die each year from complications from HBV. • 70% of new cases occur among people between the ages of 15-39. • Every year 5,000 Americans die from cirrhosis and 1,000 from liver cancer due to HBV infections. • 22,000 pregnant women in the U.S. are infected with HBV and can transmit it to their newborns. • HBV can live on a dry surface for at least 7 days. Hepatitis C Virus (HCV) Infection: • 3% of the world's population is infected with HCV, or approximately 170 million people. 90% of HCV patients who are in need of treatment today cannot afford it. • 80% of affected people can become chronically infected and risk serious long-term clinical disease including cirrhosis and liver cancer. • 8 countries – Bolivia, Burundi, Cameroon, Egypt, Guinea, Mongolia, Rwanda, and Tanzania – have an HCV prevalence above 10%. • 7 countries/areas – Gabon, Libya, Papua New Guinea, Suriname, Vietnam, Zaire, and the United Nations Relief and Works Agency for Palestine Refugees in the Near East – have an HCV prevalence between 5 and 10%. • In developing countries, the primary sources of HCV infection include transfusion of blood or blood products from unscreened donors; transfusion of blood products that have not undergone viral inactivation; parenteral exposure to blood through the use of contaminated or adequately sterilized instruments and needles used in medical and dental procedures; the use of unsterilized objects for rituals (e.g. circumcision, scarification), traditional medicine (e.g. blood-letting) or other activities that break the skin (e.g. tattooing, ear or body-piercing); and intravenous drug use. Household or sexual contacts of HCV-infected persons are marginally at risk. • In developed countries, persons at risk of HCV infection include recipients of previously unscreened blood, blood products, and organs; intravenous drug users; individuals undergoing chronic hemodialysis; health care workers with percutaneous exposure from contaminated needles or sharps; persons who participate in high-risk sexual practices; and persons undergoing medical or dental procedures with
  • 325. inadequately sterilized instruments. Sexual and household transmission are uncommon. Basics: Hepatitis A (HAV) What is Hepatitis A? Hepatitis A is one of many hepatitis viruses causing inflammation of the liver. Who Is At Risk? Hepatitis A can affect anyone. In the U. S., hepatitis A can occur in situations ranging from isolated cases of disease to widespread epidemics. Hepatitis A is one of the most frequently reported vaccine-preventable diseases in the U. S. Some of the higher-risk groups are: travelers to countries with high rates of hepatitis A, men who have sex with men, injecting- drug users, people with clotting-factor disorders, people with chronic liver disease, and children living in communities with high rates of disease. Symptoms Children with hepatitis A usually have no symptoms. Adults may become quite ill suddenly, experiencing jaundice, fatigue, nausea, vomiting, abdominal pain, dark urine/light stools, and fever. The incubation period averages 30 days. However, an infected individual can transmit the virus to others as early as two weeks before symptoms appear. Symptoms will disappear over a 6 -12-month period until complete recovery occurs. Diagnosis Your doctor can't single out Hepatitis A from other types of viral hepatitis based upon your physical symptoms alone. The only way to diagnose HAV is to do a blood test seeking to find IgM antibodies. In most people, these antibodies become detectable 5-10 days before the onset of symptoms and can persist for up to 6 months after infection. How Does it Spread? Hepatitis A is most often spread from person to person through situations such as these: • Food preparers who are infected can pass the virus on if they do not wash their hands with soap and water after having a bowel movement, especially when they prepare uncooked foods. • Fecal contamination of food and water. • Anal/oral contact, by putting something in the mouth that had been contaminated with infected feces. • Diaper changing tables, if not cleaned properly or changed after each use, may facilitate the spread of HAV. • Fecal residue may remain on the hands of people changing soiled diapers. • Eating raw or partially cooked shellfish contaminated with HAV. Treatment No specific treatment is necessary for hepatitis A. Disease Outcome Hepatitis A will clear up on its own in a few weeks or months with no serious after effects. Once recovered, an individual is then immune for life to HAV through the presence of the IgG antibody . About 1 in 100 HAV sufferers may experience a sudden and severe (i.e., "fulminant") infection.
  • 326. Preventing HAV Infection HAV infection is preventable! Here's how you do it: • Get an immune globulin (IG) shot. An IG shot can provide temporary immunity to the virus for 2 to 3 months when given prior to exposure to HAV or within 2 weeks after exposure. • Ask for the HAV vaccine. The HAV vaccine, made from inactive hepatitis A virus (synthetic), is highly effective in preventing the hepatitis A infection. However, its safety when given during pregnancy has not been determined. Check with your doctor to determine how many shots you need. The vaccine provides protection for about four weeks after the first injection; a second injection protects you longer, possibly up to 20 years. Who should have the HAV vaccine? • Users of illegal drugs. • Individuals who have chronic liver disease or blood clotting disorders (e.g., hemophilia). • Those who have close physical contact with people who live in areas with poor sanitary conditions. • Those who travel or work in developing countries. This includes all countries except northern and western Europe, Japan, Australia, New Zealand, and North America except Mexico. • Men who have sex with other men. • Children in populations that have repeated epidemics of hepatitis A (e.g., Alaska natives, American Indians, and certain closed religious communities). • People who have chronic lever disease. Basics: Hepatitis B (HBV) What is Hepatitis B? Hepatitis B is an inflammatory liver disease caused by the hepatitis B virus (HBV) that results in liver cell damage. This damage can lead to scarring of the liver (cirrhosis) and increased risk of liver cancer in some people. About 80,000 Americans were newly infected with HBV in 1999. Who Is At Risk? One out of every 20 people in the U. S. will become infected with HBV sometime during their lives. Your risk is higher if you: • Have sex with someone infected with HBV. • Have sex with more than one partner. • Are a man and have sex with a man. • Live in the same house with someone who has chronic HBV infection. • Have a job that involves contact with human blood. • Inject illegal substances/drugs. Have hemophilia. • Travel to areas where HBV is common (this includes all countries except northern and western Europe, Japan, Australia, New Zealand, and North America except Mexico).
  • 327. Symptoms Many people with newly acquired hepatitis B have no symptoms at all, or they may be very mild and flu-like – loss of appetite, nausea, fatigue, muscle or joint aches, mild fever, and possibly jaundice (yellowish tinge to the skin). The only way to know if you are currently infected with HBV – or if you still carry the virus – is to ask your doctor to do a specific blood test for hepatitis B (it may not be included in a routine blood test). The test may not show positive during the incubation period (45-180 days). Diagnosis There are three standard blood tests for HBV: • HBsAG (hepatitis B surface antigen): When this test is positive or reactive, you are infected with HBV and can pass it on to others. • Anti-HBc (antibody to hepatitis B core antigen): When you test positive, it means you are currently infected with HBV or have been infected at some point in the past. • Anti-HBs (antibody to HbsAg): When this test is positive, it means that you are immune to hepatitis B either as a result of having had the disease or from having been given the vaccine. How Does It Spread? HBV is found in blood, seminal fluid, and vaginal secretions. The risk of transmission is increased in these situations: • Sexual contact with an infected person. • Living in the same household with an infected individual. • Contact with infected blood or seminal fluid and contaminated needles, including tattoo/body piercing instruments. • HBV-infected mother to her newborn at time of delivery (prenatal blood tests for HBV should always be done if there is a suspicion of HBV). Treating HBV There are two medications to treat chronic HBV – Interferon (IFN) and Lamivudine. Less than 50% of patients with chronic HBV are candidates for interferon therapy. Initially, 40% of HBV patients who are treated with IFN will respond. However, some will relapse when the treatment is stopped. Overall, about 35% of the eligible patients will benefit. IFN treatments may have a number of side effects, including flu-like symptoms, headache, nausea, vomiting, loss of appetite, depression, diarrhea, fatigue, and thinning hair. Interferon may lower the production of white blood cells and platelets by depressing the bone marrow. Thus, blood tests are needed to monitor blood cells, platelets, and liver enzymes. The response to oral Lamivudine, given for at least one year, may be somewhat lower. In addition, those who are chronically infected with HBV should be vaccinated against hepatitis A. There is no treatment for acute Hepatitis B. Disease Outcome - Either you develop immunity to HBV . . . 95% of adults infected develop antibodies and recover spontaneously within six months. Upon recovery, they develop immunity to the virus and they are not infectious to others. Blood tests will always test positive for the HBV antibody. Blood banks will not accept donations of blood from HBV-immune people. - OR you become chronically infected. About 5% of the time, the virus does not clear the body within six months. If so, a person is considered a carrier – or chronically infected.
  • 328. Chronically infected people may or may not show outward signs or symptoms. The HBV virus remains in blood and body fluids, and can infect others. Preventing HBV Infection - Things you can do: • Practice safe sex (use latex condoms). • Don't share anything that could have an infected person's blood on it, i.e. toothbrushes, razors, nail clippers, body piercing instruments. • Don't share drug needles, cocaine straws or any drug paraphernalia. • Cover all sores and rashes and do not touch them. • Clean up any blood spills with a 10% solution of household bleach. Infected persons should not pre-chew food for babies. • If exposed to hepatitis B, get an HBIG (hepatitis B immune globulin) injection within 14 days following exposure. Get an HBV vaccination. Here's who should be vaccinated without fail: • All individuals living in the same household with a chronically infected individual. • All newborns and children up to the age of 19. • Those who are in positions where they are exposed to blood at work, through drug use, or who have multiple sex partners. • Individuals with hepatitis C and other chronic liver diseases. Vaccination provides protection for more than 15 years, and possibly a lifetime. HBV booster shots are not recommended. Newborn Vaccination All newborns should get three vaccination doses of the HBV vaccine the first within 12 hours of birth, the second at 1-2 months, and the third at 6 months. In addition, babies born to infected mothers should receive a shot called H-BIG within 12 hours of delivery. Without the above intervention, 90% of babies born to infected mothers will become chronically infected, reducing their life expectancies. A few months after the last dose is given, the doctor will test to see if the baby is making HBV antibodies. If so, the baby will be safe from hepatitis B for life. HBV-infected mothers may nurse their babies. Basics: Hepatitis C (HCV) What Is Hepatitis C ? Hepatitis C virus (HCV) causes inflammation of the liver. A national U. S. survey found that 1.8 percent of Americans – about 3.9 million – have been infected with HCV, of whom most about 2.7 million – are chronically infected with HCV, with many showing no signs or symptoms. The good news is that, in 1995, a reliable antibody test for HCV was finally implemented nationwide. About 41,000 new cases occurred in 1998 with 15-25% recovering spontaneously. Hepatitis C is a slow-progressing disease that may take 10-40 years to cause serious liver damage in some people. Who Is At Risk? Since about four million Americans are infected with HCV and most don't know it, you should have a blood test for hepatitis C whether you feel sick or not. About one in ten
  • 329. people infected with HCV have had no identifiable exposure to HCV. That said, here are several obvious risk factors: • Intravenous (IV) drug users – even IV use in the distant past. • Those with multiple sex partners or sex with partners who have other sexually transmitted diseases. • Those with tattoos or body piercing done with unsterile instruments. Anyone who has had a blood transfusion prior to 1992 or clotting factors produced before 1987. • Hemodialysis (diabetes) patients. • The potential for transmission from an HCV-infected mother to her newborn appears to be about 5%. How Does it Spread? • Injection drug use is the primary risk for HCV infection. Injection drug use accounts for about 60% of all new cases of hepatitis C and is a major risk factor for infection with hepatitis B virus. Among frequent drug users, 50-80% are infected by HCV within the first 12 months of beginning injecting. • Straws shared in snorting drugs are also a potential source of infection of HCV. The hepatitis C virus is found mainly in blood. • HCV is not spread through kissing or casual contact. • In relationships where there is one steady partner, sexual transmission is exceedingly unusual, less than 3% over decades in sexually active couples. Transmission from HCV RNA negative individuals has never been reported. Sexual transmission may be more common among those with multiple sex partners or where there is a history of sexually transmitted disease but this remains controversial and unconfirmed. • HCV may be transmitted by using razors, needles, toothbrushes, nail files, a barber's scissors, tattooing equipment, body piercing or acupuncture needles if these items are contaminated by blood of an infected person. • Healthcare workers have a 2% risk of acquiring HCV after a needle stick contaminated with HCV-positive blood. • There is no evidence indicating that HCV is transmitted through breast milk. • The current transmission rate through blood transfusions is estimated at less than 1 per 1,000,000 units transfused. Symptoms Most people who are infected with the HCV do not have symptoms and are leading normal lives. If symptoms are present, they may be very mild and flu-like – nausea, fatigue, loss of appetite, fever, headaches, and abdominal pain. Most people do not have jaundice although jaundice can sometimes occur along with dark urine. The incubation period varies from 2-26 weeks. Liver enzyme tests may range from being elevated to being normal for weeks to as long as a year. The virus is in the blood and may be causing liver cell damage, and the infected person can transmit the disease to others. Diagnosis Test for HCV antibodies: HCV infection can be determined by a simple and specific blood test that detects antibodies against HCV. The current enzyme immunoassay test (EIA) that detects anti-HCV has a sensitivity of about 95% in chronic HCV. HCV infection may be identified by anti-HCV testing in approximately 80% of people as early as five weeks after exposure. This test is not a part of a routine physical examination, and people must ask
  • 330. their doctor for a hepatitis C antibody test. (Note: The antibody itself does not provide immunity, and the test does not distinguish between acute or chronic infection.) If the initial test is positive, it test should be repeated to confirm the diagnosis (and exclude possible laboratory error). If the initial test is negative, but the infection could have occurred within the last six months and HCV is suspected, antibody levels may not be high enough yet to be detectable (antibodies may not be present in the first 4 weeks of infection in about 30% of patients) or you may lack immune response. Under these circumstances, ask you doctor about repeating the test and about alternative test methods. Test liver enzyme levels: If you may already have chronic infection, your doctor will test the levels of two liver enzymes. These are alanine aminotransferease (ALT) and aspartate aminotransferease (AST). Both are released when liver cells are injured or die. Elevated ALT and AST levels may appear and disappear throughout the course of the HCV infection. If the liver enzyme levels are normal with chronic HCV, they should be re-checked several times over a 6 - 12 month period. If the liver enzyme levels remain normal, your doctor may check them less frequently, such as once a year. Treating HCV • There are three types of interferon, plus a combination of interferon and Ribavirin, used to treat hepatitis C. Blood tests and liver biopsy findings may determine the need for treatment. • Interferon must be given by injection, and may have a number of side effects, including flu-like symptoms – headaches, fever, fatigue, loss of appetite, nausea, vomiting, and thinning of hair. • Ribavirin, given by mouth, can have additional side effects including depression, severe anemia and especially birth defects. Women or the male partners of women, who are pregnant or who are planning pregnancy, should not take Ribavirin. Pregnancy should not be attempted until six months after treatment is ended. Ribavirin may also interfere with the production of red blood cells and platelets by depressing bone marrow. Patients should be monitored frequently. • While 50-60% of patients respond to treatment initially, sustained response occurs in up to 40%. • Treatment of children with HCV is under investigation. • Researchers are re-examining when treatment should begin, for how long it should continue, and its effectiveness. • Many pharmaceutical companies and NIH are conducting research to find more effective treatments and cures. • Currently, almost 1/2 of all liver transplants in the US are performed for end-stage hepatitis C. However, re-infection of the transplanted liver by the virus usually occurs and may require a second transplant. • Try to maintain as normal a life as possible, eating a well-balanced diet, exercising and keeping a positive attitude. Avoid depressing or overwhelming tasks and learn how to pace yourself. Rest when you feel tired. Plan physically exhausting tasks in the morning when your energy level is at its peak. Disease Outcomes Between 20- 30 percent of HCV sufferers are able to have a sustained viral response with proper treatment. Between 70 80% of the HVC infections reported each year become classified as chronic. Chronic HCV refers to infections that do not clear up within 6 months after the acute infection. Within the chronically infected group, about 20% go on to develop cirrhosis (scarring of the liver). Of this group, 25% may develop liver failure, even though this may take 30-40 years. Cirrhosis slows the blood flow through the liver and causes
  • 331. increased pressure in the vein that carries blood from the stomach and the intestines to the liver. As a result, varicose veins (e.g., "varices") may develop in the stomach and esophagus. Without warning these large veins can break causing a person to vomit blood or have black, tarry stools. An estimated 8,000-10,000 deaths occur each year resulting from the complications of HCV. Preventing HCV Infection • There is NO vaccine to prevent HCV. Vaccines for Hepatitis A and B do not provide immunity against hepatitis C. There are various genotypes of HCV and the virus undergoes mutations making it difficult to develop a vaccine. • Avoid handling anything that may have the blood of an infected person on it, such as razors, scissors, toothbrushes, nail clippers or files, tampons or sanitary napkins, etc. Detergent and a 10% solution of household bleach is believed to kill the virus. • Don' t share drug needles, cocaine straws or any drug paraphernalia. • Practice safe sex (use latex condoms). • Notify your physician and dentist that you have hepatitis . • Get vaccinated against hepatitis A and B. • Those infected with hepatitis C should not drink alcohol, as it accelerates the liver damage.
  • 332. Hepatitis B General Information Who is at risk? Although anyone can get hepatitis B, some people are at greater risk, such as those who: ■ Have sexual contact with an infected person ■ Have multiple sex partners ■ Have a sexually transmitted disease ■ Are men who have sexual contact with other men ■ Inject drugs or share needles, syringes, or other drug equipment ■ Live with a person who has chronic hepatitis B ■ Are infants born to infected mothers ■ Are exposed to blood on the job ■ Are hemodialysis patients What is hepatitis? “Hepatitis” means inflammation of the liver. Hepatitis is most often caused by one of several viruses, such as hepatitis A virus, hepatitis B virus, or hepatitis C virus. Toxins, bacterial infections, certain drugs, other diseases, and heavy alcohol use can also cause hepatitis. What is hepatitis B? Hepatitis B is a contagious liver disease that results from infection with the hepatitis B virus. It can range in severity from a mild illness lasting a few weeks to a serious, lifelong illness. Hepatitis B can be either “acute” or “chronic”. Acute hepatitis B virus infection is a short-term illness that occurs within the first 6 months after someone is exposed to the hepatitis B virus. Acute infection can—but does not always—lead to chronic infection. Chronic hepatitis B virus infection is a long-term illness that occurs when the hepatitis B virus remains in a person’s body. The best way to prevent hepatitis B is by getting vaccinated. How common is hepatitis B in the United States? The number of acute hepatitis B virus infections has been declining each year, with an estimated 46,000 new infections in 2006. Many experts believe this decline is a result of widespread vaccination of children. However, up to 1.4 million people may have chronic hepatitis B, many of whom are unaware of their infection. How is hepatitis B spread? Hepatitis B is usually spread when blood, semen, or another body fluid from a person infected with the hepatitis B virus enters the body of someone who is not infected. This can happen through sexual contact with an infected person or sharing needles, syringes, or other drug-injection equipment. Hepatitis B can also be passed from an infected mother to her baby at birth. Hepatitis B is not spread through breastfeeding, sharing eating utensils, hugging, kissing, holding hands, coughing, or sneezing. Unlike some forms of hepatitis, hepatitis B is not spread by contaminated food or water. Can hepatitis B be spread through sex? Yes. In the United States, hepatitis B is most commonly spread through sexual contact. The hepatitis B virus is 50–100 times more infectious than HIV and can be passed through the exchange of body fluids, such as semen, vaginal fluids, and blood.
  • 333. - Who should get vaccinated against hepatitis B? ■ Anyone having sex with an infected partner ■ People with multiple sex partners ■ Anyone with a sexually transmitted disease ■ Men who have sexual contact with other men ■ Users of injection drugs ■ People who live with someone who is infected ■ People with chronic liver disease, end stage renal disease, or HIV infection ■ Healthcare and public safety workers exposed to blood ■ Residents or staff of facilities for developmentally disabled persons ■ Travelers to certain countries ■ Infants or children younger than 19 who have not been vaccinated ■ Anyone who wants to be protected from hepatitis B What are the symptoms of acute hepatitis B? Not everyone has symptoms with acute hepatitis B, especially young children. Most adults have symptoms that appear within 3 months of exposure. Symptoms can last from a few weeks to several months and include: ■ Fever ■ Fatigue ■ Loss of appetite ■ Nausea ■ Vomiting ■ Abdominal pain ■ Dark urine ■ Clay-colored bowel movements ■ Joint pain ■ Jaundice What are the symptoms of chronic hepatitis B? Many people with chronic hepatitis B remain symptom free for up to 30 years, but others experience ongoing symptoms similar to those of acute hepatitis B. Chronic hepatitis B is a serious disease that can result in long-term health problems. How is hepatitis B diagnosed and treated? Doctors diagnose the infection using one or more blood tests. There is no medication available to treat acute hepatitis B, so doctors usually recommend rest, adequate nutrition, and fluids. People with chronic hepatitis B virus infection should be monitored regularly for signs of liver disease, and some people benefit from treatment with specific medications. How serious is chronic hepatitis B? Over time, approximately 15%–25% of people with chronic hepatitis B develop serious liver problems, including liver damage, cirrhosis, liver failure and liver cancer. Every year, up to 4,000 people in the United States and more than 600,000 people worldwide die from hepatitis B- related liver disease. Can hepatitis B be prevented? Yes. The best way to prevent hepatitis B is by getting vaccinated. For adults, the hepatitis B vaccine series is usually given as 3 shots during a 6-month period. The entire series is needed for long-term protection. However, once a person has been infected with the hepatitis B virus, the vaccine does not provide protection against the disease. For more information Talk to your health professional, call your health department, or visit www.cdc.gov/hepatitis Department of HealtH & Human ServiceS Centers for Disease Control and Prevention Division of Viral Hepatitis www.cdc.gov/hepatitis
  • 334. What I need to know about Hepatitis Cabout Hepatitis C NATIONAL INSTITUTES OF HEALTH National Digestive Diseases Information Clearinghouse U.S. Department of Health and Human Services
  • 335. What I need to know about Hepatitis C NATIONAL INSTITUTES OF HEALTH National Digestive Diseases Information Clearinghouse
  • 336. 16 Contents What is hepatitis C? ................................................ 1 What causes hepatitis C?........................................ 1 How could I get hepatitis C?.................................. 2 Could I get hepatitis C from a blood transfusion?................................................ 3 What are the symptoms? ........................................ 4 What are the tests for hepatitis C? ........................ 5 How is hepatitis C treated? .................................... 6 How can I protect myself?...................................... 7 For More Information ............................................ 8 More in the Series ................................................... 9 Acknowledgments ................................................. 10
  • 337. 1 Liver What is hepatitis C? Hepatitis C is a liver disease. Hepatitis (HEP-ah-TY-tis) makes your liver swell and stops it from working right. You need a healthy liver. The liver does many things to keep you alive. The liver fights infections and stops bleeding. It removes drugs and other poisons from your blood. The liver also stores energy for when you need it. What causes hepatitis C? Hepatitis C is caused by a virus. A virus is a germ that causes sickness. (For example, the flu is caused by a virus.) People can pass viruses to each other. The virus that causes hepatitis C is called the hepatitis C virus.
  • 338. 2 How could I get hepatitis C? Hepatitis C is spread by contact with an infected person’s blood. You could get hepatitis C by ● sharing drug needles ● getting pricked with a needle that has infected blood on it (hospital workers can get hepatitis C this way) ● having sex with an infected person, especially if you or your partner has other sexually transmitted diseases ● being born to a mother with hepatitis C In rare cases, you could get hepatitis C by ● getting a tattoo or body piercing with unsterilized, dirty tools You can NOT get hepatitis C by ● shaking hands with an infected person ● hugging an infected person ● kissing an infected person ● sitting next to an infected person You could get hepatitis C by sharing drug needles.
  • 339. 3 A doctor can test you for hepatitis C. Could I get hepatitis C from a blood transfusion? If you had a blood transfusion or organ transplant before 1992, you might have hepatitis C. Before 1992, doctors could not check blood for hepatitis C, and some people received infected blood. If you had a blood transfusion or organ transplant before 1992, ask a doctor to test you for hepatitis C. (See “What are the tests for hepatitis C?” on page 5.)
  • 340. 4 What are the symptoms? Many people with hepatitis C don’t have symptoms. However, some people with hepatitis C feel like they have the flu. So, you might ● feel tired ● feel sick to your stomach ● have a fever ● not want to eat ● have stomach pain ● have diarrhea Some people have ● dark yellow urine ● light-colored stools ● yellowish eyes and skin If you have symptoms or think you might have hepatitis C, go to a doctor.
  • 341. 5 What are the tests for hepatitis C? To check for hepatitis C, the doctor will test your blood. These tests show if you have hepatitis C and how serious it is. The doctor may also do a liver biopsy. A biopsy (BYE-op-see) is a simple test. The doctor removes a tiny piece of your liver through a needle. The doctor checks the piece of liver for signs of hepatitis C and liver damage. The doctor will take some blood to check for hepatitis C.
  • 342. 6 Hepatitis C is treated through shots of medicine. How is hepatitis C treated? Hepatitis C is treated with a drug called peginterferon, usually in combination with the drug ribavirin. You may need surgery if you have hepatitis C for many years. Over time, hepatitis C can cause your liver to stop working. If that happens, you will need a new liver. The surgery is called a liver transplant. It involves taking out the old, damaged liver and putting in a new, healthy one from a donor.
  • 343. 7 How can I protect myself? You can protect yourself and others from hepatitis C. ● Don’t share drug needles with anyone. ● Wear gloves if you have to touch anyone’s blood. ● If you have several sex partners, use a condom during sex. ● Don’t use an infected person’s toothbrush, razor, or anything else that could have blood on it. ● If you get a tattoo or body piercing, make sure it is done with clean tools. ● If you have hepatitis C, don’t give your blood or plasma. The person who receives it could become infected with the virus. If you inject drugs, use your own needles.
  • 344. 8 For More Information You can also get information about hepatitis C from these groups: American Liver Foundation (ALF) 75 Maiden Lane, Suite 603 New York, NY 10038–4810 Phone: 1–800–GO–LIVER (465–4837), 1–888–4HEP–USA (443–7872), or (212) 668–1000 Fax: (212) 483–8179 Email: info@liverfoundation.org Internet: www.liverfoundation.org Hepatitis Foundation International (HFI) 504 Blick Drive Silver Spring, MD 20904-2901 Phone: 1–800–891–0707 or (301) 622–4200 Fax: (301) 622–4702 Email: hfi@comcast.net Internet: www.hepfi.org
  • 345. 9 More in the Series There are other types of hepatitis. The National Digestive Diseases Information Clearinghouse also has booklets about hepatitis A and hepatitis B: ● What I need to know about Hepatitis A ● What I need to know about Hepatitis B You can get a free copy of each of these booklets by calling 1–800–891–5389 or (301) 654–3810, or by writing to NDDIC 2 Information Way Bethesda, MD 20892–3570 Hepatitis information for health professionals is also available.
  • 346. 10 Acknowledgments The individuals listed here provided editorial guidance or facilitated field testing for this publication. The National Digestive Diseases Information Clearinghouse would like to thank them for their contribution. Bruce Bacon, M.D. Chair, Education Committee American Liver Foundation New York, NY Luby Garza- Abijaoude, M.S., R.D., L.D. Texas Department of Health Austin, TX Thelma Thiel, R.N., B.A. Hepatitis Foundation International Silver Spring, MD
  • 347. 11 National Digestive Diseases Information Clearinghouse 2 Information Way Bethesda, MD 20892–3570 Phone: 1–800–891–5389 or (301) 654–3810 Fax: (301) 907–8906 Email: nddic@info.niddk.nih.gov Internet: www.digestive.niddk.nih.gov The National Digestive Diseases Information Clearinghouse (NDDIC) is a service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). The NIDDK is part of the National Institutes of Health under the U.S. Department of Health and Human Services. Established in 1980, the clearinghouse provides information about digestive diseases to people with digestive disorders and to their families, health care professionals, and the public. NDDIC answers inquiries, develops and distributes publications, and works closely with professional and patient organizations and Government agencies to coordinate resources about digestive diseases. Publications produced by the clearinghouse are carefully reviewed by both NIDDK scientists and outside experts. This publication is not copyrighted. The clearinghouse encourages users of this booklet to duplicate and distribute as many copies as desired. This booklet is also available at www.digestive.niddk.nih.gov.
  • 348. U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney Diseases NIH Publication No. 04–4229 May 2004
  • 349. How is HIV passed from one person to another? HIV transmission can occur when blood, semen (cum), pre-seminal fluid (pre-cum), vaginal fluid, or breast milk from an infected person enters the body of an uninfected person. HIV can enter the body through a vein (e.g., injection drug use), the lining of the anus or rectum, the lining of the vagina and/or cervix, the opening to the penis, the mouth, other mucous membranes (e.g., eyes or inside of the nose), or cuts and sores. Intact, healthy skin is an excellent barrier against HIV and other viruses and bacteria. These are the most common ways that HIV is transmitted from one person to another: by having sex (anal, vaginal, or oral) with an HIV-infected person; by sharing needles or injection equipment with an injection drug user who is infected with HIV; or from HIV- infected women to their babies before or during birth, or through breast-feeding after birth. HIV also can be transmitted through receipt of infected blood or blood clotting factors. However, since 1985, all donated blood in the United States has been tested for HIV. Therefore, the risk of infection through transfusion of blood or blood products is extremely low. The U.S. blood supply is considered to be among the safest in the world. For more information, see "How safe is the blood supply in the United States?") Some health-care workers have become infected after being stuck with needles containing HIV-infected blood or, less frequently when infected blood comes in contact with a worker's open cut or is splashed into a worker's eyes or inside their nose. There has been only one instance of patients being infected by an HIV-infected dentist to his patients. For more information, see "Are health care workers at risk of getting HIV on the job?" and "Are patients in a health care setting at risk of getting HIV?" If you would like more information or have personal concerns, call CDC-INFO 24 Hours/Day at 1-800-CDC- INFO (232-4636), 1-888-232-6348 (TTY), in English, en Español. Are health care workers at risk of getting HIV on the job? The risk of health care workers being exposed to HIV on the job is very low, especially if they carefully follow universal precautions (i.e., using protective practices and personal protective equipment to prevent HIV and other blood-borne infections). It is important to remember that casual, everyday contact with an HIV-infected person does not expose health care workers or anyone else to HIV. For health care workers on the job, the main risk of HIV transmission is through accidental injuries from needles and other sharp instruments that may be contaminated with the virus;
  • 350. however even this risk is small. Scientists estimate that the risk of infection from a needle-stick is less than 1 percent, a figure based on the findings of several studies of health care workers who received punctures from HIV-contaminated needles or were otherwise exposed to HIV-contaminated blood. For more information on preventing occupational exposure to HIV, refer to the CDC fact sheet, “Preventing Occupational HIV Transmission to Healthcare Personnel” available at http://www.cdc.gov/hiv/resources/factsheets/hcwprev.htm. Although the most important strategy for reducing the risk of occupational HIV transmission is to prevent occupational exposures, plans for post-exposure management of health care personnel should be in place. For guidelines on management of occupational exposure, refer to the June 29, 2001 Morbidity and Mortality Weekly Report, “Updated U.S. Public Health Service Guidelines for the Management of Occupational Exposures to HBV, HCV, and HIV and Recommendations for Postexposure Prophylaxis” available at http://www.cdc.gov/mmwr/preview/mmwrhtml/rr5011a1.htm. For more information on HIV and health care workers, visit the health care worker section of the CDC National Prevention Information Network (NPIN) Web site at http://www.cdcnpin.org/scripts/population/hcw.asp , or call NPIN at 1-800-458-5231.
  • 351. How are bloodborne pathogens spread?  Bloodborne pathogens are spread through contact with bodily fluids that have been contaminated with infected blood. These are considered to be Potentially Infectious Materials (PIMs). Bloodborne pathogens are most commonly spread through:  Contact with bodily fluids that have potential to transmit disease including:  Blood  Semen  Vaginal secretions  Amniotic fluid  Any body fluid contaminated with blood  Other internal human body fluids  Cerebrospinal fluid (brain)  Synovial fluid (joints)  Pleural fluid (lungs)  Pericardial fluid (heart)  Peritoneal fluid (abdomen)  Sexual contact  Cuts or punctures of the skin with a contaminated sharp object  Contact of infected fluids with open cuts or mucous membranes (eyes, nose, mouth, etc.)  Contact of infected fluids, materials or equipment with inflamed skin, acne or skin abrasions 144
  • 352.  Materials that are Not potentially infectious include:  Tears  Sweat  Saliva (except during dental procedures when blood is commonly present in the saliva)  Vomit  Feces  Urine  Nose fluids  Intact human skin  How are bloodborne pathogens NOT spread?  By bloodborne pathogens touching intact skin  Casual contact such as handshakes, hugging, sneezing, touching doorknobs, using swimming pools, sitting on toilet seats 145
  • 353. How do I prevent myself and others from contracting a bloodborne illness?  The three most important things you can do to prevent illness from bloodborne pathogens are:  Get vaccinated for Hepatitis B  Use safe work practices including Standard Precautions  Use good hygiene practices  Each of these will be discussed. 146
  • 354. Hepatitis B Vaccination  OSHA regulations require that employers must offer the Hepatitis B vaccine at no cost to any employee who is exposed to blood or other potentially infectious materials as part of their job duties. An employee may decline to be vaccinated, but must sign a form provided by the employer noting the declination.  Three doses are generally required to complete the hepatitis B vaccine series, although there is an accelerated two-dose series for adolescents. The typical schedule is as follows:  First Injection - At any given time  Second Injection - At least one month after the first dose  Third Injection - Six months after the first dose  Your doctor may recommend testing your blood 1-6 months after the vaccines have been administered to determine if the vaccine has successfully helped you to develop the antibodies needed to protect you from hepatitis B. If the ‘titer’ is below 10 mIU/mL 1 to 6 months after the initial vaccination series is completed, you are not considered immune and you may need an additional dose(s) of the vaccine. If the titer level is still too low after the additional dose(s), no further doses are typically administered, even if the titer status remains ‘non- immune’. 147
  • 355. HEPATITIS B VACCINE 1 What is hepatitis B? W H A T Y O U N E E D T O K N O W Hepatitis B is a serious disease that affects the liver. It is caused by the hepatitis B virus (HBV). HBV can cause: Acute (short-term) illness. This can lead to: • loss of appetite • diarrhea and vomiting • tiredness • jaundice (yellow skin or eyes) • pain in muscles, joints, and stomach Acute illness is more common among adults. Children who become infected usually do not have acute illness. Chronic (long-term) infection. Some people go on to develop chronic HBV infection. This can be very serious, and often leads to: •liver damage (cirrhosis) •liver cancer •death Chronic infection is more common among infants and children than among adults. People who are infected can spread HBV to others, even if they don’t appear sick. • In 2005, about 51,000 people became infected with hepatitis B. • About 1.25 million people in the United States have chronic HBV infection. • Each year about 3,000 to 5,000 people die from cirrhosis or liver cancer caused by HBV. Hepatitis B virus is spread through contact with the blood or other body fluids of an infected person. A person can become infected by: - contact with a mother’s blood and body fluids at the time of birth; - contact with blood and body fluids through breaks in the skin such as bites, cuts, or sores; - contact with objects that could have blood or body fluids on them such as toothbrushes or razors; - having unprotected sex with an infected person; - sharing needles when injecting drugs; - being stuck with a used needle on the job. Children and Adolescents • All children should get their first dose of hepatitis B vaccine at birth and should have completed the vaccine series by 6-18 months of age. • Children and adolescents through 18 years of age who did not get the vaccine when they were younger should also be vaccinated. Adults • All unvaccinated adults at risk for HBV infection should be vaccinated. This includes: - sex partners of people infected with HBV, - men who have sex with men, - people who inject street drugs, - people with more than one sex partner, - people with chronic liver or kidney disease, - people with jobs that expose them to human blood, - household contacts of people infected with HBV, - residents and staff in institutions for the developmentally disabled, - kidney dialysis patients, Hepatitis B vaccine can prevent hepatitis B, and the serious consequences of HBV infection, including liver cancer and cirrhosis. Routine hepatitis B vaccination of U.S. children began in 1991. Since then, the reported incidence of acute hepatitis B among children and adolescents has dropped by more than 95% – and by 75% in all age groups. Hepatitis B vaccine is made from a part of the hepatitis B virus. It cannot cause HBV infection. Hepatitis B vaccine is usually given as a series of 3 or 4 shots. This vaccine series gives long-term protection from HBV infection, possibly lifelong. 2 Hepatitis B vaccine: Why get vaccinated? 3 Who should get hepatitis B vaccine and when? Many Vaccine Information Statements are available in Spanish and other languages. See www.immunize.org/vis.
  • 356. - people who travel to countries where hepatitis B is common, - people with HIV infection. • Anyone else who wants to be protected from HBV infection may be vaccinated. 4 Who should NOT get hepatitis B vaccine? • Anyone with a life-threatening allergy to baker’s yeast, or to any other component of the vaccine, should not get hepatitis B vaccine. Tell your provider if you have any severe allergies. • Anyone who has had a life-threatening allergic reaction to a previous dose of hepatitis B vaccine should not get another dose. • Anyone who is moderately or severely ill when a dose of vaccine is scheduled should probably wait until they recover before getting the vaccine. Your provider can give you more information about these precautions. Pregnant women who need protection from HBV infection may be vaccinated. 5 Hepatitis B vaccine risks Hepatitis B is a very safe vaccine. Most people do not have any problems with it. The following mild problems have been reported: • Soreness where the shot was given (up to about 1 person in 4). • Temperature of 99.9°F or higher (up to about 1 person in 15). Severe problems are extremely rare. Severe allergic reactions are believed to occur about once in 1.1 million doses. A vaccine, like any medicine, could cause a serious reaction. But the risk of a vaccine causing serious harm, or death, is extremely small. More than 100 million people have gotten hepatitis B vaccine in the United States. 6 What if there is a moderate or severe reaction? 8 How can I learn more? • Ask your doctor or nurse. They can give you the vaccine package insert or suggest other sources of information. • Call your local or state health department. • Contact the Centers for Disease Control and Prevention (CDC): - Call 1-800-232-4636 (1-800-CDC-INFO) - Visit CDC websites at: www.cdc.gov/ncidod/diseases/hepatitis www.cdc.gov/vaccines www.cdc.gov/travel 7 The National Vaccine Injury Compensation Program In the event that you or your child has a serious reaction to a vaccine, a federal program has been created to help pay for the care of those who have been harmed. For details about the National Vaccine Injury Compensation Program, call 1-800-338-2382 or visit their website at www.hrsa.gov/vaccinecompensation. ddeeppaarrttmmeenntt ooff hheeaalltthh aanndd hhuummaann sseerrvviicceess Centers for Disease Control and Prevention Vaccine Information Statement (Interim) Hepatitis B (7/18/07) 42 U.S.C. § 300aa-26 What should I look for? • Any unusual condition, such as a high fever or behavior changes. Signs of a serious allergic reaction can include difficulty breathing, hoarse- ness or wheezing, hives, paleness, weakness, a fast heart beat or dizziness. What should I do? • Call a doctor, or get the person to a doctor right away. • Tell your doctor what happened, the date and time it happened, and when the vaccination was given. • Ask your doctor, nurse, or health department to report the reaction by filing a Vaccine Adverse Event Reporting System (VAERS) form. Or you can file this report through the VAERS web site at www.vaers.hhs.gov, or by calling 1-800-822-7967. VAERS does not provide medical advice.
  • 357. Safe Work Practices  The first line of defense against bloodborne illness is prevention. The CDC (Center for Disease Control) has published standard precautions to be used in environments where exposure to blood or other PIMs is likely.  Standard precautions are “a set of precautions designed to prevent transmission of human immunodeficiency virus (HIV), hepatitis B virus (HBV), and other bloodborne pathogens when providing first aid or health care. Under standard precautions, blood and certain body fluids of all patients are considered potentially infectious for HIV, HBV and other bloodborne pathogens.“  Standard Precautions include:  Proper Hand Washing  Precautions to prevent injury by needles and other sharp objects  Treating all human blood and other PIMs as if they are contaminated  Use of Personal Protective Equipment  Gloves  Gowns  Masks  Other Protective Barriers 149
  • 358.  Per the CDC: “Universal precautions apply to blood, other body fluids containing visible blood, semen, and vaginal secretions. Universal precautions also apply to tissues and to the following fluids: cerebrospinal, synovial, pleural, peritoneal, pericardial, and amniotic fluids. Universal precautions do not apply to feces, nasal secretions, sputum, sweat, tears, urine, and vomitus unless they contain visible blood. Universal precautions do not apply to saliva except when visibly contaminated with blood or in the dental setting where blood contamination of saliva is predictable. Universal precautions involve the use of protective barriers such as gloves, gowns, aprons, masks, or protective eyewear, which can reduce the risk of exposure of the health care worker's skin or mucous membranes to potentially infective materials. In addition, under universal precautions, it is recommended that all health care workers take precautions to prevent injuries caused by needles, scalpels, and other sharp instruments or devices.” Although not specifically noted in standard precautions, disposable CPR masks are another item that can help prevent the spread of bloodborne pathogens. A disposable CPR mask should contain a flexible mouth barrier that prevents physical contact with the victim's face while performing CPR, a breathing tube that facilitates an open airway during mouth-to-mouth resuscitation and an anti-flux valve to prevent backflow of the victim's breath or bodily fluids into the mouth or other mucous membrane of the person performing CPR. 150
  • 359. Proper Hand Washing and Other Hygiene & Safety Practices  Hand washing is one of the most effective ways to prevent the spread of illness and infection. It is important to wash hands frequently and correctly.  The CDC has created an information sheet on the correct procedures for hand washing.  Required Reading & Viewing:  CDC Features Wash Your Hands the Right Way. 151
  • 360. Wash Your Hands: The Right Way Wet your hands with clean running water and apply soap. Use warm water if it is Hand washing is a simple thing and it's the best way to prevent infection and illness. Clean hands prevent infections. Keeping hands clean prevents illness at home, at school, and at work. Hand hygiene practices are key prevention tools in healthcare settings, in daycare facilities, in schools and public institutions, and for the safety of our food. In healthcare settings, hand washing can prevent potentially fatal infections from spreading from patient to patient and from patient to healthcare worker and vice-versa. The basic rule in the hospital is to cleanse hands before and after each patient contact by either washing hands or using an alcohol-based hand rub. At home, hand washing can prevent infection and illness from spreading from family member to family member and, sometimes, throughout a community. In the home, the basic rule is to wash hands before preparing food and after handling uncooked meat and poultry, before eating, after changing diapers, after coughing, sneezing, or blowing one's nose into a tissue, and after using the bathroom. Wash Your Hands: The Right Way When washing hands with soap and water: Wet your hands with clean running water and apply soap. Use warm water if it is available. Rub hands together to make a lather and scrub all surfaces. Continue rubbing hands for 15-20 seconds. Need a timer? Imagine singing "Happy Birthday" twice through to a friend. Rinse hands well under running water. Dry your hands using a paper towel or air dryer. If possible, use your paper towel to turn off the faucet. Always use soap and water if your hands are visibly dirty. Apply product to the palm of one hand. Rub hands together. Rub the product over all surfaces of hands and fingers until hands are dry.
  • 361. If soap and clean water are not available, use an alcohol-based hand rub to clean your hands. Alcohol-based hand rubs significantly reduce the number of germs on skin and are fast-acting. When using an alcohol-based hand sanitizer: Apply product to the palm of one hand. Rub hands together. Rub the product over all surfaces of hands and fingers until hands are dry. Hand Washing: The Beginning of Infection Control Ignaz Semmelweis, an Austrian-Hungarian physician, first demonstrated over 150 years ago that hand hygiene can prevent the spread of disease. Hand hygiene as a practice includes performing handwashing, or using antiseptic handwash, alcohol-based hand rub, or surgical hand hygiene/antisepsis. Dr. Semmelweis worked in a hospital in Vienna whose maternity patients were dying at such an alarming rate that they begged to be sent home. Most of those dying had been treated by student physicians who worked on corpses during an anatomy class before beginning their rounds in a maternity ward. Because the students did not wash their hands effectively between touching the dead and the living– hand washing was an unrecognized hygienic practice at the time–pathogenic bacteria from the corpses regularly were transmitted to the mothers via the students' hands. The result was a death rate five times higher for mothers who delivered in one clinic of the hospital than for mothers who delivered at another clinic not attended by the student physicians. In an experiment considered quaint at best by his colleagues, Dr. Semmelweis insisted that his students wash their hands before treating the mothers–and deaths on the maternity ward fell fivefold. Unquestioned today as the most important tool in the healthcare worker's arsenal for preventing infection, hand washing was not readily accepted in Dr. Semmelweis's era. Indeed, his pleas to make hand washing a routine practice throughout the hospital were largely met with derision. Another 50 years would pass before the importance of hand washing as a preventive measure would be widely accepted by the medical profession. Sanitation is now a standard and thousands of lives have been saved because of Dr. Semmelweis's discovery. 1 Semmelweis I. Etiology, concept, and prophylaxis of childbed fever. Carter KC, ed. 1st ed. Madison, WI: The University of Wisconsin Press, 1983. 12/9/2008 http://www.cdc.gov/Features/HandWashing/ Centers for Disease Control and Prevention 1600 Clifton Rd. Atlanta, GA 30333, USA 800-CDC-INFO (800-232-4636) TTY: (888) 232-6348, 24 Hours/Every Day - cdcinfo@cdc.gov
  • 362.  Other Hygiene & Safety Practices  Never eat, drink, smoke, apply cosmetics or lip balm, or handle contact lenses in an area of likely exposure  Never store food or drinks near PIMs  Minimize splashing, spraying, or splattering when handling PIMs  Always dispose of lancets, insulin syringes and other sharps in a sharps container  When emptying trash, never use your hands to compact the trash  Carry trash bags away from your body  When working with human blood or other PIMs:  Minimize splashing or spraying of human blood or other PIMs  Mouth pipetting/suctioning of blood or other potentially infectious materials is prohibited  Place specimens of blood or other potentially infectious materials in a leak-proof, non-breakable container for collection, handling, processing, storage, transport, or shipping  Correctly color-code and/or label with the biohazard symbol any container for storage, transport, or shipping of blood or other PIMs  If outside contamination of the primary container occurs, the primary container is to be placed within a second container which prevents leakage during handling, processing, storage, transport, or shipping and appropriately label or color-code this container  Affix biohazard symbols to containers of regulated waste, refrigerators, and freezers  Keep waste containers near the area where work with human blood or other PIMs is being performed  Never overfill waste containers  Wash hands frequently, even if gloves have been worn 152
  • 363.  In an work area where blood or other PIMs will be handled or stored, hand and skin washing and eye washing facilities are to be provided in a location that is readily accessible to staff.  If facilities are not feasible, then either an appropriate antiseptic hand cleanser and clean cloth/paper towels or antiseptic towelettes are to be provided.  After use of the antiseptic cleansers or towelettes, hands and contaminated skin need to be washed with soap and running water as soon as possible. 153
  • 364. Sharps Safety  Employees working with children and adults with disabilities may come into contact with ‘sharps’ – most commonly needles and lancets. Needlesticks or cuts with contaminated objects can cause infection from a bloodborne pathogen. Proper handling and disposal of sharps is essential to prevent exposure to such bloodborne pathogens as HIV, HBV and HCV. The Needlestick Safety and Prevention Act changes the bloodborne pathogen standard to include terminology requiring ‘safer medical devices, such as sharps with engineered sharps injury protections and needleless systems’ be used. There are many products and needles available that promote safe use and disposal of needles, lancets and other sharps after use. Safer products include needles that retract, sheathe or blunt immediately after use. 154
  • 365.  Needles, lancets used to obtain a drop of blood for blood glucose testing for persons with diabetes and other sharps must be discarded in leak-proof, puncture- resistant containers that are red, have a lid, are maintained in an upright position to prevent leaks and are appropriately marked. The lid is required on this container to ensure safe transporting of the container. Be sure the container is not overfilled, since it is important that the lid close tightly. Having sharps disposal containers properly marked and located also can help prevent accidents. Safety conscious organizations work to eliminate hazards, use engineering controls (such as needles that retract) use administrative controls (such as policies and procedures for staff to follow to reduce exposure to hazards), use of work practice controls (such as having and using the means to safely use and dispose of sharps, and use of Personal Protective Equipment (PPE) when appropriate. There are many good resources to help you protect yourself and others when handling needles and other sharp objects. Below are three resources that are required reading for this section. 155
  • 366. A needlestick or a cut from a contaminated scapel can lead to infection from hepatitis B virus (HBV) or human immunodeficiency virus (HIV) which causes AIDS. Although few cases of AIDS have been documented from occupational exposure, approximately 8,700 health care workers each year contract hepatitis B. About 200 will die as a result. The new OSHA standard covering bloodborne pathogens specifies measures to reduce these risks of infection. PROMPT DISPOSAL The best way to prevent cuts and sticks is to minimize contact with sharps. That means disposing of them immediately after use. Puncture-resistant containers must be available nearby to hold contaminated sharps-- either for disposal or, for reusable sharps, later decontamination for re-use. When reprocessing contaminated reusable sharps, employees must not reach by hand into the holding container. Contaminated sharps must never be sheared or broken. Recapping, bending, or removing needles is permissible only if there is no feasible alternative or if required for a specific medical procedure such as blood gas analysis. If recapping, bending, or removal is necessary, workers must use either a mechanical device or a one-handed technique. If recapping is essential--for example, between multiple injections for the same patient- -employees must avoid using both hands to recap. Employees might recap with a one-handed "scoop" technique, using the needle itself to pick up the cap, pushing cap and sharp together against a hard surface to ensure a tight fit. Or they might hold the cap with tongs or forceps to place it on the needle. SHARPS CONTAINERS Containers for used sharps must be puncture resistant. The sides and the bottom must be leakproof. They must be labeled or color coded red to ensure that everyone knows the contents are hazardous. Containers for disposable sharps must have a lid, and they must be maintained upright to keep liquids and the sharps inside. Employees must never reach by hand into containers of contaminated sharps. Containers for reusable sharps could be equipped with wire basket liners for easy removal during reprocessing, or employees could use tongs or forceps to withdraw the contents. Reusable sharps disposal containers may not be opened, emptied, or cleaned manually. Containers need to be located as near to as feasible the area of use. In some cases, they may be placed on carts to prevent access to mentally disturbed or pediatric patients. Containers also should be available wherever sharps may be found, such as in laundries. The containers must be replaced routinely and not be overfilled, which can increase the risk of needlesticks or cuts. HANDLING CONTAINERS When employees are ready to discard containers’ they should first close the lids. If there is a chance of leakage from the primary container, the employees should use a secondary container that is closable, labeled, or color coded and leak resistant. Careful handling of sharps can prevent injury and reduce the risk of infection. By following these work practices, employees can decrease their chances of contracting bloodborne illness. This a one of a series of fact sheets that discusses various requirements of the Occupational Safety and Health Administration’s standard covering exposure to bloodborne pathogens. Single copies of fact sheets are available from OSHA Publications, Room N-3101, 200 Constitution Avenue, N.W., Washington DC 20210 and from OSHA regional offices.
  • 367. Public Law 106-430 106th Congress Needlestick Safety and Prevention Act To require changes in the bloodborne pathogens standard in effect under the Occupational Safety and Health Act of 1970. <<NOTE: Nov. 6,2000 - [H.R. 5178]>> Be it enacted by the Senate and House of Representatives of the United States of America in Congress <<NOTE: Needlestick Safety and Prevention Act.>> assembled, SECTION 1. SHORT TITLE. This Act may be cited as the ``Needlestick Safety and Prevention Act''. SEC. 2. FINDINGS. The Congress finds the following: (1) Numerous workers who are occupationally exposed to bloodborne pathogens have contracted fatal and other serious viruses and diseases, including the human immunodeficiency virus (HIV), hepatitis B, and hepatitis C from exposure to blood and other potentially infectious materials in their workplace. (2) In 1991 the Occupational Safety and Health Administration issued a standard regulating occupational exposure to bloodborne pathogens, including the human immunodeficiency virus, (HIV), the hepatitis B virus (HBV), and the hepatitis C virus (HCV). (3) Compliance with the bloodborne pathogens standard has significantly reduced the risk that workers will contract a bloodborne disease in the course of their work. (4) Nevertheless, occupational exposure to bloodborne pathogens from accidental sharps injuries in health care settings continues to be a serious problem. In March 2000, the Centers for Disease Control and Prevention estimated that more than 380,000 percutaneous injuries from contaminated sharps occur annually among health care workers in United States hospital settings. Estimates for all health care settings are that 600,000 to 800,000 needlestick and other percutaneous injuries occur among health care workers annually. Such injuries can involve needles or other sharps contaminated with bloodborne pathogens, such as HIV, HBV, or HCV. (5) Since publication of the bloodborne pathogens standard in 1991 there has been a substantial increase in the number and assortment of effective engineering controls available to employers. There is now a large body of research and data concerning the effectiveness of newer engineering controls, including safer medical devices. (6) 396 interested parties responded to a Request for Information (in this section referred to as the ``RFI'') conducted by the Occupational Safety and Health Administration in 1998 on engineering and work practice controls used to eliminate or minimize the risk of occupational exposure to bloodborne pathogens due to percutaneous injuries from contaminated sharps. Comments were provided by health care facilities, groups representing healthcare workers, researchers, educational institutions, professional and industry associations, and manufacturers of medical devices. (7) Numerous studies have demonstrated that the use of safer medical devices, such as needleless systems and sharps with engineered sharps injury protections, when they are part of an
  • 368. overall bloodborne pathogens risk-reduction program, can be extremely effective in reducing accidental sharps injuries. (8) In March 2000, the Centers for Disease Control and Prevention estimated that, depending on the type of device used and the procedure involved, 62 to 88 percent of sharps injuries can potentially be prevented by the use of safer medical devices. (9) The OSHA 200 Log, as it is currently maintained, does not sufficiently reflect injuries that may involve exposure to bloodborne pathogens in healthcare facilities. More than 98 percent of healthcare facilities responding to the RFI have adopted surveillance systems in addition to the OSHA 200 Log. Information gathered through these surveillance systems is commonly used for hazard identification and evaluation of program and device effectiveness. (10) Training and education in the use of safer medical devices and safer work practices are significant elements in the prevention of percutaneous exposure incidents. Staff involvement in the device selection and evaluation process is also an important element to achieving a reduction in sharps injuries, particularly as new safer devices are introduced into the work setting. (11) Modification of the bloodborne pathogens standard is appropriate to set forth in greater detail its requirement that employers identify, evaluate, and make use of effective safer medical devices. SEC. 3. BLOODBORNE PATHOGENS STANDARD. The bloodborne pathogens standard published at 29 CFR 1910.1030 shall be revised as follows: (1) The definition of ``Engineering Controls'' (at 29 CFR 1910.1030(b)) shall include as additional examples of controls the following: ``safer medical devices, such as sharps with engineered sharps injury protections and needleless systems''. (2) The term ``Sharps with Engineered Sharps Injury Protections'' shall be added to the definitions (at 29 CFR 1910.1030(b)) and defined as ``a nonneedle sharp or a needle device used for withdrawing body fluids, accessing a vein or artery, or administering medications or other fluids, with a built-in safety feature or mechanism that effectively reduces the risk of an exposure incident''. (3) The term ``Needleless Systems'' shall be added to the definitions (at 29 CFR 1910.1030(b)) and defined as ``a device that does not use needles for: (A) the collection of bodily fluids or withdrawal of body fluids after initial venous or arterial access is established; (B) the administration of medication or fluids; or (C) any other procedure involving the potential for occupational exposure to bloodborne pathogens due to percutaneous injuries from contaminated sharps''. (4) In addition to the existing requirements concerning exposure control plans (29 CFR 1910.1030(c)(1)(iv)), the review and update of such plans shall be required to also-- (A) ``reflect changes in technology that eliminate or reduce exposure to bloodborne pathogens''; and (B) ``document annually consideration and implementation of appropriate commercially available and effective safer medical devices designed to eliminate or minimize occupational exposure''. (5) The following additional recordkeeping requirement shall be added to the bloodborne pathogens standard at 29 CFR 1910.1030(h): ``The
  • 369. employer shall establish and maintain a sharps injury log for the recording of percutaneous injuries from contaminated sharps. The information in the sharps injury log shall be recorded and maintained in such manner as to protect the confidentiality of the injured employee. The sharps injury log shall contain, at a minimum-- ``(A) the type and brand of device involved in the incident, ``(B) the department or work area where the exposure incident occurred, and ``(C) an explanation of how the incident occurred.''. The requirement for such sharps injury log shall not apply to any employer who is not required to maintain a log of occupational injuries and illnesses under 29 CFR 1904 and the sharps injury log shall be maintained for the period required by 29 CFR 1904.6. (6) The following new section shall be added to the bloodborne pathogens standard: ``An employer, who is required to establish an Exposure Control Plan shall solicit input from non- managerial employees responsible for direct patient care who are potentially exposed to injuries from contaminated sharps in the identification, evaluation, and selection of effective engineering and work practice controls and shall document the solicitation in the Exposure Control Plan.''. SEC. 4. EFFECT OF MODIFICATIONS. The modifications under section 3 shall be in force until superseded in whole or in part by regulations promulgated by the Secretary of Labor under section 6(b) of the Occupational Safety and Health Act of 1970 (29 U.S.C. 655(b)) and shall be enforced in the same manner and to the same extent as any rule or regulation promulgated under section 6(b). SEC. 5. PROCEDURE AND EFFECTIVE DATE. (a) Procedure.--The modifications of the bloodborne pathogens standard prescribed by section 3 shall take effect without regard to the procedural requirements applicable to regulations promulgated under section 6(b) of the Occupational Safety and Health Act of 1970 (29 U.S.C. 655(b)) or the procedural requirements of chapter 5 of title 5, United States Code. (b) Effective Date.--The modifications to the bloodborne pathogens standard required by section 3 shall-- (1) <<NOTE: Deadline. Federal Register, publication.>> within 6 months of the date of the enactment of this Act, be made and published in the Federal Register by the Secretary of Labor acting through the Occupational Safety and Health Administration; and (2) at the end of 90 days after such publication, take effect. Approved November 6, 2000. LEGISLATIVE HISTORY--H.R. 5178: --------------------------------------------------------------------------- CONGRESSIONAL RECORD, Vol. 146 (2000): Oct. 3, considered and passed House. Oct. 26, considered and passed Senate. WEEKLY COMPILATION OF PRESIDENTIAL DOCUMENTS, Vol. 36 (2000): Nov. 6, Presidential statement.
  • 370.  Although disposal of sharps in an individual’s home is not regulated by OSHA, proper disposal of needles, lancets and other sharps at home is still important. In order to protect anyone who may handle household waste, individuals in the home should be aware of ways to safely dispose of sharps. When an individual with a disability lives in their own home, staff may have the opportunity to teach acceptable disposal options for sharps in the home.  The Ohio EPA offers tips for disposal of such items. 157
  • 371. Disposal Tips for Household Generated “Sharps” Disposing of loose needles and syringes (sharps) into household trash poses a risk to family members and solid waste workers who must handle the waste. While Ohio law allows the disposal of sharps used by an individual for purposes of their own care or treatment into the solid waste stream, it is important to recognize the hazard they pose to solid waste workers who handle waste containers without knowledge of the contents. Sharps should be packaged to minimize opportunity for contact injury. Needles and syringes should be discarded intact after use. Needles should never be bent, broken, or manipulated by hand. If the purchase of a medical grade sharps container is too costly, there are various alternatives for safe disposal. What are sharps? Sharps include lancets, hypodermic needles, syringes, scalpel blades and broken glass articles (other than household items). Who is a home sharp user? A person who generates sharp wastes for the purpose of their own care or treatment. For example, an insulin dependent diabetic or a terminally ill person being cared for by family members at home. What are my alternatives to a purchased sharps Container? Use a rigid, leak-proof, puncture resistant container with a tight fitting lid. Common household containers that match this description include detergent bottles, bleach bottles, two liter bottles, plastic juice containers and coffee cans (if the lid is securely taped to the can). Glass containers are not recommended for use as sharps containers because the glass may break and spill the contents. Plastic milk jugs make poor sharps containers because the plastic used in these containers is thin and sharps easily poke through. In addition, milk jugs do not always have a tight fitting lid. Label any container used to dispose of sharps with the word “SHARPS” on all sides of the container in big block letters. Labeling the container will convey the potential hazard inside to the solid waste worker or recycling facility. What are some other disposal alternatives for Sharps? Inquire with the company or pharmacy where you purchase your medical supplies regarding disposal alternatives. Some have programs to accept sharps containers, free or for a nominal fee, which are then treated and disposed. Your local health department may also be aware of available disposal alternatives. Also, home users may have the sharps picked-up by a commercial service. Some communities offer special pickup on designated days of the month. Landfills may accept sharps containers directly at the landfill in an effort to reduce the number of sharps in the solid waste and the risk to the sanitation worker. Some hospitals will take sharp wastes generated by an individual for purposes of their own treatment or care. Why is it allowable to throw sharps into the trash and not properly package them? Infectious waste generated by an individual for the purposes of their own care or treatment at home is exempt from the infectious wastes regulations. However, it is strongly encouraged that all infectious wastes be packaged in an appropriate container and labeled to convey its potential hazard. You may contact your local solid waste hauler to ask about their policy pertaining to accepting sharps containers.
  • 372. Use of Personal Protective Equipment (PPE)  Personal protective equipment includes specialized clothing worn to protect against a hazard. This includes such items as gloves, masks, face shields and gowns. Employers are required to provide necessary personal protective equipment. The type of personal protective equipment provided and used must be suitable and “the level of protection must fit the expected exposure.” For example, someone who is unlikely to be splashed but may need to handle blood or other PIM, might only need to wear gloves. They would not be expected to use more extensive protection such as a mask or gown. It is essential that employees:  Know where PPEs are located  Know when to use a PPE  Know what PPE is correct for the situation  Know the proper way to remove and dispose of the PPE  Change gloves after use on each person  Wash hands after removing a PPE  Gloves are the most common PPE used in healthcare settings. For proper removal of gloves and additional information on PPEs, please click the links below. 159
  • 373. Required Reading  Required Reading  CDC Glove Removal & PPE Selection  CDC Poster: Donning & Removal of PPEs  OSHA Fact Sheet: Personal Protective Equipment Cuts Risk - BBFacts03 160
  • 374. 32 How to Remove Gloves (1) • Grasp outside edge near wrist • Peel away from hand, turning glove inside-out • Hold in opposite gloved hand PPE Use in Healthcare Settings Using one gloved hand, grasp the outside of the opposite glove near the wrist. Pull and peel the glove away from the hand. The glove should now be turned inside-out, with the contaminated side now on the inside. Hold the removed glove in the opposite gloved hand.
  • 375. 33 How to Remove Gloves (2) • Slide ungloved finger under the wrist of the remaining glove • Peel off from inside, creating a bag for both gloves • Discard PPE Use in Healthcare Settings Slide one or two fingers of the ungloved hand under the wrist of the remaining glove. Peel glove off from the inside, creating a bag for both gloves. Discard in waste container.
  • 376. 38 Hand Hygiene • Perform hand hygiene immediately after removing PPE. – If hands become visibly contaminated during PPE removal, wash hands before continuing to remove PPE • Wash hands with soap and water or use an alcohol-based hand rub PPE Use in Healthcare Settings * Ensure that hand hygiene facilities are available at the point needed, e.g., sink or alcohol-based hand rub Hand hygiene is the cornerstone of preventing infection transmission. You should perform hand hygiene immediately after removing PPE. If your hands become visibly contaminated during PPE removal, wash hands before continuing to remove PPE. Wash your hands thoroughly with soap and warm water or, if hands are not visibly contaminated, use an alcohol-based hand rub.
  • 377. 42 PPE for Standard Precautions (1) • Gloves – Use when touching blood, body fluids, secretions, excretions, contaminated items; for touching mucus membranes and nonintact skin • Gowns – Use during procedures and patient care activities when contact of clothing/ exposed skin with blood/body fluids, secretions, or excretions is anticipated PPE Use in Healthcare Settings Under Standard Precautions, gloves should be used when touching blood, body fluids, secretions, excretions, or contaminated items and for touching mucous membranes and nonintact skin. A gown should be used during procedures and patient care activities when contact of clothing and/or exposed skin with blood, body fluids, secretions, or excretions is anticipated. Aprons are sometimes used as PPE over scrubs, such as in hemodialysis centers when inserting a needle into a fistula.
  • 378. 43 PPE for Standard Precautions (2) • Mask and goggles or a face shield – Use during patient care activities likely to generate splashes or sprays of blood, body fluids, secretions, or excretions PPE Use in Healthcare Settings Mask and goggles or a face shield should be used during patient care activities that are likely to generate splashes and sprays of blood, body fluids, secretions, or excretions.
  • 379. 45 What Type of PPE Would You Wear? • Giving a bed bath? • Generally none • Suctioning oral secretions? • Gloves and mask/goggles or a face shield – sometimes gown • Transporting a patient in a wheel chair? • Generally none required • Responding to an emergency where blood is spurting? • Gloves, fluid-resistant gown, mask/goggles or a face shield • Drawing blood from a vein? • Gloves • Cleaning an incontinent patient with diarrhea? • Gloves w/wo gown • Irrigating a wound? • Gloves, gown, mask/goggles or a face shield • Taking vital signs? – Generally none PPE Use in Healthcare Settings Listed here are several patient care activities that could indicate a need to wear PPE. What PPE would you wear for the following? Giving a bed bath? (generally none) Suctioning oral secretions? (gloves and mask/goggles or a face shield) (Respondents may correctly note that this may depend on whether open or closed suction is being used) Transporting a patient in a wheelchair? (generally none) Responding to an emergency where blood is spurting? (gloves, fluid-resistant gown, and mask/goggles or a face shield) Drawing blood from a vein? (gloves) Cleaning an incontinent patient with diarrhea? (gloves and generally a gown) Irrigating a wound? (gloves, gown, and mask/goggles or a face shield) Taking vital signs? (generally none)
  • 380. 49 PPE Use in Healthcare Settings: Final Thoughts • PPE is available to protect you from exposure to infectious agents in the healthcare workplace • Know what type of PPE is necessary for the duties you perform and use it correctly These are a few final thoughts before ending today’s presentation. Remember, PPE is available to protect you from exposure to infectious agents during healthcare. It is important that you know what type of PPE is necessary for the procedures you perform AND that you use it correctly.
  • 381. SEQUENCE FOR DONNING PERSONAL PROTECTIVE EQUIPMENT (PPE) SECUENCIA PARA PONERSE EL EQUIPO DE PROTECCIÓN PERSONAL (PPE) 1. GUANTES ■ ¡El exterior de los guantes está contaminado! ■ Agarre la parte exterior del guante con la mano opuesta en la que todavía tiene puesto el guante y quíteselo ■ Sostenga el guante que se quitó con la mano enguantada ■ Deslice los dedos de la mano sin guante por debajo del otro guante que no se ha quitado todavía a la altura de la muñeca ■ Quítese el guante de manera que acabe cubriendo el primer guante ■ Arroje los guantes en el recipiente de deshechos 2. GAFAS PROTECTORAS O CARETA ■ ¡El exterior de las gafas protectoras o de la careta está contaminado! ■ Para quitárselas, tómelas por la parte de la banda de la cabeza o de las piezas de las orejas ■ Colóquelas en el recipiente designado para reprocesar materiales o de materiales de deshecho 3. BATA ■ ¡La parte delantera de la bata y las mangas están contaminadas! ■ Desate los cordones ■ Tocando solamente el interior de la bata, pásela por encima del cuello y de los hombros ■ Voltee la bata al revés ■ Dóblela o enróllela y deséchela 4. MÁSCARA O RESPIRADOR ■ La parte delantera de la máscara o respirador está contaminada — ¡NO LA TOQUE! ■ Primero agarre la parte de abajo, luego los cordones o banda elástica de arriba y por último quítese la máscara o respirador ■ Arrójela en el recipiente de deshechos The type of PPE used will vary based on the level of precautions required; e.g., Standard and Contact, Droplet or Airborne Infection Isolation. USE SAFE WORK PRACTICES TO PROTECT YOURSELF AND LIMIT THE SPREAD OF CONTAMINATION ■ Keep hands away from face ■ Limit surfaces touched ■ Change gloves when torn or heavily contaminated ■ Perform hand hygiene El tipo de PPE que se debe utilizar depende del nivel de precaución que sea necesario; por ejemplo, equipo Estándar y de Contacto o de Aislamiento de infecciones transportadas por gotas o por aire. UTILICE PRÁCTICAS DE TRABAJO SEGURAS PARA PROTEGERSE USTED MISMO Y LIMITAR LA PROPAGACIÓN DE LA CONTAMINACIÓN ■ Mantenga las manos alejadas de la cara ■ Limite el contacto con superficies ■ Cambie los guantes si se rompen o están demasiado contaminados ■ Realice la higiene de las manos 1. GLOVES ■ Outside of gloves is contaminated! ■ Grasp outside of glove with opposite gloved hand; peel off ■ Hold removed glove in gloved hand ■ Slide fingers of ungloved hand under remaining glove at wrist ■ Peel glove off over first glove ■ Discard gloves in waste container 2. GOGGLES OR FACE SHIELD ■ Outside of goggles or face shield is contaminated! ■ To remove, handle by head band or ear pieces ■ Place in designated receptacle for reprocessing or in waste container 3. GOWN ■ Gown front and sleeves are contaminated! ■ Unfasten ties ■ Pull away from neck and shoulders, touching inside of gown only ■ Turn gown inside out ■ Fold or roll into a bundle and discard 4. MASK OR RESPIRATOR ■ Front of mask/respirator is contaminated — DO NOT TOUCH! ■ Grasp bottom, then top ties or elastics and remove ■ Discard in waste container 1. GOWN ■ Fully cover torso from neck to knees, arms to end of wrists, and wrap around the back ■ Fasten in back of neck and waist 2. MASK OR RESPIRATOR ■ Secure ties or elastic bands at middle of head and neck ■ Fit flexible band to nose bridge ■ Fit snug to face and below chin ■ Fit-check respirator 3. GOGGLES OR FACE SHIELD ■ Place over face and eyes and adjust to fit 4. GLOVES ■ Extend to cover wrist of isolation gown 1. BATA ■ Cubra con la bata todo el torso desde el cuello hasta las rodillas, los brazos hasta la muñeca y dóblela alrededor de la espalda ■ Átesela por detrás a la altura del cuello y la cintura 2. MÁSCARA O RESPIRADOR ■ Asegúrese los cordones o la banda elástica en la mitad de la cabeza y en el cuello ■ Ajústese la banda flexible en el puente de la nariz ■ Acomódesela en la cara y por debajo del mentón ■ Verifique el ajuste del respirador 3. GAFAS PROTECTORAS O CARETAS ■ Colóquesela sobre la cara y los ojos y ajústela 4. GUANTES ■ Extienda los guantes para que cubran la parte del puño en la bata de aislamiento Except for respirator, remove PPE at doorway or in anteroom. Remove respirator after leaving patient room and closing door. Con la excepción del respirador, quítese el PPE en la entrada de la puerta o en la antesala. Quítese el respirador después de salir de la habitación del paciente y de cerrar la puerta. SEQUENCE FOR REMOVING PERSONAL PROTECTIVE EQUIPMENT (PPE) SECUENCIA PARA QUITARSE EL EQUIPO DE PROTECCIÓN PERSONAL (PPE) PERFORM HAND HYGIENE IMMEDIATELY AFTER REMOVING ALL PPE EFECTÚE LA HIGIENE DE LAS MANOS INMEDIATAMENTE DESPUÉS DE QUITARSE CUALQUIER EQUIPO DE PROTECCIÓN PERSONAL
  • 382. Wearing gloves, gowns, masks, and eye protection can significantly reduce health risks for workers exposed to blood and other potentially infectious materials. The new OSHA standard covering bloodborne disease requires employers to provide appropriate personal protective equipment (PPE) and clothing free of charge to employees. Workers who have direct exposure to blood and other potentially infectious materials on their jobs run the risk of contracting bloodborne infections from hepatitis B virus (HBV), human immunodeficiency virus (HIV) which causes AIDS, and other pathogens. About 8,700 health care workers each year are infected with HBV, and 200 die from the infection. Although the risk of contracting AIDS through occupational exposure is much lower, wearing proper personal protective equipment can greatly reduce potential exposure to all bloodborne infections. SELECTING PPE Personal protective clothing and equipment must be suitable. This means the level of protection must fit the expected exposure. For example, gloves would be sufficient for a laboratory technician who is drawing blood, whereas a pathologist conducting an autopsy would need considerably more protective clothing. PPE may include gloves, gowns, laboratory coats, face shields or masks, eye protection, pocket masks, and other protective gear. The gear must be readily accessible to employees and available in appropriate sizes. If an employee is expected to have hand contact with blood or other potentially infectious materials or contaminated surfaces, he or she must wear gloves. Single use gloves cannot be washed or decontaminated for reuse. Utility gloves may be decontaminated if they are not compromised. They should be replaced when they show signs of cracking, peeling, tearing, puncturing, or deteriorating. If employees are allergic to standard gloves, the employer must provide hypoallergenic gloves or similar alternatives. Routine gloving is not required for phlebotomy in voluntary blood donation centers, though it is necessary for all other phlebotomies. In any case, gloves must be available in voluntary blood donation centers for employees who want to use them. Workers in voluntary blood donation centers must use gloves (1) when they have cuts, scratches or other breaks in their skin, (2) while they are in training; and (3) when they believe contamination might occur. Employees should wear eye and mouth protection such as goggles and masks, glasses with solid side shields, and masks or chin-length face shields when splashes, sprays, splatters, or droplets of potentially infectious materials pose a hazard through the eyes, nose or mouth. More extensive coverings such as gowns, aprons, surgical caps and hoods, and shoe covers or boots are needed when gross contamination is expected. This often occurs, for example, during orthopedic surgery or autopsies. Employers must provide the PPE and ensure that their workers wear it. This means that if a lab coat is considered PPE, it must be supplied by the employer rather than the employee. The employer also must clean or launder clothing and equipment and repair or replace it as necessary. Additional protective measures such as using PPE in animal rooms and decontaminating PPE before laundering are essential in facilities that conduct research on HIV or HBV. EXCEPTION There is one exception to the requirement for protective gear. An employee may choose, temporarily and briefly, under rare and extraordinary circumstances, to forego the equipment. It must be the employee's professional judgment that using the protective equipment would prevent the delivery of health care or public safety services or would pose an increased hazard to the safety of the worker or co-worker. When one of these excepted situations occurs, employers are to investigate and document the circumstances to determine if there are ways to avoid it in the future. For example, if a firefighter's resuscitation device is damaged, perhaps another type of device should be used or the device should be carried in a different manner. Exceptions must be limited--this is not a blanket exemption. DECONTAMINATING AND DISPOSING OF PPE Employees must remove personal protective clothing and equipment before leaving the work area or when the PPE becomes contaminated. If a garment is penetrated, workers must remove it immediately or as soon as feasible. Used protective clothing and equipment must be placed in designated containers for storage, decontamination, or disposal. OTHER PROTECTIVE PRACTICES If an employee's skin or mucous membranes come into contact with blood, he or she is to wash with soap and water and flush eyes with water as soon as feasible. In addition, workers must wash their hands immediately or as soon as feasible after removing protective equipment. If soap and water are not immediately available, employers may provide other handwashing measures such as moist towelettes. Employees still must wash with soap and water as soon as possible. Employees must refrain from eating, drinking, smoking, applying cosmetics or lip balm, and handling contact lenses in areas where they may be exposed to blood or other potentially infectious materials. ___________________________________________________________________________________________________________________________________________ This is one of a series of fact sheets that discusses various requirements of the Occupational Safety and Health Administration's standard covering exposure to bloodborne pathogens. Single copies of fact sheets are available from OSHA Publications, Room N-3101, 200 Constitution Avenue, N. W, Washington DC 20210 and from OSHA regional offices.
  • 383. Keeping work areas in a clean and sanitary condition reduces employees' risk of exposure to bloodborne pathogens. Each year about 8,700 health care workers are infected with hepatitis B virus, and 200 die from contracting hepatitis B through their work. The chance of contracting human immunodeficiency virus (HIV), the bloodborne pathogen which causes AIDS, from occupational exposure is small, yet a good housekeeping program can minimize this risk as well. DECONTAMINATION Every employer whose employees are exposed to blood or other potentially infectious materials must develop a written schedule for cleaning each area where exposures occur. The methods of decontaminating different surfaces must be specified, determined by the type of surface to be cleaned, the soil present and the tasks or procedures that occur in that area. For example, different cleaning and decontamination measures would be used for a surgical operatory and a patient room. Similarly, hard surfaced flooring and carpeting require separate cleaning methods. More extensive efforts will be necessary for gross contamination than for minor spattering. Likewise, such varied tasks as laboratory analyses and normal patient care would require different techniques for clean-up. Employees must decontaminate working surfaces and equipment with an appropriate disinfectant after completing procedures involving exposure to blood. Many laboratory procedures are performed on a continual basis throughout a shift. Except as discussed below, it is not necessary to clean and decontaminate between procedures. However, if the employee leaves the area for a period of time, for a break or lunch, then contaminated work surfaces must be cleaned. Employees also must clean (1) when surfaces become obviously contaminated; (2) after any spill of blood or other potentially infectious materials; and (3) at the end of the work shift if contamination might have occurred. Thus, employees need not decontaminate the work area after each patient care procedure, but only after those that actually result in contamination. If surfaces or equipment are draped with protective coverings such as plastic wrap or aluminum foil, these coverings should be removed or replaced if they become obviously contaminated. Reusable receptacles such as bins, pails and cans that are likely to become contaminated must be inspected and decontaminated on a regular basis. If contamination is visible, workers must clean and decontaminate the item immediately, or as soon as feasible. Should glassware that may be potentially contaminated break, workers need to use mechanical means such as a brush and dustpan or tongs or forceps to pick up the broken glass--never by hand, even when wearing gloves. Before any equipment is serviced or shipped for repairing or cleaning, it must be decontaminated to the extent possible. The equipment must be labeled, indicating which portions are still contaminated. This enables employees and those who service the equipment to take appropriate precautions to prevent exposure. REGULATED WASTE In addition to effective decontamination of work areas, proper handling of regulated waste is essential to prevent unnecessary exposure to blood and other potentially infectious materials. Regulated waste must be handled with great care --i.e., liquid or semi liquid blood and other potentially infectious materials, items caked with these materials, items that would release blood or other potentially infected materials if compressed, pathological or microbiological wastes containing them and contaminated sharps. Containers used to store regulated waste must be closable and suitable to contain the contents and prevent leakage of fluids. Containers designed for sharps also must be puncture resistant. They must be labeled or color- coded to ensure that employees are aware of the potential hazards. Such containers must be closed before removal to prevent the contents from spilling. If the outside of a container becomes contaminated, it must be placed within a second suitable container. Regulated waste must be disposed of in accordance with applicable state and local laws. LAUNDRY Laundry workers must wear gloves and handle contaminated laundry as little as possible, with a minimum of agitation. Contaminated laundry should be bagged or placed in containers at the location where it is used, but not sorted or rinsed there. Laundry must be transported within the establishment or to outside laundries in labeled or red color-coded bags. If the facility uses Universal Precautions for handling all soiled laundry, then alternate labeling or color coding that can be recognized by the employees may be used. If laundry is wet and it might soak through laundry bags, then workers must use bags that prevent leakage to transport it. RESEARCH FACILITIES More stringent decontamination requirements apply to research laboratories and production facilities that work with concentrated strains of HIV and HBV. ________________________________________________________________________________________________________________________ This is one of a series of fact sheets that discusses various requirements of the Occupational Safety and Health Adninistration's standard covering exposure to bloodborne pathogens. Single copies of fact sheets are available from OSHA Publications, Room N-3101, 20O Constitution Avenue,N.W., Washington, DC 20210 and
  • 384. Engineering Controls  Engineering controls include such safety controls as sharps disposal containers, self-sheathing needles, safer medical devices, such as sharps with engineered sharps injury protections and needleless systems that isolate or remove the bloodborne pathogens hazard from the workplace. Engineering controls are used to maintain a safe environment for employees and individuals who the facility serves.  Proper labeling and signage for potential biohazards  The Bloodborne Pathogens Standard clearly states the requirements for labeling. They are as follows:  Labels Warning labels shall be affixed to containers of regulated waste, refrigerators and freezers containing blood or other potentially infectious material; and other containers used to store, transport or ship blood or other potentially infectious materials. These labels shall be fluorescent orange or orange-red or predominantly so, with lettering and symbols in a contrasting color.  Labels shall be affixed as close as feasible to the container by string, wire, adhesive, or other method that prevents their loss or unintentional removal.  The safety procedures that have been discussed in this section typically fall into a hierarchy of controls. Following the hierarchy normally leads to the implementation of inherently safer systems, ones where the risk of illness or injury has been substantially reduced. Below is one example of this hierarchy to keep you and those you work with safe. 161
  • 385. A Hierarchy of Controls 162
  • 386.  Treating all human blood and other PIMs as if they are contaminated  When handling any bodily fluids or other materials that you are unsure whether they are contaminated with blood or other infectious materials, always treat and handle them as if they are contaminated. This includes any of the precautions noted in this section as deemed appropriate. 163
  • 387. Proper Disposal of Contaminated or Potentially Contaminated Materials  Worksites are to be maintained in a clean and sanitary condition. Schedules for cleaning and method of decontamination are to be based on the location within the facility, type of surface to be cleaned, type of soil present, and tasks or procedures being performed in the area. All equipment and environmental and working surfaces need to be cleaned and decontaminated after contact with blood or other potentially infectious materials.  Contaminated work surfaces are to be decontaminated with an appropriate disinfectant after completion of procedures, immediately or as soon as feasible when surfaces are overtly contaminated or after any spill of blood or other potentially infectious materials, and at the end of the work shift if the surface may have become contaminated since the last cleaning.  Protective coverings, such as plastic wrap, aluminum foil, or imperviously-backed absorbent paper used to cover equipment and environmental surfaces, are to be removed and replaced as soon as possible when they become overtly contaminated or at the end of the work shift if they may have become contaminated during the shift. 164
  • 388.  All bins, pails, cans, and similar receptacles intended for reuse which have a reasonable likelihood for becoming contaminated with blood or other potentially infectious materials shall be inspected and decontaminated on a regularly scheduled basis and cleaned and decontaminated immediately or as soon as feasible upon visible contamination.  Broken glassware which may be contaminated is not to be picked up directly with the hands. It is to be cleaned up using mechanical means, such as a brush and dust pan, tongs, or forceps.  Reusable sharps that are contaminated with blood or other potentially infectious materials shall not be stored or processed in a manner that requires employees to reach by hand into the containers where these sharps have been placed. See the sharps section of this course for more information on handling sharps. 165
  • 389.  Regulated Waste Reusable containers shall not be opened, emptied, or cleaned manually or in any other manner which would expose employees to the risk of injury.  Regulated waste shall be placed in containers which are closable; constructed to contain all contents and prevent leakage of fluids during handling, storage, transport or shipping; labeled or color-coded in accordance with the bloodborne pathogens standard; and closed prior to removal to prevent spillage or protrusion of contents during handling, storage, transport, or shipping.  If outside contamination of the regulated waste container occurs, it shall be placed in a second container. The second container is to be closable; constructed to contain all contents and prevent leakage of fluids during handling, storage, transport or shipping; labeled or color-coded in accordance with the bloodborne pathogens standard; and closed prior to removal to prevent spillage or protrusion of contents during handling, storage, transport, or shipping.  Disposal of all regulated waste shall be in accordance with applicable regulations of the United States, States and Territories, and political subdivisions of States and Territories. 166
  • 390.  Laundry  Contaminated laundry is to be handled as little as possible with a minimum of agitation.  Contaminated laundry is to be bagged or containerized at the location where it was used and is not to be sorted or rinsed in the location of use. Contaminated laundry is to be placed and transported in bags or containers labeled or color-coded in accordance with the Bloodborne Pathogens Standard. When a facility utilizes Universal/Standard Precautions in the handling of all soiled laundry, alternative labeling or color- coding is sufficient if it permits all employees to recognize the containers as requiring compliance with these precautions.  Whenever contaminated laundry is wet and presents a reasonable likelihood of soak-through of or leakage from the bag or container, the laundry is to be placed and transported in bags or containers which prevent soak-through and/or leakage of fluids to the exterior. The employer is to ensure that employees who have contact with contaminated laundry wear protective gloves and other appropriate personal protective equipment. When a facility ships contaminated laundry off-site to a second facility which does not utilize Universal Precautions in the handling of all laundry, the facility generating the contaminated laundry must place such laundry in bags or containers which are labeled or color-coded in accordance with the Bloodborne Pathogens Standard. 167
  • 391.  Decontamination and Sterilization All surfaces, tools, equipment and other objects that come in contact with blood or potentially infectious materials must be decontaminated and sterilized as soon as possible. Equipment and tools must be cleaned and decontaminated before servicing or being put back to use. Decontamination means the use of physical or chemical products to remove, inactivate, or destroy bloodborne pathogens on a surface or item to the point where they are no longer capable of transmitting infectious particles and the surface or item is rendered safe for handling, use, or disposal. Use cleaning products or solutions approved by your employer and meet EPA (Environmental Protection Agency) requirements for this use. Under 29 CFR 1910.1030, the Occupational Exposure to Bloodborne Pathogens standard, the Occupational Safety and Health Administration (OSHA) requires that contaminated items and surfaces be decontaminated with an appropriate disinfectant. EPA-registered tuberculocidal disinfectants and solutions of 5.25 sodium hypochlorite (household bleach) diluted between 1:10 and 1:100 with water are considered appropriate for this purpose. 168
  • 392.  Current listings of the EPA’s registered sterilizer, antimicrobial, tuberculocide, products effective against certain blood borne/body fluid pathogens, Mycobacteria tuberculosis (tubercle bacteria), human HIV-1 virus, Hepatitis B, Hepatitis C viruses, as well as products classified as sterilizers can be located at http://www.epa.gov/oppad001/chemregindex.htm. The use of EPA registered products effective against human blood borne pathogens listed on this web site are in compliance with OSHA’s (Occupational Safety and Health Administration) Occupational Exposure to blood borne Pathogens (29 CFR 1910).  Chemical germicides that are EPA-approved for use as "hospital disinfectants" and that are tuberculocidal/virucidal when used at recommended dilutions and contact times can be used to decontaminate spills of blood or other body fluids that contain blood. 169
  • 393.  If you are cleaning up a spill of blood, you can carefully cover the spill with paper towels or rags, then gently pour the approved solution of bleach over the towels or rags, and leave it for the amount of time recommended by the product manufacturer. This will help ensure that any bloodborne pathogens are killed before you actually begin cleaning or wiping the material up. By covering the spill with paper towels or rags, you decrease the chances of causing a splash when you pour the bleach on it. If you are decontaminating equipment or other objects you should leave the disinfectant in place for the amount of time recommended by the product manufacturer before continuing the cleaning process. Any materials you use to clean up a spill of blood or potentially infectious materials such as mops, sponges, re-usable gloves, buckets, pails, etc. also need to be decontaminated with approved cleaners. 170
  • 394. OSHA's new bloodborne pathogens standard includes provisions for medical follow-up for workers who have an exposure incident. The most obvious exposure incident is a needlestick. But any specific eye, mouth, other mucous membrane, non-intact skin, or parenteral contact with blood or other potentially infectious materials is considered an exposure incident and should be reported to the employer. Exposure incidents can lead to infection from hepatitis B virus (HBV) or human immunodeficiency virus (HIV) which causes AIDS. Although few cases of AIDS are directly traceable to workplace exposure, every year about 8,700 health care workers contract hepatitis B from occupational exposures. Approximately 200 will die from this bloodborne infection. Some will become carriers, passing the infection on to others. WHY REPORT? Reporting an exposure incident right away permits immediate medical follow-up. Early action is crucial. Immediate intervention can forestall the development of hepatitis B or enable the affected worker to track potential HIV infection. Prompt reporting also can help the worker avoid spreading bloodborne infection to others. Further, it enables the employer to evaluate the circumstances surrounding the exposure incident to try to find ways to prevent such a situation from occurring again. Reporting is also important because part of the follow-up includes testing the blood of the source individual to determine HBV and HIV infectivity if this is unknown and if permission for testing can be obtained. The exposed employee must be informed of the results of these tests. Employers must tell the employee what to do if an exposure incident occurs. MEDICAL EVALUATION AND FOLLOW-UP Employers must provide free medical evaluation and treatment to employees who experience an exposure incident. They are to refer exposed employees to a licensed health care provider who will counsel the individual about what happened and how to prevent fiuther spread of any potential infection. He or she will prescribe appropriate treatment in line with current U.S. Public Health Service recommendations. The licensed health care provider also will evaluate any reported illness to determine if the symptoms may be related to HIV or HBV development. The first step is to test the blood of the exposed employee. Any employee who wants to participate in the medical evaluation program must agree to have blood drawn. However, the employee has the option to give the blood sample but refuse permission for HIV testing at that time. The employer must maintain the employee's blood sample for 90 days in case the employee changes his or her mind about testing--should symptoms develop that might relate to HIV or HBV infection. The health care provider will counsel the employee based on the test results. If the source individual was HBV positive or in a high risk category, the exposed employee may be given hepatitis B immune globulin and vaccination, as necessary. If there is no information on the source individual or the test is negative, and the employee has not been vaccinated or does not have immunity based on his or her test, he or she may receive the vaccine. Further, the health care provider will discuss any other findings from the tests. The standard requires that the employer make the hepatitis B vaccine available, at no cost to the employee, to all employees who have occupational exposure to blood and other potentially infectious materials. This requirement is in addition to post exposure testing and treatment responsibilities. WRITTEN OPINION In addition to counseling the employee, the health care provider will provide a written report to the employer. This report simply identifies whether hepatitis B vaccination was recommended for the exposed employee and whether or not the employee received vaccination. The health care provider also must note that the employee has been informed of the results of the evaluation and told of any medical conditions resulting from exposure to blood which require further evaluation or treatment. Any added findings must be kept confidential. CONFIDENTIALITY Medical records must remain confidential. They are not available to the employer. The employee must give specific written consent for anyone to see the records. Records must be maintained for the duration of employment plus 30 years in accordance with OSHA's standard on access to employee exposure and medical records.
  • 395. What do I do if I am exposed to blood or other a potentially infectious material? Exposure means that a mucous membrane, broken skin (from cuts, scrapes, abrasions, acne, etc.) or a skin puncture has come into contact with blood or a potentially infectious material. If you have experienced an exposure, clean the area as described below or per your employer’s policies, report the incident and get medical care.  First Aid  If you or someone you work with is splashed or in other ways contacted with blood or other PIMs, the first step is to thoroughly wash the exposed skin with soap and running water. If the contact is with a mucous membrane, immediately flush the involved mucous membrane with water for at least 15 minutes.  As soon as this is completed, report the incident to your supervisor or other appropriate staff at your place of employment. Follow reporting procedures established by your employer.  Contact your doctor or other appropriate medical professional as soon as possible for follow-up treatment. 172
  • 396.  Reporting Exposure Incidents  Reporting exposure incidents encourages immediate medical attention and follow-up. It can help the affected individual as well as assuring that if the person becomes infected from the incident, they do not infect other persons. It also helps assure the affected person receives necessary, ongoing medical care.  Reporting incidents also helps the employer evaluate why the incident occurred and work toward preventing future exposure incidents.  Your employer should have in place procedures for reporting exposure incidents. 173
  • 397. Summary  This course has provided you with a basic understanding of initial required topics for providing Medicaid Waiver services. The course has covered:  An Overview of Developmental Disability  Best Practices for Serving Individuals with Developmental Disability  Rights of Individuals with Developmental Disability  Incidents Adversely Affecting Health and Safety (Rule 5123:2-17-02)  Universal Precautions for Infection Control  Overview of Basic Principles and Requirements of Providing Home and Community-Based Waiver Services 175
  • 398.  This competency-based training requires you to take and pass a multiple- choice quiz —100% accuracy is required. You will be allowed multiple attempts to take and pass the quiz. The quiz contains questions from all resources provided in the course including the course narrative and all required reading resources.  If you are ready, take the quiz. 176
  • 399. QUIZ Eight Hour Required Provider Training for Medicaid Waiver Services (5123:2-2-01) NAME: _____________________________________ Contact #: _________________________________ MAILING ADDRESS: _________________________________________________________________________ __________________________________________________________________________________________ Instructions: circle the correct answer. You need 80% to pass. 1. Which of the following are developmental disabilities? a. Autism b. Mental Retardation c. Cerebral Palsy d. Fetal Alcoholism Syndrome e. None of the Above f. All of the Above 2. Which of the following is the best definition for “developmental disabilities”? a. Severe chronic disabilities that are cognitive only. The disabilities appear before 22 years and are likely to be life-long. b. Severe chronic disabilities that can be cognitive, physical or both. The disabilities appear before 22 years and are likely to be life-long. c. Severe chronic disabilities that can be cognitive, physical or both. The disabilities appear at birth and are likely to be life-long. d. None of the above 3. “Mental Retardation” and “Developmental Disabilities” are the same thing? a. True b. False 4. Fetal Alcoholism Syndrome is preventable? a. True b. False 5. With the proper treatment, cerebral palsy can be cured? a. True b. False 6. Cognitive disabilities relate to disabilities that relate to: a. Thought processes and the ability to comprehend b. Physical impairments c. Birth defects d. All of the above e. None of the above 7. Down’s Syndrome is a. Caused by a mother that consumed alcohol during pregnancy b. Caused by a chromosomal abnormality c. Caused by the pregnancy in an older parent d. None of the above e. All of the above 8. “Intellectual Disability” and “Mental Retardation” are the same thing? a. True b. False
  • 400. 9. All people with developmentally disabilities should be treated with dignity and respect? a. True b. False 10. Which of the following is considered disrespectful & inappropriate language? a. Johnny is confined to a wheelchair b. Mary is retarded c. Sue is a tube feeder d. Josie can’t do anything right e. All of the above f. None of the above 11. The main concept of person-centered planning is to develop a plan to meet personal needs, desires, dreams and choices of an individual, then find or create the services, supports and budget to make that plan happen. a. True b. False 12. Self-determination is the belief that people can and should be in charge of their own lives to whatever degree that person is capable. a. True b. False 13. The four main principles of self-determination are: a. Work, home, independence, authority b. Dreams, desires, needs, supports c. Control, financial stability, supports, home d. Freedom, authority, support, responsibility e. All of the above f. None of the above 14. Supported employment should achieve which of the following: a. Opportunity to earn equitable wages and other employment-related benefits b. Development of new skills c. Increased community participation d. Enhanced self-esteem e. All of the above f. None of the above 15. Supported Living is a way to assist individuals with developmental disabilities to live as independently as possible in their own homes in their own communities, with needed supports. a. True b. False 16. An ICFMR facility typically serves only people with severe physical disabilities. a. True b. False 17. Why is the concept of ‘single point of contact’ an important requirement? a. It assures that one coordinated plan is developed for each person b. It assures the plan is carried out in accordance with all applicable rules and best practices. c. It assures that quality assurance reviews are carried out d. It assures the results of quality assurance reviews are incorporated into the individual’s plans and services e. All of the above f. None of the above
  • 401. 18. County boards are required to provide service and support administration to any individual, regardless of age, who is applying for or enrolled in an HCBS waiver. a. True b. False 19. Who is responsible for developing and revising a person’s individual service plan? a. Team leader b. Individual c. Service and Support Coordinator d. Provider e. Family member 20. Which of the following statement(s) is/are true? a. The ISP is a legal document that provides a roadmap of the person’s life plan b. Individuals are relying on the ISP to maintain their health and safety c. Providers are responsible for delivering services as outlined in the ISP d. Providers are held accountable for the proper delivery of services as outlined in the plan e. All of the above f. None of the above 21. Section 5123.62 of the ORC Rights of Persons with Mental Retardation or Developmental Disabilities is the statute that addresses the rights of a person with a developmental disability. a. True b. False 22. The law passed by the United Nations in 2007 says people with disabilities have the same rights as everyone else. Which of the following are guaranteed rights: a. Equality – the right to be treated as equal citizens b. Safety – the right to be free from violence and abuse c. Home and family – the right to be part of a family and to start one d. Privacy – no matter where the individual lives e. All of the above f. None of the above 23. The law passed by the United Nations in 2007 says people with disabilities have the same rights as everyone else. Which of the following are guaranteed rights: a. Independent living – the right to live in the community b. Work – the right to work and earn a decent living c. Education – the right to an equal education along with everyone else d. Health – the right to the best possible healthcare e. All of the above f. None of the Above 24. The law passed by the United Nations in 2007 says people with disabilities have the same rights as everyone else. Which of the following are guaranteed rights: a. Access – the right to get to and use public spaces and public services b. Political life – the right to vote and have a day in laws and policies c. Attitudes of others – the right to be treated as any other person d. Sports and leisure e. All of the above f. None of the above
  • 402. 25. Rights are addressed in both state and federal law. a. True b. False 26. Individuals with disabilities must have a guardian unless the courts deem the person capable of being their own guardian: a. True b. False 27. Every provider of services to persons with mental retardation or a developmental disability must establish policies and programs to ensure that all staff members are familiar with the rights enumerated in section 5123.62 of the Revised Code (Rights of Persons with MRDD) and observe those rights in their contacts with persons receiving services. a. True b. False 28. How long must an individual with disabilities be missing to be considered an MUI? a. 4 hours b. 8 hours c. 12 hours d. 24 hours 29. County board staff and each independent provider must receive training on the requirements of the MUI rule at the time of initial employment and annually thereafter. a. True b. False 30. All incidents of possible abuse must be reported to local law enforcement and to the county board or to the public children’s service agency, when applicable, no matter where the incident occurred. a. True b. False 31. Major unusual incident means the alleged, suspected, or actual occurrence of an incident when there is reason to believe the health or safety of an individual may be adversely affected or an individual may be placed at a reasonable risk of harm, if the individual is receiving services through the DD service delivery system or will be receiving such services as a result of the incident. a. True b. False 32. What is the purpose of a Medicaid waiver? a. To avoid following the rules of Medicaid b. To assure health care services for adults with disabilities c. To keep people living in their own homes rather than moving to more expensive options d. To be able to exceed normal costs of doing business 33. Hand washing is not an effective way to prevent illness. a. True b. False 34. How is it determined what services an individual needs and will receive under the waiver? a. The service and support administrator decides b. Service needs are determined through the individual planning process c. Medicaid chooses the appropriate services for the individual d. Appropriate services will be determined through administration of the OEDI
  • 403. 35. Appropriate services will be determined through administration of the OEDI. a. Assess what services and supports b. Determine funding ranges and payment amounts that will be available to an individual for the IO waiver c. Create a psychological profile to compare applicants to one another to rank need d. All of the above e. None of the above 36. The AAI (Acuity Assessment Instrument) is used: a. As the basis for the ISP and goal setting b. To determine how perceptive a person is in comparison to others in the group c. To determine an individual’s desired outcomes d. To determine groupings and staff intensity ratios 37. Each individual who is eligible for and who wants to receive adult day services is assigned a budget limitation. This is the funding amount that is available to a person to purchase adult day Medicaid waiver services. a. True b. False 38. What is a bloodborne pathogen? a. An organism in human blood that can cause disease. b. A virus that is born in the blood but never leaves. c. The path that blood takes in the body. d. All of the above e. None of the above 39. How are bloodborne pathogens spread? a. Contact with contaminated blood to an open wound in the skin. b. Skin punctures by a contaminated object. c. Getting splashed in the eye with contaminated blood. d. Sexual contact e. All of the above f. None of the above 40. Which of the following can be prevented through immunizations? a. Hepatitis A b. Hepatitis B c. Hepatitis C d. HIV 41. If you are wearing gloves when touching blood, you do not need to wash your hands when you remove your gloves. a. True b. False 42. Proper hand washing is not important in regard to bloodborne pathogens. a. True b. False 43. You should treat all human blood as if it is contaminated. a. True b. False
  • 404. 44. What is the most commonly used PPE in the healthcare setting? a. Gowns b. Face shields c. Gloves d. Hairnets 45. Hand washing is not an effective way to prevent illness. a. True b. False Signature: _______________________________________________________________ Please mail your signed test to: Human Resources, House of New Hope 8135 Mt. Vernon Rd., St. Louisville, OH 43071 Or Fax: 888-810-6162 toll free