Autism Spectrum Disorders are described by Foote (2004) as a neurological disorder which affects functioning of the brain. The severity of the disorder varies from one child to another (p. 104). Thus it can be described as a disorder. The autistic child may be severely impaired to the point where they are unable to understand basic speech, unable to speak or take care of basic needs such as bathing and clothing themselves. These children are considered to be at the low end of the spectrum or are “low-functioning”. Also, if the child has an IQ of 70 or less, they may fall within the spectrum. Other children may function on the other end of the spectrum “high-functioning”. These children are typically diagnosed with what is known as “Aspergers”. The Aspergers child is typically very intelligent, but they lack social skills and the ability to work with others. The increasing prevalence of the disorder (1:88 as of 2012) has placed a strain on available services and resources. The services affected are primarily those of social, psychological, educational, and family related services. There are other factors, which have also affected the availability of services, such as funding cuts at the local and state levels. The reduction in funding placing a large financial burden on the shoulders of the parents or guardians. Sadly enough, intervention methods are unable to be emplaced and many of the children are destined to live in an institution upon reaching the age of 21 as a result of the reduction in available services. The existence of what is commonly known as “waiver” does assist in alleviating these burdens. Waiver is designed to assist parents in obtaining limited services for the child, but oftentimes the services are still insufficient to provide for all needs of the child.
Services such as the following have been reduced in part by funding issues within the state of Pennsylvania:Home Based Behavior Intervention PlansCommunity Based InstructionEvaluation of Placement/Transition PlanningHome based behavior intervention plans are designed to designate goals such as educational and self-care, which the autistic child should achieve within a specific time period. Intervention plans or IEPs are typically reviewed every six months to assess which goals were met versus those which were not. Upon reassessment, goals are adjusted and new goals are set or if no improvement has been noted, goals will typically remain the same. If a child is granted waiver, services such as Therapeutic Staff Support (TSS), Mobile Therapists (MT) and Behavior Specialist Consultant (BSC) may be provided to the family to assist in attaining goals set by the IEP. TSS, MT, and BSC services are provided by an organization known as Youth Advocate Program (YAP) (www.yapinc.org). YAP is the primary service provider within northeast Pennsylvania. The ultimate goal of organizations such as YAP is to set the child on a path of success where they can be self-sufficient dependent upon where the child falls within the spectrum. YAP also assists parents and educators in what is known as “Transition Planning”. As previously indicated, YAP is a key factor in achieving the goal of having a child successfully transfer skills learned which all them to function outside of the home environment. In the event such services are unavailable a strong possibility exists that the child may live their lives inside the walls of an institution.
Non-profitorganizations such as MHMR (Mental Health and Mental Retardation), which was recently renamed Mental Health Developmental Services (MHDS) assist parents in finding resources necessary for the child. The organization does not pay for services rendered to the child, instead they are a resource, which provides assistance in locating essential services. Another non-profit organization known as Easter Seals assists parents in providing services such as day camps and overnight camps for the children. The camps expose the child to numerous outdoor activities such as horseback riding, swimming, etc. Easter Seals also takes the welfare of the parents into consideration as it provides a break from the demanding life of raising an autistic child.
The funding cuts previously mentioned have affected the availability of early detection and intervention services. If a child is diagnosed with the disorder at a young age, there is a chance that early intervention will make significant changes in their ability to function independently as they get older. The question at this point is how can society eliminate the gaps in the availability of social and educational services? The answer to the question is that with assistance of various non-profit entities as listed in the following slide, the gaps may be narrowed or possibly eliminated.
The availability of autismsupport groups is minimal within the counties or Monroe, Pike, and Northampton in northeast Pennsylvania. Support groups may be the only means by which parents can reduce the stressors of having an autistic child. Involvement in a support group can provide the parent with ideas or new methods in which they may teach their child to comprehend “or get through to them”what they are being taught. Getting an autistic child to comprehend what is required or expected of them can be a challenge unto itself.
Areas in which deficiencies exist at the state and local level are summarized as follows:Limited family based servicesLocal school systems are inadequate to support the needsof the autistic communityLack of qualified educatorsLack of speech therapistsLack of parental training programsThe following statement made by Booth et al. (2005) sums up the inefficiencies and how ineffective the programs are: “This review has revealed the embryonic stage of most states’ QM strategies and the lack of definitive models for how best to advise states to proceed”. “How best to advise states to proceed” are the keywords in the statement. How is it possible to lessen the gaps in the availability of services.
Booth, Fralich, and Bowe (2005)discuss how program managers of the various HCBS programs are beginning to realize that continual quality improvement of current disability related programs is essential to ensure availability to all individuals with a disability. Booth et al. (2005) state the following “Few states have fully organized and operational QM strategies. Many states, however, are developing work plans that show how, over time, they plan to fully assess the design and implementation of their waiver programs and to improve overall system performance (p. 3). This statement evidences that issues are in the process of being identified, but the question is, why were they not identified in the past, and how many families have suffered as a result of program unavailability? Issues surrounding the lack of available services can best be solved by integration of each entity (e.g., service providers, groups, and agencies) and the development of a quality management system designed to analyze requirements within the specific geographical area on a continual basis. The entity providing services will depend on the necessity. One issue, which may occur is the realization that individual or groups providing services may be limited on time and resources. As a consultant, a necessity exists that proper guidance is provided to the integrated organization. As a consultant, assistance should not be terminated until the organization can operate independently. Terms of a contract may have been met, but it is the ethical duty of the consultant to continue to assist as required.
Booth et al. (2005) mention that most states, which provide HCBS programs, are beginning to perform retrospective (e.g., an after the fact assessment to make certain that minimum thresholds of acceptable quality are met).The philosophy of performing retrospective analysis of programs currently in place is commonplace in many organizations.Will the structure of the newlyintegrated service providers etc. be sufficient to enhance and provide services essential to the future of individuals within the autistic community? It is essential that a continual dialog be maintained between the consultant and the organization as advice on solving various issues may be necessary. Periodic checks and evaluations must be performed by the consultant to ensure that integration of the entities is and continues to be successful.
Disability Services Quality Management TheoryThomas D. McGheeApril 30, 2013SCHOOL OF ADVANCED STUDIESUNIVERSITY OF PHOENIX
Purpose Statement2Autism is a developmental disorder that appears in the first 3years of life, and affects the brains normal development ofsocial, cognitive, and communication skills. The current ratio ofdiagnosis is 1:88 children per the Community Report from theADDM (2012). Prevalence of the disorder has placed a strain onthe availability of social and psychological services for the autisticchild and their families in northeastern Pennsylvania.Insufficient services are available through state runagencies, which places the burden on non-profitorganizations. Coordination and qualitymanagement of services currently provided bystate and non-profits is an area, which shouldbe explored to enhance availability of services.
AgendaRegional Needs of the Autistic CommunitySupport Services RequirementsPennsylvania Non-Profit OrganizationsArea Support GroupsItem 1Available State Run ServicesItem 2Item 3Item 4Item 53Item 1Item 2Item 3Item 6Desired State Run ServicesServices provided by Pennsylvania Non-ProfitOrganizationsItem 7
Regional Needs of the Autistic Community5• Services• Social• Psychological• Educational• Family• Financial• Assistance with out of pocket expensesassociated with raising the autistic child• Assistance in obtaining waiver
Support Services Requirements6• Home Based Behavior Intervention Plans• Community Based Instruction• Evaluation of Placement/Transition Planning
Available State Run Services7• Available services• Mental Health Developmental Services (MHDS) – designed toassist families in finding means of assistance for children with anIQ off 70 and below• Easter Seals assistance till three years of age if issues exist withthe development of speech and motor skills• Head start for low income families withautistic children with an IQ of 70 or below.Designed for use as a means to provideearly intervention
Desired State Run Services8• Desired services• Necessity of additional early detection and intervention services.Currently available services are minimal.• Elimination of gaps in social and educational services.• Provision to provide availability of developmentalpediatricians required to diagnose the existenceof autism in children• Provision for specialized schools and hiringof additional educators
Pennsylvania Non-Profit Organizations9• Autism Awareness – http://www.theautismsite.com• Autism Speaks – http://www.autismspeaks.org• Autism PDD Parent Group of Philadelphia• My Autism Team – http://www.myautismteam.com/• Pennsylvania Autism Society - http://www.nwpa-asa.org• The Autism Society of America (ASA) -http://www.autism-society.org/
Area Support Groups10• Autism support groups• Pocono Autism Society, Inc. - http://poconoautism.org/• Pocono Equestrian Center - http://www.poconoequestrian.org/• Autism Society of America (ASA) chapter• Asperger support groups• No Aspergers support groups are available withinthe tri-county area
Determination of Deficiencies11• Limited family based services• Local school systems are inadequate to support the needsof the autistic community• Lack of qualified educators• Lack of speech therapists• Lack of parental training programs
Management Philosophy12• Quality Management• Preferred management method for coordination and oversight ofdisability related services• Reduction of gaps through integration of service providers,groups, and agencies• State provision for specialized schools and hiring of additionaleducators• MHDS assistance and guidance• Implementation of family training programs• Combined services• Professional involvement with area support groups
Continued Dialog13• Open line of communication between management andconsultant upon implementation of combined servicesFollow-up• Evaluate effectiveness of implemented changes
14ConclusionOdom, Cox, and Brock (2013) indicate that disability relatedprograms would benefit greatly if principles of TQM wereincorporated into management techniques currently in practice.Quality management of disability services is critical to ensure thatthe future of each child and young adult within the spectrum issecured.
References15Booth, M., Fralich, J., & Bowe, T. (2005). Home and Community Based Services:Quality management roles and responsibilities. Portland, ME: Edmund S.Muskie School of Public Service.Community Report From the Autism and DevelopmentalDisabilities Monitoring (ADDM) Network. (2012) (Vol. 61, pp. 1-10).Atlanta, GA: Centers for Disease Control and Prevention (CDC). Prevalenceof Autism Spectrum Disorders–Autism and Developmental DisabilitiesMonitoring Network.Fixsen, D., Blase, K., Metz, A., & Dyke, M. V. (2013). Statewide Implementationof Evidence-Based Programs. Exceptional Children, 79(2), 213-230.Foote, N. L. (2004). Challenges of Testing Autistic Patients. American Journal ofElectroneurodiagnostic Technology, 44(2), 103-107.
References continued16Odom, S. L., Cox, A. W., & Brock, M. E. (2013). Implementation Science,Professional Development, and Autism Spectrum Disorders. ExceptionalChildren, 79(2), 233-251.Pascale, C., & Marla, C. H. (2003). Balanced work system and participation inquality management: applications in the community. AI & Society, 17(2),97-113.