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  • 1. People with autism require specialized services and supports that are tailored to their unique needs 1. Frequently, when staff receive training and alter their approaches to meeting the needs of persons with autism, they are very successful in providing high quality services 2. Many service providers struggle to serve individuals with autism across the age range 2. Their lack of knowledge often results in much higher cost care and services options for person’s with autism and an inability to provide services altogether

State of the State in Autism: State of the State in Autism: Presentation Transcript

  • State of the State in Autism: Analysis of the Autism Numbers and the ‘Autism Problem’ from a National and Virginia Perspective Carol Schall, PhD Executive Director, Virginia Autism Resource Center [email_address]
  • Helpful Web Sites on Autism
    • Learn the Signs - Act Early:
      • http:// www.cdc.gov/ncbddd/autism/actearly/default.htm
    • First Words Project:
      • http:// firstwords.fsu.edu
    • National Institutes of Health Article on Autism:
      • http:// www.nimh.nih.gov/publicat/autism.cfm
    • Autism Education Network:
      • www. autism education.net
  • Helpful Web Sites on Autism
    • The Organization for Autism Research
      • http://www.researchautism.org/
    • Autism Speaks
      • http://www.autismspeaks.org/
    • Cure Autism Now
      • http://www.cureautismnow.org/
    • Community Report from the Autism and Developmental Disabilities Network
      • www.cdc.gov/mmwr/mmwr_ss
  • What is autism?
    • Lifelong neurological disability that can profoundly impact how the individual interacts with the world.
    • Impacts how the person communicates, interacts with others and processes sensory information.
  • Autism Asperger’s Syndrome Pervasive Developmental Disorder-NOS Pervasive Developmental Disorders- The Autism Spectrum Childhood Disintegrative Disorder Rett’s
  • Why should we diagnose early?
    • Of 1,000 children in your locality between the ages of birth to 3, how many should you expect to have autism?
      • 4 to 7
    • The symptoms of autism are present from the first year of life.
    • What is the average age for diagnosis in the U.S.?
      • 3 1/2 years
    • Average age of diagnosis in Virginia?
      • 6 to 7 years old
    • When does intervention for children with autism have the greatest impact?
      • When it begins before 3 1/2 years
  • Incidence
    • From 1990 to 2004, the incidence of autism has increased by 989%
    • This Data does not include all forms of autism, only those with primary diagnosis
    • We can now diagnose Autism Spectrum Disorders confidently at age 2 and are working hard on the characteristics of autism between age 1 and 2.
  • It is plausible that children with ASD could represent 1% of school age children
  • Incidence
    • From 1990 to 2004, the incidence of autism has increased by 989%
    • This Data does not include all forms of autism, only those with primary diagnosis
    • We can now diagnose Autism Spectrum Disorders confidently at age 2 and are working hard on the characteristics of autism between age 1 and 2.
  • VA Department of Education Incidence Data
  • What is driving the increase?
    • Better Diagnosis
      • More Awareness
    • Widening the Spectrum
      • Added Asperger’s Syndrome in 1994
    • Diagnostic Substitution
      • People are now dx’ed with ASD were previously dx’ed with other disabilities
    • More Autism?
  • Number of Students by Age for 1997 to 2004 (Data for Birth to 2 not available before 2002)
  • Number of Students by Age for 1997 to 2004 (Data for Birth to 2 not available before 2002) 170 325
  • Number of Students by Age for 1997 and 2004 (Data for Birth to 2 not available before 2002)
  • Autism in Relationship to all of Special Education -- Total in Special Education = 175,577 (2004, VADOE) AUTISM, 2.7%
  • What is driving the increase?
    • Better Diagnosis
      • More Awareness
    • Widening the Spectrum
      • Added Asperger’s Syndrome in 1994
    • Diagnostic Substitution
      • People are now dx’ed with ASD were previously dx’ed with other disabilities
    • More Autism?
  • Challenges of Early Diagnosis of Autism in Virginia
    • In 1997, there were 11, 3 year olds with autism counted in child count
    • In 2004, there were 416, 10 year olds with autism counted in child count
    • In 1997, we missed 405, 3 year old children who would later be diagnosed and eligible for services as individuals with autism.
    • That represents 97% of the children who were later eligible under the category, autism.
  • Just How Many Children with ASD should we expect?
    • Number of school children in Virginia, 2002 - 1,445,585
    • Incidence of autism - 4 to 7 in 1,000
    • 5,782 to 10,119
    • Actual number of individuals with Autism in 2002 - 3350 (primary dx only!)
    • 43% to 63% under diagnosed in Virginia
  • Challenges of Autism in Virginia
    • Autism is emerging as the 5th disability when considering those who have cognitive, learning, behavioral, or sensory motor disabilities
    • The state workforce of service providers receive scant (if any) training in the unique profile and support needs of persons with Autism
  • Estimate of the Current Level of Services by Ages School Age Early Childhood Adults
  • The State of the State
    • Challenges:
    • No statewide system exists
    • Lack of a central state (public sector) “home” for autism, i.e., DD agency
    • Lack therefore of central responsibility and coordination of policy and services across the lifespan for a person with autism
    • Complicated further by the Virginia “model” for strong local control
  • State of the State
    • Opportunities:
    • Strong interest, energy, need and expertise exists throughout the state
    • Several examples of quality programming exist in the state
    • A number of coordinating initiatives already underway in the state
    • Autism is “on the radar screen”, locally, statewide and nationally like never before
  • System Building Approaches
    • Micro system needs :
    • Person with autism
    • Family
    • Mezzo system needs :
    • Service providers
    • Both individuals and organizations
    • Macro system needs :
    • State systems
    • Academic, service and government
  • In General
    • Micro :
    • Assess, evaluate individuals with autism
    • Guide, support families
    • Mezzo :
    • Training for schools, other agencies, etc.
    • Sponsored workshops for a variety of audiences
    • Macro :
    • State agency alliances
  • In Virginia -- Micro Services
    • Early Childhood
      • Local Coordinating Councils
      • Established Medical Assessments
      • School Age
      • Local School Districts
      • VARC, CAS
    • Adult
      • DMHMRSAS and DMAS
      • VARC, CAS
  • In Virginia -- Mezzo Services
    • Early Childhood
      • Part - C Office
      • VARC, CAS
    • School Age
      • DOE
      • T-TAC’s, VARC, CAS
    • Adults
      • DMHMRSAS
      • VARC, CAS
  • In Virginia -- Macro Services
    • Early Childhood
      • Part-C Autism Initiative
      • VARC, CAS
      • The Virginia Autism Council
    • School Age
      • DOE, SSEAC,
      • T-TAC Autism Priority Project
      • VARC, CAS
      • The Virginia Autism Council
    • Adult
      • DMHMRSAS, DMAS
      • VARC, CAS
      • The Virginia Autism Council
  • The Virginia Autism Council
    • The Virginia Autism Council is a state-supported council of autism experts seeking to define needed skill competencies and to advance higher education, training and educational opportunities for personnel and caregivers supporting individuals with autism.   This website is Virginia's clearinghouse on best practices and research-based education and training opportunities to advance personnel development and knowledge regarding autism in Virginia.
  • The Virginia Autism Council Mission
    • The Virginia Autism Council envisions individuals with autism fully participating in every aspect of society.   The Virginia Autism Council's mission is to provide leadership and coordination for state agencies and service providers and to increase knowledge and understanding of autism in the wider community in order to maximize outcomes for people with autism.  
  • The Virginia Autism Council
    • The Virginia Autism Council exists to:
    • Gather, synthesize and disseminate knowledge on behalf of citizens with autism;
    • Develop best practice tools that serve as catalysts and that promote exemplary training and services;
    • Promote the interests of citizens with autism and those who are affected by autism;
    • Identify and address gaps in the system structure related to autism.
  • In This Context . . . The Virginia Autism Council and the Skill Competencies
  • The Web Site for the Full Document http://www.autismtrainingva.org/documents/Final_Competencies.doc
  • How it was developed
    • A highly experienced statewide committee came to agreement on best practice and competence
    • We sent this document out to statewide and national experts
    • We also submitted this to statewide consultant committees to review and provide feedback
    • We then revised the document based on the feedback we received
  • People who participated in the development of the competencies
    • Carol Schall, Linda Oggel, Sue Palko, Janet Hill, Cherie Stierer, Patty Hawkins, Brenda Fogus, Leslie Daniel, Rosemarie McGuinnes, Elin Doval, Karen Durst, Sally Chappel, John Richmond, and Mark Diorio
  • Statewide and National Experts who provided feedback
    • Pasquale J. Accardo, M.D, Virginia Commonwealth University
    • Barbara Becker-Cottrill, Ed.D., Marshall University
    • Glen Dunlap, Ph.D, University of South Florida
    • Kathleen Gould, Ph.D., Illinois Autism/PDD Training and Technical Assistance Project
    • Fred Orelove, Ph.D. Virginia Commonwealth University
    • Cathy Pratt, Ph.D., Indiana University
    • Barry M. Prizant, Ph.D. CCC-SLP, Childhood Communication Services
    • Johannes Rojahn, Ph.D., George Mason University
    • Brenda C. Seal, Ph.D., James Madison University
    • Brenda Smith-Myles, Ph.D., University of Kansas
    • Martha Snell, Ph.D., University of Virginia
  • Who was on the statewide committees?
    • Bradford Hulcher, Parent of a person with ASD; Jo Read, Ph.D., Director of Special Education; Jessica Philips, BCBA; Rachel Reynolds, SLP; Kate Besley, Public School Counselor; Amy B. Petin, Special Education Teacher; Jody Davieds, BCBA; Staci Carr, Executive Director, Private Agency; Amy McCarty, Instructional Assistant; John Rosch, Transition Specialist; Andrew Yusi; Sheri Leddy, Special Education Coordinator; Judy Ericksen, Occupational Therapist; Roger Younker, Staff Development Specialist, Mental Retardation Services; Tracey Bosanoe, Special Education Teacher; Cheryl Mendis, Autism Teacher; Nancy T. Harlan, Speech-Language Pathologist; MinnieTom H. Myer, Parent of Person with ASD; Bobbi, Bartley, Occupational Therapist; Marcia Kennedy, Behavioral Consultant; Amy Schwiteboer, Transition Representative; Greg Jacob, Principal; Karen Jackson, Parent of a person with ASD; Kay Oliver, Parent of a person with ASD; Ron Bowers, Autism Teacher; Jessica Herd, Mental Retardation Case Manager; Terry Escobar, BCBA; Betty Bradshaw, General Education Teacher; Carol Wickersham, Special Education Supervisor; Sara Ingram, Program Director at Developmental Disabilities Center; Teresa Lyons, Disability Services Coordinator; Shirl Light, Parent of a person with ASD; Barbara Shult, Special Education Region Coordinator; Elisabeth T. Bivens, Disability Services Coordinator; Julia Artrip, Parent of a person with ASD; and Elizabeth Brammer, Director of Early Childhood Intervention Services.
  • Who should have these competencies?
    • Paraprofessionals : refers to anyone directly supporting infants, children, or adults in a non-professional capacity.
    • Professional : refers to direct service professional staff within their first-to-third years of practice. These might be new teachers, counselors, psychologists, therapists, and others, as well as people experienced in their professions, but who have limited knowledge of ASD.
    • Master Professional : refers to direct service professionals who have worked within their domain and with people with ASD for more than three years.
    • Advanced Degree, Program Developer, or Specialist : refers to those individuals who have pursued additional certification or degrees (for example Sensory Integration Certification, Board Certified Behavior Analyst, etc.) and /or those who have extensive experience and training pertinent to supporting people with ASD.
  • How can we use the competencies?
    • Assist providers in identifying their areas of need for professional development;
    • Guide development of a program that would strictly address the needs of people who plan on working with children and adults with autism.;
    • Guide the development of university-based classes to augment existing programs;
    • Serve as background to incorporate into existing programmatic instruction if universities or others preparing paraprofessionals or professionals consider additional program or class development not practical; and
    • Guide training and staff development for direct service staff who serve individuals with autism spectrum disorders.
  • What is in the Skill Competencies?
  • Competency Areas
    • General Autism : addresses basic information regarding what the diagnosis of ASD means.
    • Individualization and Support Strategies : addresses planning for appropriate assessment and program planning for individuals with an ASD.
    • Communication : focuses on one of the primary diagnostic areas of need for ASD.
    • Social Skills : focuses on one of the primary diagnostic areas of need for ASD.
    • Behavior : focuses on determining messages communicated by behaviors and developing positive plans to teach new skills.
    • Sensory Motor Development : addresses the need for some individuals with an ASD to have sensory motor supports.
  • Sample Competencies
    • 1.1K Understands the characteristics and diagnosis of autism as defined by the most recent version of the Diagnostic and Statistical Manual and definition/description of the Virginia Department of Education.
    • 1.1.1S Lists and explains the characteristics of autism (Communication, sensory responses and needs, stereotypical behavior, socialization and social skill development).
    • 1.1.2S Describes typical child development (for example, communication, sensory responses, and needs, cognitive, behavior, and social skill development).
    • 1.1.3S Describes potential courses of development and outcomes in individuals with ASD from infancy to adulthood. (Joint attention, imitation, failure to use gestures, failure to use symbols).
    • 1.1.4S Describes the basic differences within Pervasive Developmental Disorders: i.e., Autism, Pervasive Developmental Disorder- Not Otherwise Specified (PDD-NOS), Asperger Disorder, Retts Disorder, and Childhood Disintegrative Disorder (CDD).
    • 1.1.5S Describes the current understanding of etiology and prevalence of ASD.
  • Knowledge Areas in General Autism
    • 1.1K Understands the characteristics and diagnosis of autism as defined by the most recent version of the Diagnostic and Statistical Manual and definition/description of the Virginia Department of Education.
    • 1.2K Understands the implications of the above characteristics and their impact on the individualized program.
  • Knowledge Areas in General Autism
    • 1.3K Understands the impact of common medical issues for persons with autism (for example: seizure disorders, chronic otitis media, chronic constipation or diarrhea, eating and sleep issues, use of psychotropic medications, etc.).
    • 1.4K Understands the implications of ‘dual’ diagnoses (autism and any other diagnosis from the latest version of the Diagnostic and Statistical Manual of Mental Disorders) and co-morbidity.
  • Knowledge Areas in Individualization and Support Strategies
    • 2.1K Understands how to assess an individual’s strengths and weaknesses and develop an individualized program using evidence-based and promising practices
    • 2.2K Understands and implements intervention activities to support the individual’s goals and objectives.
  • Knowledge Areas in Communication
    • 3.1K Understands components of communication (including form, semantics, pragmatics, and processing and its impact on the day-to-day experience of an individual with autism.
    • 3.2K Understands a variety of strategies to increase an individual’s communication abilities.
  • Knowledge Areas in Social Skill s
    • 4.1K Understands social skill development and the unique social skill deficits and challenges associated with ASD, including but not limited to: relationship development and maintenance, play/recreation, non-verbal interaction, functional imitation, emotional expression, emotional understanding, self-advocacy, work, and/or the role of challenging behaviors versus social skill deficits.
    • 4.2K Understands the importance of social relatedness and the need for social interaction, social rules, and age appropriate leisure activities.
  • Knowledge Areas in Behavior
    • 5.1K-Understands factors that influence behavior and the components of behavior analysis (antecedents, behavior, and consequences).
    • 5.2K Understands how to evaluate the effectiveness of a behavior plan reliably and effectively.
  • Knowledge Areas in Sensory Motor Development
    • 6.1K Understands the sensory systems, sensory processing, and sensory motor development.
    • 6.2K Understands the implications or influences of sensory processing when developing the complete program
  • Resources as a result of the competencies!
    • The Virginia Autism Council’s web site
      • www.autismtrainingva.org
      • Access to web course – Fundamentals of Autism ($50.00, 9 clock hour course offered through GMU once monthly)
      • Statewide training calendar
      • Tuition reimbursement program -- $300.00 per course that qualifies based on the competencies
  • University Programs!
    • Longwood University Courses
      • Dr. R. Mathews, 395 2532, E - mail: [email_address]
    • James Madison University
      • Brenda Fogus, Dept of Exceptional Education, JMU, 540 568-2877, [email_address]
    • Radford University
      • Dr. Leslie Daniels [email_address]
    • Regent University
      • [email_address]
    • Virginia Commonwealth University
      • Dr. Carol Schall, [email_address]
      • Dawn Hendricks, [email_address]
  • The VCU Courses
    • Course 1 -- Understanding Autism Spectrum Disorders
    • Course 2 -- Assessment, Curriculum, and Teaching Methods for Autism Spectrum Disorders
    • Course 3 -- Supporting Behavior and Social Skills for Autism Spectrum Disorders
    • Course 4 -- Instructional Design and Practicum Experience for Autism Spectrum Disorders
  • The purpose of life is to love, work and play well. Sigmund Freud
  • [email_address]