Welcome!

1. Welcome! WV Autism Insurance Stakeholders Roundtable Sponsored by: TRAIN WV: Training and Resources for Autism Insurance Navigation in WV MAP: Mountaineer Autism Project The Benedum Foundation Mountain Lakes Convention and Visitors Bureau of Lewis County.

2. IntroductionsSponsorsLegislatorsPresentersAttendees

3. Our Plan Today The goal of this meeting is to improve access to autism treatment services for young children with autism and develop collaboration and information exchange among all stakeholders.

4. AGENDA 8:30-9:00: Registration 9:00-Morning Session Welcome and Introductions Susannah Poe—Autism, MAP, Legislation, and TRAIN Jill McLaury—Overview of the WV Legislation Cindy LeGrand and Kathy Shapell—What is ABA? WV Highmark Blue Cross The Health Plan 12:15-1: Lunch at Stillwaters 1:00: Afternoon Session Mike Wasmer—Overview on Implementation Issues Billy Edwards—Implications of Implementation For the ABA Provider. Jackie Eckerd—Implications of Implementation For Parents and the Community. Mike Wasmer—Self-funded Policies and Non-Mandated Coverage. Group meetings: Insurers, ABA Providers, Parents Reports from the Stakeholders Planning Our Next Step

5. What IS Autism? Autism is a complex neurobiological/ behavioral disorder characterized by: - severe, persistent, and atypical problems in social interaction - severe, persistent, and atypical problems in communication - accompanied by unusual or repetitive behaviors, - occurring before age three.

6. Autism is… A broad spectrum of disorders affecting • thought • perception • attention …not just one disorder with a well-defined set of symptoms - ranges from mild to severe - occurs across all situations - is consistently inappropriate for the child’s age

7. Who Gets Autism? An equal-opportunity disorder…any financial, religious, cultural, geographic group… clusters Boys more likely than girls 1 in 88 in US Incidence is Rising

8. Autism is an Epidemic It is the fastest growing serious developmental disability in the US ---More common than pediatric cancers, diabetes, and AIDS combined. ---CDC calls rise in autism an “epidemic” thatcan’t be explained by improved diagnostic criteria, “transfer of labels,” or earlier exposure to younger children.

9. What we know about autism… Early identification and referral to high quality, intensive treatment is critical for improving outcomes Between ages of 2 and 6 are the critical times for learning and “recovering” Research concludes that effective treatment is possible using the methods of ABA...any treatment other than intensive, 1:1, individualized has no scientific evidence to support its use— Children with autism have more medical needs than typically-developing children but are usually excluded from the same benefits due to the autism diagnosis

10. ABA: Autism’s Evidence-Based Treatment

11. Mountaineer Autism Project How we started….

12. The beginning… Many years of effort paved the way In 2007, first WV autism insurance bill introduced in Legislature 2010 – Philadelphia Meeting, MAP was formed 2011– One Voice Campaign Sunrise Process 2012– Clean Up Bill

13. WVUCED identified/invited state leaders The state team participated in facilitated discussions to develop a plan and actionable priorities to bring home to improve WV’s system to identify, assess, and serve young children with autism.

14. Region III Act Early Conference Conference sponsored by: National Center for Birth Defects and Developmental Disabilities, CDC, and MCH at Health Resources and Services Administration (HRSA), facilitated by AUCDD Goal: enhance identification, assessment, service coordination and provision of services for children with ASD and related DD 1 ½ days to share, discuss, learn Sharing best practices opportunities, challenges with peers from other states in the region

15. Impact Statement: To develop a seamless, collaborative, comprehensive plan for screening, early identification, assessment/diagnosis and family-centered services that meets the needs of our state’s citizens. MAP was born.

16. First step: Asked to Present “Gaps in Services” to Senate Judiciary Committee • Not enough well-trained diagnosticians able/willing to provide early identification • Few in-state resources to provide evidence-based treatment • Lack of financial supports for all families with special needs • Existing services do not or can not reach all families • Life span specialists generally unavailable in state

17. Question: What Was Needed: Quicker Diagnosis More Intensive, Available, Evidence-Based Treatment: Less than 2 % of WV Children Received ANY Evidence-Based tx More Trained Providers Answer: Financial resources for treatment of this MEDICAL condition Better outcomes for children and families— And all of WV Increase in employment Market for Trained Professionals

18. MAP’s Commitment:Passing Insurance Legislation andIncreasing Community Resources and Access to Services • With One Voice • Parent Involvement • Education and Awareness • Increase understanding that ABA is the most recommended, mature, proven, medically-directed treatment for autism

19. In 2011, One Voice Flash Mob Cupcakes Walk A Mile In Our Shoes Trail Mix Presentations

20. West Virginia Became 25thState to Mandate Autism Insurance

21. Not Over Yet…2012 Board of Examiners Challenge led to Sunrise Application Incorrect Wording of the Passed Legislation Led to Reintroduction of Corrected Bill Passed. Signed.

22. On To Next MAP Goal: Increase Awareness and Access via TRAIN: Training and Resources for Autism Insurance Navigation in WV Grant Funded by Benedum Foundation and in partnership with Mountaineer Autism Project

23. TRAIN WV Bring Together Stakeholders Develop Information Exchange Provide Access Information for Families Provide Billing Information for BCBA’s Provide Tx Resources for Insurance Companies Offer Demonstration Treatment Center Outreach and Resource Center

24. And That’s Why We’re Here!