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. Introductions
Sponsors
Legislators
Presenters
Attendees

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‖ that
can’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

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 and
Increasing 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 25th
State 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!