Welcome!

WV Autism Insurance StakeholdersRoundtable

Sponsored by:TRAIN WV: Training and Resources for Autism Insurance Navigation in WV

MAP: Mountaineer Autism ProjectThe Benedum Foundation

Mountain Lakes Convention and Visitors Bureau of Lewis County.

Introductions

SponsorsLegislatorsPresentersAttendees

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.

AGENDA8:30-9:00: Registration9:00-Morning Session

Welcome and IntroductionsSusannah Poe—Autism, MAP, Legislation, and TRAIN

Jill McLaury—Overview of the WV LegislationCindy LeGrand and Kathy Shapell—What is ABA?

WV Highmark Blue CrossThe Health Plan

12:15-1: Lunch at Stillwaters 

1:00: Afternoon SessionMike 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, ParentsReports from the Stakeholders

Planning Our Next Step 

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.

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

Who Gets Autism?

An equal-opportunity disorder…any financial, religious, cultural,

geographic group…clusters

Boys more likely than girls1 in 88 in US

Incidence is Rising

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.

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

ABA: Autism’s Evidence-Based Treatment

Mountaineer Autism Project

How we started….

The beginning…

Many years of effort paved the wayIn 2007, first WV autism insurance bill

introduced in Legislature2010 – Philadelphia Meeting, MAP was

formed2011– One Voice Campaign

Sunrise Process2012– Clean Up Bill

WVUCED identified/invited state leadersThe 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.

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

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.

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

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

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

In 2011, One Voice

Flash MobCupcakesWalk A MileIn Our ShoesTrail MixPresentations

West Virginia Became 25th

State to Mandate Autism Insurance

Not Over Yet…2012

Board of Examiners Challenge led toSunrise Application

Incorrect Wording of the Passed Legislation

Led to Reintroduction of Corrected Bill

Passed. Signed.

On To Next MAP Goal:

Increase Awareness and Accessvia

TRAIN: Training and Resources for Autism Insurance Navigation in WV

Grant Funded by Benedum Foundationand in partnership with

Mountaineer Autism Project

TRAIN WV

Bring Together StakeholdersDevelop Information Exchange

Provide Access Information for FamiliesProvide Billing Information for BCBA’sProvide Tx Resources for Insurance

CompaniesOffer Demonstration Treatment Center

Outreach and Resource Center

And That’s Why We’re Here!