Mountaineer Autism Project History
One voice in West Virginia dedicated to providing accurate and up-to-date information, empowering parents, supporting best practices, and making lasting changes in our state to enable West Virginians with autism to achieve their highest potential.
Governor Earl Ray Tomblin signed House Bill 2693 into law effective July 1, 2011, surrounded by parents and children, and other supporters who worked for years to get insurance coverage for West Virginia children.
Mountaineer autism project History
Mountaineer Autism Project (MAP) was developed by a group of West Virginians who were committed to helping families recognize, understand, and successfully manage the challenges of Autism Spectrum Disorder (ASD).
MAP began when a diverse group of West Virginia parents and professionals attended a regional CDC Act Early Summit in Philadelphia, Pa., in March of 2010. During that meeting, the group learned just how scarce evidence-based services were for young children with autism. At that time, fewer than 1.6 % of children identified with autism in West Virginia were receiving any evidence-based treatment. Although there were a few pockets of excellence in the state, almost all areas lacked well-trained professionals experienced with autism diagnosis and treatment.
Front row: Susannah Poe, Jill Scarbro-McLaury, Cathy Jo Higgins, Jeanie Elkins, Cindy LeGrand, Barbara Becker-Cottrell Back row: Kathy Shapell, Allison Tetreault, Lisa Hiser Daugherty, Ginny Gattlieb, Pam Roush Not pictured: Carol Brawley, Theresa Frazier M.D.
The Philadelphia group returned home committed to taking action to change the landscape of autism resources in West Virginia and, later in 2010, MAP officially became a 501(c)(3) nonprofit organization. These parents and professionals shared the goals of providing accurate and timely autism resources for West Virginia families and professionals. The group was determined to support best practices and make lasting change in our state to enable West Virginian’s with autism to achieve their highest potential.
We began their efforts by working to pass legislation that would ensure that WV children had access to insurance coverage of evidence-based services. For more than two years, we worked to educate and inform the West Virginia Legislature and provide awareness activities for all stakeholders across West Virginia.
On March 12, 2011, with the help of Autism Speaks government affairs team, West Virginia became the 25th state to legislate insurance coverage for children whose parents were enrolled in private insurance companies doing business in West Virginia.
As soon as this Legislation passed, the MAP team realized that wording was incorrect in the final writing of the bill, and began working to address the incorrect financial limits in the recently-passed bill. During the next year’s session, the MAP team promoted a “Clean Up” bill that was also passed by the Legislature in April of 2012.
From 2010-2012, MAP received a Claude Worthington Benedum Foundation Grant to educate and inform all West Virginia stakeholders in the implementation of autism insurance. Named Training and Resources for Autism Insurance Navigation in WV (TRAIN-WV), this grant brought together parents, professionals, autism insurance providers to problem solve-barriers to implementation,
MAP’s next goal was to extend Medicaid coverage to eligible West Virginia children diagnosed with autism. That goal was finally realized in 2020, doubling the number of children who were able to receive services.
Even though the number of certified treatment professionals in West Virginia had grown since autism insurance was passed, MAP recognized that BCBAs trained in WV were often leaving the state for more established ABA centers. A second Benedum Foundation Grant was awarded to MAP with the goal of providing additional training opportunities for those pursuing their BCBA licensure and planning to stay in West Virginia. The implementation of this grant occurred right before the COVID pandemic, but in spite of the barriers caused by that pandemic, MAP successfully trained 12 new BCBAs who agreed to stay in West Virginia.
MAP, with the oversight or the Augusta Levy Learning Center’s (ALLC), is currently working with an Appalachian Regional Commission planning grant to develop an ecosystem to grow ABA services across WV. “WE Develop ABA” grant proposal (PW-20881), is designed to survey the current Applied Behavior Analysis (ABA) workforce in WV and develop a strategic plan to increase much-needed access to a wide range of behavioral treatment across West Virginia. Questionnaires designed for four different audiences (BCBA Centers, BCBAs in practice in West Virginia, parents and families of children with autism, and non BCBA human service providers) was sent out in January, 2023, to identify needs and challenges across West Virginia. An initial stakeholders meeting is scheduled for March, 2023, in White Sulphur Springs, followed by a broader information and outreach campaign to increase stakeholders for as-of-yet identified audiences.