Living with autism or raising a child with autism in West Virginia is often challenging. That is putting it kindly.
Autism Parenting Magazine ranks West Virginia as the least supportive state in the country for autism. The ranking is due to insurance coverage, educational resources, the limited number of ABA providers, and other limited resources. (For the record, it ranks Colorado as the most supportive.)
The low ranking should not be too much of a surprise. West Virginia routinely ranks last or next-to-last in most state rankings. While Marshall University’s College Program for Students with Autism Spectrum Disorder, the West Virginia Autism Training Center, and Autism Services Center are among the best in the nation, their work is often only noticed in April during Autism Acceptance Month. Other groups, such as CARES and Think Kids, also help raise awareness regarding the lack of resources to help those with autism and other disabilities in the state.
The West Virginia University Center for Excellence in Disabilities recently highlighted the number of resources in the Mountain State for autism care. It did so through a database of resources and a map highlighting their location. The resource provides a glimpse into what is and is not available, such as therapy centers, support groups, and other important quality of life needs.
As with most resources in West Virginia, the predominance of autism resources followed the path of Interstates 64 and 79, with additional centers along the Ohio River in Parkersburg and Wheeling and the growing Eastern Panhandle region of Martinsburg due to migration from Northern Virginia. Very little is available in West Virginia beyond that region except for Beckley, which has often been southern West Virginia’s resource corridor for health and other needs.
The resource list, which is a work in progress, highlights several issues for autism in West Virginia.
For one, it is next to impossible to live with autism outside of the state’s major population centers. Autism resources, by and large across the country, are often centralized in high-population areas, so West Virginia is no exception to the rule. However, the state’s geography and economic condition make the limitation of resources highlight the overwhelming have and have-not situation with autism care. Either live in a population area or drive hours to find a quality doctor or therapist center.
The limited number of resources in southern West Virginia highlights an ongoing issue in the Mountain State of the poverty of Appalachia. The lack of resources hinders the quality of life for individuals. It invalidates the realities of those who desire to live in smaller and more rural areas, but the resources to make that happen are not a reality.
It also highlights a future concern for autism resources in West Virginia. The resource list is what is available (or known to be available) now. While it is possible to consider that future resource centers will open in regions where few exist, we need to have a sense of realism about that possibility. West Virginia’s population is among the oldest in the nation. That reality limits the available funds to create new opportunities for autism and disability care in the state, as is the case with other needs such as infrastructure repair. There is only so much funding to go around, and that funding will shrink in the years to come.
At the same time, the West Virginia Hope Scholarship program, which essentially allows parents to use state funding to attend private schools, limits the funding for public education. Often public education is the only place a child can receive developmental and speech therapies through their Individual Education Plan (IEP). With funding removed from public education, it limits the long-term ability to provide quality therapies, aides, and education for those who depend on the public school system for these resources. The policy harms those with autism and other needs by ignoring the potentiality of how removing even a small amount of public funding limits the ability to hire quality therapists, aids, and special education teachers.
West Virginia is a beautiful place, but it is also struggling to meet the most basic needs of its most vulnerable people. The lack of resources and options for families with an autistic child in West Virginia will only be enhanced without attention by state and local leadership. It will continue to force those who have the means and opportunities to do so to look elsewhere for jobs, resources, and a better quality of life for their families.
As a result, West Virginia loses by continuing to ignore the needs of the autism community.
Note: I serve on an advisory committee as a consumer representative with the West Virginia University Center for Excellence and Disabilities, which meets three times a year to hear about the center’s great work in advocating for all disabilities in the Mountain State.