By Kristen Uppercue
By the time Lily Snyder was a year and a half old, her parents, Michael and Stacy Snyder, had noticed signs that she wasn’t pointing, waving or talking like other children her age. Their physician referred them to Cincinnati Children’s Hospital Medical Center for an in-depth evaluation, where she was diagnosed with autism spectrum disorder.
A Lack of Services
Once Lily was diagnosed with autism, there was a clear gap that hindered Michael and Stacy from finding adequate care and therapy and learning how to take care of a child with autism. During the testing process to see where Lily placed developmentally, they would wait weeks for appointments. They quickly realized that faster, more accessible and more affordable care was available outside of West Virginia and considered moving to Ohio.
One in 59 children in the U.S. have been identified with autism spectrum disorder, according to the Centers for Disease Control and Prevention’s (CDC) Autism and Developmental Disabilities Monitoring Network. An individual with autism has a variety of emotional, physical and social needs depending on the degree of their disorder. In West Virginia, it’s harder for families to find support for those needs because of a lack of trained professionals and facilities, leaving many to do what the Snyders did: travel outside the state to find more adequate and faster services.
“I can attest that there are too few providers in West Virginia, especially in rural areas,” says Susannah Poe, director of applied behavior analysis (ABA) services at the WVU Medicine Children’s Hospital’s Neurodevelopmental Center and professor of pediatrics at the West Virginia University (WVU) School of Medicine. “There are also too few training programs for those wanting to go into the field and not enough statewide support to help develop and grow meaningful support for families.”
Meeting the Need
However, there are many organizations in the state attempting to fill in those gaps. The West Virginia Autism Training Center (WVATC), housed at Marshall University, attempts to meet the needs of individuals with autism, as well as the needs of their support systems. The center has three programs designed to help individuals with autism pursue a life of quality, the first of which works to effectively transition young adults with autism onto a college campus through socializing with other students and developing independent living support. The training center has helped Concord and Shepherd universities implement a similar program and has assisted roughly 50 other universities around the country.
The second program centers around teaching families of those with autism how to support all their needs by conducting individual assessments, hosting workshops around the state for those who interact with a person with autism and developing behavioral support plans for the individual’s support system.
The center also developed a technical assistance center, which is not autism-specific but is specific to positive behavior support. Through this program, the center works with the West Virginia Department of Education and hundreds of schools throughout the state to develop leadership teams focused on improving the culture and climate in those schools.
“We’re building a community around the individual, and that community involves teachers and parents and anybody else that’s important in the person’s life,” says Marc Ellison, executive director of the WVATC. “We teach that community how to support the individual behaviorally, socially, emotionally and academically. Then, over a period of several months, we pull back and leave that community standing around the individual.”
Finding Help at Home
There are also nonprofit, community-based training organizations and clinics in the state working to provide the emotional and physical support a family with a child that was recently diagnosed with autism may need. What started as a school for one child with autism has since grown into a clinic providing ABA treatment to individuals with autism from around the state. Bright Futures Learning Services (BFLS), founded by Jill Scarbro-McLaury, provides early autism intervention programs and precision learning for those with learning disabilities.
However, like many of the available services in the state, BFLS has a long wait list. Families who are on the list could wait months or even years before receiving the services they need, requiring many seeking treatment to travel outside of the state. On top of the already high price tag placed on services for those with autism, this is an expensive resolution due to high travel costs and the need for parents to take off work. It was the services offered by BFLS that kept the Snyders in West Virginia, but Lily was on the waiting list for five months before being accepted into the program.
Seeing the effect this wait has on families who struggle to provide care for their children, Scarbro-McLaury created Community Autism Resources and Education Systems (CARES) to equip families with training resources, provide funding to train ABA providers to work in the Appalachian region and offer financial assistance to individuals with autism, increasing their ability to participate in clinical services and diverse educational opportunities.
“If you have a child with autism in the area, come to CARES. It will point you in the right direction,” says Michael, who, along with his wife, has become a strong advocate and fundraising volunteer for the organization since it started.
The Cost of Care
While CARES is trying to fill in some of the gaps, there is still the added stress of paying for the care needed. According to the CDC, medical costs for children with autism are, on average, four to six times greater than for those without.
As of 2011, specified health insurers are required to cover at least $30,000 every year for three years of treatment and $2,000 per month after the first three years. However, according to Michael, that amount doesn’t cover everything. The Snyders pay $1,400 a month in insurance and more than $10,000 a year for Lily’s therapy.
“Not everybody can do that, and it’s a struggle for us,” he says.
According to the Mountaineer Autism Project (MAP), a nonprofit in the state that focuses on the early detection and diagnosis of autism, it’s estimated that fewer than 10 percent of children with autism have access to ABA therapy. This is a step up from the estimated 2 percent a decade ago, according to Poe.
“MAP’s first goal was to grow insurance coverage across West Virginia, and after a two-year-plus effort, in 2011 we became the 25th state in the U.S. to mandate insurance coverage for ABA for children up to age 18,” she says. “It has taken a long while to get it up and running, especially with Medicaid, but it’s a start.”
