Twins Tristan and Autumn Hinebaugh are great examples of the success autistic children in our state can achieve if they have access to early intensive treatment. However, the state's autism care law leaves many children out.
Tristan and Autumn receive their treatment at the Intensive Autism Service Delivery Clinic at West Virginia University's Center for Excellence in Disabilities, but it is a unique situation. The clinic is free to families and relies solely on grant funding that could dry up at any time.
"It's a little scary," said Tina Hinebaugh, the twins' mother. "Every day wondering whether or not you're going to get the services your child so desperately needs."
Tristan and Autumn are lucky to have access to the services. The clinic is small, and only has the resources to work with a handful of children.
"We have a waiting list that we've quit taking names for because the children age out," said Dr. Susannah Poe, the director of the clinic. "They're 6 and 7 before we even have an opportunity to bring them in and it breaks our hearts."
If it weren't for the clinic, the Hinebaughs couldn't afford the care they receive. Tina said her employer is self-insured and so is not a part of the autism law. That means Tristan and Autumn are not covered.
Dr. Poe estimates that more than 75 percent of West Virginia children are in the same situation, blocked from funding for this type of treatment and its results.
"There has not been one child who has not made remarkable, affirming, progress," Dr. Poe said of the treatment at the clinic.
Of the estimated 23 percent of children who are covered, they still face difficulties gaining access to treatment. Dr. Poe said there are only 40 Board Certified Behavior Analysts (BCBA), like Emily Morris, in the entire state.
Morris trained at the clinic as a graduate student, and now administers the program developed to implement the autism law, called TRAIN-WV. Even when families call for referrals, Morris may have nowhere to send them.
"I have to say that's probably been one of the most personally challenging aspects of my job over the last year," Morris said.
Part of that problem comes from the difficulty BCBAs can have billing insurance companies, something Morris has been working on through TRAIN-WV for a year. More on that, and the lessons learned from a parent training program when our series continues Thursday.