Approximately one-quarter of the children on the autism spectrum in West Virginia can be described as being profoundly autistic, which may involve severe intellectual disabilities, few or no functional language skills and extreme emotional dysregulation.
To increase awareness of profound autism and its unique challenges for individuals who require lifelong and 24/7 care, as well as rising autism diagnoses, Gov. Patrick Morrissey recognized and proclaimed March 17 as Profound Autism Awareness Day and April as Autism Awareness Month in West Virginia.
After being diagnosed with profound autism, Dylan McCoy did not begin life-changing applied behavioral analysis (ABA) therapy for nearly five years, and his family still experiences barriers to care, a thread echoed across the state with financial concerns, lack of access to therapy and a negatively affected workforce.
Angel McCoy-Green, Dylan’s mother, has PEIA and Medicaid. While insurance covers most of his therapy, McCoy-Green must pay $250 out of pocket each month because of the reimbursement rate from Medicaid. Additionally, the Applied Behavior Learning Center where Dylan receives therapy is located in Beckley, an hour away from where the family lives in Oceana, West Virginia. Dylan receives four hours of therapy each Monday and Wednesday.
“Thankfully, his dad works weekends, so he’s able to take him on Mondays and Wednesdays, because I teach,†McCoy-Green said. “If he worked through the week also, we wouldn’t have anybody to take him. He just wouldn’t have the therapy.â€
Prior to being diagnosed at 18 months old, Dylan was a neurotypical child, McCoy-Green said. He could speak a few words and make eye contact, hitting all the typical milestones. At about 18 months, though, his eye contact and speech ceased.
“He stopped responding to his name, started stimming, all the classic signs,†McCoy-Green said. “We got a pretty quick diagnosis, and then he was put in Birth to Three.â€
Through the West Virginia Birth to Three program, Dylan was able to receive speech and occupational therapy at home, and McCoy-Green started researching ABA therapy. At the time, the closest provider they could see was in Teays Valley -- two-and-a-half hours away. It was simply not obtainable for the family to move.
When ABLC, based in South Charleston, prepared to open its second location in Beckley, McCoy-Green was one of the first on the waiting list.
“As soon as I saw it pop up, I started emailing and immediately started getting my paperwork together,†McCoy-Green said. “He finally got into an ABA therapy location when he turned 7; it took us about five years of waiting and looking.â€
Dylan has now been going to ABLC for three years, making immense strides from day one. He’s able to follow directions and can understand what is being said to him. Malena Scalise, board certified behavior analyst and founder of ABLC, said Dylan has been doing well with many of his goals.
“When Dylan first came to us, he was harnessed in a stroller for fear of elopement, showing that he didn’t have any listening skills,†Scalise said. “Since then, he is no longer being harnessed, at least at our clinic. We’re able to give him directives away from a table setting that he’s able to follow through with, so that is very exciting for the family as well for us, and it will help keep him safe.â€
Dylan is progressing with receptive language, visual-perceptual and self-help skills. Before beginning therapy, he had toileting accidents because he did not have the means to indicate he wanted or needed to go to the restroom, Scalise said.
“He’s no longer having urinary accidents, and that’s very exciting, too,†Scalise said.
At first, he was also uninterested in interacting with other kids and adults, and now, one staff member -- a registered behavior technician -- has a bond with Dylan like no other, Scalise said.
“They are very good at communicating with one another, and Dylan will seek him out,†Scalise said. “He is very flexible and will work with other people, but he will run to Jonathan to show his preference, and they just love each other.â€
Dylan’s is a story of success, but it’s not without barriers and lack of access. Dylan is on the intellectual and/or developmental disabilities waiver (IDDW) program, which would allow a certain amount of respite hours each week, but McCoy-Green said there are no caregivers in Wyoming County.
“We could have a caregiver come into the home or that could take him to therapy, if his dad couldn’t, but there are just no providers in the southern part of the state,†she said. “We’ve tried and been without a respite care worker for two years. That’s money that’s available, just sitting there that we’re not able to use.â€
The waiver program also allows $1,000 to go toward goods and services that benefit children with autism, including horseback therapy and swimming lessons, but these things cannot be accessed by the McCoy family due to Medicaid.
“I tried to see if I could use that money to help pay off some of the ABA therapy, and I could not use it for ABA therapy because it’s available for Medicaid, but the place Dylan goes to will not bill Medicaid,†McCoy-Green said. “So again, that’s $1,000 just sitting there that could be going toward his therapy. A lot of paperwork, bureaucracy, red tape -- it just doesn’t make sense.â€
Medicaid is supposed to cover ABA, but many of Scalise’s clients’ claims have not been paid, and ABLC does not accept Medicaid as a result.
“They are always finding reasons to deny them,†Scalise said. “I wouldn’t have the resources to hire someone to fight Medicaid all day. We don’t have problems with any other insurance. So we are not accepting any Medicaid -- and that’s very sad, because children that are on Medicaid are the ones that need the therapy.â€
Citing Morrissey’s profound autism proclamation, McCoy-Green said she is thankful autism awareness in general has grown, but not everyone on the spectrum can speak for themselves.
“It is a very wide spectrum, and lots of times I feel like the people who can speak out for themselves are not at the profound side of the spectrum,†McCoy-Green said. “So as parents and caregivers, advocates, we have to speak out for those kids that have no voice. I’m very thankful that that portion of the spectrum is getting a little bit more awareness, more attention, because it’s definitely needed.â€
A high school teacher, McCoy-Green said introducing ABA related jobs in the school system and having current ABA therapists visit schools, spread awareness and educate would potentially increase the number of future therapists in West Virginia. Lack of a sufficient, trained direct-care staff contributes to longer wait lists for institutions like ABLC.
“I think it would be very helpful to advertise it on career days,†she said. “I almost feel like sometimes the OT and speech fields get a little bit overloaded because people are interested in that. They don’t even know ABA exists.â€
McCoy-Green offered advice for parents and caregivers of children with profound autism, including looking into ABA therapy as soon as possible.
“Take advantage of any resources you can find in your area; you have to do research,†she said. “Birth to Three is a great starting location. Thankfully, there are more locations opening, but you’ve got to get on a waiting list soon. The earlier the intervention, the better. I really wish we could have gotten Dylan into ABA therapy five years sooner. Try to find those resources as soon as possible.â€
