Great Health Divide | Autism services unable to meet growing demand in Appalachian Ky.
Grassroots support groups are trying to bridge the gap in their absence.
PRESTONSBURG, Ky. (WKYT) - Inside Crider’s Barber Shop, the buzz never stops. But, as a parent of two autistic children, Chris Crider knows it all can be hard to handle for some who sit in his chair.
“They deserve to have a good haircut too, just like everybody else,” he said. “They just have sensory issues you have to work through.”
Crider’s Barber Shop is one of the first businesses in Floyd County to be certified ‘autism friendly.’
One local parents group in particular is encouraging other businesses, too, to go through the training. They are doing their best to make eastern Kentucky more welcoming to the growing number of children with special needs.
Autism diagnoses across the country are close to three times more common than they were just 20 years ago. Yet - especially in Appalachia, advocates say - the availability of services is not keeping up with the growing demand, in many cases leaving it to grassroots efforts to try to bridge the great health divide for kids with special needs and their parents.
Kelli Jo Blair, of Inez, founded a support group in 2016 after her son, Cage, was diagnosed and she did not know where to turn.
“I found myself messaging complete strangers asking, ‘What do I do? What resources are out there?’” she said. “And quickly I found there was next to none.”
Since then she has learned that she is far from alone, even as the number of resources available has increased.
The Facebook following of their group - Eastern Kentucky ASD [Autism Spectrum Disorder] and SPD [Sensory Processing Disorder] support group - has grown to 1,100 members from all over the region, including some who live in West Virginia. They try to help each other and point to resources, knowing that to reach autism services many families in Appalachia either have to move, make long drives or wait for years.
“You live your life on a waitlist,” Blair explained. “Whether it’s a Medicaid waiver waitlist, or a therapy waitlist. That’s how it is.”
Back in October, Pikeville Medical Center opened a new Appalachian Valley Autism Center in Prestonsburg. The original facility in Pikeville was the first of its kind in the region.
“We’ve had a four-year-old, five-year-old, seven-year-old, say their very first words; to see a father drop down to his knees in tears and say, ‘I never thought I would hear my child say I love you.’ Wow,” Donovan Blackburn, president and CEO of Pikeville Medical Center said at the ribbon-cutting of the new facility. “You can’t help but get emotional.”
But even as officials opened up the new facility, they acknowledged that more than 500 children were on its waiting list, underscoring the need for further expansion across the region.
“Eastern Kentucky needs resources for these children,” Blair said. “Not just autistic children. Special needs children in general are underserved.”
Blair said her son is at Level 3, the most severe level on the autism spectrum, according to Autism Speaks, which requires “very substantial support.”
Yet of three common therapies often prescribed for autism - applied behavior analysis, speech therapy and occupational therapy - Cage currently gets none.
He had a speech therapist, but they left, so now he is on a waitlist. He had an occupational therapist, but they also left, and now they can’t find one. He’s been on a waitlist for the AVA Center since before it opened, Blair said. They tried telehealth services, but they were told it would not be enough.
Still, Blair has to try to prepare her son for a time when she will no longer be there for him.
“It’s not just about getting him help,” she said. “It’s about his survival.”
As more insurance companies and Medicaid move to cover more autism services, advocates are hopeful that more autism centers will come to eastern Kentucky. In the meantime, Blair says she tells anyone she knows who is going to college to become speech, feeding, occupational or ABA therapists and come back to the region.
For now it is up to this grassroots group to try to bridge the gap by advocating for change, educating parents and caregivers, working to increase autism acceptance and awareness, and bringing in more services. On their group’s Facebook page, parents ask for help, offer advice, provide recommendations and publicize inclusive events.
They are also partnering with Kendyl and Friends and Martin County Tourism to build an inclusive playground.
“Give our kids a spot,” Blair said. “Give them a chance to succeed.”
At his shop, Chris Crider says they have figured out some ways to make kids more comfortable with a haircut. One child was afraid to come in the building the first time, he said, but each time they were able to move a little closer, eventually ending up in the chair inside.
“A lot of it is time with these kids,” he said. “You can do a little bit, then let them regain their bearings about themselves. Finding something to distract them.”
That can be their chair that is shaped like a car, having them use an iPad to keep their attention elsewhere, or letting kids hold the clippers to get more comfortable with them.
“The big thing with them is getting over the fear of it being close to their ears and stuff like that,” Crider said. “That’s a huge part with them.”
To Crider, it is clearly important, and a responsibility he does not take lightly. Some parents will drive from an hour or two away even to get their child’s hair cut there, he said.
He displays an “autism-friendly business” badge on the wall inside his barber shop and also on the windows of his business, a sign that these parents - Blair, Crider and so many others who have worked to forge a path ahead for children with special needs - are making a difference in this community.
“Something as simple as a haircut for a parent, seeing them smile, something they haven’t gotten in a long time,” Crider said, “means the world to us.”
- Own a business and want to become autism-friendly certified? Here’s one way you can do that.
- Learn more about resources here through the Kentucky Advisory Council on Autism.
- You can donate to the Kendyl and Friends Inclusive Playground - the Christian Cage Campus by selecting it in the drop-down menu here.
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