Thousands of autistic children in West Virginia find themselves stuck on treatment wait lists for years, missing their best chances for improvement as 2- and 3-year-olds.
Even if they are covered by private insurance, these children have to wait years for openings in the small number of programs in the state. Even worse, children on Medicaid may never receive the care they need since most of the best programs in the state don't accept Medicaid payments.
The Centers for Disease Control and Prevention estimates that 1 in 68 children have an autism spectrum disorder, a series of complex brain disorders characterized by communication difficulties, social and behavioral challenges, and repetitive behaviors.
Autism rates can differ widely from state to state, though. In New Jersey, for instance, the rates are 1 in 41, while in South Carolina the rates are 1 in 81. No mechanism exists to track autism rates in West Virginia.
“Less than 2 percent of any children with autism receive any evidenced-based treatment. So we know that the ability to give these kids the best outcome is really limited by the lack of services,” says Susannah Poe, director of the intensive Autism Delivery Clinic at West Virginia University.
Poe says that 2 percent is an estimate the non-profit Mountaineer Autism Project came up with after a 2010 survey of West Virginia Applied Behavior Analysis practitioners like herself about 5 years ago. To be clear, many practitioners think that Applied Behavior Analysis - ABA for short - is the best method for treating autism, if not the only one. So the 2 percent is only referring to kids receiving ABA therapy.
“What we know about treating children with autism is that the earlier we can identify children with autism and the more intensively we can offer an individualized treatment plan, the better outcome the children will have,” says Poe.
So Who Are the 98 Percent?
“If early intervention is the key, they’re missing that mark,” says Tom Riser in a recent interview. Tom and Lindsay Risers’ 9-year-old son Ricky has autism.
For a while Ricky was receiving ABA therapy in the Risers’ home. They hoped it would help his speech, behavior and the development of self-care skills. It didn’t.
The therapy’s failure in Ricky’s case may be because research has found ABA is only truly effective if it is intensive – a minimum of 20 hours a week, with the gold standard being closer to 40, the kind of program being offered in Morgantown. Ricky was receiving just 3 hours a week.
“He has services at the school – he gets speech therapy for 30 minutes a week, occupational therapy 30 minutes to an hour a month, and I don’t think there’s really any physical therapy,” says Lindsay Riser. “We don’t have private insurance – he just has Medicaid.”
Medicaid Just Isn't Covering It
No ABA therapists in the state are currently taking Medicaid or have been able to successfully bill Medicaid. So when Tom changed jobs and the family lost private insurance, they also lost the ABA therapy.
Jill McLaury is founder of the ABA facility Bright Futures in Hurricane. Though the number of board certified ABA practitioners has more than doubled in West Virginia in the last five years, McLaury says there are still not nearly enough to cover the need. Also, while federal legislation requires Medicaid to cover ABA services, there is enough red tape that most clinics like hers don’t bother trying.
“To do Medicaid I would have to be a licensed behavioral health facility and right now I’ve got a waiting list of over 50 families who are private insurance that I’m not able to serve,” she says. “So from a business perspective for me to then have to do a $1,500 application fee, to have a lot more scrutiny over the services – it doesn’t make sense when I’m not even able to provide services to the clients who already have funding.”
McLaury says the lack of ABA providers is not just a West Virginia problem, but a national problem. Every single autism center I contacted had a significant waiting list for services.
“In West Virginia, even your more populated areas of the state, the families that do have coverage are also still on waiting lists,” she says. “So it’s absolutely going to be more of a problem in more rural parts of the state.”
Like the Risers in Pineville. They moved back there from Florida to be close to family who can help them care for Ricky. Both parents have to work (they commute an hour to Beckley) in order to keep the family financially afloat. But there are no ABA services available to them there – or even in Beckley, the closest metropolitan area.
Even if they were, they don’t have the insurance to cover it and wait lists can be years long. Also, many groups prioritize giving services to younger children (2-3 year-olds) versus school-aged children like Ricky, because ABA is most effective the earlier it’s started.
So What Happens to Families Like the Risers?
“He was out of control,” says Tom. Lindsay clarifies – “He was becoming more aggressive.”
“Despite being on Risperdal, which is supposed to be for aggression,” says Tom. “So we were at wits’ end because we didn’t know whether he’d be able to go to public school or not. So then we’re starting with what do we do beyond that?”
So the Risers – desperate – decided to try something different. They made an appointment at Autism Health! in Beckley – a clinic that focuses on the relationship between poor gut function and poor sleep patterns. They said they were pretty skeptical of the clinic at first, but it got to the point that “we were like – ok we’ll try anything.”
Janet Lintala is the founder of the clinic. She said kids like Ricky come into her office all the time.
“They can’t sleep, they’re constipated, they have acid-reflux,” says Lintala during a recent interview about her new book. “They’re in quite a bit of discomfort and pain, but they can’t tell anyone that because most of them don’t have their language. And so how they tell us that is through irritability and difficult behaviors. And that’s what ends up getting medicated. We all see the difficult behaviors – the difficult behaviors the doctors go, ‘Here – here’s an antipsychotic,’ and those painful underlying conditions never get addressed. It’s like a merry-go-round they can’t get off of.”
Lintala, a chiropractor by training and mother of an autistic child, prescribes a combination of digestive enzymes, probiotics, antifungals, improved diet, special supplements and hyperbaric oxygen therapy to her patients. For Ricky, it proved really effective.
“His bowels regulated. Before he was either stopped up or going four or five times a day – so just the relief that he gets with the enzymes just for his bowels alone is worth the price of admission,” says Tom.
Ricky is also sleeping better and has become less aggressive to the point that he was able to be taken off of Risperdal. The Risers are quick to point out that their son still has autism – this wasn’t a cure, nor were they expecting to cure him.
“All we can do is give him some therapies, and try to help him regain his speech or whatever physical problems he might be having and try to ease his symptoms, but you’re never going to cure him,” says Lindsay.
In a follow up email I asked Tom why they didn’t take Ricky to a gastrointestinal specialist. Tom said they didn't realize that gastrointestinal issues were such a huge problem. “One, the child doesn't communicate well, so we never knew that he was in pain…Two, we didn't realize that his bowel movements were as erratic as they were. In hindsight, it's evident, but when you are dealing with so many other problems all at the same time, it's hard to pick up on something that is seemingly not connected to anything that is on your radar. When he is physically assaulting his teachers, the last thing you look at is stomach discomfort.”
It’s worth noting that Lintala is supportive of Applied Behavior Analysis therapy, saying that what she does is low-risk and is aimed at different goals than the ABA’s. ABA therapists like McLaury are more critical of Lintala – urging patients to consider their resources and time carefully when deciding which therapies to pursue.
The Risers clearly feel well served by Lintala’s clinic. They say that they notice huge regressions during periods they are not able to afford the enzymes (which cost around 40 dollars a bottle and last about a month). Despite improvements, they continue to hope for more therapy in general, which they think is most likely to come through the state intellectual and developmental disabilities waiver program.
State Waiver Program Offers Relief to Some Families
The waiver is awarded to children in West Virginia who have a documented intellectual and/or developmental disability. Currently 4,634 people are on the waiver – the maximum allowed – and more than 1,000 are on the wait list. The average time between when a person is approved for the IDD waiver program and receives a slot is a little over three years.
“If these children need this waiver and need the support, then where is the immediacy?” says Tom Riser. “Because right now my child is behind; he grows more behind every day. If this is an early intervention – something that is only remedied by early intervention – where is the immediacy on the waiver? Why is it taking three years? Three years to get my child into this program!.”
The waiver provides a plethora of services for families, including direct care services, day services, respite services and behavior management services. Yet state budget cuts may put the waiver in jeopardy.
In the meantime Ricky is in the special education track of third grade. Sometimes, his parents admit, they wonder if his classes are just “glorified babysitting.” The therapy he receives through school just doesn’t seem to be enough.
Where is Hope?
So you might be wondering, what happens when a child does get the services they need? Well, they might look like Hope.
During a recent visit, eleven-year-old Hope smiled at her mother through the door of the treatment room. She is one of the first children Susannah Poe accepted into the intensive Autism Delivery Clinic in Morgantown. Hope was then 5 years old.
“When she started here she was not potty-trained, she would not eat, she still had a gastrostomy feeding tube in her stomach,” says Sarah Crichigno, Hope’s mother.
Her family had been to feeding and swallowing clinics, and had tried to get help through Birth to Three. At age five, she only had about 100 words.
“Since coming here Hopi has transformed into this really blossoming little girl. Who is opinionated, she acts like she runs the show,” says Crichigno.
At the clinic, Hope and some of the other children are beginning to eat lunch. She is smiling, laughing and posing for pictures. She makes eye contact, is eating, is potty-trained and is able to verbally able to ask for what she wants and tell you how she feels.
“And that is huge as a parent!” says Crichigno. “When you think of trying to care for a child who can’t tell you what hurts or can’t tell you what they want other than through some non-verbal gestures, and then going to then a child who can tell you ‘I want some chocolate please, and my head hurts,’ it makes a difference, it really does.”
Hope’s story is, well, hopeful. It’s a success story of what can happen when severely autistic kids get the early, intensive services they need.
But remember those statistics Susannah Poe talked about at the very beginning of this story? Only 2 percent of autistic kids in West Virginia are receiving these early intensive services. For the other 98 percent like Ricky Riser, the question remains: What about me?
Appalachia Health News is a project of West Virginia Public Broadcasting, with support from the Benedum Foundation.