It’s difficult to imagine that a child being diagnosed with autism could bring relief to parents, but that’s what happened to Kyle Robinson and his wife, Bonnie.
Their son Samuel was 18 months old when he was diagnosed in 2011. It provided critical answers to questions the Robinson had about developmental issues Samuel was experiencing. It also helped them to pinpoint the kind of ongoing services Samuel, now 9, would need.
“When we got that diagnosis of autism, it was a relief because now, we thought, we can help our son,” said Kyle Robinson, director of basketball operations at East Carolina University in Greenville.
What the Robinsons didn’t know at the time was that services for children with autism were scarce to non-existent in Pitt County.
The region was a desert for professionals trained in applied behavior analysis (ABA), a type of therapy that can improve social, communication and learning skills in children with autism through positive reinforcement. The therapy is considered by many experts to be the gold-standard treatment for children with autism spectrum disorder and other developmental conditions.
“Before we had autism impact us directly, we really didn’t know the various issues that families with children with autism have,” Kyle Robinson said.
To get the ABA services for Samuel that he required, Bonnie had to give up her teaching job in Winterville.
On Sunday afternoons, Bonnie and Samuel would hop into the family’s car for a 200-mile trek west to Winston-Salem where Samuel spent the week attending the ABC of NC Child Development Center for Autism.
The private nonprofit center provides therapeutic and educational services for children with autism spectrum disorders and their families.
Those were not easy times for the Robinsons, but Kyle Robinson counts his family among the lucky ones in North Carolina who despite limited access, found quality, therapeutic care for their child.
“We’ve met other families who haven’t been so lucky,” he said. “The lack of care, especially in a region like eastern North Carolina is difficult for families.“
He believes the luck of such families is about to change because of a bill working its way through the General Assembly that would no longer require behavior analysts working in the state to be supervised by licensed psychologists.
New licensing bills win overwhelming approval
Supporters of House Bill 91 believe that removing the requirement will make North Carolina more attractive to behavior analysts who care for children with autism. That, in turn, will make ABA services more accessible to families in rural areas, they contend.
HB 91 is sponsored by Rep. John Bell, a Republican from Goldsboro.
Companion legislation, Senate Bill 103, would establish licensure requirements for behavior analysts, as well as a licensing board that would bring North Carolina in line with how most other states operate.
“We think this will open the floodgates as we move forward to give them [children with autism] more opportunity for care, especially in rural areas,” said State Sen. Jim Perry, a Republican from Kinston who co-sponsored SB 103.
Perry made his comment Monday during a meeting of the Senate Rules and Operations of the Senate Committee where the bill received a favorable hearing. The bill was approved by the full Senate 48-0 on Tuesday. HB 91 passed the House 117-0 on Wednesday.
There are only 62 psychologists to oversee the work of roughly 680 people who could provide care for the state’s 65,000 children with autism, Perry said.
Virginia has more than twice as many behavior analysts – 1,500 – as North Carolina. They are licensed and board–certified. And unlike in North Carolina, the behavior analysts can work independently.
“In Virginia, we do practice independently without supervision from anyone as long as you’re licensed and that works very well for us,” said Christy Evanko, administrative director of the Virginia Association for Behavior Analysis. “We feel that that opens the field and helps more people to be served as well as encourages more people to become certified in our state.”
In many legislative sessions, former Rep. Chuck McGrady, a Republican from Henderson County, introduced bills to allow North Carolina analysts to work independently. The bills often received bipartisan support in the House but quickly stalled after moving to the Republican-controlled Senate.
McGrady, who retired from politics last year, said his Senate colleagues found it politically impossible to support the bills he introduced.
“I think there’s a general dislike of licensure,” McGrady said. “The feeling is that licensure is used to keep people from competing with other people for jobs, and I get that, I was a Republican legislator. But sometimes, the opposite proves the rule, and this is one of those times.”
McGrady explained that not having a licensure process has stifled competition by making the state unattractive for behavior analysts.
That has caused children with autism in North Carolina to go underserved, he said.
“They [behavior analysts] can go to Greenville, South Carolina and not be required to be supervised by a medical doctor or a psychologist whereas in North Carolina, they’ve got to operate under someone else,” McGrady said. “The insurance companies will pay the psychologists who then pays the analysts but [insurance companies] won’t pay the behavior analysts directly. For people who are well-trained, it’s easier to go to another state.”
Durham lawmaker speaks from a place of experience
Rep. Zack Hawkins, (D-Durham), didn’t hesitate to throw his support behind HB 91 and SB 103. Hawkins and his wife, Tracey are parents to two young sons, James Paterson and Adam, diagnosed with autism.
“The gravity of what that means for families is quite daunting,” Hawkins said. “It’s an unforgiving disorder in many ways, both for the child and the family.”
After James Paterson and Adam were diagnosed with being on the autism spectrum, the Hawkins found their busy lives suddenly interrupted.
“It hit us like a ton of bricks that if we are stretched, what are other families doing that have no services or are too poor to afford services,” Hawkins said.
Fortunately for them, Durham has abundant resources, and their sons have not been without care.
But Hawkins said all families deserve access to the services to help children with autism, regardless of where they decide to live.
“If we keep this current model, there will be so many families that will continue to have to worry about transportation to get services or they’ll have to move to an urban area,” Hawkins said. “If you want to live in a small town, a place like Chocowinity (his hometown), you should be able to do that and have the same quality of life as you do in Durham.”
In 2014, the Robinsons took matters into their own hands.
The couple founded Aces for Autism, a nonprofit treatment and educational center in Greenville that serves children with autism, regardless of ability to pay.
According to the Aces for Autism’s website, caring for a child with autism can be devastating for families. The divorce rate is two times greater for parents raising a child with autism and caregivers are more likely to turn to alcohol or substance abuse to cope.
Through Aces for Autism, Kyle Robinson says he’s met parents who are struggling to manage older children with autism. The job is toughest for parents whose children didn’t get ABA services at a young age.
“We’re getting families that now their son is 12, 13 or 14 years old and they’re coming to us and have never received services whatsoever,” Kyle Robinson said. “Research has shown that the best time to start is when the child is young.”