Autistic kids hurt by low Medicaid rates
In states like S.C., pay levels for therapy challenged in court
WASHINGTON — Reagan Wright, who is nearly 14, is devoted to all things American Girls, and she dreams of becoming a veterinarian. For a child with autism spectrum disorder, Reagan is considered high-functioning.
Which isn’t to say, her mother Emily emphasizes, that Reagan is not a handful.
“There are social issues,” Emily said. “Troublemaking and keeping friends. She says inappropriate things. And there are outbursts. Lots and lots of meltdowns.” The Wrights pulled Reagan out of public school this year, and she now is taught at home through a state-approved virtual school.
Reagan’s medical providers recommend she undergo applied behavior analysis, one of the most common and effective treatments for children with autism. Referred to as “ABA” for short, the intensive treatment rewards autistic children for substituting positive behaviors for problematic conduct.
Yet, while the South Carolina Medicaid agency has approved Reagan for the treatment, her mother says it’s unlikely she’ll be able to find a provider willing to accept the amount of money South Carolina Medicaid pays for ABA.
“They won’t say how long their waiting lists are, but I’m told it’ll take years,” Emily said.
The reason, according to a class-action federal lawsuit filed last month against the South Carolina Department of Health and Human Services, is that its Medicaid reimbursement rate for ABA “is among the worst in the nation and has severely limited and will continue to limit children’s access to medically necessary legally required treatment.”
‘Irreparable injury’
A similar class-action federal lawsuit was filed late last month in Northern California on behalf of young, severely disabled children who, the suit alleges, were not receiving the approved inhome nursing care that the lawsuit contends would keep them from institutionalization. That case also alleges a shortage of available nurses willing to accept low Medicaid reimbursement rates.
Both cases assert that the states are violating the law by not providing medically necessary treatment and, as the South Carolina suit alleges, are causing “irreparable injury” to children in need of those services. Neither case specifically asks the states to pay providers more, but legal and health policy analysts say that could be the eventual result.
In recent years, courts, including the U.S. Supreme Court, have curtailed the ability of individuals to legally challenge Medicaid rates as insufficient, but some think that the South Carolina and California cases, focused as they are on children, might open a new and effective strategy.
“The argument isn’t that the injury is that you haven’t paid an adequate rate, it’s that I’m not getting services I am entitled to,” said Dan Unumb, an attorney and executive director of the Legal Resource Center at Autism Speaks, a group that advocates on behalf of those with autism and their families.
According to an Autism Speaks survey of 33 states this year, South Carolina paid the lowest rate to ABA technicians, $17 an hour. By contrast, Alaska paid $76 an hour.
More relevant to South Carolina is that its neighbors, Georgia and North Carolina, pay more than $70 an hour.
‘It’s maddening’
Nevertheless, South Carolina is set to increase its rate again, to $31 an hour July 1. That would still be among the lowest rates in the country.
Emily Wright remains doubtful.
“It’s wonderful, and I’m grateful they raised the rate, but that won’t help with recruitment,” she said. “If you were just getting out of school, why would you come here instead of Georgia and North Carolina?”
Reagan, the oldest of three children, was diagnosed with autism relatively late, at age 12.
She qualified for Medicaid after she got her diagnosis and it was confirmed by the Department of Disability and Special Needs. Last summer, her mother said, the state Medicaid agency approved Reagan for 30 hours of ABA treatment a week.
Reagan’s caseworker provided a list of eight providers who offered ABA treatment, but Emily discovered that only two accept Medicaid.
“And the two that do take Medicaid are not accepting new patients,” she said. The wait, she was told, could be years.
For about two months, the family paid for ABA services out-ofpocket, but only for 10 to 15 hours a week. Emily said Reagan’s behavior changed dramatically. “She was more polite. She argued a little less. She was able to accept changes and things that didn’t go her way without so many meltdowns.”
But it was expensive, about $600 a month, so the Wrights were forced to stop the treatments. Since then, Emily said, “I’m seeing regression in her now.”
Emily said she and her husband hope to resume some ABA treatments, but it will be costly and still far less than Reagan needs.
“It’s maddening. There’s this wonderful therapy that would help, but we can’t get it. And every day my child is not improving, even though she’s got so much potential. One day she could live on her own. She could drive a car. It’s possible. Are those things guaranteed without (the treatment)? I just don’t know. I can’t say.”