Ashley Manley hand-fed her son Zephaniah a lunch of chicken tenders and fries Thursday.
“It’s hard that I’ve had to feed him like a baby for nearly six years,” Manley said of “Zeph,” who, at 5, wears diapers and does not talk.
Shortly after he turned 4, Zeph received the diagnosis that Manley had suspected since he was an unsmiling infant who barely could sit up on his first birthday. “It’s not my fault,” Manley said. “It’s autism.”
Two years after his diagnosis, Zeph’s family still is waiting for him to begin receiving the intensive, in-home therapy that a pediatrician says he needs for up to 40 hours a week.
Behind the delay is South Carolina’s lowest-in-the-nation reimbursement rate for the therapy, advocates and providers say.
▪ Rates are so low – $13.58 an hour – that providers are backing out of the program, refusing to take on new patients like Zeph, who are covered by Medicaid, the joint federal-state insurance program for the poor and disabled.
▪ A 27 percent increase — to $17.28 an hour — that goes into effect July 1 will leave South Carolina still in dead last, trailing the rates paid by the second-lowest state by about $13 an hour. The national average is $43 an hour, according to Autism Speaks, a national advocacy group.
▪ Making matters worse, an expansion of the program next month to include older patients could add hundreds of children and adults to the list of Medicaid patients awaiting autism treatment.
1 in 68 children affected
Autism affects about 1 in 68 children, according to the Centers for Disease Control and Prevention.
The neurological disorder has some genetic connection though little is known about it. Experts say autism is “not a thing” but a “set of symptoms” that define people differently, said Cecelia Knight, a past president of the S.C. Association for Behavior Analysis.
Some people with autism function at high levels. Others do not.
Self-injury, saying the same thing over and over again, and self-stimulation – ranging from “repeatedly flicking your finger in front of your eye all the way to obsessively talking about paleontology” – could be signs of autism or not, Knight said. “It’s all over the spectrum.”
Children with severe autism cannot afford to wait for therapy if they are to become independent when older, advocates say.
That means the stakes are high for children like Zeph who now are waiting for therapy.
‘We’ve fought and fought and fought’
Most S.C. children eligible for autism treatment, paid for by Medicaid, are not receiving it, according to the state Health and Human Services Department. Of the 1,425 children approved for the treatment, the agency has received claims for only 585.
Advocates say the reason is clear – there aren’t enough therapists because of the low pay.
A survey of autism therapy providers showed 84 percent were not going to accept new Medicaid patients starting July 1, according to the S.C. Association for Behavior Analysis. Low reimbursement rates were the top reason cited.
Some providers – including Palmetto Autism Interventions, where Zeph has been wait-listed for treatment – are shutting down.
“We’ve fought and fought and fought for them to raise the rates,” said PAI co-owner Beth Bunge, citing high costs and turnover as the reasons that she is shuttering her service on July 1.
The move will force roughly 100 patients in Columbia and Greenville, including 74 on Medicaid, to seek help elsewhere.
Manley said she now is looking for another waiting list for her son.
‘A denial of access’
Others are sounding alarms, too.
This month, the S.C. Department of Disabilities and Special Needs Commission voted unanimously to reject a contract with Health and Human Services to run the autism therapy program, saying providers will not participate because the rates that the state agency pays are so low.
Contract negotiations are continuing, but so are the concerns about the program’s viability.
“We want to expand autism coverage, but we can’t expand it without a provider network and a rate that is good enough,” said Bill Danielson, the Special Needs Commission’s outgoing chairman.
Starting July 1, the autism program will expand to cover all Medicaid patients under age 21 who are prescribed the therapy. There will be no limit on how much therapy they can receive.
Under the old program, Medicaid covered up to $50,000 in treatment for a limited number of children up to age 10, based on the availability of funding. As of May, more than 1,200 S.C. applicants were waiting to be approved for Medicaid-paid autism therapy.
The state has a legal obligation to ensure there are enough autism therapy providers in its network to meet the demand, said state Rep. James Smith, D-Richland, who this year proposed raising the reimbursement rates to $40 an hour, up from the current $13.58.
“Every other state in the union provides a competitive rate” so children with autism can “have a life that is not in an institution,” Smith said, arguing for the raise, which lawmakers tabled.
Smith said the state’s reimbursement rate amounts to “a denial of access.”
‘Independent one day’
Zeph giggles as he spins inside a canvas pod hanging from a chain from the ceiling of his bedroom. The activity is his speech therapist’s way of rewarding him for pointing to pictures of socks and shirts when she says those words, then signing that he wants to “spin.”
Zeph sometimes makes the “sssss” sound that starts one of his favorite activities.
He’s “stimming,” Manley said, describing Zeph’s repetitive motions that feed what appears to be a torturous need for stimulation.
Since he was 1, Zeph has been going to physical therapy because he was diagnosed with global developmental delay. Eventually, his family added occupational therapy and speech therapy.
While important and helpful, none of the therapies compare to the applied behavioral analysis – or ABA therapy – that Zeph was prescribed after his autism diagnosis, his mother said.
The treatment is “a huge investment of time, and the only thing that research shows can take a child who is not talking or toileting and teach those skills,” said Knight, past president of the S.C. Association for Behavior Analysis.
Zeph gets an hour a day of ABA therapy in school, helping him act appropriately in a classroom. But that therapy does not address his behavior at home, Manley said. It also ended when school let out.
Under ABA therapy, Zeph would be shadowed by a therapist for several hours a day in his home.
The therapist would help Zeph and his family develop strategies for correcting inappropriate behaviors – grabbing hair and other objects, biting for the oral stimulation or gorging himself with food because he cannot regulate his impulses.
Zeph faces big challenges as he becomes an adult, his mother says.
But, with ABA therapy, he may have a chance.
“My biggest hope is that he will be independent one day,” Manley said. “I don’t think he will be. I think we’ll have him forever.
“But just that we could go out and (it) not be so difficult.”
Treating autism in SC
By the numbers
2: Number of the state’s largest treatment providers that have stopped seeing S.C. autistic children covered by Medicaid, according to Dr. Kevin Wessinger, president of the S.C. Chapter of the American Academy of Pediatrics, in a letter encouraging the governor to support a rate increase
70: Percent of S.C. children with autism covered by Medicaid
30: Percent of S.C. children with autism covered by private insurance
1 in 68: Number of children nationally diagnosed with autism spectrum disorder
About 7,500: Number of South Carolinians, 21 and under, with autism
1,425: S.C. children accepted to receive Medicaid-funded therapy
1,259: Number of South Carolinians requesting Medicaid pay for autism therapy
585: S.C. children who have received some level of service
84: Percent of S.C. therapy providers who say they will not accept new Medicaid patients as of July 1
SOURCES: American Academy of Pediatrics S.C. Chapter; Centers for Disease Control and Prevention, S.C. Department of Disabilities and Special Needs, the S.C .Department of Health and Human Services