South Carolina Medicaid ushers in changes to autism services | Your Health

Erin Bailey’s son was diagnosed with autism when he was 4 years old, but she long suspected he was different than other children.

As a toddler, Levi would wake up suddenly from nightmares and lose hours of sleep. He was easily disturbed by loud noises and became increasingly destructive.

“He tore the curtains down in my house,” said Bailey, a Georgetown lawyer. “He doesn’t see any boundaries. We thought we had our house childproofed, and it’s not even close.”

Levi struggled at day care, too, running out of his classroom and frequently crying. He wouldn’t cooperate during activity time or walk in line. 

Eventually, the day care asked him to leave.

“What they said to us was, ‘We cannot care for your child,’ ” Bailey said. 

Meanwhile, Bailey and her husband waited for months to see a specialist at the Medical University of South Carolina. All this time, they thought Levi struggled with obsessive-compulsive disorder or attention deficit disorder. Two years ago, he was officially diagnosed with autism. 

“It was still a huge punch to the gut to hear it from an MD,” she said. 

Throughout the United States, experts believe 1 in 68 children is affected by autism. But Bailey, and other parents like her, say the South Carolina Medicaid program isn’t doing enough to help her child. 

Three years ago, the federal Centers for Medicare & Medicaid Services issued a mandate that required state Medicaid agencies to cover services for children diagnosed with autism.

This includes, in some cases, one-on-one therapy called Applied Behavior Analysis, which is intensive and expensive but considered by experts the gold standard of treatment.

They say children with severe autism should be exposed to ABA therapy early and often so that they can practice crucial skills, such as using the bathroom and learning to empathize with other people.

Levi, for one, needs ABA therapy. His autism diagnosis qualifies him for Medicaid benefits, but Bailey can’t find a treatment provider who accepts this insurance. The rate South Carolina Medicaid pays for applied behavior analysis — about $17 an hour — is simply too low, she said. 

“It’s crazy,” she said. “We could double our rate and still be the lowest. North Carolina reimburses at $50 a hour.”

Because Bailey and her husband can’t find a treatment provider who will accept such low hourly rates, they pay for Levi’s therapy themselves. 

“It’s so much money every month,” she said. “It’s a mortgage payment.”

Next year, this may change. S.C. Medicaid Director Joshua Baker wants to spend another $13.1 million during the 2018-2019 budget year to increase the reimbursement rate for ABA therapy from about $17 an hour to $24 an hour. If approved by the General Assembly, most of these new costs would be paid for by the federal government. 

+2  Joshua Baker

Joshua Baker is the director of the South Carolina Medicaid agency. Provided

“What we’re committed to doing is monitoring the market and continuing to adjust our reimbursement,” said Baker, who was named the new Medicaid director in November. 

This increase is a step in the right direction, but it’s not enough, said Lorri Unumb, vice president for state government affairs at Autism Speaks, a national advocacy group. Georgia, like North Carolina, also pays providers $50 an hour for Applied Behavior Analysis, she said. 

“I think providers (in South Carolina) were hoping to get around the $40 mark,” Unumb said. “I think we could do better, but I’m very appreciative that the state has taken note of the issue.”

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Lorri Unumb is the vice president of state government affairs for Autism Speaks. File/Wade Spees/Staff

The state Medicaid agency is ushering in another big change this month. For years, children with autism in South Carolina only qualified for government benefits through a waiver program called the Pervasive Developmental Disorder Program.

But that program, administered by the S.C. Department of Disabilities and Special Needs, capped participation at 750 children at any given time. Hundreds of others who needed help were relegated to a waiting list. 

Later this month, that waiver program will close. Any child diagnosed with autism who applies and qualifies for benefits will now receive them directly through the Medicaid agency. 

Baker said it’s too soon to know how this change will impact the agency’s budget.

“We don’t have a complete picture yet,” he said. 

Monica Restante hopes these changes will help her family. 

Restante’s son Aiden, 4, suffers from autism. Like Levi, Aiden also qualifies for Medicaid benefits, but Restante has struggled to find a provider in the Summerville area who offers ABA therapy and will accept her son’s Medicaid plan. She criticized the Medicaid agency for writing so many restrictions into its reimbursement contract. 

Her primary health insurance plan pays for some of the costs associated with Aiden’s ABA therapy, but her family still spends about $7,000 a year out-of-pocket to cover the treatment. 

It’s worth every penny, Restante said. Aiden has benefited from ABA therapy for about a year now, and she’s noticed a “huge difference.” 

“He will answer questions now. He has words. He has more empathy. He seems to care if somebody gets hurt,” she said. “There’s no way not to have ABA. It’s like a lifesaver.”

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