As NC lawmakers focus on autism therapy costs, families worry about access to therapy

Families of people with autism and healthcare providers urged North Carolina lawmakers Friday to protect access to Medicaid coverage of applied behavioral therapy as legislative leaders scrutinize the therapy and its providers.

ABA therapy teaches people on the autism spectrum new ways to communicate and do daily tasks. 

Republican lawmakers have raised concerns about the rapidly rising cost of Medicaid coverage for ABA. Some have questioned whether some providers are engaged in fraudulent billing. Families and healthcare providers worry that it could lead to policies that decrease services for children who rely on them.

Medicaid spending on ABA therapy has more than quadrupled in recent years, climbing from about $121 million in 2022 to more than $500 million last year, according to data from the state Department of Health and Human Services. The department projects Medicaid spending on the treatment will exceed $1 billion in the coming years. 

That increase fueled debate over House Bill 696, which closed a Medicaid funding gap when it was signed by Gov. Josh Stein in April. 

Stein said following his signature,  the new law gives the state’s Medicaid partners tools to manage costs. “It gives them the ability to help people make choices with respect to where healthcare is delivered, and it gives them the ability to look at better health outcomes for both taxpayers and for the patients,” Stein added. 

Lawmakers are also considering House Bill 34, a proposal that would add oversight and restrictions on providers.

Parents and healthcare providers worry the legislation could reduce access to ABA therapy. Joanna Domino, a Durham mom whose 5-year-old son is on the autism spectrum, was joined by Democratic lawmakers Friday at a news conference at a therapy provider in Chapel Hill.

Domino said the treatment has been extremely effective for her son, Aidan. Before treatment, she said, everyday challenges could trigger hourlong episodes. Now, she says: “His meltdowns are like five minutes, not an hour.” 

Without ABA therapy, she said, “I don’t know where we would be.”

Republican lawmakers say the surge in spending raises concerns about accountability.

The Office of the State Auditor has launched a review of Medicaid spending, and investigators for the state Department of Justice are examining potential improper billing and fraud. State health officials say they are working to “weed out bad actors” and recover overpayments.

“It’s extremely important that we’re very judicious with our dollars and our resources to make sure that the people that need these services are getting them,” Sen. Benton Sawrey, R-Johnston County, said during a Senate Health Care committee meeting in April. 

Democratic lawmakers have pushed back, warning that tighter restrictions could limit access to care.

“Families need these services,” Rep. Zack Hawkins, D-Durham, said Friday at the news conference. “It is not fraud. It’s not a risk.”

More changes could be coming to North Carolina’s Medicaid program as lawmakers weigh how to curb fraud and waste in the multibillion-dollar system.

More than 3 million North Carolinians are on Medicaid, though federal proposals could reduce enrollment in coming years.

Lawmakers previously questioned Department of Health and Human Services leaders and the state attorney general about fraud prevention efforts. The Senate has advanced a bipartisan bill aimed at improving Medicaid program integrity, including stronger data tracking, login safeguards, and expanded background checks for company leadership.

Sawrey has said many provisions were requested by DHHS to improve oversight.

The bill would also prohibit new ABA providers from entering the Medicaid network, while allowing existing companies to continue operating.

“We’re proposing to close the networks for ABA services, peer support services, and community support services,” Sawrey said last week during a Senate Health Committee hearing. “DHHS will have to undertake to make sure there’s adequate services in the state of North Carolina.”