Advocates urge lawmakers to extend MassHealth coverage for ABA therapy
Photo | Courtesy of Alison Kuznitz, State House News Service
Sen. Cindy Friedman and Rep. John Lawn co-chair a Joint Committee on Health Care Financing hearing on Tuesday in Gardner Auditorium.
Advocates and parents who have adult children with autism urged lawmakers Tuesday to extend MassHealth coverage of a behavioral therapy, while a top Senate Democrat raised financial concerns about the proposed mandate.
Refiled bills (H 1351 / S 871) would require MassHealth to cover applied behavioral analysis (ABA) therapy for clients ages 21 and older who have developmental or intellectual disabilities, or are on the autism spectrum. Last session, Beacon Hill passed a law requiring insurance coverage of ABA services for individuals with Down Syndrome, with the aim of mitigating hefty out-of-pocket costs for families.
ABA therapy helps individuals regulate themselves and control their behaviors, learn how to talk, and gain independent skills such as using the bathroom, according to Maura Sullivan, CEO of The Arc of Massachusetts advocacy organization. Private insurance already covers ABA, she said.
"MassHealth covers medically necessary ABA for children with autism -- and now, Down syndrome -- until they turn 21. But at this critical time of transition to adult services, they lose access to this intervention," Sullivan, who has two young adult sons with profound autism, testified at a Joint Health Care Financing Committee hearing. "But the need does not end. We have seen this cliff worsen because of the thousands of young adults that have no day programs due to the severe workforce shortage."
Testifying for the bills sponsored by Rep. Christine Barber and Sen. John Keenan, Sullivan said existing policy "disproportionately affects lower-income individuals who rely on MassHealth."
Stephanie Schweitzer Dixon of Marlborough, who has a 21-year-old son with a genetic disorder that causes profound autism and intellectual disability, called the age limit in MassHealth coverage "outright discrimination."
"Just because one turns 21, it doesn't mean that they're cured because they all of a sudden don't need any behavioral interventions, any therapy and supports," she said. "Do we do this for people who have cancer just because they turn a certain age? Do we just cut off their treatments? Do we just stop making payments for people who need medication for diabetes, medications for MS? We don't do that."
The bills from Barber and Keenan last session started in the Joint Committee on Children, Families and Persons with Disabilities, which sent them to study. Two sessions ago, their proposals cleared that panel and the HCF Committee, before stalling in the Senate Ways and Means Committee.
Sen. Cindy Friedman, co-chair of the HCF Committee, told Sullivan she assumed the "issue" with the legislation revolved around funding and asked for a "ballpark" estimate for expanded MassHealth coverage. The agency, which represents the largest chunk of spending in the state budget, could see drastic federal funding cuts as congressional Republicans advance their reconciliation bill.
"I hesitate to ask the question because I think I know the chair and I believe this shouldn't be about the money, and it's about the money -- whether or not we have the money to pay for it," Friedman said, as she referenced co-chair Rep. John Lawn. "So knowing what those costs are is really useful."
Friedman said lawmakers would need a study from the state Center for Health Information and Analysis.
A 2023 report from the state Autism Commission found that MassHealth spent $188.7 million on ABA services for 9,328 members under age 21 in fiscal 2023.
"In The Arc, we would love to work with you on thinking about how to do some cost containment on this population," Sullivan said. "You know, some ABA access would be better than none."
Herb Cabral of Clinton shared how ABA services helped his 30-year-old son, Joe, with autism to develop language skills and improve his "conversational capabilities."
"By not funding ABA services over 21, the state is compromising the investment made in individuals prior to 21," Cabral said. "Autism is a lifelong condition, and Joe will benefit from ABA throughout his entire life. Untreated individuals experience regression and skill erosion."
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