Life-changing children’s services out of reach, parents say

Boston Statehouse
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BOSTON, Mass. (State House News Service)–It took Leah Campbell countless phone calls and emails, multiple letters of support, and “lots of tears and frustration” to get her health insurer to agree to cover applied behavior analysis therapy for her daughter Mia, who has Down syndrome, Campbell told lawmakers Tuesday.

“And when I say it was a full-time job to do this, I think that might be under-exaggerating,” Campbell said.

She said ABA helped Mia “learn how to express her needs adaptively before she had the oral communication skills to do so” and helped her parents understand their daughter’s behavior, prepare in advance to reduce potentially unsafe situations and “create an environment where Mia would be able to build self-esteem, make gains and drastically improve her quality of life.”

Campbell and other parents of children with Down syndrome appealed to the Financial Services Committee, asking the panel to endorse legislation (H 1145, S 690) that would require private insurance companies and MassHealth to cover the costs of in-home applied behavior analysis for individuals with Down syndrome.

ABA is “a behavioral intervention that involves breaking down complex skills into small steps, and teaching those steps with frequent repetition and reinforcement,” said Angela Lombardo, the program coordinator for the Boston Children’s Hospital Down syndrome program. In addition to helping develop skills like speaking, dressing, feeding and making friends, she said ADA is also “the mainstay of treatment for managing challenging and unsafe behaviors such as aggression and self-injury.”

Rep. Jack Lewis, the bill’s House sponsor, said current law requires insurers to cover ABA services for individuals with autism, including those with both autism and Down syndrome. “But currently in Massachusetts, there are many, many families in which their insurance company will not cover this vital service because the child doesn’t have additional diagnoses,” said Lewis, a Framingham Democrat. “Many of these families, of course, cannot cover this important service directly out of pocket, and many kids with Down syndrome simply can’t access it.”

Andover mom Amy Genest said she believes in-home, regular ABA would be “transformational” for her daughter Olivia and their family, but that because Olivia’s single diagnosis of Down syndrome makes her ineligible for insurance coverage, accessing the recommended services would cost about $1,000 per week. “As parents, we do not know how to adapt her behavior or build the skills necessary to clearly communicate to us if she’s scared or hurt or to provide us with the details of a specific incident,” Genest said. “As parents, this is terrifying. How can we build the necessary skills ourselves to send Olivia into the world and be able to protect her from dangerous situations or individuals?”

The committee took up the bill at a hearing that also featured several other bills proposing new or expanded health insurance coverage mandates.

According to the Massachusetts Association of Health Plans, the Bay State requires insurers to cover more than 50 mandated benefits, among the most legislative mandates of any state. The association said that mandates add to costs and reduce employers’ and individuals’ flexibility in purchasing coverage.

“Proposed legislation that mandates health plan coverage of additional services and treatments may not be efficacious or safe and will significantly increase health care costs in Massachusetts for small employers and individuals purchasing insurance,” MAHP President and CEO Lora Pellegrini said in a statement that addressed the topic of mandated benefits broadly and did not single out specific bills. “Existing state-mandated benefits account for more than $2 billion dollars in state health care spending annually, accounting for almost 20% of the health insurance premiums paid by state residents and workers.”

Sarah Cullen, family support director for the Massachusetts Down Syndrome Congress, said the current landscape around at-home ADA services leaves the therapy available only to people with Down syndrome whose families can afford to pay privately, or who have a parent that can “successfully untangle a massively complex health care system and an unpredictable insurance industry.”

“People with Down syndrome can and do benefit from ABA services during the school day, as funded by the Department of Education,” she said. “However, their behavioral issues and learning needs do not stop when the school day ends. Instead, they often need the benefits of the ABA services at home and in other social settings.”

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