Life changing services for children are out of reach, say parents

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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 insurance company to adopt applied behavior analysis therapy for her daughter Mia, who ran the Down Syndrome, Campbell told lawmakers on Tuesday.

“And when I say this was a full-time job, I think that may be an understatement,” said Campbell.

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

Campbell and other parents of children with Down syndrome appealed to the Financial Services Committee to approve laws (H 1145, S 690) that would require private insurance companies and MassHealth to increase the cost of home-applied behavioral analysis for individuals take over with Down syndrome.

ABA is “a behavioral intervention in which complex skills are broken down into small steps, and those steps are repeated and reinforced many times,” said Angela Lombardo, program coordinator for the Boston Children’s Hospital Down Syndrome program. Not only does it help develop skills such as speaking, dressing, feeding, and making friends, but it is also “the mainstay of treatment for dealing with challenging and unsafe behaviors such as aggression and self-harm”.

Rep. Jack Lewis, the bill’s house sponsor, said current law requires insurers to cover ABA benefits for people with autism, including those with autism and Down syndrome. “But right now in Massachusetts there are many, many families where their insurance company doesn’t cover this vital benefit because the child doesn’t have additional diagnoses,” said Lewis, a Framingham Democrat. “Of course, many of these families cannot pay for this important service out of their own pocket, and many children with Down syndrome simply cannot access it.”

Andover mom Amy Genest said she believed regular ABA at home would be “re-educating” for her daughter Olivia and her family, but since Olivia’s single diagnosis of Down syndrome does not make her eligible for insurance, access to recommended services would be granted cost about $ 1,000 per week. “As parents, we don’t know how to adjust her behavior or develop the skills necessary to communicate clearly when she is afraid or hurt, or to give us the details of a particular incident,” said Genest. “As a parent, that’s terrifying. How can we develop the necessary skills ourselves to send Olivia into the world and protect her from dangerous situations or people? “

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

According to the Massachusetts Association of Health Plans, the Bay State requires insurers to cover more than 50 statutory benefits, which is one of the majority of statutory mandates in any state. The association said mandates add costs and decrease the flexibility of employers and individuals in purchasing insurance.

“Proposed laws requiring health coverage for additional benefits and treatments may not be effective or safe and will significantly increase healthcare costs in Massachusetts for small employers and individuals who purchase insurance,” said Lora Pellegrini, President and CEO of MAHP , in a statement that addresses the subject of mandatory benefits in general and has not single out any specific bills. “Existing government-mandated benefits account for more than $ 2 billion in government health spending annually, accounting for nearly 20% of the health insurance premiums paid by citizens and employees.”

Sarah Cullen, director of family support at Massachusetts Down Syndrome Congress, said the current landscape of ADA home services makes therapy available only to people with Down syndrome whose families can afford or who can afford to pay privately Having a parent who is “successful” is untangling a massively complex healthcare system and an unpredictable insurance industry. “

“People with Down syndrome can and will benefit from ABA services funded by the Department of Education during the school day,” she said. “However, your behavior problems and learning needs don’t stop when the school day is over. Instead, they often need the benefits of ABA services at home and in other social settings. “


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