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Progress and Challenges in Accessing Treatment for People with Autism

Debora Thivierge, BCaBA, CBAA, attended her son’s high school graduation last spring, and looked on with pride as he started college this fall. This rite of passage was not something doctors who diagnosed her son with autism 16 years ago would have encouraged her to strive for. It’s a sign of the tremendous progress that has been made in the systems of care for people with autism. This has occurred largely through the efforts of incredible parents like Debora, and thousands of others across the country who have devoted years to expanding access to treatment and services for people with autism.

Autism is a complex neurobiological condition requiring care and assistance on multiple levels. One in 68 children in the U.S. is diagnosed on the autism spectrum, according to the Centers for Disease Control and Prevention. It is about 4.5 times more common among boys, with 1 in 42 boys and 1 in 189 girls having autism.

It was Thivierge’s experience as a parent of a child with autism that led her to establish the ELIJA School and Foundation on Long Island, New York, in 2002 with the goal of improving programs and services by providing training on best practices in autism treatment. She will be the first to tell you how many barriers and challenges they had to be overcome, and how many still exist.

A major catalyst for the expansion of access to treatment has been legislative mandates passed in New York and 43 other states, requiring insurance to cover medically necessary treatment for autism, including, but not limited to, Applied Behavior Analysis (ABA) Therapy, one of the most widely prescribed and efficacious therapies for autism. For parents like Thivierge and this author, who led the grass-roots effort to pass a similar law in Massachusetts, the legislation has only been a first step. It’s taken a tremendous amount of time, effort, and enforcement for families to actually be able to access the treatment mandated under the law.

In New York state, the challenges became apparent shortly after the autism insurance reform law was passed in 2011. For two years, families were blocked from accessing ABA because insurers required the nationally board-certified behavior analysts (BCBAs), to obtain a New York state license to qualify for insurance reimbursement. The problem was that the state had no process to license behavior analysts at that time, and it took two years before a licensure process was established. Even now, providers must complete a program at a New York-approved educational institution to obtain a license, but there are not many programs and only a few out-of-state programs are approved by the state. Meanwhile, families are unable to access treatment, often during a child’s younger years, where research shows that treatment can dramatically change the developmental trajectory for a person with autism. Autism advocates in New York are working to expand education and training options for individuals who would like to obtain a license.

In Massachusetts, regulators blocked similar attempts by insurers, and required them to reimburse BCBAs for treatment when the law went into effect starting in 2011. (A behavior analyst licensure bill was subsequently passed and went into effect in early 2016). However, Massachusetts families encountered other barriers with certain carriers. In February of this year, the Massachusetts Attorney General’s Office reached a settlement with a health plan over allegations that it prevented access to coverage of ABA treatments by requiring parents to be present at 100 percent of treatment sessions and not covering ABA in day care or preschools. As part of the settlement, the health plan agreed to reimburse members who paid out-of-pocket for ABA therapy and providers who returned payments from the health plan because of its policies. But experience showed that most families affected by these restrictive policies simply went without treatment, and/or sought alternate coverage to access ABA, often at great expense.

Numerous other challenges face families. The autism insurance mandates vary by state, which results in different coverage, depending on where you live. They don’t apply to companies that self-insure their own workers and some mandates set caps on annual dollar amounts or the number of hours of treatments, or set age limits.

Self-insured employers have been slow to adopt coverage. In Massachusetts, Harvard University adopted coverage for ABA in 2016, after five years of strong advocacy from parents and others. Massachusetts Institute of Technology and Boston University adopted coverage a few years earlier, but only cover ABA for children ages 3-6. Ironically, these are institutions that are at the forefront of cutting-edge autism research, yet their employees struggle mightily to obtain care for their children. Thousands of other families insured through federal employee plans, unions, and other large employers are still unable to access treatment without obtaining alternative coverage.

And for those with insurance, Thivierge notes, “it’s very difficult to find providers and it’s very competitive.” In many cases, providers take on unmanageable caseloads, and the quality of care suffers. As with other health care providers, parents and guardians need to consider the skill set of the provider, how long the provider has been practicing and where the provider was trained and educated. At the Autism Insurance Resource Center, we regularly provide families with reprints of an Exceptional Lives Blog post that outlines the 10 questions you should ask when searching for a quality ABA provider.

Insurance coverage for autism has been a catalyst for systemic change across the country in how people with autism access treatment and services. For those who are able to access treatment, it can be transformative. As one Massachusetts parent wrote to our center, “the treatments available are an integral reason my son continues to have the opportunity to live at home, stay in his community and remain in his school.” But so much more needs to be done to eliminate barriers, improve access, and provide support to ensure that everyone with autism benefits. So that, like Thivierge’s son, all children with autism will have access to treatments and have the opportunity to graduate from high school, attend college, and grow into adults who live, work and thrive.

Amy Weinstock is also an instructor in the University of Massachusetts Medical School’s Department of Psychiatry. She can be reached by email at amy.weinstock@umassmed.edu or by phone at (774)455-4056.

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