By Linda Copeland
New York Daily News - January 27th, 2023 at 5:00am
In the coming decades, almost every American will have a friend or relative whose child has been diagnosed with autism — or will have a child with autism themselves.
That’s among the implications of the most recent data on autism from the Centers for Disease Control and Prevention. Today, the CDC says that one of every 44 children has been diagnosed with autism spectrum disorder.
There’s no cure for autism. But there are effective therapies — especially an approach known as applied behavior analysis, or ABA — that help kids live productive, fulfilling lives. Unfortunately, many insurers balk at fully reimbursing for ABA. That’s not something we should tolerate.
After intense public advocacy, now all 50 states mandate coverage of ABA in at least some state-regulated plans. Court decisions have made clear that mental health coverage in federally regulated self-funded plans must include coverage for ABA.
But some health plans make it difficult for patients to get the therapy they need through tactics such as low reimbursement. A 2022 report to Congress from three Cabinet agencies highlights that ABA is among the mental health services most commonly limited by health plans, even when doing so violates federal law.
Covering what helps. (Shutterstock/Shutterstock)
If insurers are allowed to dodge paying for this care, it’ll irreparably harm millions of children, their families, and society itself.
Autism is a neurobiological developmental condition that affects communication, sensory processing, and social interactions to different degrees that require different levels of support, ranging from individuals who need 24-hour care to those who need minimal-to-no support. Common symptoms include repetitive and ritualistic behaviors, reduced eye contact, lack of facial expressions and difficulty communicating both verbally and nonverbally.
Although symptoms can appear in children 18 months and younger, autism is most commonly diagnosed after the age of three. For many parents, a child’s diagnosis brings grief, anger, fear, and anxiety. After that, they may find themselves searching for costly services that should be available through their insurance or Medicaid coverage. But what awaits them is often a waiting list.
Caring for a person with autism requires patience, resilience, and resources — both financial and emotional. It’s not surprising that half of mothers with a child with autism suffer from depression, according to a recent study from the University of California, San Francisco.
But parents don’t have to struggle alone or despair. With proper therapy early on, children can experience a significant reduction in symptoms, to the point where they eventually may not need support.
Since the early 1980s, applied behavior analysis has helped people with autism reach their full potential. ABA therapy involves a wide variety of methods and applications, tailored to each specific child. These may include discrete trial training, where specific tasks are broken down into steps; incidental training, where children learn to respond to real-world situations; a choice-based system called pivotal response theory; and other strategies.
ABA therapy isn’t cheap. Behavior analysts, who design and implement individualized treatment plans, are highly skilled and are paid accordingly. They have master’s or doctorate degrees and typically possess at least one certification — since implementing these tailored therapies successfully requires significant knowledge and expertise. Kids often need dozens of hours of care each week in their most formative years. The tab adds up.
But it’s worth it. Hundreds of peer-reviewed studies have concluded that ABA therapy is highly effective, according to a report from the Lovaas Institute that looked at a wide array of sources, including state departments of health, national professional bodies like the American Academy of Pediatrics, and international data published in the Lancet and elsewhere.
Not treating symptoms of autism is far more costly, estimated in one study to be as a high as $3.2 million per child.
It is unconscionable when insurers try to shirk paying for care. Though many health plans are required by law to cover the therapy sessions themselves, they’re violating the spirit of that mandate by refusing to pay for preliminary assessments or treatment planning, limiting total hours of therapy for the child, or offering providers low rates of reimbursement.
By limiting patient assessments, insurers hinder clinicians’ efforts to individualize therapeutic approaches — and jeopardize the effectiveness of ABA. Having stacked the deck in their favor, insurers then cite limited patient progress as a reason to curtail or deny coverage.
But the evidence indicates that ABA works. It’s critical that insurers and policymakers allow the children and families who would benefit from the therapy to access it — and stop playing games with children’s futures.
Copeland is a physician in Sacramento, Calif. She is board-certified in pediatrics, developmental pediatrics, and behavior analysis.
Read the full piece by Linda Copeland on the New York Daily News here