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Q&A: How ACA Will Affect People With Autism

Is autism covered in my state by 'Obamacare'?

Christine Vestal | 8/12/2013, 6 a.m.
Autism and ACA Adam Rotmil and Christine Vestal for Stateline

Autism advocates celebrated what they thought was a major victory when President Barack Obama signed the Affordable Care Act in 2010: They expected the law to require all insurance companies to cover pricey, potentially lifelong treatments for those with the incurable condition.

But instead of creating a national standard for autism coverage, the administration bowed to political pressure from states and insurers and left it to states to define, within certain parameters, the “essential benefits” that insurance companies must provide.

Coverage requirements for autism treatments, such as behavioral counseling and speech and occupational therapy, already vary from state to state. Far from smoothing out those differences, critics say the ACA will add a new layer of complexity.

The U.S. Department of Health and Human Services (HHS) says it will consider setting a national standard in 2016. Until then, states will decide what autism treatments insurance companies must cover.

What is autism, how is it treated and at what cost?

Autism is a mental disorder affecting more than 2 million Americans and tens of millions of people worldwide. According to the U.S. Centers for Disease Control, one in every 88 children in the U.S has the condition, and the number is rising. Paying for treatment can be financially catastrophic to families.

Symptoms of autism first appear from birth to early childhood, and include mild to severe social, communication and behavioral challenges as well as repetitive behaviors. Treatments include counseling, speech and physical therapy and medications.

Advocates say applied behavior analysis (ABA), in which a therapist reinforces positive behaviors in the patient, is essential to helping children with autism reach their full potential. ABA, developed in the 1960s, has become the most widely used autism treatment. But it requires hours of intensive, one-on-one therapy, and costs as much as $60,000 a year.

Depending on the severity of symptoms, a trained therapist using ABA may spend as many as 40 hours a week with a child. A new study by researchers at the University of Pennsylvania and the London School of Economics estimates the cost of treating a person with autism during his or her lifetime is $2.3 million. Autism costs Americans an estimated $126 billion annually, a number that has more than tripled since 2006.

Who opposes broad coverage of autism treatments?

ABA is endorsed by the American Medical Association, the American Academy of Pediatrics, and the U.S. Surgeon General. But insurance companies often object to paying for it because they say it is unproven and is largely educational, not medical. Consumer advocates led by the Council for Affordable Health Insurance also argue that covering ABA is so costly it causes insurance premiums to rise, making basic health coverage unaffordable for millions of Americans.

What have states done to help ensure coverage of autism therapies?

Starting with Indiana in 2001, a total of 34 states and the District of Columbia have enacted autism insurance mandates, requiring carriers within their borders to provide coverage of ABA and other autism treatments in some or all of their policies.