Originally published August 12, 2013 at 6:33 PM | Page modified August 13, 2013 at 2:25 PM
WASHINGTON Autism advocates celebrated what they thought was a major victory when President Obama signed the Affordable Care Act (ACA) 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.
Q: What is autism, how is it treated and at what cost?
A: 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 and Prevention, 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.
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Q&A: How new health law affects those with autism