Ever since United States President Barack Obama signed the Affordable Care Act (ACA) in 2010, autism advocates have been rooting for what they believe is a major achievement in securing autism rights. They hoped the new law would force insurance companies to cover costly and potentially life-long treatments for those with incurable autistic conditions. But the law has left it up to the states to define, subject to some parameters, the “essential benefits” that insurance companies will provide.

The coverage requirement for autism treatment, such as speech and occupational therapy and behavioral counseling, generally varies between states. The US Department of Health and Human Services has said it will consider implementing a national standard by 2016. States, until then, would decide what treatment insurance companies should cover.

The costs

Applied behavior analysis (ABA) is the most common treatment for autism. But it requires intensive, personalized therapies that often cost more than $ 60,000 a year. Depending on the severity, trained ABA therapists typically spend up to 40 hours a week with a child. New studies by researchers at the University of Pennsylvania have estimated that lifetime autism treatment costs an average of $ 2.3 million.

The point of contention

The American Academy of Pediatrics, the American Medical Association, and the US Office of the Surgeon General endorse ABA. But insurance companies argue that ABA is primarily educational and not medical. Consumer advocates argue that ABA coverage is so expensive that it drives up the insurance premium and makes basic health inclusion inaccessible to millions.

What the states have done

A total of 34 states – Indiana was the first in 2001 – and the District of Columbia, have passed autism insurance mandates that require companies to cover ABA and other methods of autism treatment in some of their policies. All states that have an autism mandate require insurance companies to cover ABA for state employees. State laws differ far beyond that. Some are applicable only on an individual health policy, while others cover large corporations and small groups.

The federal government, since last year, has begun to cover ABA for its eight million employees, dependents and retirees. Family members of military personnel have also been included under ABA insurance coverage.

But the referral plans in many of the states that have autism mandates do not include autism mandates. The Ohio legislature, for example, is considering moving a bill on autism. In Alaska, the state’s insurance chief has written to lawmakers, confirming that the newly formulated autism mandate will apply to policies sold on the federally administered exchange.

Habilitation and autism coverage

The US federal government has listed 10 categories of autism health care services that states must cover under their essential benefits. Two of them deal with autism: habilitation and mental health services. These are defined as therapies for children with developmental disabilities. The department of health and human services has told states to disclose the services covered by the habilitation. The government is also considering a new autistic-only health law, in addition to the national standard in 2016.