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.

States require insurers to cover nearly 2,300 categories of illness, treatments, and screenings. Every state with an autism mandate requires insurers to cover ABA for state employees. Beyond that, state laws vary widely. Some apply only to individual health policies, while others include small group and large corporate policies. (No state mandates apply to the self-funded policies large employers typically offer, which is the type of coverage one-quarter of insured Americans have.)

Last year, the federal government began requiring coverage of ABA for the nation’s 8 million federal employees, retirees and their dependents. Insurance coverage for members of the military also includes ABA treatments, with some restrictions.

Will existing state insurance mandates apply to policies sold on the state insurance exchanges?

Maybe.

The ACA says state insurance mandates in place before Dec. 31, 2011 may apply to policies offered on the exchanges. If a state requires commercial carriers to cover ABA, that same requirement may be applied to policies sold on its exchange.

However, when the administration directed states to define “essential benefits,” every state either chose a “benchmark plan” (defined as the small business plan in the state with the most beneficiaries) or let the federal government choose a similar plan for them. If a state’s benchmark plan includes a requirement to cover ABA and other autism treatments, then all the plans on its exchange must do the same.

But in 11 of the 34 states with autism mandates, the benchmark plan does not include autism coverage, according to an analysis by advocates Autism Speaks. In those states, as well as the 16 states without autism mandates, state officials have the option of adding autism coverage as a required “supplemental” plan.

In Ohio, where the legislature is currently considering an autism bill, Gov. John Kasich, a Republican, mandated autism coverage by executive order in December 2012. Alaska’s insurance chief, Bret Kolb, wrote to state lawmakers last month confirming that Alaska’s newly-minted autism mandate would apply to policies sold on the federally-run exchange.

How do state mental health parity laws affect autism patients?

According to the National Conference of State Legislatures, every state but Wyoming now has a mental health parity law on the books, requiring that when insurers cover mental illness and/or substance abuse they do so on an equal financial basis with physical illnesses. A federal law – the Mental Health Parity and Addiction Act of 2008 – also requires equal treatment, but the Obama administration has yet to complete the federal rules that would enable states to enforce it.

Parity laws only require carriers to pay as much for mental health treatments as they pay for medical treatments, with the same co-pays, deductibles and coverage limitations. The laws do not require carriers to cover specific treatments, such as ABA treatments. Still, state parity laws, combined with mandates, will maximize coverage for any given child.

What is “habilitation” and how does it affect autism coverage?

The federal government lists 10 categories of health care services states must include in their essential benefits. Two relate to autism: mental health services and habilitation, which is defined as therapies for children with developmental disabilities. In accepting state benchmark plans last year, HHS told states they must spell out what services are covered under habilitation. The way states define habilitation and how that plays out after 2014, when insurance companies begin processing claims, remains to be seen.