Autism is a well known disorder without any known cure. Affecting neural development, autism is usually diagnosed in early childhood, when toddlers with the disorder display impaired skills in social and verbal interaction. The good news is that although there is no cure, many people with autism are able to cope thanks to therapy and sometimes medication. The bad news, however, is that autism treatment is expensive. Very expensive.
Different patients may manage their autism in different ways, but one of the most popular forms of care is known as Applied Behavior Analysis, or ABA. This therapy involves using positive reinforcements to improve behavior; for example, an ABA therapist will be trained in how to ignore a tantrum and encourage a child to redirect their energy toward an activity, or how to motivate a child to engage in social interaction. ABA is intensive and one-on-one between patient therapist - and can cost more than $50,000 per year.
Other autism care includes speech therapy, occupational therapy, and drugs such as antidepressants and antipsychotics. A family will often use more than one method of care, and may spend some time finding the right treatment for their child. In the end, it all amounts to an expensive disorder, for the patient as well as the health care system. A 2012 study by researchers from the University of Pennsylvania and the London School of Economics found that autism is costing $137 billion every year, and that within his or her lifetime, an autism patient will spend more than $2 million for care.
In the United States, autism care becomes complicated and often costly due to varying insurance rules. Thirty-four states mandate that insurers operating in the state must pay for autism health care; this coverage will usually include ABA and other forms of treatment. However, even in a state that requires autism coverage, these rules don't apply to every insurer - corporate and large group policies, for example, may be exempt. Unfortunately, most Americans receive health insurance through their place of work, and many people may therefore find themselves residing in a state that mandates autism coverage, yet paying into a policy that doesn't offer it.
Advocates for autism also report that generally speaking, insurance companies can be less than willing to pay for autism care. A treatment like ABA, for example, may be defined by an insurer as more educational than therapeutic, and unproven in its ability to improve the symptoms of autism. Insurance companies may also be reluctant to cover ABA due to its very high costs; some industry advocates have pointed out that if more insurers were to offer payments for ABA, the result would be noticeably higher premiums for everyone on the policy.
Then again, autism advocates, patients and their families have been somewhat encouraged by recent progress in gaining more support for autism care to be seen as a basic service that should be offered by an insurer. In 2012, a mandate was passed so that the insurance given to federal employees would be required to offer autism treatments. This mandate applied to the insurance used by 8 million federal workers and their families, as well as members of the military.
Of course, autism advocates are also wondering how the soon-to-start online insurance exchanges in each state will affect autism care and coverage. To begin, it's important to note that each state must have a 'benchmark plan' offering certain essential benefits; maternity care, for example. When the ACA was first imagined, the White House assumed that the federal government would define these essential benefits for all states; due to political pressure, however, that policy changed so that states could have some power in deciding on their own essential benefits to include in the benchmark policy. Every plan offered on any state's exchange must meet the criteria set by that particular state's benchmark plan.
The federal government is offering a suggested model, and states can choose whether to use that federal example as their benchmark plan, or develop a different policy with different essential benefits. Autism advocates are encouraging states to make autism treatment part of the benchmark, so that all policies on a state exchange will also have to offer that care. So far, however, the numbers are less than promising - of the 34 states noted above that require insurance providers to cover autism treatment, a mere 11 have created a state benchmark plan that includes ABA or similar autism care.
But, are there any other laws autism advocates can use when encouraging insurance companies to cover autism treatment? Because autism is a mental health issue, the 2008 Mental Health Parity and Addiction Law should mean that all insurers across the nation offer better autism coverage. The Parity law says that insurance plans must offer equal financial coverage for both physical and mental health conditions; however, a final rule to make the Parity law enforceable at state level has not yet been put into place.
When state insurance exchanges open this October, advocates on both sides may seek more opportunity to make their opinions known. The U.S. department of Health and Human Services has said that it may consider setting national standards that require all insurers to cover autism treatment, but such a rule would not come into effect until at least 2016. In the meantime, autism patients and their families most likely be putting a great deal of thought into finding an individual health plan that offers autism treatment, or opting to pay for additional autism coverage on top of a corporate policy. Seeing as the U.S. Centers for Disease Control reports that more and more children are being diagnosed with autism every year, it's a good bet that autism care will be an important issue in discussing essential benefits in state insurance marketplaces for some time to come.