Aid for Autism: How We Can Win Coverage for Mental Health

Families with autistic children could find the relief they need in the form of the Affordable Care Act.


Joshua Lott/Reuters

The health care world has seen much debate concerning a divide between mental disorders and physical illnesses -- and the extent to which both are covered by insurance providers. Susan Parish at Brandeis University offers a paradigm of this discussion by focusing extensively on the complicated, and often expensive, relationship between autism and treatment coverage. Fortunately, it appears the care of autism has the chance of becoming more accessible and less costly due to the newly-passed Affordable Care Act -- that is, if states comply.

To understand the issues at hand, it's probably best to review our general understanding of autism. First and foremost, autism is a neural development disorder. It alters the organization of neural cells and their synapses, leading to differences in information processing. In terms of symptoms, autism is most well-known for causing difficulties in social interaction as well as the performance of repetitive -- and often ritual -- behavior. But the disorder is not only limited to association with intellectual disabilities, according to Autism Speaks. Problems with sleep and gastrointestinal issues can also be present.

Although these symptoms are well-catalogued and the ability to detect the disorder early has improved, autism still faces two challenging-- and uncertain-- variables: its cause and its cure.

According to the National Institute of Neurological Disorders and Stroke, both genetics and environmental factors contribute to the development of autism. Although a number of different genes have been identified as responsible for at least some part of the disorder, their internal interactions are complex and are not well understood.

While no known cure for autism exists, the research by Parish suggests that the care and management of autism might be more pressing for the time being -- and much more deserving of reform.

As Parish's report indicates, there are still various options available in the care of autism (despite the lack of a definitive cure). Therapy and behavioral interventions can be used to target specific symptoms and are often tailored to each child's individual needs. If implemented early on, intensive therapy -- which can include skill oriented training instruction-- helps to better the patient's social and verbal skills. And in addition to these interventions, doctors will sometimes to turn to medications, such as anti-depressants and stimulants.

But as the study points out, the cost of these services and prescriptions can get problematically steep -- and it all depends on location.

That's where parity laws come into play. In essence, parity was created to counteract discrimination in coverage for different illnesses. It requires that insurers or health care service plans provide the same level of benefits for mental illnesses and substance abuse as they do for physical problems.

The Mental Health Parity and Addiction Equity Act of 2008 is a federal parity mandate, concluding that if states are to offer mental health treatment, they have to be at parity level. But according to Sarah Steverman, Director of State Policy at Mental Health America, there is an important distinction to be made: this federal statue does not, in fact, require mental health benefits to be provided at all.

The extent of parity implementation therefore varies at the state level. Some states require comprehensive coverage for mental disabilities, while others limit coverage to certain illnesses -- and certain treatments.

To further complicate the issue, insurance coverage specifically for autism spectrum disorders also varies by state, as some legislatures differ on the categorization of autism as a mental illness -- and therefore its ability to be covered under parity law.

It's this disparity of coverage for certain therapeutic interventions and treatments that can cause high out-of-pocket expenses for certain families with autistic children.

After examining data from the 2005 National Survey of Children with Special Health Care Needs (which included more than 2,000 children with autism across the country), Parish confirmed that "families who live in states that have passed parity legislation spent considerably less for their children with autism than families living in states without such legislation."

For example, 60 percent of families in Massachusetts, Missouri and Utah (states without legislation) had out-of-pocket in excess of $500 annually, whereas only 27 percent of families in Maine (a state with parity law) spent more than $500 each year.

So, as Parish proves, place of residence has an important influence on a family's financial ability to care for a child with autism.

But this research -- and its ultimate conclusion -- still must be situated in the aforementioned broader debate: is mental health deserving of the same attention and treatment as physical health?

Steverman would answer in the affirmative. With her colleagues at Mental Health America, she's been working to promote the view that mental illnesses are chronic diseases, just like any other illness. "It's a social justice issue," she said. There's been unjust discrimination in insurance and in care for people with mental disabilities, and she believes it's time to reverse that. "You just can't separate the brain from the body."

This is where the newly passed Affordable Care Act enters into the discussion.

As noted by Elizabeth Cornachione, Program and Policy Director at the Mental Health Advocacy Coalition, the ACA will extend federal parity to all health care service plans participating in insurance exchanges. Treatment for mental health disorders as well as substance abuse has to be included in any exchange's essential benefits package -- and each insurance provider will have to meet that baseline package.

So, it would therefore seem that the ACA is at least attempting to level the playing field, closing the gap between coverage for mental and physical health concerns. But it gets even further trickier in terms of Medicaid. CMS, Centers for Medicare and Medicaid Services, has decided that each state will determine which mental disorders qualify for coverage, although existing mandates for specific illnesses should be included in whatever exchange package the states design. As Cornachione puts it, "the scope and range of mental health services under Medicaid programs will differ widely among states."

And to add another layer of complication, it's also clear that these exchanges are the source of much contention.

So, despite ACA's efforts, we may ultimately be left to deal with the study's initial concern: when will families with autistic members be able to get the care they need-- and where will they be able to afford it?