The rate of autism is on the rise. Current estimates about the prevalence of the condition are that it affects one out of every 88 children. Among boys the rate is even higher at one out of every 54. It’s so bad that the advocacy group Autism Speaks has called it an epidemic.
For parents of autistic children the most effective option for treatment has long been Applied Behavioral Analysis (ABA). Numerous studies have shown the effectiveness of ABA both in the long and short term. The therapy helps children learn the essential life skills that help them succeed well into adulthood.
However many families face the issue of how to afford such treatment. Daily sessions can cost anywhere from $20,000 to $100,000 each year, and the therapy is not always covered by insurance.
Autism insurance mandates
Some states have enacted autism insurance mandates to address this problem. Meaning that insurance companies selling policies in the state have to offer coverage for autism and ABA in particular. The first state to do this was Indiana. In fact before 2007, it was the only state to have such a mandate. Since then the total number of states mandating autism insurance has grown to 32.
Despite those encouraging numbers, families without health insurance or in states without autism insurance mandates are faced with how to pay for coverage. It’s often a Catch 22 of straining their finances to pay out of pocket for ABA or forego the treatment altogether.
For those families faced with that hard financial decision, the Obama administration’s Affordable Care Act, sometimes referred to as Obamacare, initially offered hope. For a time it seemed like mandatory ABA coverage would soon be the norm nationwide and be more affordable to boot.
Things seemed promising at first. After being signed into law in March 2010, it immediately did away with pre-existing conditions for children under the age of 19. This was good news for parents in states already mandating autism coverage. Now their children could not be denied health insurance because they had been diagnosed with autism.
But they still held out hope for nationwide autism coverage. The hope was based on the law’s 10 “essential benefits” categories. These are categories of medical services that every plan sold at the state health insurance marketplace under the Affordable Care Act must cover. The federal government would also be subsidizing the cost of these benefits for the states.
The administration even went so far as to spell out specifically in the 10 essential benefits categories that habilitative treatment should be included, which ABA falls under.
However autism advocates received a shock in early 2012 when new rules about essential benefits were issued by Katherine Sebelius, the head of the Health and Human Services department.
These rules allowed each state to choose which medical services would be offered locally in the essential benefits categories. The rules also made autism insurance an optional benefit. As a further injury, states would be financially responsible for autism insurance if they chose to include it in the essential benefits.
This hard shift away from a national standard of essential benefits and an explicitly spelled out guarantee in the legislation of autism insurance drew plenty of ire. Especially from advocacy groups, who had worked tirelessly during the past decade to get states to pass autism insurance mandates.
The essential benefits will work like this. Last year states submitted to the government so-called “benchmark plans,” which are based off of existing insurance plans in the state. The benefits included in these plans will become the standard for all health insurance plans sold at the local state insurance marketplaces next year. Only 24 states will be offering autism coverage next year as an essential benefit, according to a study of states’ benchmark plans by the Heritage Foundation.
The administration’s reasoning behind the move to exclude autism coverage and allow states to choose which benefits are covered is that it would allow for as little market interruption as possible in implementing the Affordable Care Act.
Now, though, the reality is that next year there will be huge disparities between states when it comes to essential benefits offered. For example some states will cover things like infertility treatments and chiropractic care, but no autism insurance.
What does this mean for the future?
No question that even under the best of circumstances the Affordable Care Act is a work in progress, but when it comes to nationwide autism insurance, the legislation falls short. Families in those states choosing to include autism insurance as an essential benefit will be helped by the law, especially with it’s tax credits for purchasing health insurance at the state marketplaces.
However other families in the majority of states will be left out in the cold. They’ll need to depend on employer sponsored health plans or make the difficult decision to pay out of pocket for their child’s therapy. It’s always possible that the federal government will change its mind on these rules with the state marketplaces opening in October, though that seems very unlikely.
Michael Cahill is Editor of the Vista Health Solutions blog. He has a degree in Journalism from SUNY New Paltz and previously worked as a reporter for the Poughkeepsie Journal and an editor for the Rockland County Times. Follow him on Twitter at @VistaHealth and @ElectronicMike