I attended the 7th Annual Autism Legislative Summit in Washington, D.C. earlier this month and while the conference was very well-done, the setting lovely, and the attendees incredible advocates, I found myself angry at the inequity with which autism is treated by the medical system and in particular, the insurance industry.
Anyone with an autistic child has at some point been denied coverage for their child’s very real medical condition, simply because they have autism. These families have done the right thing and paid for health insurance, only to find there is an exception for their child’s debilitating condition. Fortunately, 32 states have now passed autism health insurance reform. Sadly, Hawaii is still not one of them.
There’s a lot to health insurance. I pay my premiums; I have the plastic card and until a few years ago, never gave a second thought to it. You show the card when you go to the doctor and make your co-pay. I really thought that was all there was to it. For example, I didn’t know insurance policies are regulated differently and this difference affects who is covered by state-passed insurance reform legislation.
I didn’t realize federal employees would not be covered by passing state-level autism health insurance reform because their policies are federally, not state, regulated. I also didn’t know there were large companies that self-fund their health benefits, and this is not actually technically insurance (even though they have an “insurance card”), but is regulated by something called the Employee Retirement Income Security Act (ERISA). ERISA benefits are also not state-regulated, but are regulated at the federal level.
So why am I boring you writing about health insurance regulation? I just want you to understand that even with state-level insurance reform, only about 30% of any given state’s insured will be affected by autism insurance reform. Does this mean we shouldn’t bother? No, NO and Hell NO!! Of course we need to help any family dealing with autism that we can. But realize there will still be a lot of families left with astronomical bills for therapy that will not be paid by their insurance companies, despite regularly paying their ever-increasing premiums.
So what about federal requirements for autism insurance coverage? Isn’t the Affordable Care Act (ACA, aka, “Obamacare”) the solution?
Well, it would be EXCEPT…autism is not specifically identified as being one of the Essential Health Benefits all state exchanges must offer. Essential Health Benefits must include items and services with at least 10 Categories; number 5 is for “Mental health and substance use disorder services, including behavioral health treatment”.
“Aha!” you say. “Behavioral health treatment would include Applied Behavior Analysis (ABA) for autism. We’re golden! I heard Senator Menendez specifically say autism is why he added “behavioral health treatment” to one of the Essential Health Benefits.”
Well, not so fast. The Department of Health and Human Services (HHS) has still not ruled on whether or not autism is included under Essential Health Benefit #5. If not, state-level legislation for health insurance reform is still important—especially for the 30% it will provide coverage for.
It’s not all doom-and-gloom, though. The Human Resources Department for the Federal Government, the Office of Personnel Management (OPM) recently issued new guidance allowing federal health insurers to propose plans that include ABA. OPM manages benefits for the nation’s largest employer—Uncle Sam. The Federal Employees Health Benefit program is often referred to as the “gold standard” of health insurance coverage, yet to date ABA—a proven, successful treatment could not be included. It now appears possible that beginning in 2013 federal employees will have access to insurance that covers ABA services for autism.
And more and more large companies are offering the benefit on their own. For example, Capital One decided to offer the benefit in 2010 because they want to be an employer of choice to be able to attract and retain the best talent. In addition, here’s a list (I’m sure not all-inclusive) of companies that “get it”:
- Adobe Systems Inc.
- Arnold & Porter Law Firm
- Aspect Software
- Capital One
- Children's Mercy
- City of Atlanta
- DTE Energy
- Eli Lilly
- Greenville Hospital System (S.C.)
- Home Depot
- IBM (Limited ABA services)
- Lexington Medical Center
- Maxim Integrated Products
- Mayo Clinic
- Morrison Foester Law Firm
- Network Appliance Inc.
- Ohio State University
- Partners Healthcare
- Princeton University
- Progressive Group
- State Farm
- The Ohio State University
- Time Warner
- TriQuint Semiconductor
- University of Minnesota
- Wells Fargo
- White Castle
- Yahoo Inc.
The dominoes are beginning to fall, but we have to remain diligent. Arizona governor, Jan Brewer, tried to repeal her state’s autism health insurance reform law, and others will try to reign in the benefits. This is a short-sighted approach for a benefit that costs an average of 31 cents per month per insured and yields a high success rate.
Children who receive intensive ABA have gone on to lose their autism diagnosis, or at least improve to such a degree that they can one day go on to lead independent, productive lives. Without intervention, the societal costs for each individual with an Autism Spectrum Disorder across the lifespan is estimated at $3.2 million by a Harvard researcher.
Wouldn’t you rather spend that 31 cents a month now?