When Constance was diagnosed with autism spectrum disorder, the primary treatment for that grouping of disorders was applied behavioral analysis therapy for autism (ABA). Since the 70s, ABA has been proven to be an effective way of teaching children on the autism spectrum to do things like have verbal expressive language by helping them build the necessary neurological pathways. For ABA to be effective for severe challenges caused by autism, it must be full-time.
Many healthcare and educational team providers were anxious about recommending ABA to parents for two reasons. This was a specific kind of ABA that required a specialized master’s degree and years of supervised worked experience. As a result, there was a national shortage of providers. Luckily, there were graduate school programs for this in Chicago so there were therapists around.
The other reason is that it was extremely expensive. At the time, it was about $150/hour for 40 hours a week or $312,000/year in the Midwest. According to the census, at that time, the average household income for a family in the United States was $50,054. Not having rich parents should never be a reason for children to not get needed medical intervention. Only the wealthy who were also living in areas with an accessible therapist were able to treat severe challenges caused by autism with the recommended therapy.
It was years before the Affordable Care Act (“Obama Care”) was proposed or passed into law. At that moment in history, the only health insurance policies that covered ABA were ones mandated to do so by their state laws. In Illinois, the ABA law passed in 2008 required at least $36,000 per year of ABA coverage for children with autism. This increased annually with the cost of living. As a result, when we needed it, the state mandated our insurance pay $38,527.
When I asked our insurance company to pay for ABA for Constance, they declined. They said it wasn’t part of the insurance policy we’d purchased. In my memory, the insurance employee had a cartoon evil villain voice. I reread the law and thought they were wrong.
It just so happened that I knew the person who wrote the law. Chicago is a small big city. Everyone knows everyone. In an extreme act of privilege, I called him. I asked who was correctly interpreting its mandate. Happily, he assured me that I was correct. He sent a quick email offering to help explain the mandate to the insurance company if they didn’t understand it. I forwarded that along to the insurance company and, magically, we had the state-mandated coverage. We now had 12.35% of the cost covered.
With a large gap to fill, I then went to my employer, the American Foundation for Suicide Prevention (AFSP). I needed to buy their insurance coverage as well. They are based in New York. At that time, the law in NY required that all insurance companies include at least one plan that covered ABA. That plan had to cover $45,000/year. Like most nonprofits, AFSP’s primary objective in making purchases is to save as much money as possible to keep overhead low enough that people will donate to the cause. This means that the policies on offer did not cover ABA. In fact, it didn’t cover much in terms of mental health despite the fact that AFSP had organized volunteers to lobby on that exact issue.
Using my gentlest, most reasonable voice, I asked the CFO, Daniel, if he might get AFSP an insurance policy that provided a more robust mental health plan including ABA. Daniel was a parent of a not typically developing child as well. Daniel’s wife had to leave her career to provide their child with care because they couldn’t find a program available to them where they lived that was appropriate. Their grown son was now excelling at an ivy league university. I don’t think my plea could have found a more sympathetic ear. Daniel found better, reasonably priced health options and presented them to the CEO who approved them immediately. I cried with gratitude at their humanity.
When Daniel presented the new health insurance plans to all of the AFSP staff across the country, there were grumblings. It was a few months into the year and so people had already been making payments toward annual deductibles that won’t be rolling over to the new plans. Daniel tried to quiet the hoard by saying that this policy allows for superior mental health coverage, a rare thing for insurance policies at that time. He knew that everyone in that room cared greatly about that issue and thought that would resolve it. But money is money and they wanted to know why this change needed to happen now instead of at the end of the year. Daniel explained that a member of the staff had a child with autism who needed this policy for therapy. It was clear to everyone that he meant me. I was at the meeting and very uncomfortable. However, it silenced the complaints. We now had $81,000 or 26% of the ABA therapy covered.