Abby Tappert has autism. The four year old from Boulder, Colorado has had developmental difficulties since birth, and didn’t take her first step until age two. But with Applied Behavioral Analysis (ABA) therapy, she has improved dramatically, and can now talk and interact with her family – something they didn’t know if she would ever do. Abby’s therapy has cost her family $110,000 so far, and last month a judge ordered the family’s health insurance company, Anthem Blue Cross Blue Shield, to cover those costs. Anthem has not decided whether to appeal the ruling, but they contend that behavioral therapy for autism is experimental and unproven, which is why they do not pay for it routinely. And they are not alone – virtually no Colorado health insurance carrier will pay for extensive autism therapy. Anthem, with coverage similar to most other insurance carriers in Colorado, will cover up to 20 hours each of occupational therapy, speech therapy, and physical therapy – in a lifetime. But that amount of therapy could be used up in a matter of weeks with an autistic child.
In 1960, autism was estimated to affect 1 in 10,000 children. Now the nationwide estimate is 1 in 150. Here in Colorado, it’s 1 in 169. To put this number into perspective, cancer strikes 1 in 330 children. Across the country, parents are struggling with the devastating diagnosis of autism, followed closely by the devastating financial drain that therapy can bring. There is no organized national program for funding autism therapy. Funds and grants are available in some states, but there are often waiting lists and hours of paperwork to complete in order to enroll a child. Therapy can easily cost $4000/month – a stretch for all but the wealthiest families. In Colorado this year, the legislature approved funding for a program within the Medicaid system to provide up to $25,000 worth of therapy for 75 autistic children under age 5. This is a step in the right direction, but we still need to have more of a safety net in place for families that find themselves in the position of having to devote their lives to healing their children (often having to give up a job in order to provide full time care for the autistic child) and at the same time having to deal with mounting therapy bills.
Autism has become an epidemic. The numbers keep increasing, and science has not yet figured out why. Nor have we figured out a sure-fire treatment plan – what works for one child might have no effect on another. A Google search of ‘autism treatment’ yields 439,000 results – and a parent with a newly diagnosed child is likely to spend a lot of sleepless nights combing those search results in hopes of finding an answer. And then lots more sleepless nights trying to figure out how to pay for the treatments they find.
One way or another, health insurance companies need to start recognizing that autism must be treated early and aggressively in order to get the best results, and that the costs of these treatments are not something that a family can be expected to bear alone. When we get health insurance for ourselves and our families, we expect a measure of security. Obviously, health insurance isn’t going to pay for breast enhancements or tummy tucks. But an autistic child is a sick child. And when children are seriously sick – with therapy reaching into the hundreds of thousands of dollars – parents need to feel assured that at least the financial aspect will be taken care of by their health insurance company. That’s why we have health insurance in the first place. Not so that we can take our children to the doctor every time they sneeze. But so that if they are diagnosed with an illness that requires thousands of dollars in treatment, we can focus on helping our child get better and not worry about how to pay for it.
