little victories

The Ohio House of Representatives has voted that insurance companies cannot decline to cover expenses related to autism and diabetes. The bill now heads to the Ohio State Senate. This is great news. If the bill passes, my insurance company and many others will begin to share the burden that the rest of us have already been shouldering, either as parents who pay out-of-pocket for therapies or as state taxpayers who provide funds for the public schools to pick up where the insurance companies have failed to provide. A big thanks to every House member who voted for this bill.

I can tell you the kind of difference this sort of coverage can make for a family. When Martin was first diagnosed, his doctor recommended two speech therapy appointments a week. We took Martin for an initial assessment and a followup appointment. I then called my HR rep at my job to make sure I understood how much of the therapy we would pay for. From reading my benefits booklet, it looked like we would pay a $500 deductible and then another $1000 in coinsurance. At that point, the insurance would kick in to cover 100% of the cost.

I explained my understanding of the policy to the HR rep, who kindly listened to me. But then she interrupted and said, "You're right about the policy for speech therapy in general. But our policy excludes autism. Your claims will be denied." Completely shocked, I asked how this could be. How could speech therapy for a stroke be covered, but not for autism? "It's considered an educational disorder, not a medical or mental disorder." And that was it. Despite paying my hefty monthly premium to cover my family, I was suddenly uncovered.

And speech therapy is really expensive. About $150 an hour. At eight sessions a month, that adds up to more than my mortgage. Some parents in this position do get second mortgages on their homes. For my husband and me, this felt like a ridiculously perilous financial decision, so we looked for other options. We tried the speech clinic operated by the college where I work. Martin was evaluated and put on a waiting list. (The clinic called back last Thursday - more than 2 years after the initial evaluation - to say that Martin was finally at the top of the list.) We then opted for a public school program that provided one speech session a week, along with a special-needs classroom experience. It was OK. It was all we had. We found out about the voucher program about 9 months later and applied right away. It was the only way to get the one-on-one therapy Martin needed without going into staggering debt.

I think about all the families like ours, but those who are even in worse shape. Maybe they've never heard of the voucher program. Maybe they don't know how to get what they need through the public system. Or maybe they're affected by the other half of the bill's content: diabetes. Maybe they can't afford insulin or decent food. Maybe they don't have supportive relationships to help them stay well. In my mind, these are all injustices that we shouldn't live with in a wealthy country. So if you live in Ohio, call your state senator. Or if you know a family with an autistic kid or a diabetic living among them, ask them if they need an advocate. Unless they live in the small number of states who have ensured their coverage, I bet they could use your voice.