I recently had a conversation with someone outside of the Down syndrome community about health insurance and the lack of therapy benefits for children and adults with Down syndrome. In general, I appreciate an outside perspective. Most instances, after hearing a different point of view, I can examine the situation with a wider scope of thought. This conversation was no different.
The conversation boiled down to costs and benefits. I know every single one of us wants to give our kids the best opportunities we possibly can. For kids with Down syndrome this can mean private therapy for OT, PT and speech therapy. In my family’s case, it’s speech therapy. Our almost four-year-old son, Owen, is all-out completely nonverbal. He has been through Early On speech therapy, private speech therapy (paid out of pocket) at an area college, and currently he receives speech therapy as part of his special education preschool program. While we see him progressing, it seems to be at a snail’s pace. We decided that to really help him to continue to learn how to speak, we would enroll him in private speech therapy through a center near our home that accepts our insurance. Here is where cost and benefits come into play.
When I called to confirm speech benefits for Owen, I heard news I didn’t expect. I had gone through the right channels and had our primary care physician write a prescription for speech under the codes that I had researched and confirmed were accepted. What the insurance company told me is that Owen could not be “rehabilitated,” and that my insurance company would only cover 60 consecutive days of therapy a year. This applied to OT, PT and speech therapy. When I questioned what they meant as far as Owen not being rehabilitated, they told me that unlike autism, which is covered and – in the insurance companies opinion – can be rehabilitated, Down syndrome cannot. After some choice words, I was instructed how to file an appeal and that was that.
I don’t think many of us, as parents, looked at our kiddos when they were born and imagined we would have to fight for them in so many ways. That an insurance company would weigh the cost and benefits of our kids. That they would look at our kids as not being able to be “rehabilitated.” That it wasn’t worth their money to try to help our kids progress and function and excel in society so that they can live healthy and fruitful lives. That we would shock an insurance company as we tried to explain that we don’t want to rehabilitate our kids – we would not trade their Down syndrome. We only want the best possible opportunities for them. The brain is an organ. If a person is born with a heart that doesn’t function at a certain level, insurance companies cover the cost of treatment for the heart as recommended by physicians. This should be the same for physician-prescribed therapy to improve the cognitive function of the brain!
Our kids and adults in our community who have Down syndrome are priceless. What they each contribute to the communities around them cannot be measured on a cost and benefit scale. Each and every one of them deserves and has a right to therapies that will help them excel throughout their lives. The possibilities are endless. But beyond the moral arguments there is this:
Cognitive health is an important piece of overall health.
That insurance companies are required by Michigan law to cover cognitive therapies for people with Autism shows that our legislators share this belief, so it should be true for all cognitive impairments.
We are still fighting for speech therapy for Owen. We are also looking further into anything we can do as far as legislation goes, to change the laws that mandate what services are required to be covered. In an ideal world, the insurance companies would see the amazing potential that each person with Down syndrome has. Until that day, we will march on and make sure that Owen receives all the services he needs to excel, even if that means asking our elected representatives to protect his right to heath care.
Amy is a wife and mother of three beautiful kiddos. Paige is almost 9, Blake is 7 and Owen is almost 4 and blessed to have Down syndrome. Follow Amy’s journey on her blog They Rose Up.