This post is by John Elder Robison in My Life With Asperger's. John Elder Robison is a member of the IACC and serves on the science board of Autism Speaks but the opinions expressed here are strictly his own.
One of the most shocking (to me, at least) presentations at yesterday’s Interagency Autism Coordinating Council (IACC) autism meeting detailed the status of insurance coverage for autism behavioral therapies around the country. Peter Bell of Autism Speaks presented a number of charts that showed a mix of hopeful and disturbing news.
On the hopeful front, he showed a chart of states that have passed legislation making autism therapy a medical treatment, as opposed to mental health counseling, which gives better coverage through private insurance plans.
Yet at the same time he highlighted the extreme differences between individual insurers within some states. Even now, one family on a street can have a kid receiving 40 hours a week of therapy where a family two doors down has a kid who gets next to nothing, due to different employer insurance policies.
That is a disparity we should continue working to eliminate. As he said, we’ve come a long way. Five years ago, almost everyone was in the same boat, with no coverage. Now quite a few people have some coverage, but “quite a few” and “some” are not words a progressive society should be using when it comes to autism interventions that can be life changing.
Unfortunately, there was more. Peter went on to cite a few states whose programs have denied behavioral therapies on the grounds that they are “experimental” or “not proven to work.” I thought we were past that kind of shabby behavior. I guess not. I immediately opened a dialogue to discuss how that could happen.
When a new drug is developed, the Federal government (via the Federal Drug Administration) reviews test results and approves it to treat certain conditions. We’ve all heard how vital FDA approval is to the success of drugs. That’s because the FDA stamp of approval means the drug will be accepted as a legitimate treatment for the conditions it’s approved for anywhere in the US. An insurer cannot decline it arbitrarily, as they do now for many autism therapies.
I was shocked to hear that there is no analogous mechanism for approving behavioral therapy in this country. As National Institute of Mental Health Director and IACC chair Tom Insel explained, in the absence of a government approval system insurers look to the professional organizations themselves. What do they find? There is a good national program (BCBA certification) to train and certify ABA practitioners. The result – ABA is the most (indeed, the only) broadly approved behavioral intervention for autism.
Why? Because it’s the only one with uniform certification standards nationwide. I know – many of you will tell me the quality of ABA varies widely and I agree – but the BCBA training standard is indeed uniform and it’s all we have.
Yet ABA is only one therapy, and it’s only useful to some of our autistic population. What about all the social skills therapies we’ve developed in recent years, things like PEERS or Unstuck, or RDI? What about social skills training or job coaching for adults? The idea that ABA would be approved but the latest cutting edge technology we develop is not . . . that is akin to saying none of the newest drugs will be offered unless people are willing to pay for them personally. What is the point of pushing for new treatments in medicine if our archaic insurance rules keep them out of reach for most people??
The sorry truth: Very few of the many autism therapies developed in the past decade are covered by health insurance in the US. That means families must struggle to pay on their own, take what they can get (even if it’s ineffective) or get into research studies that provide experimental therapy.
As someone who is working to get new therapies developed and deployed, that state of affairs is totally unacceptable.
I’ve written about new therapies on this blog, and indeed many show great promise. Their effectiveness has been shown in many studies, yet they are not widely available, and rarely covered by insurance. Why? Because there is no way for an insurer to know that the intervention being delivered in North Dakota is the one designed and vetted at UCLA (for example).
University research centers develop these therapies and even do training to propagate them in the field. Important as those efforts are, they cannot roll out a new intervention on a national scale to augment ABA. It’s just not realistic for any single group to undertake that except over a period of decades, which we do not have.
So what do we do about this?
Peter Bell and others have worked to get autism therapy classified as a medical treatment as opposed to mental health counseling. That means it’s got to be covered by insurers and it’s not subject to the “six visits a year” sort of limit that renders mental health coverage almost worthless under most US insurance plans.
Some in the autism community don’t like the stigma of “medical treatment” as applied to something like social skills therapy but at this moment it’s the only path we have to coverage, paltry as it is.
I think we need Federal action that mandates insurance coverage for a much wider array of behavioral intervention. Valuable as ABA is, is it not a path that works for every kid, and frankly, it is “old news.” We need to get our insurers covering the deployment of new therapies that will help a broader range of kids.
Dr. Insel and I talked about that after the meeting. He shared my concerns, and said this is a problem we could address fairly easily but it would require legislation that would be resisted vigorously by the insurance industry. He told me there are groups working on this very question in other fields, like depression. His comment made me wonder if we need to band together to solve this as one lobbying group.
The fact is, many behavioral interventions have been developed and proven to work for depression, autism, and other conditions, but they are seldom covered by insurance because they are not classified as medical treatments and they lack any equivalent of FDA approval.
I want to thank Peter Bell, his group, and everyone else who has worked so hard to get the insurance coverage we have today. And I want to thank him for opening our eyes to the true nature of the next obstacle we must surmount – the development of a mechanism by which new autism therapies can be delivered and covered by insurance. Without that, all the intervention in the world will be worthless to most people, because they will have no way to pay for it.
And that is wrong.