Hard to believe, but insurance coverage for autism is at the top of Wisconsin's 2009 legislative agenda!
Note: I've updated on this issue as of February 7.
When Joy was diagnosed with autism in December of 2006, we began to learn some unfortunate facts about developmental disability. One particularly disturbing issue we began to hear about was how health insurance often treats autism. As in... it generally doesn't, if the companies can at all help it.
One historic artifact is that health insurance has covered mental health issues only reluctantly, and to lesser degrees than physical health (as if they weren't related.) Since autism is technically a mental-health diagnosis, that puts it on the shaky side of insurance.
I should note here that our particular insurance policy has generally done very well for us. We have not been denied any physical care for Joy on account of her autism. We even got them to cover some speech and occupational therapy during the one summer when Joy was too old for the county's Birth-to-Three services, but the school district wouldn't pick her up because it wasn't September yet. They also covered follow-up visits to the developmentalist/autism-specialist who made the initial diagnosis. That was it for services directly aimed at the autism, however. We haven't even really tried to get anything else covered. And the horror stories are out there. I also hate to think of what would happen if we ever had to switch insurances...
Fortunately, we discovered, there's been a movement afoot nationwide among the states, to highlight autism as a condition that MUST be covered. There's a neat little map mash-up at Autism Bulletin that showed the situation in 2007; more states have signed autism-insurance mandates since then, including South Carolina whose legislature over-rode the governor's veto to make it so!
In Wisconsin, the governor and the state Senate were supportive. The motivator behind the proposed autism insurance legislation in Wisconsin was the state's intensive autism services, which Joy is receiving now. (I've got a whole list of posts on that to come; stay tuned!) Wisconsin has a lovely program via a Medicaid waiver that offers up to three years of intensive therapy for kids on the autism spectrum who are sufficiently disabled to qualify. The budget dictates how many children get into the program each year, alas, and the waiting list is out of control. Joy began receiving services a year and a half after her diagnosis, and you can believe we were not dragging our feet in trying to set it up! -- and the list has only grown since then. The budget strategy went, if only insurance would pick up at least part of that expense, we could stretch the state dollars further, serve more children, whittle down that waiting list. In the process, they could also help adults with autism who get slammed by insurance exclusions.
So we started advocating. We got friends and family to write letters, I attended a rally at the state Capitol and talked to staff in various legislators' offices, I even testified at a state Senate committee hearing on the measure, and got quoted by a couple of news organizations! Joy was so cute at the hearing. I started my testimony with her on my lap, but she started telling the legislators "bye-bye" before I got 30 seconds into my spiel!
Well, the measure dragged and dragged. First they tried to put it into the budget, a long contentious process and we set the record for late state budgets that session. Then it was introduced in the Senate, then the committee hearing, then the Assembly got a chance to drag its feet. Rumor was that there were enough votes in the Assembly to pass it (it passed the Senate with ease), but the Assembly leadership was dead-set against bringing it to the floor. Eventually they brought a substitute amendment that looked like it was going to throw state dollars at the waiting list, but that they knew wouldn't pass. And the issue was officially dead for the session. For timeline context, my testimony was in May 2007; the Assembly 11th-hour shenanigans that killed the bill for the session were in March 2008.
Since then, there's been an election, and it has changed the playing field considerably. Wisconsin now has the same party (Democrats) in the governorship and in the state Assembly and state Senate -- in other words, the Assembly majority changed hands.
The autism insurance bill was introduced in the state Senate this past week. It's Senate Bill 3, right at the top of the legislative agenda.
I do wonder whether the bill will make it through in its current form. It's pretty broad right now -- it speaks to autism, Aspergers, and PDD-NOS, and defines the therapies to be covered this way:
if the treatment is provided by a psychiatrist, a psychologist, a social worker who is certified or licensed to practice psychotherapy, a paraprofessional working under the supervision of any of those three types of providers, or a professional working under the supervision of an outpatient mental health clinic.
Definitely aimed at the ABA/DIR/etc. kinds of services that the Medicaid waiver covers. The bill also does not have a dollar-cap written in, as far as I can tell, the way some do (some states make insurance plans provide up to $X of ABA in a year, for example).
I think the loophole for our particular insurance and Joy's intensive services is going to be that the services Joy is receiving are not "in-network." I'm sure there will be plenty of other ways for insurance companies to limit their obligations. The real details and limitations of whatever passes will have to be hammered out in a rule-making process led by the state's insurance commissioner, which could take up to a year in itself. Meanwhile, who knows what will happen with the Obama administration's health-care initiatives! The system could look very different in a couple of years.
Still. This insurance-coverage approach is one that we support, and it's exciting to see it moving forward. After all, that's Wisconsin's motto: "Forward."