I am not a political person. In fact, I pretty much despise politics. But being a parent often means doing something on behalf of your child that you might not do otherwise. Along these lines, today we visited the capitol: me, hubby, B and one of our therapists (along with at least 100 more concerned parents, therapy providers and kids). This is the 3rd time I've been there since we became part of this Autism club. This isn't a club we ever wanted to join. In it, we are tasked as parents to "advocate" for our children, their services and the already limited funding that is available. I am a parent of 2 and I can not deny that parenting any child is hard. But parenting a child with autism is in a whole other league. Our worries are substantial as it is and our time and resources are limited. We shouldn't have to worry about how to pay for the treatment that has been prescribed, tested and proven to work for so many children. Yet, this is what we face.
Despite the fact that we pay beaucoup premiums for insurance, NONE of B's therapy is covered. We are "fortunate" that the state of Minnesota does currently provide coverage for his ABA therapy but it comes at a cost. We pay a steep monthly parental fee... roughly the equivalent of private school tuition. In addition, together with our provider, we submit laborious paperwork every 6 months so that it can be reviewed and determined whether or not we still are worthy of these services. There is never a guarantee. Right now, we are covered through the end of June but there is strong cause for concern. Blue Cross Blue Shield used to be the one insurance company that covered this therapy but they have pulled out. It begs the question of how much longer the state will continue to provide funding when private insurers don't have to. The costs of this therapy are astronomical. If we were to pay out of pocket, it'd be roughly $12K per MONTH and B is targeted to spend 4-5 years in this therapy. I don't know many people who have an extra $700,000 lying around, do you?
To me it seems like a no brainer. Yes, this treatment is expensive. However, it is evidence-based, medically necessary treatment. And we can't deny that there is a huge population of kiddos who need it. One in 70 boys are being diagnosed - nearly 1% of the population and more than AIDS, diabetes and cancer combined. And kids are recovering. With early intervention behavioral therapy, nearly 50% of kids are gaining typical function... as in losing their autism diagnosis all together. And the vast majority of other kids are making substantial gains and significantly improving their quality of life and ability to contribute to society. We can already see a huge difference in B and this treatment is the only thing that gives us hope for his future. So why are all of these beautiful children being discriminated against?
B needs this therapy and our family needs this therapy. But this is a bigger issue that effects our entire society. At a minimum, we need to ensure that our state funding (MA/TEFRA) does not make cuts so that we can continue what we have today. But what we really need is for private insurance to step up and pay for treatment. There is a bill under review (THE AUTISM HEALTHCARE PROTECTION ACT: House file 1071/Senate file 1020) to require private insurance to provide coverage for care of autism. It would save the state of MN $1.6 MILLION per year. Not to mention the costs that would be saved by treating these kids for a few years vs. an entire lifetime of dependency on special services. I can't even begin to do the math on those savings. See? No brainer.
In a 5 minute meeting, we attempted to convey this to our senator. I'm so glad B was there. I think the sight of our sweet little B playing trains and singing to himself on the floor was far more compelling than anything that could have come out of our admittedly nervous mouths. I'm glad we made time for it and I'm glad we dragged our little trooper all over the capitol all morning to make it happen. Something tells me we'll be doing a lot more of this. It's not something I want to be doing and not something I enjoy. But as we try to get our arms around exactly what it means to be advocates for our child, it's something that we will not be able to do alone and I may be asking for a lot of help.
No comments:
Post a Comment