Wednesday, January 6, 2010

Autism: Budget Cuts, (Lack of) Insurance Coverage & the Congressman --- in 3D

"Statistics are human beings with the tears wiped off." ~Paul Brodeur, Outrageous Misconduct

For anyone who isn't aware of what autism is, its prevelance, the controversies surrounding it or a person in their lives somehow impacted directly or indirectly by it: Nice to meet you; Welcome to Earth. Now that we have that out of the way, let's jump right into the meat of this post.

Our State is considering various funding cuts in order to trim the budget, and make for a leaner, meaner Vermont. It is true that these are tough econimic times. And admittedly, I'm not one you should consider to suggest where cuts should come from (just ask the folks at my credit union). But I can tell you where those cuts should not come from.

Right now, one of the primary sources under consideration for fat-trimming is our statewide developmental services system. Targeted case management, flexible family funding and developmental service 'waivers' are all trembling under the axe of our Governor James Douglas.

These cut considerations come on the heels of similar recent cost-cutting measures that have already weilded mental health services lay-offs, elimination of whole support departments and 'stacking' of clients with single caregivers. At the same time, hundreds of people poured into the streets and legistative halls to save Amtrak service to our fair state. The choochoo got the green light; the developmental services, not so much.

So, some assistive funds and supports have already been taken away, and there are proposals for more, all forsaking our most vulnerable citizens. All because they are not revenue generators. Yet train service, which is inconsequential when considered as a true 'need', but produces a revenue, is pulled from the chopping block. It doesn't seem logical.

So, while we wait for the State to consider reducing funding and supports that are already just skin-and-bones, those of us who have loved ones living with autism face another dilemma. Vermont is not one of the (few) states that requires insurance companies to cover autism therapies and services. Say what?

That is correct: Vermont currently has no legislation on the books that requires insurance companies to pay for therapies for folks living with autism. As most of the readers here know, 25-40 hours per week of intensive therapies are needed in order for a patient with autism to even have a chance at what we've come to accept as a 'normal' life. Parents and caregivers assist in this equation, providing all the speech, occupational and physical therapies they are able to in their already-hectic lives. But there is no way they could possibly provide all the services even one individual needs.

As you are painfully aware, paying out-of-pocket for just two hours per week of speech therapy could set a family back $600 to $2400 each month. For years.

There is hope, however: A bill (s.262) is circulating the VT Senate that will call for full and unfettered coverage of autism-related services by insurance companies. This bill must pass. And I assure you that I will do all I can to make that happen.

I will also do all I can to assure that the Governor knows that, while it is understood cost-savings must be considered, they should not be made at the expense of many who already are little able to speak or fight for themselves.

As a final note, last month Tammy of Autism Learning Felt began emailing the following letter to Senators from around the country:

"Thank you for taking time to read my email request for information. I am the owner and administrator of AutismLearningFelt, and online publication for parents raising a child with autism. My readers and I would like to know what you are doing to help us.I have a few questions that I would like to ask you and hope you will respond. Your answers will be published on my website within a day or two of your response. Thank you again for your time.

1. When the CDC announced the new autism rates, 1 in 110 children are diagnosed with autism, what were your first thoughts?

2. Services for children with autism are limited and difficult to receive. Most are limited to speech, occupational and speech therapy, yet hardly ever enough of these services to make a big impact for our children. Services like ABA and Floortime therapy are usually not available for our children unless we, the parents, pay for them ourselves. Children that receive at least 20 to 25 hours a week of specialized therapy make more progress than those that do not. What do you intend to do to make government paid specialized therapy services available for our children?

3. Early Intervention is extremely important. Do you have any plans for improving the identification and diagnosis of autism and an earlier age?

4. Autism families need a voice within the government. There are several great organizations that lobby and advocate for us, but we need government officials to take up our cause. Do you have any plans to stand up as a voice for the autism community and bring about more government involvement in addressing the concerns of families raising a child with autism and bringing about practical help for us?

5. Finally, have you considered the time when our children are adults and will require even more help? As parents, we like to think that we will always be here for our children. As our children get older, we realize that soon they will be adults and may become dependent on the government for their care. Do you have any plans to address this issue?"

To put it loosely, I "joined" her in this campaign. However, I have thus far been only able to send one letter: to US Congerssman Peter Welch (D-VT). Thus far Congressman Welch has not replied. Though I am inclined to draw a conclusion as to why we have yet to see his take on the issue, I'll give him the benefit of the doubt for the time being. Suffice it to say however, that we likely may not ever have the pleasure of knowing the Congressman's opinion regarding the questions.

Anyhow, I've gone on long enough. I look forward to your thoughtful comments.



Anonymous said...

..,I think the government should put much attention with this issue.. kids like that should be given enough consideration especially in insurance terms...

Jen said...

Cutting funding is so short sighted, saving a penny now could cost a lot more later on. I agree with the 25-40 hours intensive therapy. In Ireland our Govt covers 10 hours of ABA at 2.5 years of age, and 20 hours at 3 years of age. More would be nice but I am grateful it was not cut in our last budget, though some of our supports were. My child was diagnosed at 23 months and we are entitled to nothing until he is 2.5 years old. I don't mean to detract from your topic, its just that this short sightedness is a problem all over the world and maybe we need to look at doing something together on a bigger scale, we are all parents wanting to help our children that is enough to unite us. I hope your campaign is successful:) Jen

Deanna Schrayer said...

You're coming through loud and clear Jon, and I'm with you. I'm ashamed to say I don't know where our state, VA, currently stands in regards to where funds will be cut, (and they're surely being cut all over the country), but I'm happy to say that we have always been able to receive the help we need from the Dept. Of Education. Any time we've asked for help we've gotten it. Of course that doesn't mean it will always be there, and it's important we keep on top of it, (thus I'm ashamed I haven't).
I wish you the best of luck in your quest for answers, and I hope you get the ones you really want, and Need.

Jon G said...

Thanks for your comments. Picking and chosing who should be covered is a travesty!

Jon G said...

These people don't look at the long-term; they are a "here-and-now" sort of ilk. Their philosophy is, "when they get older, and are a bigger 'burden' [please forgive my word choice], it will no longer be my problem." That's the kind of thought process we're working with. I'd love to talk to a government official with a child living with autism? Are you out there?

Jon G said...

You're fortunate to be getting the services you need through through your school system. Nolan does receive these services as well. But as I'm sure you know, that's not always enough. I hope we can draw mountains of attention to this issue! WE NEED YOUR HELP!

Corrie Howe said...

I guess from reading another blog, that Virginia is looking to make severe cuts in mental health spending too. She translated what that means to her personally.

Jon G said...

Corrie - thanks for the link! Apparently, this is quite widespread:

Deanna said...

Hi Jon,
I'm not sure it you noticed, (as busy as you are right now), but I was off line completely for a whole week, beginning last Tuesday, due to one of those "life emergencies" that stopped the earth from turning, and flipped me upside-down. Needless to say, it had to do with Jimmy, but not the autism; instead, it was his clinical depression. I'm not comfortable talking about it publicly, but we were very fortunate to get the help we needed, from Jimmy's doctors, teachers, and the county's educational consultant immediately. The ironic part was that, while we were going through this challenge, we received email after email from the school board supervisor talking about the budget cuts, and throwing around ideas of how we, (as a community), will try to work around it so we don't lose the staff desparately needed for special ed. But we'll most certainly lose some teachers next year, and that will obviously put a strain on those left with ten more children in their classrooms, special ed or not. I just pray, for all of us, that things start looking up before our kids reach graduation.
Because of all this stress I've not been able to blog, or even write, much at all. I just got back on my blogs a couple of days ago, and I'm way behind on reading, (obviously).
I appreciate your prayer and positive energy, and I'll be doing the same for those of you need it in Vermont.