Taking the Scenic Route

If you have a child with autism, don’t move to Kansas.  Oy.  I went to the update on the Governor’s commission for an autism waiver tonight.  They are trying to start up a waiver that covers services for autism here like they have in a lot of other states already.  We are on the waiting list (a 3-5 year wait most likely) to get the Developmental Disability/MR waiver that he became eligible for when he turned 5, but it doesn’t cover much, so I was really hoping this autism waiver would be passed. 

Assuming the federal funding does come through, they are going to start accepting applications for the autism waiver starting January 1st for people five years old and younger.  Zane turns 6 a few days before this, so he won’t be eligible to even apply.  But, it sounds like it isn’t a huge loss because of all the kids that do qualify in the entire state, only 25 will be chosen, by either “first come, first serve”  (which translates to the top 25 envelopes of the boxes of applications) or a lottery (after a roomful of ticked off parents made it clear that ‘first come, first serve’ would mean that the only way you would have a shot was to go to Topeka and sit in front of the offices to make sure your mail got there upon opening).  And, if by some miracle you happen to get picked as one of the golden 25, the only places you can get services are places that accept Medicaid.  There was actual laughter when the politician chosen to present this to the parents said this.  There are almost no providers in the first place, and those that do exist have long, long wait lists.  It is just ludicrous.  I am pretty sure both of the places that Zane gets therapy aren’t covered by Medicaid.  (at least they weren’t covered by Healthwave, the state funded low income insurance we used to have on the kids). 

It is such a joke.  There were two parents there that said this cemented their families decisions to move to another state (one was Florida) and another mom said that she was just kicking herself because she left Washington State to move to the midwest when she was pregnant with her son, who has since been diagnosed with autism. 

I can not tell you how lucky I feel to have the providers we do have.  I have heard horror story after horror story about some of the EI providers around here (and a few good ones, of course, but they are few and far between from everything I have heard) and even more about the school systems.  One parent, in her comments, asked about what she was supposed to do when the school system was not providing the services they were supposed to and there was nothing else available to her because of the DD waiver waitlist, and now her child is too old for the possibility of the autism waiver.  When the guy responded “you should talk to your school board”, you could hear the guffaws and murmurs all across the room of parents who have BTDT and have gotten nowhere. 

Oh, and another thing…in his comments he said that the people who would be doing the evaluations would only have a bachelor-level education in social work or something about human services.  It is a joke.  When the idea that people with such a low level of education would be doing the testing, he started back pedaling and saying that the people they would contract out to do all this testing and run the program would determine what they felt was best, and if they felt it was best to go with a higher level of education, they would do that.  It was so obvious that it probably wasn’t going to happen and he already had his scapegoat lined up.  The funding they are getting is pretty low (something like $10million for the entire state, divided into research and services I believe)  The amount they were talking about each child getting in services was something like 20-30K-ish, which is just insanely low when you consider the services Zane gets, which is 3-7 hrs a week, depending on the time of year, are worth around $20K. (not including when we had him at the YMCA (had to drop the membership because we couldn’t afford to renew) or the music therapy we want, or the hippotherapy we want to do for him, or the doctors appointments and extra stuff we go through just to get stuff like eye and ear exams, or that we can’t get babysitters for under $20-25/hr for just him, and then need a second babysitter for her.) They are talking about ABA (which is supposed be done for 40 hrs/week), plus ST and OT and “family counseling” and some other things that I can’t recall right now.  I seriously doubt the services are going to be worth a damn at this rate, so I suspect it is actually a blessing to have been born 4 days too early because it would be a huge hassle with very little chance of a return, but I would have done it anyway and I just would rather not spend my time banging my head against the wall like that. 

Another thing, there were some comments that the test they were using to evaluate does not do a good job of evaluating kids with autism.  I don’t know much about the test…I have heard of it…something with Vineland in the name I think…but I don’t know anything about it.

In the circle of parents I talked to, one said that Kansas was ranked 48th in autism services.  I have no problem believing that.  The states that were mentioned as being at the top of the list were Florida, Washington State, California, and Missouri (although I am not sure if that is a top state, or just significantly better and close by). 

Off to try and find the website with rankings.  I wish I could find one with school systems rated…I can’t get a straight answer from people where the best school district is around here, but I think it is because they are all just differing degrees of suck.  lol.

Since it seems to be on topic with this post, I want to direct you to some recent posts by Sarah Ariella that I really identified with and appreciated:  College = learning to argue?, Priceless, and although I haven’t hit this yet, it is worth a read too – required fees = demand for equal services.

and btw…it is perfectly possible I misheard some of the things tonight.  My brain is buzzing it is so stuffed with information, but this is what I recall.

The really cool thing about the meeting though was the networking.  All of us feel so isolated and after the dog and pony show, we were all back there exchanging numbers like we were middle school girls leaving summer camp and wanting to keep in touch with our ‘best friends’.  lol.  People were writing as fast as they could trying to gather  phone numbers from people before they left.