Wednesday, March 26, 2008

The costs of raising kids on the spectrum

My friend Kim Stagliano has three daughters with autism. All three of her kids are significantly more autistic than I was at that age, so they're a real handful. She was just featured on Good Morning America, talking about their situation. The show talks about the costs and financial burdens associated with raising kids on the spectrum.

The show is in two parts. Here's tax Relief for the Disabled
http://abcnews.go.com/Video/playerIndex?id=4517484

Here's more:
http://abcnews.go.com/Video/playerIndex?id=4517505

In Connecticut, many towns pay for special school programs for kids who can't get by in the regular school system. But that's only the tip of the iceberg, in terms of cost. There's the cost and even impossibility of family vacations, the after-school programs, summer programs, and special training.

If a kid has an accident and loses the power of speech, the state will pay for programs to help them recover the ability to speak. But a kid with autism who never spoke . . . there are actually few if any resources for that child in many places.

My own life experience shows me that we (those of us on the spectrum) can learn to fit in and function better. And the earlier we get help with this, the more effective it can be. But how does the average family find the money?

I realize that I'm very lucky, because my impairments were fairly mild and I'm blessed with high intelligence and an ability to forge ahead on my own. What happens to the kids who don't have those advantages, and whose parents don't have the tens or hundreds of thousands to get them help?

I guess they do the best they can, with what they've got.

In some ways, families with more mildly impaired kids can be hurt worse. Why? Because the need for help is not so apparent. For example, no one would say Kim's kids are "just lazy." But that's exactly what teachers said about me. There are many kids like me in school today, and nothing whatsoever is offered to them, because schools do not even recognize their need.

Sometimes I wonder if public schools would rather stay blind, to save money.

I just spoke at a program for Lighthouse Academy in Groton, CT. They are a progressive place, and they're doing a lot for kids in their area. But they are one small school, and much more is needed.

http://www.lighthousevocedcenter.com/index.html

14 comments:

admin said...

Yes, this is a serious problem. Right now I am trying to get local officials to obtain a copy of the GED test booklet that does not have any marks in it. That sounds like a simple thing but these tests get re-used and EVERY test booklet has marks in it. My son has Asperger's and he cannot tolerate a test booklet with any marks in it, even carefully done erasures. He says that they inadvertently tip him off as to which answers are correct. He will not change his position on this. He beleives that it is immoral to do otherwise.

Apparently test administrators cannot stop other test-takers from making pencil marks next to possible answers.

To obtain a new test booklet that has no marks on it will cost us $200 out of pocket, but even to obtain the accommodation we must visit my son's doctor to get approval or the local GED testing center will not do anything. This will cost another $50. In addition to all this it costs $100 to register for the exam. The total cost is $350. I wonder why my son is being penalized for having a perceptual difference. This cost is a great barrier to my son moving on in life. He will not apply for a job or take a college course until he passes his GED. It is as important to him as a board exam to become a doctor, a dentist, or a lawyer. Those tests never have any marks in them.

He has been trying to obtain what he calls a legitimate GED diploma for three years now, three years in which he has not been able to apply for a job properly or take a college course for credit. He is currently auditing a Freshman English Course for n o credit but does not like school because he feels educators are incompetent because they do things that do not make sense and "cheat" by giving him answers to tests so he will pass. This is why he dropped out of High School.

I cannot change his hyper-morality which I believe is a manifestation of his Asperger's. He has a verbal I.Q. of 135 and a performance I.Q. of 92. We are poor and somehow we must find the $350 to pay for a "clean" GED test booklet which you might expect would be available to everyone. We have no choice but to sacrifice dearly so he can move on. We have no alternative. We must pay through the nose for the simple reason that my son has Asperger's.

Michelle O'Neil said...

When my daughter was three years old, her self care skills were that of an 18 months old. Her fine and gross motor skills were very delayed. She was kicked out of preschool for being disruptive, her sensory issues were severe at the time.

We were told by our insurance company that they would not cover occupational therapy, because her delays were not caused by an illness or an injury(very debatable, BTW).

Kids with autism are discriminated against left and right, and parents are often so exhausted from taking care of these challenging kiddos, there is often no energy left to fight the system. We held off on an official diagnosis for a long time, simply because certian things were covered if we didn't call it "autism."

Kim did a fantastic job on GMA. How she keeps her focus with all the distractions, (and manages to look like a million bucks) is beyond me!

Theresa said...

In the state of Illinois where I am from, autism spectrum disorders, ADD, and ADHD are considered by law to be disabilities and qualify those suffering for extra help in the public schools, and I've been told minors can collect on social security early if their parents are poor enough that they can't provide for them. If they do collect early, it takes away from what they can collect at retirement or as an adult if they can't hold down a job, though.

I've been fortunate to have a good job and good insurance that paid for most of my son's social skills group he was in for four and a half years. He progressed past his IEP by the time he reached 4th or 5th grade, but his AS came up again this year and because I had a diagnosis the school began a 504 plan for him that will help him in high school next year.

I realize I was lucky and many more are not. I don't know how my son would be today if I didn't have the resources I had. All states should provide this type of help.

The Muse said...

Wow, thanks for sharing the GMA link with Kim. She has such great composure and stamina! This clip really illustrates the financial demands and the every day challenges that a family with autistic children face. There really needs to be more tax relief for the disabled.

Chumplet said...

What a great, informative clip. Kim and her family looked beautiful, and she has such poise!

My sister and brother in law are fighting a similar battle here in Canada to get more funding for autism.

The Anti-Wife said...

It seems to be a never ending battle for the parents. My nephew's school is being shut down for lack of funding and total burn out of the very dedicated staff. It was a small private and very nurturing place for kids with autism. Again, they have to scramble to find a new place for him because the public schools in Florida don't provide the support needed to help these kids.

Cornelia Read said...

I remember fighting for hours on the phone with our HMO outside Boston, trying to get them to continue covering speech therapy for our daughter, then aged four.

They kept refusing on the grounds that she was "not making enough progress," and therefore they felt the therapy was unnecessary.

"So the only way you'd continue covering speech therapy would be if she were actually to regain the ability to speak?" I asked.

"Exactly," said the HMO woman. "That's why it's called SPEECH therapy."

"So children who can't speak don't qualify for therapy to help them learn to speak?"

"That is our policy here, yes. I'm so glad I could help explain it to you."

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ORION said...

Hey John! I type from home and make good money but I'm NOT a spammer LOL!!!
Continuing the conversation...as a public school teacher my hands were tied. Even when it was obvious what accommodations would hugely affect learning- for example a laptop for a student with special needs that would have made ALL the difference in the world as far as her ability to participate in class...it was nixed at the IEP...students who should have had services waited in line until it was too late- they and the parents gave up-
I could go on and on - and this is only education part- the medical field would make me pound my head against the wall...

ORION said...

By the way Kim S. is every bit as wonderful in person as she is on TV...

Wonder Woman said...

First, I LOVE reading your blog and having further insight into what might be going through my son's head on the day to day. Second, I just want to add that there are also higher functioning kids that are being treated like all that is wrong is a behavior problem. I am so sick of going through the trouble of an evaluation and setting up an education plan for my son, just to have nothing change. I actually just happened to walk into the school last week to find him sitting in the principal's office. He was in trouble for not doing homework that he had done! This is not the first time. We actually told the teacher that he had done his work a few weeks ago, please just get his folder and look. Instead she called my son to her desk and said "Ben, you told your mom that you did your homework when you didn't" and promptly sent him back to his desk. He won't say anything to defend himself because this woman has told him that he is either talking back, or making excuses.

I thank God every day that Ben is so smart and that he has come so far in life. I just go to bed every night feeling like a failure because I don't know the answers. I wish that I could know if I am doing the right thing or not. I want him to be with the other kids, but I know that I would be much better off if I homeschooled him. I do most of the productive work here anyway.

nikita88 said...

hi! i'm new here.

i've been reading this thread and had an idea for admin's ged booklet issue. one solution i found for this type of problem is to go through the booklet and mark every single answer with the same pencil pressure, AND THEN erase them all.

i do it with tests all of the time. This is something that the administrator of the test could arrange as a simple accommodation.

you might also try to make the request through the office of civil rights-

this is a reasonable accommodation and request for you to make.

ChristineEldin said...

Both of my children have a speech impediment. But their impediment wasn't covered by insurance until the age of 6 (which was late for therapies).
This is nothing, however, compared to what you're talking about.
I never understood why we can't make medical assistance available to everyone. I mean, it's not like people will be going to the doctors for fun. What abuse is there?
Separate topic, I know.

wsh1266 said...

hi John-

My name is Whitney Hoffman and I produce the LD Podcast, a podcast about learning and learning disabilities. I just finished your book, and I would love to invite you to be on the show, to talk about the book, your experiences, and how parents and educators can help kids with asperger's. Please email me at ldpodcast@gmail.com if you're interested- you can swing by my website at www.ldpodcast.com for more information about the podcast.

Thanks for your consideration!

Whitney