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