disabled?

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Hello all. With the new autism diagnosis for my almost 11 year old son, what should I be doing with the government, basically? Do autistic kids get declared disabled? Does it matter what the family income is? I've googled a bit and it seems that autism is not considered a disability and that if it was, the program only provides some supplemental income and if we make too much there is no reason to apply. Does this sound right?

There is a group in our area who provide free services to people with developmental disabilities, and with the new diagnosis, we are in the process of them evaluating him and getting him approved for services. As I understand it, there could be social classes, group or individual therapy, and even an aide in the home for periods of time (OMG YES!) He is already on an IEP thru his school (we homeschool but we are members of a charter school for homeschooling families) and with the new diagnosis they are going to re-do testing and add different testing, and his main special ed coordinator is talking about OT and adaptive technology...

But other than that, is there some major thing I should be doing now that I have an autistic child that I might not know about?

It already sounds like you're on the right track.
I'd recommend talking to the group that are providing the services to your son; there is no shame in showing your ignorance when you are seeking advice and assistance, and they're there to help you.
You will likely get more assistance and advice from a local group used to dealing with the issue than on a posting on WP - not that people on WP are not helpful or full of advice and information, but the group in your area are more likely to understand the way services and support work in your area.
At the very least they should be able to give you some names of organisations and who to see about confirming eligibility for services.

As to what to do with the government; again discuss this with your group, depending on what part of the world you are in, the government services and funding may vary from country to country, state to state, or in some cases whether you live in a "launch area" for Disabilitycare.
Definitely also a good idea to have a look at specific websites that deal with ASD, and to look at their hints and links, as you may find something more suitable and local more easily that way than just googling services in your area.
If all else fails you can't go wrong looking up Tony Attwood, who I'm sure will have what you will find to be helpful links and advice on his website.

It is possible to set up a disabled individual as a child to receive SSI. I've heard from many parents of lower-functioning kids who have found that this is actually more of a burden than it is a help (one mother I know gets something like $400 per year for her son, for which she has to jump through all kinds of hoops and red tape - she tried to take him off because it wasn't worth it and was told she'd have to re-pay the entire amount she'd received from the very beginning.)

It depends entirely on your state - in IL, I know the process is long and drawn-out, and you have to go through a PUNS (Prioritization for Urgency of Need for Services) program to get things like respite care, etc. Contact your department of human services and ask what they've got and if it looks worthwhile for you.

Mostly, the school systems set up services for kids with disabilities - so take advantage of whatever they offer.

The way I look at it has been this:

1. Identify what you need for the child.
2. Identify who can provide that. In our case, the answer was the school. For one item, the school referred us outside of the school to a program funded by a different non-profit, but it was all worked through the school. Since your son is not part of a school system, this will be more complicated. But a lot will be funded either through government intervention programs (usually via the local school district), health insurance, or whatever charities are available where you live.
3. If you have needs that cannot be met through the above, look further. Hard for me to detail what to do here, because we always got we wanted through the school, and have had no trouble affording the few things we've chosen to do on our own.

From what I've experienced where I live, only families with severely impaired children are getting cash assistance. Mostly, it has been how to find and then access needed services, like OT and speech (social skills are usually taught through speech here).

Setting him up for adult disability, if applicable, is something you'll look at when he is older. For now, your goal is to get him the services he needs to develop skills so he will not need or qualify for adult disability. You put 100% into that over the next few years, and try to take an honest assessment of his future prospects once he has entered his teen years. IMHO opinion, anyway. A lot of our ASD kids can and will make it on their own eventually, but it will take a lot to get them there. I would worry about how it changes everyone's efforts to not start assuming you can get him to independence. I wouldn't want to risk selling him short.

Kids are expensive, and most of that responsibility does and always will fall on the parents. I don't get the sense from your posts that your son is so impaired that the state is going to want to step in, but that doesn't mean you can't ask. You never get what you don't ask for, as they say. But ... in high functioning kids, ASD is treated more as a learning disability / developmental delay than a "disability." I have a friend whose son has cerebral palsy, and there is no comparison between the life long support that young man will need, and the types of supports my son has needed.

I just want to say, count your lucky stars! In my state, homeschoolers get no governmental supports or services. I'm not complaining b/c my son doesn't need much, and homeschooling protects my son from kids who would give him trouble. Just sayin'.

Hmmmm do you mean you don't have charter schools that are for homeschooling? When I was doing it on my own I didn't get any support. But now he's actually enrolled in a school. It just happens to be a school where everybody homeschools.

Public charter schools are still public schools, even if you get to keep your child at home with you. There is still state oversight. In a state like mine that involves itself very little with homeschoolers, going that route would increase our involvement with and interference from the public schools a hundredfold, and I willingly trade not having their assistance to stay away from their ability to insert themselves in my life. There is a charter "homeschool" option here where they tell people what to teach (by providing free books) and have teachers periodically supervise and inspect, if you get the help you want from them without their nose in your business, then that's great, but isn't available everywhere.


We did sign my oldest up for disability. His diagnosis was autism and not Asperger's (this was before the DSM V came out), and he is not as high functioning as most of the kids that are talked about on here. The realization that he may require some level of lifelong assistance is what pushed us to pursue the diagnosis, and what sent us to the Social Security office. If he does need assistance life long, then he needs the record to start well before he turns 18. Also, our insurance is governed under that ridiculous federal regulation that allows the insurance company to disregard any and all state laws as they see fit. My state has excellent laws regarding the coverage for autism diagnosis and treatment. My insurance company feels free to disregard this.

He qualified immediately. It took them about three weeks to approve it, probably because we had a two week old ironclad diagnosis from the only place in the state qualified to give it with a developmental pediatrician, at least Masters level speech pathologist, and at least Masters level psychologist (though both of those were doctors in our case, lucky I guess) all adding their test results and specific impressions to the report and all agreeing on the diagnosis. He doesn't draw the full amount, and some months (overtime, three checks that month) he doesn't draw at all which ends his Medicaid, but there is a state program to cover kids that qualify but make too much money, so his coverage, in theory, remains stable. As long as he qualifies for a check at least once every 12 months then he keeps the disabled designation with the federal government.

http://www.socialsecurity.gov/ssi/text-child-ussi.htm This has a chart of income limits for families with disabled kids. We have other kids in the house, so it makes the limit pretty high.

If we didn't think he might need assistance after 18, then we wouldn't have applied for it regardless of the insurance issue, so I guess DW_a_mom has the right idea, think about what you want/need for the child. Is it possible that he will need lifelong assistance? A paper trail before age 18 is very helpful toward getting the adult "child" drawing SSD based on the parent's income. If he is very high functioning Asperger's and likely to learn enough coping mechanisms to be able to go to college and get a job, then it probably is more trouble than it is worth. We do have to manage the insurance type juggling, and have to send them pay stubs monthly, which is pretty invasive (not that the government won't want the year sum in April, anyway though, right?)

Right, we don't have charter schools where the child is taught at home. It will never happen here. I have mixed feelings about that.

Thanks MiahClone, great info. There is a chance he'll need assistance and won't live away from home or independently. His counselor thinks so for sure. I have my doubts but I'm not sure one way or the other.

aann, got it... There are so many options in this area for homeschooling (I'm in the Sacramento area of California.) It's really quite amazing. Some don't care what you do as long as you meet with them every 21 days. That's the one we are in. They don't provide curriculum or anything so they give us money each semester to buy stuff/take classes. Others provide curriculum or part time instruction, so they are free but don't give you money. Plus I had been homeschooling on my own and the truant officer didn't show up.

I teach horsemanship at my ranch to a lot of homeschoolers who are in the same school we use, and it can be scary. Most of them don't know what a penis is, so when the horses urinate and they ask me "what's that?????" and I tell them, they are clueless, and that's pretty awkward. And of course I have to be sensitive to talking about things like when horses evolved from three toed to one toed animals as a lot of them don't believe in evolution. Or when we talk of the history of horses, they don't believe in anything that isn't mentioned in the bible. I am very respectful of people's rights to teach their children what they see fit but I do sometimes wind up thinking people are not giving modern science a fair shake. I teach my kids both (about religions and about science, and about where they overlap and where there are disagreements) and they can believe what they want.

So I try not to be all "well I have the right to homeschool my kid and I can do it appropriately, but YOU can't" but sometimes it's challenging. So, yeah, mixed feelings.