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Old 04-24-2014, 05:27 PM   #1
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Has anyone gotten SSI for high-function autism?

I'm getting to the point where I'm finally admitting that my "high function" 6-year-old daughter is actually pretty severely disabled. It's also extremely expensive to meet her needs, especially since we've had a huge income cut and we've got a baby on the way. Our income is well below what would qualify us for SSI.

Anyway... I'm wondering if anyone has had any luck getting SSI for "high function" kids, or if you can pretty much only get it for nonverbal autism.

FWIW, my daughter is only "high function" because she has a (very) high IQ and she's extremely verbal. But her social, behavioral, sensory, gross motor, and fine motor skills are all, frankly, terrible. She's completely unable to dress herself and still needs help in the bathroom and has frequent toileting accidents. She can't ride a bike or brush her own teeth or carry on a conversation with another child. She also has panic attacks (read: screaming and crying and hyperventilating) when something "triggers" her in a sensory way. So even though she's supposedly high-function, she has very significant special needs.

It has all been diagnosed, fortunately, and she has an IEP that accounts for all this.


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Old 04-24-2014, 08:46 PM   #2
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Doesn't hurt to try. Around here almost everyone is denied the first time, so be prepared to appeal.
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Old 04-24-2014, 10:50 PM   #3
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Re: Has anyone gotten SSI for high-function autism?

You would be better off asking your local autism society about their experiences. While the rules are national each state's process is a bit different. You even have to be re-screened for eligibility after moving to another state, Alabama re-screened us via a phone interview.

I know Florida's process but we were able to skip a few steps because my son's case was cut and dry because he is multiply and severely disabled due to this being well documented we only needed a medical review of the documentation to finalize after the initial in person interview. We were given pre-approval to immediately enroll in Medicaid the same day as our interview but they don't pay out the SSI allowance until finalization.

IQ isn't the important factor. Significant day to day functional limitations that are expected to be long term are the important factor. They are going to want medical documentation and evaluation documentation.

Of course it isn't a waiver program so parent's income and assets will be counted. I would suggest making sure you qualify financially before even beginning the process so you don't waste time.

We submitted genetic testing results, DME justification letters, therapist evaluations, radiology summaries, IEP & IFSP's, NICU diagnoistic summary, latest opthamology report etc..... Your list will obviously vary from ours but that gives you an idea of all the medical documentation you will need on top of the financial documentation plus you will need to list all medical professionals seen with contact information so they can verify your medical documentation.
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Old 04-25-2014, 12:45 AM   #4
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Re: Has anyone gotten SSI for high-function autism?

Kearnan qualified but he was considered "low functioning" at the time. He has many co-morbid diagnoses he didn't have then but he "should" be able to care for himself eventually, in theory. It is that whole combo of ADHD, anxiety, SPD, high functioning autism and whatever else might be going on (there is something we just don't know what) that I worry about. Oh yes and the pituitary dwarfism, can't forget that. It really is state by state, we are not reviewed year to year and I understand medically it is easier to qualify here (at least it was when he did) but income levels are tight here. In other states you can get a waiver for just medical or secondary programs but there is nothing here (we never got medicaid expansion either). His one medication would cost something like $2000 in copay each month and we have good insurance.
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Old 04-25-2014, 01:00 AM   #5
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My sister has Atactic cerebral palsy & she walks and talks completely normal and is age 30 but mentally age 12ish? You wouldn't know by looking at her that she has a disability. But she receives ssd. She started getting it when she was 18. We found out later my mom could have gotten it for her as a child but we didn't know about ssd then.

My mom recently became disabled and we had to get an attorney to get her SSD because the 1st time she got declined and they said she was able to walk without the help of a wheel chair or cane and she was actually (at the time) staying at a rehab place because her foot was in a 22lb halo with pins going through her foot & couldn't walk with a cane or be in a wheel chair without people lifting her in. So the attorney really helped & now she is back home thankfully but still unable to walk w/o a cane.

Ask an attorney. You may also be eligible for resped (<- spelled wrong) care. Which is a highly trained baby sitter to watch your daughter on occasion.
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Old 05-30-2014, 07:01 PM   #6
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Re: Has anyone gotten SSI for high-function autism?

My son is verbal with a diagnosis of classic autism. He was approved for SSI benefits that we use to pay for therapy because insurance won't cover anything autism related. He would be considered "high functioning" but as you said, although he talks, he is still very disabled. It doesn't hurt to try!
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Old 06-20-2014, 05:59 PM   #7
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I agree, it doesn't hurt to try but I also agree that I would confirm that you would qualify income wise before going to all the trouble to fill out the whole application. Their income limits for SSI are very low and they don't allow much in savings or assets either. Even if you have 2 cars in the household that are both worth more than $3000, that's considered too much. You are allowed 1 car in the household but after that, the 2nd car counts towards household assets and the assets have to be under $3000. So if your 2nd car is worth $3050, that's too much or if your car is worth $2000 but your savings account has over $1050, that's too much. They are very strict. If you do apply online, make sure to print the entire applications md save it.

But I can also relate to your situation, she sounds just like my 4 1/2 year old son. People always say "he doesn't look like he has autism" since he talks and makes some eye contact but he's actually low functioning. Like you said, he can't dress himself, needs diapers, can't eat (he has a feeding tube), can't hold a pencil to write anything, he has low tone, severe sensory processing, screams in public, will run off in public, etc. It's something that heavily affects everything he does all day.

Good luck to you!!

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