Talk to me about getting an aspie kid onto SSI? Can it be done?

[frugalmama]

We're just starting to get a formal diagnosis, mostly because it hadn't really mattered to us in the past since we home school. Now however she is beginning to need help in areas that I'm not experienced in, and I think some OT might help her to catch up to her age peers. DD is 5, and definitely on the spectrum from the behaviours I have seen and others have seen - when we went to a recent disability expo several therapists, etc picked up on her being on the spectrum right away from minutes of her behaviour. 

I'm debating trying to get her onto SSI for it, for two reasons. #1 Less gaps in medicaid {right now we end up with a month or two gap every 6 months} so that if she does get therapy she doesn't have gaps in it. And #2 financial - there is no daycare in town willing to take her as an ASD child with multiple severe food allergies and sensory issues. Even if there were I don't see it going well at all - right now she can tolerate about 45 minutes in a group setting with low expectations before a melt down. She's not fully potty trained, despite 2.5 years of working on it. I've tried to work from home, and it's not working well enough to provide for her and what she needs. SSI would provide me a means to stay home and concentrate on HER and HER needs without worrying about the bills and being gone long hours trying to make enough to make ends meet. And yes, I know the SSI check isn't much - I've already crunched the numbers and it would be JUST enough to make ends meet. 

So - has anyone gotten their ASD kiddo onto SSI, and if so what was your experience? Pros and Cons?

[KCMichigan]

I would pursue it, but know that it may take awhile and/or you may be denied once or twice or may just not qualify.

I have read that it varies by state and income levels/need, etc.

You will need a Dr report with written diagnosis and level of need and likely a psychologist,they might need statements that she can not be served through the public school for whatever reasons and/or proof of need, I know as a teacher- I had to fill out reports for SSI for some of my students.

Make sure that you get a medical statement of food allergies and sensory stuff as well. The more information the better.

They may request an eval through a state Dr as well 9 (I know that when I looked into our areas 'health specific insurance for kids' that we would have had to had an outside Dr approval).

You may be able to get OT through the school and homeschool, again that depends on your area.

THe Potty training may not matter to be honest, my 6 yr old DD is not PT and attends school (though I know that schooling is not your choice). I only share that because SSI office/interview/etc may not allow that as a reason for not attending/getting school related resources if you are requesting SSI for therapies that could be given through the schools (free).

I would say that in the area I was in , when I was teaching, the kiddos on SSI had to 1) be income needy for mild/moderate disabilities   2) have really low birth weight for automatic qualification for first year 3) have severe needs with multiple expenses. Most got denied on the first try and/or it took a few months.

Good Luck I hope it works out for you and your DD!!

[Mylie]

Once you've got your diagnosis go for it..And with your child being so young it might not be as hard either.It is probably going to depend on the child's doctors and the way they fill in the paperwork..With my special needs son he was 9 when I started the process.It took probably 8 months in all and I just opened up my mailbox one day and found a big back check.I got that before I got the acceptance letter.As long as you have got the diagnosis and problems trailing in paperwork and the doctors write it down in the oodles of paperwork they will send them and you it might go fairly quickly..By that I mean about a year..But don't give up if you are denied once.SSI is known for being kind of wierd in their ways.But the sooner you get the app in the quicker you will find out and it dates back to the day that they get the app.So that really helps.the money really help us too with paying for extras he needed from financial to special skates for therapy.I hope it goes well for you..

[Eyelet]

I agree with the others. SSI will ask for proof of a  diagnosis and most likely an IEP as well. The more written documentation, the better. 

 

My son is severe on the spectrum...nonverbal, developmentally delayed, etc. and SSI still gives me a hard time about medically qualifying. From talking to other parents, it seems aspbergers as a qualification is hit or miss and who your case worker is.. It's important to be persistent and pursue it. If you're denied the first time, reapply and/or hire a SSI attorney. 

[CerridwenLorelei]

go for it. I wish I had known I could apply when DS was little (he is now 14)

and now of course dh is in a position that we don't qualify though I am going to file an appeal anyway.

I did apply for ssi with the oldest and it was   a disaster due to a bomb threat in the court but i can tell you that the more paperwork you have the better. Paper, paper, Paper. And make three copies of everything. One for you, one for them and one for possible attorney or other agency/agent.

If you can even find a contingency ssi attorney. That will help you threefold if you can.

Good luck

If you are in Texas I recommend Jim Adler

Edited by CerridwenLorelei - 12/2/11 at 3:30pm

[Rik-E]

I applied last year & DS was denied - age 7 aspie with anxiety & SPD. He is showing need for more interventions lately so I am thinking I will re-apply soon & stick with the appeals if he is denied. Never hurts to try right?

[Eyelet]

Another thing that I've come to learn is that the income cutoff is indisputable and can not be appealed. But there is some wiggle room to challenge medical qualifications.

[queencarr]

We appealed with my oldest son all the way to court level (3rd stage of appeal, I think). It took 2 years. Anyway--paper trial and document!!! I kept my daily calendars for all 3 years at that time with all of his tx appts and was able to construct a timeline of how many hour/week we were at various therapies, drive time, frequency of dr. Appts and in town/out of town, plus our recommended home program. I was able to show that I worked 40+ hr per week just in his medical/therapy care and that even had I been able to find childcare that was appropriate I was not employable at that time.

[Aufilia]

Some states have a program that may be called the "Katie Beckett waiver" or "Deeming waiver" that will let you get medicaid coverage for some children regardless of income, so if you go off medicaid because of fluxuating income, that might be worth looking into.  My state, sadly, doesn't seem to have it, and some states that do have it only cover medical/non mental health stuff. 

Also have you contacted your school district for an evaluation for services?  I believe they have to provide you the opportunity to access services even if you homeschool. 

[mamanoish]

I applied for SSI in October for my son with ASD to help pay for therapy, as we make too much for medicaid. I haven't heard back yet, but we do have a formal diagnosis. I brought in every paper from every evaluation. Hopefully we'll hear back soon and I can update with good news. I say go for it! I am just worried that we will be denied based on income. It's not like we're rich. We certainly can't afford to continue paying out of pocket for more therapy, yet "make too much". It's so frustrating. 

[Eyelet]

Originally Posted by mamanoish 

I applied for SSI in October for my son with ASD to help pay for therapy, as we make too much for medicaid. I haven't heard back yet, but we do have a formal diagnosis. I brought in every paper from every evaluation. Hopefully we'll hear back soon and I can update with good news. I say go for it! I am just worried that we will be denied based on income. It's not like we're rich. We certainly can't afford to continue paying out of pocket for more therapy, yet "make too much". It's so frustrating. 

It is frustrating. Their income guidelines are way too low, I feel.. Basically, you have to qualify for food stamps to be eligible. To be brutally honest, we're a family of 4 living on $14 a hour and we *barely* qualify for SSI. It sucks big time.