Social Security for Autism question

[worm761]

DS is 13 almost 14 years old. When we took him to the neuro-psychologist, the paperwork I got back states that a diagnosis of either High Functioning Autism or Asperger's Syndrome should be considered. I just assumed Aspie and went with that. The older he gets the more I see it is probably HFA. I don't believe he will be able to move out on his own or even hold a job. I know we will try as he gets to those stages in life but between the autism and ADHD, I just don't think it will happen. He really wants to be a video game designer and we are running with that right now. He is trying to design a game for Nintendo. He eats, sleeps and breathes video games. So I started thinking about his future the other day. If he is unable to hold a job he will most likely need SSDI. Right? Would it be better to try to get it for him now, as a minor? Will that make it easier for him as an adult? These aren't really the things I wish to think about but the reality is you have to with these kids. So any advice you guys have?

Part of the reason we think this is he cannot get his morning routine down. This is not hard. Eat breakfast, brush teeth, deodorant, hair, put on clean clothes. At almost 14 he should be able to accomplish this. Yet every morning it takes over an hour to get it all done. And sometimes He doesn't get everything done. I have tried lists/posters. but he can't remember to look at/follow them. Any suggestions? we homeschool so it doesn't really matter how long it takes but it kinda does if you know what I mean. Things are getting harder these days since I just had a baby too. Thanks for listening and for any advice you guys might have for me.

 

[sl_underwood]

I havent really dealt with applying for ssi but my son (adopted at age 5) came to me with SSI already. Once we adopted him our income was to high to qualify for a cash payment but we were told to continue to submit all they ask for and do the yearly review so he wont have to reapply as an adult. The worker told me is is very difficult to get as an adult.

 

[worm761]

Thank you so much. I kind of figured it would be harder to get as an adult. That is why I was thinking of starting the process now. What do I have to do? I tried reading and it said something about how it isn't based on a diagnosis. It is based on the abilities or inabilities. Honestly, a 13 year old doesn't have much need for money. I know he would love to have more than his small allowance but I don't really know about the process. Any advice on that?

And thank you so much for not jumping on me. The Dis is sometimes a judgmental place. I was very nervous writing this out. I already feel horrible thinking that he may never be able to do these things and planning for it when really I should be supportive of him and his dreams. I just don't think that he will be able to achieve them and feel horrible for feeling that way.

 

[Kae]

I am not in your shoes but for other gov types things I have always been told to get your name & info in the system as soon as you can. I would start the paperwork & apply

Kae

 

[bookwormde]

All of us with kids on the spectrum have this issue in the back or our minds since we really do not know where our children "will end up" when it comes to self sufficiency. I am about 3 years behind you so sharing what you find out and information about the process would be appreciated. I am not sure that paleontology will be a practical vocation for my DS.

Have you tried laminating the morining activity list and having him wear it around his neck on a chain until it is completed, When you are busy doing your area of special interest in your head other things just are not that important.

bookwormde

 

[Kay1]

I'm in the process of applying for SSI. I had to wait until my son's 18th birthday to do so. SSI is different from SSDI. SSDI is for disabled workers. A child with autism can receive SSI but it's needs-based, in other words for kids whose parents make only a certain income.

Now, he has been on the med-waiver list and qualifies for certain state-run programs or will when there's adequate funding. Since you seem economically secure, I don't think Social Security can help you right now.

I applied after son turned 18. He was diagnosed with autism and two-and-a-half. He started the public schools at three and has always been in special education, never mainstreamed. He's been with one of the state's top neurologists for 16 years (Dan Marino's son's neurologist) and no doctor has ever doubted his disability. The Agency for Persons with Disability helped us with the med waiver. They also did some testing and he scored sky-high on his C.A.R.S.

I feel his case is pretty solid but I'm still sweating it. In Forida, we have a 65% rate of denial. If he's turned down I'll hire an attorney. Something else you should know is that the process takes a long time. I applied in October and have not yet received a decision. I did get a letter last week that said he isn't qualified for SSDI, which I already knew, but I'm hoping that means his file is at least out of the DDS offices of the Department of Health and back with Social Security.

I fould a site you might like. It's webmaster is a former DDS examiner. It's:
www.disabilitysecrets.com

 

[summerrluvv]

I can relate because my son is the same way. He is pretty high functioning, but just has really poor follow through. He has a few simple steps to get ready for school, or to get ready for bed (or really anything for that matter), and he just cannot do them. He just turned 11. I feel like he is going to be dependent on me forever, which I really don't have a problem with so to speak. At this point I don't think he would qualify for SSI though based on parental income, so I haven't even tried.

I am waiting on his new IEP from school so I can send it to an agency (along with his medical docs) to register him with OMRDD (office of mental retardation and developmental disabilities) to at least get him in the system. Check and see if your state has something like that. I know the agencies around here will provide reimbursement for programs, respite car and adult services when they get older.

 

[deerhart]

child ssi and adult ssi are two different beasts with different rule sets. Him meeting the criteria for child ssi doesn't mean he'll meet the criteria for adult ssi.

He also will not automatically get adult ssi if he is on child ssi. The application will have to be done when he hits 18.

There are a LOT of misconceptions about the whole social security disability process. First off, the reason most are turned down has nothing to do with the level of disability but one of 4 things. 1) either docs didn't provide the medical records timely (and with SSA timely is within 10 days, then a 2nd notice is sent and 10 more days after that they start making decisions) 2) the case isn't clear cut and takes extra work. here you must realize that SSA doesn't want the DDS (who aren't medical docs) making decisions that aren't BLATANTLY obvious. I mean, come on I had a client who had been in a coma for 7 months and they tried to deny him for his condition not expected to last for 12 months (we got that one remanded and approved). Even some that are blatantly obvious get passed by (like my guy that would grid if he can't do relative past work and they created an rfc stating he couldn't be around hazards and then stated he could do his past relevant work as a truck driver *sigh* an ODAR attorney caught it right when it hit the hearing office and before I had a chance to call and awarded the client) 3) the DDS person thinks the case is good, but does not want to to the extra work to get the case past quality control (especially when they have 300 more cases sitting on their desk and 20 more coming in every day) and thus just deny it and push it one because they know he hearing office will catch it and award it without issue. Please realize that SSA has been on a hiring freeze in many of the dds offices for years (I doubt they have lifted it with the economy the way its been). Finally 4) social security does not work in reality. It works in a hypothetical world. The question is not whether there are any jobs you can do with current job openings, the question is not whether an employer would actually hire you, the question is if given the opportunity to do this job COULD you do it 8 hours a day 5 days a week despite your disability. Many folks just don't get that distinction. Lots of my clients can't fathom that they made $20/hr at their old job and SSA won't give them benefits because they say they could do a job that only pays $8.00 an hour. Well pay isn't a factor, heck whether or not the industry is even hiring isn't a factor. Just whether or not you could do the job.

Also, the wait time will REALLY vary on where you live. In 10 states they have a shortened process (prototype states). They go from the initial level straight to hearing if denied. In all the other 50 states and DC, you do initial, reconsideration (initial all over again basically) and then hearing. At the hearing level, your wait time will be based on the backlog at your ODAR. At last I checked (and its been awhile since I don't do SSA nationally anymore) the average wait for a hearing in the Atlanta GA offices (both Atlanta and north Atlanta) were pushing almost 4 years. This is AFTER the average wait of 6 months for each of the initial and recon level (so 5 years total). In comparison, the avg wait time here in St. Louis is about 16-18 months. There are a number of places with an average wait time of less then a year.

As for what is required, it is NOT dx based really. It is based on abilities. The only time its dx based is if the person meets a listing. Even then, they must have very specific limitations. For example on a heart listing, the must have an ejection fracture of a certain percentage and enlargement of the heart at a certain size. This is because by SSA rules, meeting the listing will mean you pretty much automatically have such restricted functioning that you meet their rules.

Just an FYI, when my oldest son was younger, he met several SSA children listings on paper and probably could have gotten him easily approved (but we made just a tad to much money). On the other hand, any judge that met my son at hearing would have denied him despite how good he looked for an approval on paper. (my son had verbal IQ scores in the lower 70's). His compensation skills have always been excellent (at the time his working IQ was at least 2x's his verbal IQ)