SS Benefits for Child with Autism

[Corryn]

Hello
One of my students is a very busy single mom to a son with autism, works full time & attends school (my class).
She owns her own home and is barely making ends meet. One of her neighbors told her she is eligible to file for social security benefits but she doesn't know how to go about it or what she needs. Her husband is paying child support, and honestly I don't think she's making much more than minimum wage (full-time) She said she really didn't have time to even get that information from her neighbor, but her neighbor did say she needed to hire a lawyer.

This lady is very nice and thoughtful and I told her that I would ask my DIS friends what they have done.

If anyone can offer any advice, it would be appreciated. I'm going to see her in class on Wednesday morning.

Thank you

 

[SueM in MN]

She said she really didn't have time to even get that information from her neighbor, but her neighbor did say she needed to hire a lawyer.

She doesn't need to hire a lawyer - some people do, but it's an additional expense and I would not suggest doing it as a first step.

The first step would be to go to the Disability Benefits part of the Social Security website. There are helpful tools there for figuring out if the person can possibly qualify and the information you need to apply.

I don't know what state you are in, but she may be able to get some assistance with personal care and medical care for her child because of his disability. If she looks at the Health and Social Services website for her state, she should be able to find out about the services that are available. In some states the program is called the Katie Beckett program.
She could also check if her school district has a Social Worker assigned to her child's school. The Social Worked could help with hooking up with resources.

I'm going to move this question to the disABILITIES Community Board where it will be more on subject and hopefully will get more answers.

 

[busykate]

When I applied for SSI for my daughter back 14 years ago, I applied over the phone, they talk you through the process and then send you forms to complete and send back. For a government program it was pretty painless. If she calls the local social security office they should be able to help.

 

[scottsod]

i just got approved for ssi in new jersey after waiting since last august, 1 whole year wait!!!!!!!!

my ds 2 1/2 has apraxia and is now being diagnosed with pdd-nos.
my ds 9 has cp, autism, and brain damage.

both children are getting ssi. for my oldest I knew from day one since he was born 3 months early and died twice on me that he was going to be able to get sis, so while i was in the hospital i called the office. his only took a few months and was retro-active from the day that i called up and requested a eval. the other son took forever because they needed paperwork from place they weren't getting and then they sent someone to my home to do a eval, all the while racking up thousands of dollars in medical bills. but his ssi took effect from the day i called and then 3 months prior. thank god that it all coincided with when he started going to doctors all the time. they even had to pay me back pay for all this time that i have waited.

it takes nothing at all to call the ssi office to tell them about her kid. it will take 5 mins and then they will even schedule a over the phone interview so she doesn't have to come in. then they will send her the paperwork and as long as she sends it back to them very fast and calls her case worker every other week just to check up she should be OK.

in my case what we really needed was the insurance. with getting ssi you get Medicaid which will pay for anything the private insurance doesn't ( if you have private insurance). but you have to be able to get money in order to get the insurance. she could be getting a check for 2 pennies and still get the insurance. any little bit helps and to know that the medical bills will be paid off if the a huge weight of anyones shoulders.

it doesn't hurt to try. there is no need for a lawyer or anything, just a 5 min phone call. It might be able to really help her out.

 

[ecki]

Oh, I just saw you were in New York. First of all, in NY, you can get a Medicaid waiver very easily (no waiting list), you don't have to qualify for SSI to receive it.

I just went through the SSI process with my daughter. You definitely don't need a lawyer unless they challenge your child's disability. But the income restrictions are very low, like the household has to have less that $3000 in total assets (not counting 1 car and the home you live in).

For us, we found out we HAD to apply for SSI because the Medicaid people wanted to make sure we didn't qualify for regular Medicaid as opposed to the waiver. I thought this was stupid. I knew we had WAY too many assets so I walked in to the SS office saying so.

And don't call the local SS office. At least in Sullivan County you will be on hold for hours. The 800 number (found on the SS website) is MUCH more efficient!

 

[D L and K's Mom]

If the child attends school they should be able to put them in touch with a counselor who can help. We work with Lifetime Assistance( NY) and they helped us. Does your school have a guidence counselor...they may be able to get in touch with someone who can help her out.

 

[LauraVV]

She owns her own home and is barely making ends meet. One of her neighbors told her she is eligible to file for social security benefits but she doesn't know how to go about it or what she needs. Her husband is paying child support

You can apply for SSI online. I would doubt that she'd be able to get it for her son until he's 18 though. They consider parental income and assets. They will consider her home, car, etc.

I'd suggest googling "home community medicaid waiver." You can see if your state has any assistance for her. Also, has she contacted your state's ARC? They may have ideas about locally available resources.

Our lawyer told us that it doesn't make sense to hire a lawyer until you've been turned down twice. The third appeal is the time that a lawyer may be able to help. Before that, a lawyer can't make much difference in your chances. Most people will get turned down those first two times. This could vary by region though.

 

[letfuller]

I am currently in the process of applying for SSI for our DD11, just diagnosed with Asperger's, CAPD, Agenesis of the corpus Callosum.

My questions are :

What is the best language to use to be approved?

How much of an income by guardians/parents is too much for SS to deny application?

Why does it take so long for them to make a decision? what are they really looking for? I am not trying to scam the government, but I forsee some major medical necessities for DD.

Thanks for any help you may be able to provide

~Linda

 

[SueM in MN]

I am currently in the process of applying for SSI for our DD11, just diagnosed with Asperger's, CAPD, Agenesis of the corpus Callosum.

My questions are :

What is the best language to use to be approved?

How much of an income by guardians/parents is too much for SS to deny application?

Why does it take so long for them to make a decision? what are they really looking for? I am not trying to scam the government, but I forsee some major medical necessities for DD.

Thanks for any help you may be able to provide

~Linda

I don't know the income levels and am not sure if they vary from state to state. A social worker in your state should be able to help you with that.
We knew our income would be too high, so didn't apply until DD was over 18.

Here's a link to the Social Security FAQs page about applying for disability benefits. At the top of that page, there is a link to the pdf file of the Children with Disabilities booklet that gives pretty much the same information in a booklet form.

There is no 'best language' to use to apply. And, if you find some on the internet or someplace, it's likely to raise red flags to SS. Many other people probably try to use the same language because they think it will help them get approved, so seeing it probably is not a good sign to the SS workers.

The best advice I can give is to look at each question and try to answer it as completely as possible. That doesn't mean a lot of words - it means to think about the question and think of your child and how it relates to your child. Look at your answer as if you didn't know your child - would a stranger reading what you wrote understand it the same way as you do?
Does your answer actually answer the question they are asking or are you assuming they are asking something that is not in the question?

Then, think about proof. What do you have (information from doctors, school, etc) that backs up your answer?
Again, you don't need lots of words. You need concise information that backs up what you said. If they need more, they will contact the doctor/school.

One of the reasons it can take a long time is that some people don't answer the questions completely - so SS has to contact you and get clarification. That adds to the time.
Or they don't provide back up information, or not enough back up information, or the back up information they do provide is not related to the question they are trying to answer with it. Getting clarification of that also takes time.

The more complete your application is the first time, the more likely they are to OK it the first time (although many people get denied the first time) and the shorter a time it will take.

 

[barkley]

I am currently in the process of applying for SSI for our DD11, just diagnosed with Asperger's, CAPD, Agenesis of the corpus Callosum.

My questions are :

What is the best language to use to be approved?

How much of an income by guardians/parents is too much for SS to deny application?

Why does it take so long for them to make a decision? what are they really looking for? I am not trying to scam the government, but I forsee some major medical necessities for DD.

Thanks for any help you may be able to provide

~Linda

i used to supervise a medical unit that handled county and state based medical care for among others-those who had pending ssi and ssd applications so i was constantly reading ss approvals and denials (and had copies of the original applications/med documentation).

i'll share with you what i learned were the most common reasons for an adult or a child with a valid, acceptable (per ss criteria) medical disability who met (or whose parents met) the income/assetts criteria to have delays in processing their initial application-

1. incomplete or missing forms. i suspect that the first person who looks at these app. packets does a sundry review and if anything is missing or incomplete it gets sent back and until it's return and complete to their satisfaction nothing else gets looked at.

2. inconsistent or (hard to come up for a term for this) non-meshing medical reports. by this i mean that if there is more than one doctor involved in a person's care and diagnosis it's important that they are all on the same page with how they word their reports. if there are gaps that leave ss wondering if certain things were not considered or done with the diagnosis they will bounce it all back and ask for more or deny it saying that the information does'nt substantiate the diagnosis. for this reason i always suggest that if you have multiple doctors you speak to each and ask them to write a simple draft of what they would say of your about your diagnosis and how they came to that (tests, information from other doctors...), when you have each doctors draft provide copies of all of them to each doctor so they can write their final version. in this way they can say that they did'nt need to test for x and y because dr. such and such did, that dr. such and such ruled out a and b which led them to test for s and t....if all doctor's letters can support and concur with each other on the ultimate diagnosis it can be a tremendous assett in supporting the application.


what social security is looking for is that a person has a disability that falls under their prescribed list of those that qualify. just having a disability does not automaticaly qualify a person for ss, it has to be one that they have on their 'list', and at least in the case of an adult-it has to be such that it impacts on the ability to be employed (so an adult can have a disability on that list, but unless ss gets verification that the disability prevents employment to a great extent they will likely not grant it).

 

[got2luvtink]

Maybe she can call the local MR/DD office(mental retardation and developmental diabilities-Autism being a developmental disability). They might be able to help with things like respite, summer camperships, and purchasing "equipment" or things she might need.

 

[Corryn]

Thank you all for the responses. I just cut and pasted them all and printed them out for her to look at when we return to school this week.
Thanks again