Will You Share Your Experience with Social Security for a Child?

Updated on June 11, 2013
M.S. asks from Troutdale, OR
13 answers

My 25 month old son saw the developmental pediatrician on Friday, and while she didn't make a formal diagnosis, she did say that she is certain he has Autism, and the evaluation clinic next month is just a formality really. She also gave me the paperwork to fill out to get SSI for him. I am not opposed to this because we keep running out of OT and PT visits, and I can use the money to help offset the out of pocket expenses of his therapies. Thankfully we haven't run out of speech yet. And yes, we are using Early Intervention but it is the other more intensive therapies that are making a bigger difference for him.

So, my question is this: what is the process like to get SSI? do they deny you a lot for disability like they did my dad? I read the page on the government site about it, but it is pretty general and really positive. I know that is not really the case....I mean its the federal government. So, will those of you who have been through this tell me some of your stories please?

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answers from Seattle on

My son cannot receive SSI until age 18 due to our income, we make too much. This is in spite of my son's disability(classic autism)and needed services. We've had to figure out how to cover his services since he aged out of the birth-three program. However, I've learned, at least generally speaking, we are in the minority at least in our area. Oh, and yes we did just go to the social security office with an appointment to try and apply after our son's developmental pediatrician and OT recommended it.

Good luck.

5 moms found this helpful


answers from New York on

What. He is two. Autism. social security. You don't know he autistic. He is two for Gods sake. Social security for for the severely handicapped child.
No way would he be approved. Based on what. A possibility. Let the people who need it get it. That's what is wrong I. This cou try today.

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answers from Portland on

Edited massively! Hmmm! Interesting. My grandson, 9 now, has autism as well as sensory processing disorder and speech apraxia. He's been in special ed, including a elementary school just for kids with development and behavioral issues and SS office said he's not eligible for SSI. It would seem that his disability was severe at the time they asked about it. He was placed in a therapeutic preschool.

A child has to be severely handicapped. Autism is not necessarily severely handicapping. You don't say how severe his disability is.

Here is the address for a government pamphlet talking about SSI for children. http://www.ssa.gov/pubs/EN-05-10026.pdf And this site lists requirements to qualify for SSI based on mental disorders of which autism is one. http://www.ssa.gov/disability/professionals/bluebook/112....

The list is not as helpful as I'd hope. It doesn't describe what makes up qualitative defects. I suggest that the doctor will have to be good at diagnosing and describing.

I've not heard of any child in the group of children that my grandson and his mother know that has been able to obtain any sort of Social Security income.

Your child may be eligible for other programs, too. My grandson continues to get treatment thru the school district. This is required by Federal law. And his health insurance covers most of what's left, tho he needs more than the insurance is willing to pay.

Your son is eligible for Federal Assistance thru the No Child Left Behind law even tho he's not school age. Call your school district to ask for that office's number.

And he may be eligible for Medicaid thru your state, depending on your income.

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answers from Miami on

You can certainly complete the application, but I wouldn't "bank" on it. It really depends on the severity of your child's condition (including any sensory or physical disabilities) and you would need a formal diagnosis to file the request.

Your son is very young and there is no "blood test" to confirm Autism. Once you have that medical label, it's very difficult to have it "removed" from documentation. I say this because I have worked with children with Autism for nearly 15 years and am part of the diagnostic team (psychologist). When we look at whether or not a child is on the AS, we look at whether or not a child is presenting with specific behaviors (frequency, duration, intensity). For some children, what looks like Autism at 2 is really something else by the time they age into Kindergarten... not many children, but for some. This is the ONLY reason I would caution you about documenting a condition and THE reason why schools consider ALL children a "preschooler with a disability" or a child with a "developmental delay" until they are old enough to really measure what's going on.

File the request, especially if you need the cash to pay for therapies. You can always have an updated evaluation to "correct" a diagnosis.

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answers from St. Louis on

You need to ask yourself is it worth it to label your child, in a manner that will follow him his whole life, just for a few bucks now!

I am quite serious and this is coming from someone who has what is regarded as a disability raising or raised four kids with what is classified as disabilities. This includes my more than brilliant, yet autistic 14 year old.

I only tapped the resources offered by the school, of course my kid's doctor and they are all just fine. Even Andy, the 14 year old is fine. He will be going into high school this fall with 100% inclusion with support. In other words people are there when he needs them.

Having to accept an IEP that would follow him through school was hard enough to swallow. My older two never had IEPs. The thought of something that would follow him his whole life, be seen by employers, oh heck no! Not something I felt I had the right to do for a few bucks of extra support that it turns out isn't needed at all.
I want to add my answer would be different if you weren't getting support, you are. The little bit of extra you would be able to get just isn't worth that label.

Put a different way, my ex is wealthy, I can afford anything that was out there and there just wasn't anything out there that would have mattered enough to spend my money on. The best programs are the preschool offered by your school district.

4 moms found this helpful


answers from Washington DC on


Your two year old son? What does he need Social Security benefits for? You don't even have a formal diagnosis and you are completing paperwork? REALLY?

Do you REALLY want to label your child? he's TWO. Give him a chance to grow before you stick him with some label!

You are getting him the help he needs. He hasn't even been formally diagnosed and you are jumping to label him? I'm sorry. I am NOT trying to be mean, but really. I would NOT be so quick to label my son. You realize that once he's "labeled" - the chances of him getting out from under that label is slim, right?

I have not applied for SSI - so I can't give you a story. I can tell you that I would not be so quick to label my child. He's TWO.

3 moms found this helpful


answers from Los Angeles on

I used to work as a case manager at community mental health center. I used to assist parents with applying for SSI. In my experience all the cases I was involved with we're approved with a waiting period of a few months to process. These were children with mental health diagnosis made by a psychiatrist. I'm not sure how different it will be with Autism, but my guess it would be comparable. Also this was 7 years ago so things may have changed a bit, but this was my experience when I was working. Good luck.
Just read some of the other responses and wanted to add a few things. SSI can be applied for for disabled children who have never worked. SSD is for those who have become disabled and no longer are able to work. And please don't be deterred by those telling you that you don't deserve it. Many children get SSI. If you need to the money then you should apply.

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answers from Los Angeles on

First, a brief overview of the process:

1. Initial level: doctors will review your son's medical records once he applies for SSI. They will most likely deny your son's claim unless your son's symptoms are extremely severe and it is well documented in his medical records.

2. Reconsideration level: if the initial determination was a denial, you can appeal it. Here, other doctors will review your sons medical records. They will most likely deny again. Depending on your state of residence, you may skip this level.

3. Hearing level: an administrative law judge (ALJ) will review your son's case. You (and maybe your son) will meet with the ALJ and give testimony to support your case. His/her decision is indepent of the prior determinations.

4. Appeals Council: if the ALJ's decision was unfavorable, you can have the AC review your son's case. The AC will decide whether the ALJ did what s/he was supposed to do. If they decide the ALJ made a mistake, they will remand the case back to the ALJ for another hearing. Note that this does not guarentee a favorable result.

5. Court level: If the AC found that the ALJ's decision was correct, you can request the district court to review your case.

Some tips:
- Make sure you do everything SSA asks of you -- complete all the forms, go to all the interviews, give detailed explanations. Also review pertinent impairments here: http://mwww.ba.ssa.gov/disability/professionals/bluebook/.... It tells you what you need to show. Even if you have no evidence of those things, try to show as much of it as you can.
- Make sure your son's doctor documents every pertinent finding. Sometimes, doctors can say that your son has X condition, but do not actually put that in the treatment notes. If the doctor doesn't, there is no way for SSA to know for sure that the doctor actually said that.
- Do everything your son's doctor asks you to do. If he tells your son to do occupational therapy, do it.
- Try not to miss appointments with your doctor or other health professional. This shows in the medical records and SSA will use that against you to say your son's condition is not so bad if your willing to let him miss appointments.

A comment on one of the answers below -- you don't need to have paid into the system to get SSI. For children, it's solely based on whether SSA considers them "disabled" or not.

Hope this was helpful. Good luck!

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answers from Oklahoma City on

I don't think it's very easy to get. I would think it would be just as hard as for an adult. They will be on it for the rest of their lives. That's what a disability means, they have a permanent disability that will prohibit them from being able to do several of their life skills areas. It has to be significant enough to qualify them.

If the doc is pretty sure this is a done deal then perhaps the doc can help you through this problem with a diagnosis.

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answers from San Francisco on

I work with a SS advocate and based on what she's told me, Elliebird is right on. The whole process can take a year or more. Initial applications for those as young as your son are routinely denied. Don't be discouraged - it is ROUTINE. Proceed on to the next step.

You could find a social security advocate in your area to help you with the application and to make sure that the Administration gets all of the pertinent records. An advocate can really help get the case granted earlier than if you didn't have one because the advocate will MAKE SURE that the medical records are requested, received and in the Administration's file. That is why a lot of cases linger - the records are not received and it's really not anyone's job to follow-up to make sure they get them prior to a hearing. A lot of times they don't realize the records are not there until just before the hearing which causes a continuance which could be as long as 6 mos to a year away!

The advocate does not charge anything. The advocate receives a percentage of your first award which will be computed back to the initial date of filing for the benefits so it is usually a pretty significant amount.

Good luck to you and yours!

1 mom found this helpful


answers from San Antonio on

You can try...but my SIL had to get a second job at night (working from when the kids went to bed until two or three am then getting up with them at six or seven am) to pay for her daughter's extra therapy. How she survived six years on three to four hours of sleep a night...I don't know...but she did it to pay for the extra OT and PT and later equine therapy. I am sure if my niece didn't qualify then you are going to have a hard time qualifying.

Start looking for ways to make extra money for those therapies because they are very expensive as you know and you can never have too much. But don't expect the state/government to cover them...

I can say the therapy is worth it...my niece now appears to be a pretty typical kid that seems on the quirky side...but she has come a long long way!!

Good luck!!

1 mom found this helpful


answers from Appleton on

If your doctor fills out his (her) side of the paperwork correctly it should go through the first time.
My granddaughter is on SSI because of autisim she also gets medical assistance to cover her therapy.



answers from Portland on

SSI is welfare not a disability payment. You have to have personally paid into the system to be eligible for Social Security Disability. That being said my sister is on SSI, she is an adult and had to go through a series of tests with the Social Security Department to be found disabled enough to not be able to work and earn a living, she qualifies for SSI and Medicaid (both welfare). I am sure any SSI your son will go to you guys to help with his costs and make him eligible for Medicaid as well. I think the process is easier because the program is welfare and comes out of a different pot of money.

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