Family and Caregiver Schizophrenia Discussion Forum

SSI Question - Applying/Denial


I wonder if the amount they receive would be higher if based on their parents work history.


I know that when you are approved for SSDI, they sign you up for Medicare. However, there’s an extensive waiting period until Medicare kicks in. I think it’s a year’s wait, so you need health insurance in the meantime

Medicaid is an entirely different animal. You qualify for that thru your state. In many states, you have to be very low income to qualify.

You can have both Medicareand Medicaid; you’d be a “dual beneficiary.”

Hope this helps.


I’m pretty sure your child’s “date of disability” is based on the actual date a doctor has given the diagnosis, and put it in writing on some sort of document, whether it be counseling notes, a hospital record or whatnot. It’s not based on an event or an episode.

I’d get the disability date corrected with the social security department, just to avoid confusion later on. You probs just need something in writing from the doc who gave the diagnosis.

We’re in the same boat. Our son’s date of disability is before age 22. He gets SSI now, but I think he’ll be able to tap into our Social Security down the road, when we retire. He’ll never get SSDI on his own unless he is able to work a significant amount, and I’m not feeling much hope that’ll happen.

Our son’s Medicaid started when his SSI started. Medicaid is his secondary insurance that picks up the costs that his primary insurance didn’t cover. Fortunately, our son’s $3000 monthly injections cost nothing, under Medicaid.


In south Texas I had to apply for Medicaid for my son - it wasn’t a big process, I just had to say he wanted it.

My son’s date of onset was the date I gave on his ssdi application. It was the date he had an episode at work and was fired for his actions during the episode.


Hi Hope. That’s interesting and really helpful to know that a parent can declare the date of disability on those applications. I probably would’ve needed to do that if things didn’t go the way they did.


At FtF they told us that the date SS sets can seem to be rather arbitrary. Since the application had a date for onset, I filled it In.

That was the point when his psychosis became too much for him to suppress enough to work.


We are currently trying to get SSI for our son. We were denied and filed the appeal. Recently we are starting to work with a lawyer. The lawyer wants our psychiatrist to fill out a Mental Medical Source Statement. Has anyone had experience with having their doctor fill out this form? We set up an appointment to meet with our doctor so we can give him our input into why he can’t work. But we are not sure if he then completes it and sends it to the lawyer or we get it back and send it in. I am just not sure if he will be on board with our son getting disability or not.


Most likely you don’t convey anything from the doctor yourself. My son’s doctor sent the paperwork directly to Social Security.

I believe it is key that your doctor must find your son to be disabled. Often they do need information from home to get the complete picture. Some of our family members can appear quite well to people who don’t have much experience with scz. Lots of documentation of issues with police and a poor job history are helpful.


I believe that I may have overlooked getting documentation from police. Although they have been to our home many times, it never occurred to me to ask about documentation. I have got to start getting paperwork together necessary to apply for SSI for my daughter. She still isn’t onboard, but at least I should start gathering the needed items.


@oldladyblue, for most of the documentation,I just wrote down the dates and why they had been called. I wrote about his landlord issues (when his landlord had threatened to evict him if I didn’t get the gun away from him) and included the landlord’s name and phone number. Same for all the times he was fired, I listed them and provided the phone numbers.


Thank you. I have been keeping a journal, but will make sure it includes the things you mention, I can probably go back and fill things in from memory.


But how did you initially apply, im confused, do I go to a social security office, do I need to bring things.

This is for my son 20, I really can’t see him being able to work, and I worry about his future.

  1. Go to the Social Security Website and print off the forms

  2. Fill them in - make sure you know what doctors he saw & when, dates of any hospitalizations, etc.

  3. On the form, there will be lots of questions about how he spends his day & what he can do. Stress that his condition is permanent and the symptoms are “debilitating & pervasive”. Apparently, those are buzz words.

For example, it will ask something like can you prepare your own meals - you fill it in as if it was him. There’s a place somewhere on the form or somewhere in the process where you can explain that you filled it in for him because he’s not capable.

When I answered the question about meals, I wrote something like this:

My son is physically able to prepare simple, prepared food some days, but not all. This has been a consistent, pervasive and debilitating symptom of his illness since he first became ill in _____.

Some days, he has to be reminded to eat. Other days when the meds are working, he may eat non-stop. When he’s doing his best, he will make a sandwich or a bowl of cereal for himself. If he makes something in the microwave, he forgets it while it’s heating up about 50% of the time and the food is not eaten. If he heats something in the oven, he rarely remembers to turn it off.

He could easily become a danger to himself without supervision when preparing meals.

  1. Go to the social security office and turn in the forms. They will contact the doctors and hospitals to get your son’s medical records.

  2. They may mail you more forms or your state’s agency may mail you forms as well. Fill everything out & get it back in time. Be prepared to answer questions about your son’s finances and your families expenses if he lives with you.

  3. At some point, you’ll get a letter that tells you whether or not they approved him for SSI.

  4. Once he’s approved, you’ll need to go with him to the social security office so they can finalize the paperwork. If you’re going to help him with his expenses, they may ask you to be his designated payee.

  5. You’ll get some backpay and you’ll get a letter saying you’re the designated payee. You take the letter to the bank to open a special account for his checks.

I think that’s about all. It went surprisingly fast for us - I think about 2 months. But, we’d already been through the process once for the state to give him Medicaid so he could participate in a special program. I’m not sure why they didn’t do it all at once, but we had to make a second pass at it.

The paperwork is intimidating - just do your best. In the end, I think I also wrote up a page about his symptoms - how he would hide in the car so people couldn’t see him when we drove down the road, how sometimes he could go in a store but would hear people saying things about him and he couldn’t go to the register, how he’d hear the TV talking to him, etc. Everything that could happen in a typical day when he was sick.

The SSA people were very nice & helpful through the whole process.


Has your son been diagnosed with schizophrenia?


Looks like you got some good information in response to your question. If you are not your son’s guardian, you will need to get his permission to apply on his behalf. I think there is a form for that too!


Thinking about it, I think there was a page in there he had to sign to say that I was his representative or something like that. He was OK with it and never even asked to see what I wrote.

I’m not his guardian, but I handled all the paperwork for him.


FYI for anyone out there that this also applies to…

I recently got a letter from SS saying they no longer will require annual Rep Payee accounting reports for SSI, if your adult child lives with you and you’re his/her biological parent.

This reg change takes a burden off SS as well as us.


Oh, this might work for me for my daughter. She will not agree to apply, but if I can do it for her and just ask her to sign, perhaps she won’t ask what it is that she is signing for. Thank you for the instructions on how to fill out the paperwork. I couldn’t find a place to print the forms out on the Social Security website, just a place to start an online application. Is there some reason why it is better on paper and not as an online application?


Here is a link to the SSA’s description of requirement for disability. It is not the diagnosis date.

When the claim I submitted for son (I have guardianship) was submitted by a lawyer (in retrospect I might have tried to do this myself but I didn’t want to waste time to get this going and I don’t pay anything to the lawyer upfront…the lawyer gets a cut of the awarded back-pay since the application date), the lawyer used a date of disability when our son had a major event and because he had held a part-time job just prior to that for all of 5 weeks and had been in an internship program with some success. However, before our claim was finalized, I later corrected that application for the record, because the illness actually caused major disruptions in his life prior to that major event. However, our son was just approved for SSI and their letter says “You were found disabled on …” which is the date of disability originally submitted by the lawyer. But with MY later correction of the disability date on our original application which happens to be before age 22, I am hopeful this will allow for consideration of eventual SSDI benefits based on one of his parents’ work records. In any event, his paid SSI benefits start with a date just after we submitted the SSI application. They do not retro back to his “date of disability”, no matter what that date is. There is some possibility of a few (3?) months in certain situations prior to application date if you file an appeal for that.