Family and Caregiver Schizophrenia Discussion Forum

SSI and Medicaid Assistance Questions

Continuing the discussion from Budget management for SSI/SSDI or other fixed income:

I am encouraged to see that so many of you have been able to qualify your sz kids for SSI benefits. I have been concerned that qualifying and being approved for SSI benefits may be difficult.

Can some of you discuss the steps you took and any challenges you encountered?
My son has not worked for 2 years now - part of that time he was attending grad school.

He is very hesitant to apply for benefits and is not ready to admit that he be may not be able to work in his field anymore.
When do you know it is time to re visit the issue of SSI?

We will probably pay for his insurance for the next year - I guess it needs to be his choice. Of course he has no money left so the premiums will have to be paid by us.

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I would absolutely re-visit the SSI, only because it is a big help and can give an unemployed person the feeling that at least they have some money to contribute to their care.

Some people choose to do it on their own and can accomplish it with ease. Others meet brick wall after brick wall.

I can speak from my own experiences. I went with a Social Security disability attorney that came with a glowing reputation for expediency and I was very pleased with his work. Having him navigate the forms and the court was a great stress off of me.

What they need (initially) is a work history including the last day worked, W-2’s are helpful if still available and they require a detailed history of hospitalizations, medications and a list of doctors seen etc…and when filling out the form I was advised by a SS employee (who was also a personal friend of mine but not employed local to me) that the people that make the determinations look for key words throughout the application like chronic, persistent, and needing assistance and or redirection etc…over and over…not sure if that helped the speed of processing or not but with the help of the attorney I had my son’s first check within 120 days, sooner I think.

The attorney charges nothing if he does not win the case. When he wins the case he will take 25% of whatever your son’s retro pay would be meaning pay equivalent to an SSI check per month going all the way back possibly for the entire 2 years your son has been out of work (unless there is a cap on that–these days I don’t know, the cap was 2 years when I applied for my son.) The attorney gets nothing else beyond that. Your son continues to get a monthly check from then on.

In addition your son is eligible for Medicaid and then also after I think a year on disability he gets Medicare also and the medical coverage covers pretty much everything. He can also in some cases get an EBT or SNAP card to help out with groceries, that is through job and family services though.

If handling money is a problem for your son you can be named as a representative payee which means his expenditures would have to go through you. I forget the steps for that or if that only comes with guardianship but an SS attorney could explain it all at no charge.

I did all of this for my son including getting guardianship of him and being rep payee and everything when he was 21 and now he is 34. He is doing well living with me and I still assist him in things but I keep things the way they are still, because it works for us well now and if (god forbid) his meds stopped working or he suddenly got sicker I would not want to start all over again in order to help him. On the other hand if he was well enough to work, even part time they have rules about that and a recipient can work a certain amount of hours, etc…without losing benefits. This helps if a person like our sons want to give work a trial period to see if they can handle it after they have regained their stability. Some can and some can’t. I hope my story helps a little, best of luck.

PS>> To answer the question of when is it time? (I just realized I didn’t actually answer that) I guess when you or your son needs the income or the extra insurance which he would not have any premiums…

As for me, I did not have a very high paying job at the time, lived pretty much on a shoestring budget and I was a single mother on top of that so, it was imperative that there be some additional income to provide for my sons needs, we couldn’t have made it together without him having some kind of income and insurance.

I think it should be more up to the caretaker whether disability is applied for more than the person being cared for only because of the expenses belong to the caretaker and parents do tend to absorb everything no matter the cost but if anything (god forbid) happened to the parents/caretakers it would be very hard for our sons or daughters to get set up on everything by themselves, not everyone will agree with me on that and that’s okay. Everyone is different in their approach and perspective. Best wishes.


Thank you for your explanation. I have to blow through the barriers and get my daughter to get SSI. I haven’t found an attorney who wants to take her case yet, the last one I contacted said she wouldn’t do it unless my daughter came to see her for a consultation. Hahahha. Yeah, fat chance of that… I would love it if she had some income. It’s been three years of my losing $800 a month or more as I can’t rent out the room she lives in (it used to make $600 a month before she had to live with me.) I have been urged to apply over and over on this site… oh gosh, why don’t I figure out a way???

The key words certainly apply to her, I guess I will just keep calling attorneys, or just apply in her name and hope she will see the SSA people when it is time…

@Ann1907 - I did get health insurance for my daughter approved through the site by putting her on my application as a dependent, and on my IRS return. It is great for her to have insurance.

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I appreciate your information. Our son has paranoid schizophrenia, and he is a very intelligent person and loves to argue.
Here is my challenge- he feels that we are trying to force him to file bc we don’t want to lose or spend money. Additionally he does not want his sz to be part of a public or government knowledge. One of his fears concerns the stereotypes about mental illness and sz and the shootings that continue across our country. He is concerned that he could be kept from a job or arrested in connection to a shooting- paranoia.

In our last conversation today, I explained all the benefits of Medicare insurance and the financial benefits to him. Discussed possible income so that he could purchase equipment etc.

We don’t currently have power of attorney or guardianship over him. We cannot force him even though I believe it would be a wonderful choice for him.


If he paid into social security and was officially diagnosed prior to the age of 18, he may be able to collect a bigger check by applying for SSI on his own work record.

Most definitely apply. Be sure to keep copies because they usually turn you down the first time. Copies help when you appeal. You can see what you may have missed and what you put down the first time. My son is on my insurance and is on medicare and medicaid. Due to his disability he can stay on my insurance past the age of 25. I have BC/BS. Your sons psychiatrist can help you as far as deciding if he may qualify.

You could try it yourself, without an attorney . Go to the website, and follow the instructions carefully. If he is denied benefits, don’t despair. A lot of people are turned down the first time, but win benefits on appeal.

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You could tell your paranoid sz son that by his logic, that the Government probably already knows of his diagnosis.:smile: I used such “logic”when dealing w my paranoid sz husband.

Getting him on SS disability payments was hugely beneficial for my husband. Having his own income gave him a little more confidence, not being dependent on others for money. He works part-time now, when he can, and still gets benefits. It’s an important safety net.


Thank you Cathrine, this is very helpful! <3

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My son, age 53, worked until July 2017 and I found out he wasn’t working in Dec 2017 (he was living on his own). He could no longer function on the job or on his own and I brought him to live with me. Got him on medicaid so he could afford a therapist. He was desperate for help and really wanted a therapist and meds. He also was unable to handle any of it himself so I learned how to do everything. (Thank god for the internet) After he had a sz diagnosis and was on meds for a few months I applied for ssdi online.That was in August, 2018. The app asks for the medical professionals he was seeing and meds he was on. They then get those records from them. Apparently the therapist’s and nurse practitioner’s records did the trick, because he was approved in 3 months and got his “backpay” check.

I had read about the process online quite a lot and was prepared for it to take at least a year to get approved. I was stunned it went so fast. I did find out it is easier to get older people approved who have worked their whole life, so that was likely a factor.


Oh thank you for posting this. It is reminding me that I must get my daughter’s application in while she is on meds (as she refused to let me apply for her before). She was 32 an onset, so maybe it will go fast for her too. She recently agreed to apply.

Because of our daughter and her concerns when applying for jobs, we reinforced to her that her medical information is private due to HIPAA. She had to have an extensive background check and passed.

I think I can state some facts…please correct me if wrong. SSI is needs-based. The person cannot have more than $2,000 in assets ($3,000 if married) excluding a car and there are a few other excludable assets. SSI (comes automatically with Medicaid) if the person is deemed to be disabled and does not have enough work credits of his/her own. The person is also potentially eligible for SSDI/(Medicare eligible after 2 years, I think from date of disability) if disabled (different from “diagnosed”) prior to age 22 AND the person has enough work credits. OR, if the person does not have enough work credits but was disabled prior to age 22 AND has a parent who is receiving SS benefits, the person can qualify for SSDI based on the parents work record and can become covered by Medicare (again, I think the Medicare coverage begins 2 years from the date determined to be disabled, or possibly from the time the application was submitted). This is all explained pretty well on the website.

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Everything you said is also my understanding - including that I’m a little unsure when the 2 year count for Medicare starts. Whenever I find something about it onlone it is worded confusingly. I think it’s 2 yrs from onset. If the ssdi check is low enough they can get medicaid also (in my state anyway), which pays deductibles and copays. My son will qualify for that. I found it helpful to watch Youtube videos of ssdi attorneys explaining various aspects of ssdi. I watched a bunch of those.


I believe the 2 year Medicare waiting period starts from the date SS determined they were disabled.

In my state you have to apply for QMB - the benefit level that pays for your premiums, copays and deductibles.

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My son would qualify for QMB is it wasn’t for the backpay he recently received. There is a limit to the amount of assets for that. Maybe I should get him to spend down his money so his premium would be paid. Medicaid will pay copay and deductibles only. His 2 years is up this October.

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Yes, the state’s vary in their QMB requirements.

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My son is on ssi, I filed for him before age 22. He is on medicaid and will never recieve medicare, that is for ssdi only. It is confusing, even the ss phone consultants will tell me that he should get medicare. He’s been on it since he was 22, and he’s 28 now. No Medicare as of yet.
For all of the questions about filing yourself vs Attorney. I filed it myself, the one thing that helped with the approval on first try, was lots of Hospitalizations, Doctor visits, w/diagnosis, and I sent a recommendation letter for disability from his psychiatrist with his application.
My son didn’t want disability either, as he didn’t want that on his record. I understand that now. He didn’t want guardianship either. But if they can’t work, they need it. If they can’t file the application, then it is needed. My son called the ssi office early in his application process and said he didn’t want it. I called later, and learned that he couldn’t tell them his diagnosis, and I explained to the lady that he didn’t have insight into his illness, and several other facts she had previously gathered from him. Good luck to you all. There are a lot of things that are hurtful to them, so I didn’t share everything I put in his application, Just had him sign it. Love them, Love yourselves and God bless.

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earned minimum work duration for Alabama, clearly sick, denied, excellent attorney, 2.5 years later, big pay day, lump sum payout, $900 month combined for SSD and SSI, made sure when I secured her apartment, it was in her name, the judge was very generous here as the 900 set the rate for 2.5 years back pay, SSI cut down quickly after while living at home, when secured apartment SSI went back quick, currently at $800 month… all doc visits $3 each all meds $1 each … cant beat that… all this as an adult, now rules and process for children are different…

Hi, @Robin_S. Just to verify, was your son’s date of disability determined by SS to be before age 22? If yes, and he doesn’t have enough work credits of his own, he can get Medicare only if he has a parent already receiving Medicare benefits. Then there is a 2-year waiting period (but as per above posts), I’m not sure when the waiting period starts). Does this help you at all?

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