Family and Caregiver Schizophrenia Discussion Forum

Applying for SSI and lawyer's assistance

I have a 39 y.o. Son who has schizoaffective disorder. Although he is intelligent and has some work history he is not doing very well now. He is not an easy roomate and I got his latuda meds at charity cost. Meds help him quite a bit although I am not sure about his perfect compliance.
He has issues with pot/alcohol which makes it all harder to deal with.
It’s one thing to have a problem but I think one should try their best to grow and cope. Maybe I expect too much.

I got him feed stamps for 3 months and then he lost his wallet w the card in it.
It seems like having a toddler again with the surveillance it requires.

Peace to all !


Terry, I have set up a little tray for my son to keep his wallet in at night. I hold onto to drivers license, and all medical cards He doesn’t seem to mind at all however, I do realize I’m not going to be around forever.

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My son hasn’t lost his wallet for a couple of years, it used to happen frequently. He still loses his emergency credit card, I check online daily for charges that don’t belong to him. That’s usually how I learn he has lost it again.

My son’s visual perception can be a problem. We watch him as closely as we can, yes, like a large toddler who can do so much more than a toddler. He usually contacts us when there is a problem. He was trying to change a tire and couldn’t get the bolts to turn. He was trying to turn the decorative bolts on the wheel covers.

He is very intelligent, a college graduate, sometimes he can access his brain, sometimes he can’t.


This is such a difficult and confusing illness. It’s hard knowing what to do for them; how hard to push? Should we push? When? I’ve read so much on the subject of schizophrenia and I still feel confused and I’m timid about pushing my son. He suffers from paranoid schizophrenia and severe anxiety. He lives with his dad. He also has pot and alcohol issues so it’s a dual diagnosis. I’m wondering how long has your son been diagnosed? I’m wondering because if it’s only been a couple years, even five years, then he’s still kinda like in a fog? This is just what I think I understand. First episode of psychosis, hopefully a correct diagnosis, stabilized on AP medication, home possibly or hopefully with family. Then a period of time (in our case, very short, I think about four to six months) where you feel like things might be alright after all. Then one day you realize your son hasn’t done anything productive or working towards “recovery” at all! You realize he has absolutely no motivation and this is all part of the illness itself, called negative symptoms. The negative symptoms are difficult because there aren’t any effective medications treatments. There are all sorts of programs (or supposedly there are) to help with the negative symptoms, but at this point, good luck getting him to participate! Then a couple years later, your son is still sitting there or just kinda knocking around the house doing nothing in particular, smoking cigs and pot, and this is schizophrenia! Sorry this is so long lol! This is the picture of my son who is 29 and was diagnosed paranoid schizophrenia when he was 25. He may never do anything. Does this sound familiar to your son?


I’m just jumping in here, but you have described my 26 year old son. Nothing seems to work on the negative symptoms. I have seen so many improvements on what he was when in psychosis for so long…but not on his lack of motivation, or his pot smoking. I lose sleep at times thinking that he may spend the rest of his life like this. A life that I have no doubt will be cut short due to the state of his lungs. Weirdly though, its a life that he seems “ok” with. Hang in there, you aren’t alone!

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I don’t envision my son changing much either. And I also fret and worry about his physical health. He was a kid who NEVER got sick! Colds, the flu, stomach bugs, ear aches?? Nope. Never ever sick! Now has the worst illness imaginable! So ironic. So heartbreaking.

Mine was different in that he kept trying to work. As he struggled and was fired or quit, the next job would be less demanding and more menial. In the early years he tried to work around his psychosis, it became harder and harder as his positive symptoms intensified.

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I just got the 12 or so page questionaire that asks all kinds of questions like do you finish things, can you cook your own meals, can you lift a certain weight, etc.

They sent me a copy & him a copy. Do they really want us to send 2 copies back?

Kind of a how he sees the situation vs. how I see it?


Yes they want to hear the perspective from both of you. We were told in our NAMI FtF class that we should describe their worst days, not their best days as a basis for our responses. They said that as parents we tended to write about what they could do as opposed to what they couldn’t do.

Some of them I had to answer on my son’s form as he wouldn’t respond to some of his questions. On those questions I always answered as I know he would have, not my answer.

so, if they say can he clean up his room, instead of saying
"on his good days, he can clean some of his room with my help and instructions"

I should say -
“When left to keep his room clean all by himself, Blake can’t do it. Due to his chronic, persistent and debilitating mental illness prevents him from being able to focus on a task for more than a few seconds and he has a very difficult time following directions.”

I should just say - look dude, if he’s off his meds, his room looks like something straight out of hoarders complete with fruit flies & flower moths. The reason his room is passable is that he’ll let me in to do a quick clean most days when he’s on his meds.

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Exactly right, don’t tell them about how well he can do on a rare good day.I think it will be the doctor they need to say “chronic, persistent and debilitating”

I would go with “I have to clean Blake’s room, he will not. Without me cleaning it looks like a hoarder lives there, with fruit flies and flower moths due to the decomposing food”

Paint the picture.

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This approach is the best way to answer any of the questions, always include the words “chronic, persistent and debilitating”
(that advice was given to me from a friend who works at the Social Security office-she said that the applications are approved on a “point system” and those words get the highest points toward approval) [quote=“slw, post:10, topic:3841”]
“When left to keep his room clean all by himself, Blake can’t do it. Due to his chronic, persistent and debilitating mental illness prevents him from being able to focus on a task for more than a few seconds and he has a very difficult time following directions.”

I did his application without any assistance from a lawyer and Jeb was granted ssdi and ssi on the first attempt.

I did follow the advice of our FtF leaders. I painted the picture of his life on his bad days. The good days are so rare.

Then one day he brings his dishes downstairs and it totally catches you by surprise. I’m ending today on a positive note and I just said a prayer for all of us here.

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For the last couple of years I have been going to my son’s house after work and cooking a simple dinner for him. If he finished eating before I had cleaned up the kitchen, I would put his dirty dishes into the dishwasher. If he was still eating, or if he didn’t feel like eating right away, when I arrive the next day, his dishes are still on the table.

It may seem to some that I have been very slow to address this, but I think you all understand that some things just aren’t important in the grand scheme.

But my son has been well enough and stable enough for long enough that I have started asking him to put his dishes into the dishwasher when he is done. No confrontation, no big deal if he forgets, but I think it might become a habit if I stick with it. Such a small thing, but in our lives, significant!

And, I am fortunate that he doesn’t bring food anywhere in his house other than the kitchen and dining room!

He also has developed the habit of putting his dirty clothes into a laundry basket in his room.


The rules just don’t apply to them, do they? As Mom’s, we know best about what they are capable of doing or not doing, and when is the right time to start nudging them. From the outside looking in, I think we look like we are allowing them to walk all over us but…the people who think that don’t realize that what they are doing is not a behavior…it’s a symptom of their illness, damage to their brains and the meds that they take. You are doing what’s right for your son. As we all are.


I know exactly what you mean by “Such a small thing, but in our lives, significant!” So true! One of the many small things my son does that tends to irk me and I wish he would “grow” out of or whatever is he still sleeps in his street clothes, the clothes he has worn all day, no matter how much he has sweat or what kinds of activities he did that day, if it is not his chosen shower day which is every 3rd (or 4th) day no matter what, then he is sleeping in those very same clothes. Even when his sheets are changed or whatever, no matter.

I bought him pajamas, robes, you name it, told him he could close his door and sleep in his boxers but he will not hear of it and basically does anything to change the subject. This is still an improvement from the very beginning when he was hearing voices he would sleep in street clothes and boots and a coat and a hat no matter the season, and sometimes I would find him sleeping in the closet like that. So…small significant improvements, one can never lose sight of those.

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