Family and Caregiver Schizophrenia Discussion Forum

SSDI Re-evaluation

I searched as found a story similar to ours, but only the beginning…not the outcome. So my question is what happens at a SSDI re-evaluation?

I knew this day would come sooner or later, but seriously was hoping later. Brief recap: Signs at 17, diagnosis 22, SSDI approved maybe 5 years ago (was married at time and I was not very involved with day to day) some ups and downs but major psychosis last March/April. After release from involuntary hospitalization refused treatment and meds.

Today lives on own and is functioning in that is fairly able to clean up home and person. Does not handle finances on own, but is not totally unaware of money. Eats well, but can be funny about where food came from. Last attempt at work 18 months ago ended up with him sitting in truck at work for hours.

So, yes he functions as long as environment is very low stress and he has escape plans from social situations.

He has agreed to go to appointment, but should I worry that he is not disabled enough???

TIA for any ideas.

Still waiting to hear on my son’s re-evalution. What I have learned in the meantime is that the vast majority of those re-evalutated do remain with a disabled status. Not a lot of comfort there, but its something.

You probably saw this in the paperwork, but for those who haven’t seen the paperwork, if they decide yours isn’t disabled, you can appeal that decision. You have to declare right away that you intend to appeal and the benefits will stay in place during the appeal process.

We really can’t do anything until the re-evaluation is over. Its really to your advantage that he had that hospitalization a year ago - I was surprised that they are only interested in the last 12 months.

I hope people who know more will respond to this thread.

Me too! Informed is best defense.
Thanks for the reply. I was under the impression for some reason the decision would come at the re evaluation appointment. At least I can relax a little bit about that. And yes would appeal (or better yet send him to live with whoever decides he can work).

My mistake today is letting him read the paperwork. Of course he found the sentence that says he can refuse to go and they will make the re determination based on what they already have. He immediately states he is not going :frowning: I made it clear this really is not an option as far as his mother is concerned. He said ok but he is not taking any tests because they want a yes or no answer and there really isn’t any yes or nos. Everything should be an essay or a book. Nor can they take any blood from him (DNA) to use for nefarious purposes. Hopefully this is how he presents at the appointment.

He is bright and talented. He would work if he could. But he can’t. He has had at least two work trials since the initial determination and he ends up a reclusive hot mess.

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In the UK all disabled (except elderly) are being reassessed, government says it’s improving the system, we all know it’s to save money, austerity by taking money from the vulnerable, it’s disgusting.

My sz daughter was reassessed, lost her benefits, the stress caused relapse and she ended up in hospital at a cost of thousands a day to our NHS, what a joke. Daughter suffers, we suffer, the government feel good, they shaved a fraction off their benefits budget.

I have a neighbour with MS, can’t walk, has to be carried everywhere, she lost her benefits. The UK is totally screwed up, and to think our forefathers fought wars and gave their lives for it to be this good.

I know full well NO government is even capable of improving the system because of greed power and egotism!!
I get they want to make sure people are not abusing the system, but it always strikes me as backwards. The patients are “reviewed” but the medical/drug professionals make billions off sick people who pretty much are living in poverty. Truly sick people do not want to be disabled. Life pretty much sucks when you are chronically ill. The fact of the matter is there are a lot of truly sick people and far fewer scammers.
I wouldn’t mind the review if I trusted the system. But as you so sadly pointed out, they save a few bucks at a great expense to humankind.
Did they reverse the decision and is your daughter stable?

We fought, on her behalf, with the relevant government officials, they very graciously decided they would award her the benefit again, but reduced. It’s a points based system and they simply refused to give her as many points as she had before the review. It’s all so wrong, the default should be that a person with sz needs to be looked after financially, no question. If they get their life together and manage to work, then reduce the benefit, but not before.

Before her relapse, she had 15 good years, working part-time, studying, she was really building a good life for herself. Then a sequence of high stress situations culminating in her benefit withdrawal caused her to relapse. She was in hospital for 4 months last year. She came out because they didn’t want her to become institutionalized but she quickly went downhill and is back in hospital again. The damage has been done, a little more of her mind has been scarred, and perhaps irretrievably. At the moment we can’t see that she’ll ever be stable again.


Did by any chance they tell you how long it takes? I went but was not in the room. My son reported back it was a series of questions. It took about 45 minutes. He said the testor was a “kindly character” and he wouldn’t mind talking with him again…“but not too often, because you know the paranoia will start”. Boy do I hope this glimmer of his thought process is enough. In the meantime he brings up what he might have to do (disappear into the woods) if the decision is to terminate benefits. Of all the crap we go through to get help to have it come down to a list of questions and 45 minutes face to face could take it all away, just irks me.

They haven’t given me any idea how long it will take to process - they don’t even want mine to go in, but now he may have to go see someone because he has only seen the one doctor the past 12 months and that doctor has not responded to Social Security’s request for information. They just called me today and told me.

My big concern is at 45 minutes he can hold it together pretty well. But as his mom, I see the facial expressions and body movements that tell me no matter how “normal” he seems to be there is something else percolating in his brain. Perhaps we should have a program where the person making the decision has to live with the patient for a week. That would give them a complete picture no medical report could!


The original place that evaluated my son after his first incident with his neighbor years ago made them stay for hours for different parts of the process. Made sense to me because as you say, they can suppress quite well for a little while.

No response from the doctor. I left a voicemail, an email and a fax. Argh!

I need to know if the doctor will fill out the evaluation or if we need to have mine see one of their doctors.

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Doctor called and all is well. The re-evaluation paperwork had never arrived at the doctor’s office. The doctor okayed SS faxing the re-evaluation form.

My friend the former FtF teacher said this is a frequently reported situation. My son’s doctor said SS still sends mail to her old address even when people provide the current address.

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JUST AN UPDATE: His disability is “continuing”. They will re-evaluate him “from time to time.”
I informed him on this good news and he said …is it really?
Ok, so maybe not for him, but is a relief for the worn out mom.
Until whenever next time is anyway!

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So glad you heard already! What a relief that is for you:) That was fast after his meeting wasn’t it? Still waiting on my son’s. This week I plan to call the social security person that called me to see if she has received the doctor’s input yet.

Yes about 3 weeks.
From the time of the releases of medical records to the notice of an independent medical exam it was just about a month. So I am guessing when records arrive, the review is quick. Hopefully you get good news soon too.

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I was going to follow up call her on Monday. She left me a voicemail before I had a chance. She said she would fax the doctor.

I received the letter that my son’s ssdi and ssi are continuing as well. Time to time on the ssdi, in 3 years on the ssi.

Yes, once SS got the records from the doctor it was fast.

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:tada:Yay!!! Until next time!!!
Sorry for the delay. Been distracted lately with summer finally arriving. Kinda did wish spring was longer than a few weeks, a least the long cold winter is gone.

I am working on his 3 year SNAP re-evalution now - hopefully the final step is a phone interview this morning. He will really be hurting if he loses his grocery money.

Sigh…forgot about that one. Silly me. Work so hard to get help and then the relief when you get it only to find we have to keep “proving” help is needed. I hope the phone interview goes well.

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This is my daughter’s fear & mine if she works part time they will take what little she has away…and if the job causes stress she could relapse. It sucks for those who where sick at 18 and diagnosed at 23. They have never put enough credits in to get full disability. So it’s a game of roll the dice. All she gets is 500.00 a month. She would get 700.00 if she lived alone but she can’t live alone.