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SSI questions- JAWM


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We are finally at the point where DS is willing to look into applying to SSI.   He says he cannot work with people, he can't read what they want, and when he is on a deadline it causes so much anxiety, he shuts down.

He has tried therapy, Voc Rehab, schooling,  and medication, nothing helps and he isn't willing to go on meds again.   It has been years and years of this.

Even Voc Rehab was a bust.

Anyway, anyone been down this road and what is the best way to go about it?

Do we need an attorney?   Do we need to go back to the therapist and get more of a diagnosis than Autism/Aspergers?

And please, this is a JAWM post, I am tired of people saying, "Oh, well,. you just need to (insert your parenting advice) and that will be that."   It doesn't work with him.   

Thanks,

Dawn

 

 

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It is hard to get SSI, especially when you are young, so the more diagnoses he has to support his claims, the better. My husband has SSI for his IIH and I am currently going though the process of getting SSI for EDS, PTSD, chronic depression/anxiety and possible Apserger's if I can get a psyc who can make the diagnosis. It took 2.5 years to win dh's case and we are about at the 2.5 year mark on my case. Most cases take 2 - 3 years to jump all the hoops and navigate their way through the system.

Yes, I would get an attorney that specializes in SSI /disability cases. Interview a few attorneys before signing with one. You usually hire a lawyer after the first denial of your case. At least that's how it is done where I am. Could be different elsewhere I suppose. Disability lawyers do not get paid unless they win the case for you and then it is taken out of the backpay. And it is capped at 20 or 30 percent of the backpay, I can't remember which it is off the top of my head. That's how all the disability lawyers around here work anyways.

Also document EVERYTHING. Document his medications, past and present, all of his therapy and doctor's appointments, get names and close approximate dates, addresses and phone numbers. Get medical and therapy records. Get records of the vocational training that was a bust. Get letters from people who have worked with him who can accurately describe what it is that keeps him from being a dependable, full-time worker. The more documentation you have to add to his case file, the better your chances of winning. If he doesn't already have one, he needs a PCP that is willing to help with getting him disability. That is one thing that really helped my dh's SSI case. My case has been more difficult because most of my issues have to do with mental health. Mental health issues is one of the hardest types of SSI cases to win.

 

Forgot to add  -  Dh was in his early 30s when we were going though his case and I am in my early 40s now. Both of us are considered "young" for SSI. Your son is in his 20s if I remember correctly? It's not impossible but it is harder the younger you are to win the case. Not trying to discourage you, just trying to warn you that it will be an uphill battle to prove he is unable to hold a job even if it is obvious to you and everyone around you. Document, document, document every little thing, even if it seems unrelated to the case. The more documentation you can produce, the more seriously they will take your case.

Edited by sweet2ndchance
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ugh, his primary care doc is very old school......I don't think he will think anything other than a severe physical disability will be worth of a recommendation for disability.

It has been a while since he has gone to a psychiatrist or psychologist because he has refused to go.

And the Voc Rehab folks were so rude I am not apt to go back.

I guess I am not sure if he should go back to his psychologist or start with a new doctor.

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I'm sorry you had rude and unhelpful people at DRS.  😞   That is really awful.  Your poor ds should not have to deal with more stressful situations.  DRS should be a haven for those with disabilities. Unfortunately, if he didn't actually have an eval done by them, work placement with a job coach where they say he was unable to work, you might not be able to say that DRS was a bust.

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He will need a form filled out by his doctor (PCP) for disability. Not necessarily a recommendation, just a form that the PCP fills out. Though a recommendation from the doctor, if they are willing to do so never hurts. It's not the be all, end all but a doctor that understands that not all disabilities are physical is definitely helpful. Best to get him to a new doctor, if you think the PCP he sees now will be a hassle. A doctor that he has a standing relationship with looks better on the application than one that he just started seeing. Per the lawyers I've spoken to anyways.

It doesn't matter really if it's been a while since he's been in therapy (though going to therapy regularly could help his case) he will still have to report everything from the date his disability started. Doctors and therapists seen, medications taken, hospitalizations, jobs held, how long they lasted and why he can no longer work in that line of work... It is a mountain of documentation and paperwork but the more you have to back yourself up, the better your chances are.

He also needs to tell disability why he refuses to go to therapy or continue vocational rehab. They are going to ask, he needs to tell them why and what the reasoning has to do with his disability and why he cannot continue those things due to his disability. He will have to undergo a disability psyc eval if he is claiming mental issues. It really wasn't a big deal after it was over but of course my PTSD and anxiety made it almost unbearable to go through at the time. I made sure to tell them all about how hard that was for me as well. 

You might not have to go to the voc rehab place, you might be able to just send the request for records in writing. Or a lawyer could request the records for you.

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4 hours ago, Lecka said:

My cousin has qualified for SSI recently.  I’m sorry I don’t know the details 😞

 

You don't know what he has or how many times he applied?

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He is involved with a mental health organization and I believe that they encouraged him to apply and helped a bit.  The mental health organization does job training and placement and he has stayed with the training part, they have never placed him in a job in the community.  
 

In his life he has had paid employment at a movie theater and at an after-school program.  
 

Edit: the way the program works, while you are in training you are actually helping to run the organization, so he helps with intake of new people and getting their information put in the computer system and things like that — it is going really well, but they aren’t recommending him for job placement with a community partner (which — those jobs usually turn into regular unsupported employment over time, sometimes in just 6 weeks).  

Edited by Lecka
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My impression is that my aunt and uncle hadn’t thought he would qualify and didn’t pursue it, and then it went a lot easier than they had expected.  I think bc of the mental health organization or his mental health doctor (whatever that title is).  
 

Someone from one of those places was surprised he wasn’t already receiving SSI and thought he would qualify.  

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Where we live — this mental health organization has opened many doors, while the Aspergers diagnosis for him has not done a thing actually helpful.  He did Vocational Rehab years ago and it was something where the person did not seem knowledgeable about Aspergers (this is what I heard) and so it was a dead end.

The mental health organization requires a referral from a mental health professional and a diagnosis but for example — depression counts as a diagnosis.  

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I think at the same time he qualified for a special health insurance that covered his medication.  
 

I think he had already qualified for a program for mental health appointments, but that medication was expensive, and then that was a big benefit.  
 

I am not sure about that, it’s my impression.  
 

Edit:  I mean, I think qualifying for SSI automatically qualified him for the special health insurance.  

Edited by Lecka
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36 minutes ago, Lecka said:

Edit:  I mean, I think qualifying for SSI automatically qualified him for the special health insurance.  

Qualifying for SSI, does qualify you for Medicaid-disability. At least in our state. It's a special category of Medicaid and it does have some concessions and benefits that regular need-based only Medicaid does not have.

Since my dh didn't have enough work history to qualify for regular disability, he qualified for SSI only, that qualifies him for SNAP almost automatically. We still have to go through the steps every 6 months but it is a much less stringent process if that makes sense.

You can, and the SSA actually encourages you, to work while receiving SSI if you can. There are programs specifically for those receiving SSI to get job training and job placement. You can earn certain amount from employment before it starts affecting the amount of SSI you receive.

Because SSI is partly need based, if he is receiving room and board from you, that can affect how much SSI he receives. He could qualify medically for SSI but receive too much in terms of rent free living arrangements, food or cash from you to qualify. 

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I don’t know this — but maybe my aunt and uncle are providing too much for the SSI payment, but he still qualifies for the insurance for the medication.

They have said that they didn’t think it would be worthwhile and then they did think it was worthwhile because of the medication, but they hadn’t known about that ahead of time.  
 

The medication used to be several hundred dollars a month I think.  
 

I also have an impression he pays them rent now?  I think he has to pay them rent?

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I know that for our foster son, they said we will get the stipend for him even after we adopt him and they base his "rent" amount on the mortgage amount divided by the number of people in the household.    Wonder if they would do the same for SSI?

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38 minutes ago, DawnM said:

I know that for our foster son, they said we will get the stipend for him even after we adopt him and they base his "rent" amount on the mortgage amount divided by the number of people in the household.    Wonder if they would do the same for SSI?

No, the foster to adopt program stipend is a completely different program with different rules. (Dh's bio-mom and step-dad foster to adopted several children so we have a good deal of knowledge of how that program works as well).

As I said before, SSI is partly need based and as a legal aged adult, they expect he has to pay rent to live somewhere. If he is not paying any rent, it will dramatically lower his SSI because he doesn't have a need to cover that expense. We had an issue when dh first got his SSI that his information was entered incorrectly as they had labeled him as living rent free in his grandmother's house. In actuality, we live in a separate house on his grandmother's property and she is our landlord, we pay her rent. Once that mistake was ironed out (and it took months of badgering them with documentation to get it corrected), his SSI nearly doubled to the maximum SSI payment amount.

Any living expenses that are paid for him or not expected of him to pay, will affect the amount of SSI he can receive. I know children under 18 can also receive SSI and those rules may be different (SSI for minors I don't have experience with) but the SSI rules for anyone over 18 are very strictly need based and any normal living expenses that are paid for by someone else count against the amount of SSI to be received by the disabled person. In order for him to receive the maximum amount of SSI he is eligible for and still live in your home, he would have to maintain a separate household within your home, pay you rent for his room and buy and prepare his own food separate from the family. It is similar to the way SNAP works if you live in someone else's home and don't maintain a separate household. You won't get as much in SNAP benefits and may have to count their income as well if you are eating groceries that are communally purchased for the whole household.

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I just wanted to say thanks for this thread. I came to ask questions about vocational rehab for an 18 yo in similar circumstances, and this thread was helpful. She used to work, but now says she can’t and she won’t talk about making steps toward it. She’s very demand avoidant and prefers to just be on discord on her phone all day and not deal with anything else.  Meanwhile, we are now paying the monthly bills for a monthly expense she took on at 15 with the understanding she was responsible for working and covering that expense. Which she did until 8 months ago, and now we’ve been paying it ever since. I think the situation works for her. She no longer has any desire to get back to independence and eventually move out. Which totally doesn’t work for us.

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  • 3 weeks later...

I'm chiming in late, but I'm interested in the process for SSI, so I've been reading the responses.

We just had a meeting with our case manager through the county developmental disability program, and she mentioned that they direct people to work with a certain agency that will help families with the required paperwork and process for SSI. If we decide to pursue it, we would get a free initial consult.

You might call your county board of developmental disabilities to see if they offer help. You didn't mention that you already work with your county, so I don't know if you have tried to or not yet. But it can be a good place to get help, though it does vary from place to place, with some county boards more helpful than others. There is a process for being approved for county funding that he may or may not agree to go through, but certainly you could call and ask questions on the phone about whether they offer help for SSI applications.

I'm sorry the state vocational rehabilitation experience didn't go well for him. He may not like this suggestion, but I will throw it out -- perhaps he could try again and ask for a different rehabilitation coach/counselor. Sometimes there is a poor fit, and it's okay to request a new person. (We did this when we weren't working well with our county case manager).

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