Sooo maybe its already happening…
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I was thinking the same thing as I wrote that.
But, it’s more alcohol, drugs, infidelity, money related than paranoia/delusion related from what I saw.
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Just to update anyone reading this later, we went by the social security office today to finish the interview & take care of the representative payee stuff.
It wasn’t too busy, but it still took close to an hour. A few minutes at the front desk, then about a 20 minute wait to be called back. Then the rest of the time running through various questions. He had to sign one form - I just had to show my driver’s license.
I applied online on June 6th and they called me with the approval earlier this week - Monday August 14th I think.
So that was fast.
He’ll start out with a $490 payment since he lives at home. She said they would call or send a letter in 6 months. At that time, I should say he is contributing to the household bills so they’ll increase it to the max.
It was so fast, he only has 2 months of backpay coming.
When they sent the applications in for him last year and put Medicaid only on them, I think it took about 3 months to get everything approved. I’m guessing that may have played a part in this going so smoothly.
I also put “chronic, persistent and debilitating” as descriptors everywhere it would fit and wrote up a page of examples - like how he can’t go into a store for more than a few minutes if that and can never go through the register himself, how he can’t maintain focus enough to cook without supervision (he’ll sometimes leave the stove on or forget about the food completely), how he needs help to stay on task most of the time and has a hard time following a long list of instructions on his own. All those things that are second nature to most people but would keep you from working.
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It is a relief you got SS. My son and I filled out the papers 2 years ago after he got home from first hospital stay. I was surprised he was approved quickly from everything I had heard. Also our caseworker said she was surprised because a lot have to appeal.
Thank you for sharing about the letter that comes or may come at 6 months. My son also got $490, as his initial benefit. Depending on the state you live in, there may be a small additional state benefit as well. In MA, my son was eligible for this.
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A very kind older lady helped us with the representative payee thing, and she just said this is what you should do.
I don’t know if they all do that, so I thought I should mention it.
During the time we were with her, at different points, she said it 2 or 3 times.
Along with how we should keep a notebook with all his appointments so we have it ready when they do a review in 3 years, when they ask if all the money is spent on food, clothes & shelter, I should say yes - all the basics of how we handle future questions, what to expect and when to expect it.
Of course, she also told us that if he starts working some, we should let then know - and she was very low-key, but positive about part time jobs or classes.
It was a much better experience all around than I expected.
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My experience when Jeb had to present himself to sign was much better than I expected also. An experienced friend with a son suffering from scz, had told me ahead of time that they deal with people suffering like Jeb all of the time. She was right.
The amount of money Jeb receives went up from $490 to $755 when the apartment was finished and he moved into it. He has his own bathroom, kitchen and washer and dryer. My SIL with a severely autistic adult son was told by her social worker that her son would need his own area of the house - I know he at least had to have his own bathroom- to qualify for more support. I don’t know if a separate entrance or a kitchen was required. Maybe someone else would know?
Jeb has to pay his own utilities, rent to us, and all of his food and clothing out of those funds. Luckily he doesn’t buy much in the way of clothing.
We can provide him with a cell phone. TV and internet comes with his rent which is typical for a rental in our rural area. You must rent to them at current market value.
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The lady told me to divide the mortgage, electricity and trash pickup by 3 (we have a well, so no water or sewer bill), and count that as his part. Things like phone, cable, internet aren’t necessities, so don’t count them. I think he’d qualify for a free cell phone through his Medicaid anyway, but he barely uses his and it only costs me $20 a month on our combined plan.
She didn’t say any special things were needed, like a separate part of the house.
So, that’s what I’m going to try.
Maybe, it varies by region. I’ve heard approval rates & times vary by region, so maybe how strict they are with this does too.
I also asked her what kind of records I needed to keep as representative payee.
She told me nothing really - just say all his money went towards rent, food & clothing.
But, to carefully track all of his medical care for his 3-year review.
I believe the separate spaces are required for a larger amount. They told me to tell them when he moved into his own apartment and the amount would increase at that point.
Ours took 4 months to process which is typical for our area. He was not on Medicaid when he applied.
I’ll report back when we get to that point.
Apparently, I’ll be asked anyway. Then, I’ll be honest & see what they say.
I wasn’t expecting it to go up if he was still living at home, but this lady kept telling me what I should do.
I’ll give it a try and see what happens.
Let us know what works, I know there are people who receive more than Jeb, I don’t know how their situation is different. Jeb also gets food stamps in addition to ssi and ssdi.
SIL was told it would require providing her son his own bathroom. She gave thought to moving him down into her basement after renovating it as a separate living space. She hasn’t found the funds to do that so far.
People in a nearby town added an outside staircase to their upper story on one side and tacked a bathroom (we can see the pipes) built like a bulkhead (on stilts) on the other side. We have wondered if they have a relative with mental illness living there.
I’m not expecting that he’ll get food stamps unless he moves out.
He technically has his own bathroom - I use the one upstairs exclusively and he uses the one downstairs.
It’s right across the hall from his room.
I’m not going to lie or bend over backwards to get the extra little bit of money. If it’s not as simple as saying he contributes to the bills, I’ll let it go and he can get it if he every moves out.
Right now, we’re trying to get a small house built out on our country property for my husband, so that’s our top priority.
If that goes well, I want to sell this house & buy another one that’s not in subdivision so we can have a little more privacy. At that time, I’d like to find something with an in-law suite or basement/garage apartment he could use if he wanted.
Either way, I’m not going to sweat a couple hundred a month. I just thought it would be nice for him to have if he actually does take a class or two. I don’t think you can get any financial aid unless you are at least half time.
I think its not so much about lying as it is knowing how to structure things for our sons to make them as independent as they can be in case we should suddenly die on them.
It has been good for my son to have his own space where he prepares his own sandwiches and has his own tv and computer.
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You make a good point.
We waited with a lawyer 3 and a half years only to be denied benefits. The say he can work some of their reason for denying are he could communicate with his doctor electronically, that was me helping him, and his answer on how long he slept he told them 10 to 12 hours, not 12 to 14 and s9me days longer. And his history of drug abuse, yes he is clean now bit it took years to get him on the right med, which was clozapine, to help him 8vercome the drugs. The voices were driving him nuts. We are going federal now since the ALJ denied him.
@lindag - my son had already been approved by our state for Medicaid as a disabled person. That happened because the people at our county mental health dept could see that he needed to be in their intensive program, and that was the only way in, so they really bent over backwards for him. And, I’m guessing they may have had some contacts at the state office that decides those things.
He should have gotten SSI then, but they put only Medicaid on the application to push it through.
Both times, when they sent the booklet of questions about what he could do & couldn’t do, I filled them out and put in the back I did so because he wasn’t capable. I was blunt and brutal about his condition & wrote a whole page with an example of what happens when he’s around people being very specific.
Plus, we had medical records from at least 4 different psychiatrists, probably 4 therapists, all who were saying how bad off he was, and he had been hospitalized 5 times in 10 months - all involuntarily.
Clozapine is working well for my son too - it’s so good how it does seem to make them crave drugs and alcohol so much less. I have to think it’s because it works well - and all the substance abuse was them trying to find something that brought them relief.
I don’t think I even mentioned my son’s history of drug abuse since he’d been clean for close to a year when I applied.
Well his drug abuse was all through his records. Only stopped when he got on clozapine. But SSI doesn’t care. They just saw he got better once he got on the right meds. Any drug use affects your chances of getting SSI no matter how long you have been clean. Thankful it’s two years now
Agree…no person with mental disorders can fill these out…as a nurse and college graduate, I found it difficult !..sad…! Try again…go to the social security office …
You can do this yourself. I did. Apply for SSI based on the illness (obviously no work history). You will need to provide documentation of the doctors and dates he was seen, and if he tried to hold a job, the dates and he left due to issues with his illness. It takes time but you do get payments going back to the beginning of the process. SSI is necessary to get so that you can then apply for state Medicaid. Medicaid varies state by state for what it covers.
You can not appeal the SSDI as he has not worked… yet… here is a way to get SSDI.
My son was disabled before age 23 and then his dad retired. He is now eligible for SSDI under the dad’s retirement. Make an appt with Social Security for this part. He will get a higher benefit based on the dad’s work history than on SSI. After about 2 1/2 year on SSDI he will then be eligible for Medicare. My son just qualified for that and he is now 26.
I keep a running word document with all doctor appts dates and meds he is taking. That proved useful when applying for SSI. I keep it up as it is a good history when you change doctors or meds are not working.
The lawyers save you the hassle but they take a percentage of the money that you will receive.
Good luck to you!
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Thanks Triplets - he’s all approved & we’re just waiting for the representative payee paperwork & first check.