I want my son out of the house

I already have an attorney. My son has to meet with a Dr for SSA next week. The attorney said that often times this will be denied and then he would file an appeal. I don’t get this! SSA is able to talk and get records from his psychiatrist, all the treatment centers he has been to, the facilities that he has been baker acted at and STILL it will all come down to 1 Dr, 1 visit! If my son is having a good day the day of the meeting, he will just come off as odd, if he is having a bad day, I won’t even be able to get him to the appointment. If we miss the appointment, SSA will consider him non compliant and its over. What a mess! I just don’t understand how this system can be so against this disease.

1 Like

Have you looked into getting guardianship for your son?

I know how it is with SSA, there’s so many people in need of assistance that I assume is the reason for them to make it in such a hurdle and I really hope he gets to his appointment, if he misses it he would not care; is he getting any help as an outpatient? Any social worker should be able to get him to the SSA appointment or remind him at least, even the attorney can remind him because though they know how’s their behavior sometimes they listen to others better than to us the parents since in their minds ‘were the problem’.

We’ve been there in a little different situation with their rules about benefits from his father work, at the end he was denied. :frowning:

I wish you the best outcome.

You are not selfish, we need a break and take care of ourselves. We have a daughter and 3 granddaughters in VA and it’s been a while that we’ve been there, good thing they can come over to visit their dad. I’m ok with taking little time to visit with a friend now and then or going out to lunch with any other one of our kids, we have 5 and our oldest son is the one we have at home. My parents and most of my siblings are in Mexico, I don’t remember when was the last time I visited them there; I’m fortunate that I have 2 sisters and 2 brothers living in the area. Still is nice to be away for a bit, I’ve had days that I want to hide. :slight_smile:
The rest of our kids want our love and attention also. When you visit your other son focus on that, it’ll be what it’ll be when you return home.

I think I sent you the wrong link. I’ll look for the other one and send it to you. This days I spend a lot of time looking for stuff I don’t remember 2 seconds ago.

I have not looked into getting guardianship. What are the benefits of having it?

Where is this social worker that would help him? I am planning on leaving work early to make sure my son makes his appointment. The letter from SSA stated that he would be considered Non Compliant and the application would caput. So he will be there.

Guardianship would give the you (or other court appointed guardian) legal authority to make decisions and transactions regarding finances, housing, medical, etc. on behalf of an incapacitated person (your son in this case). It requires a court appointed medical team to determine if it is necessary and Florida courts favors least restrictive approaches such as power of attorney before considering.

I considered this for my mom, but she was able to behave well for periods of time, so I didn’t think she would qualify. She was not pleasant to live with when not doing well. If I had guardianship, I could get around the HIPPA restrictions and get her medical care that worked properly and maybe set her up with her own housing. Without guardianship, she was able to legally refuse medical care and continue being miserable for herself and those around her.

She did well when she was on the right level of medication, except for some side effects. Once she convinced the doctor to lower her medication she started becoming symptomatic and then no longer wanted to change medications and there wasn’t anything I could do about it except ask her to leave.

Perhaps if your son’s doctor can find an effective level of meds, then he would do well. Guardianship would help to make sure he stays compliant and continues doing well.

It’s best not to take the chance for your son to miss his appointment at the SSA, taking him there is the only way to make it happen and you’ll have a peace of mind for doing what’s in your power to accomplish the necessary steps to get the help he needs.
I mentioned the social worker because in our area the CSP (Community Support Program) is there for persons that need help in various ways: manage their money, meds, going to the doctor or appointments and check on them often. Our son has not been in their system for over 4 years and when the social worker would go to his apartment he wasn’t there, he’d take off to avoid seeing her.

I will have to check into a social worker. Hopefully, we can get my son into his own place some day in the near future and it would be nice to know that someone other than myself can check on him.

Let’s hope he wants to. One step at a time. This one tries our patience and hopefully one day when we look back we can see the transformation in each one of us: our loved ones and ourselves. There’s much to learn and overcome.

@Tippy, I haven’t been following this thread and just now scanned it. Forgive me if I’ve missed something.

I think I read that your son is compliant about taking the meds, but doesn’t like them and they aren’t effective.

Would it make sense to have another psychiatrist take a look at his medication history and give their opinion? Nobody has to change anything, just get more information.

In my son’s case proper medication management has made all the difference. I’ve often thought the dosages were too high – i.e. more than the licensed amount – but they are being tapered and the psychoses he had last year, which included abusive and commanding voices, have long gone, thank God!

I think antipsychotic prescribing is difficult and it takes someone who is very experienced to get it right.

Also, as you’ve found out, it can be very expensive to support two residences. Maybe a detached dwelling on the property would be affordable. But no matter where he lives recovery is job #1 and I think that starts with an effective medication program and then other social things and psychological improvement need to happen.

3 Likes

simbul,
No worries, I know my son was diagnosed with squizoaffective disorder but I can see autism there as well among other features.

my son is socially awkward to…but maybe if they have groups they can be awkward together. …

Also call the SSA office if you haven’t heard and get on them… You should have something…when I first applied for SSI, son was 18, and they responded to severe ones first and he got notice in 2 months, and got approved and they gave back pay to the date of filing. Also tell them he pays $600 or so rent to you, then you qualify for appx. $250 more. In Idaho it is $841 a month now. They have yearly increases. Don’t say you are going to help with funds or they deduct that from the amount. When you retire, they can get SSDI and get 1/2 the amount you qualify for from SSA.

1 Like

Thank you for the information. I wish that I had known about the rent thing. Afraid he already had a meeting with a rep for SSI and I think that option has been squashed. I really can’t believe how long this is taking. It has been OVER a year now since I first filed the application. The attorney says it can still be another 6 months or more! Due to COVID they are backlogged I am told

Good thread that parallels our experience. My frustration was that anytime I tried to explain that I was having to pay for EVERYTHING (food, gas, insurance, housing, meds, etc), thinking that would show how needy he was, they would deduct that support. What?

It’s a paradox. He’s 21 now, and they want to know he is truly disabled - been fired from or quit his handful of jobs within 2-3 months - and has no other income. And evidently they look at a sacrificial parent as another ‘source’.

Seemingly it’d be better if he was actually homeless, hungry, non-compliant on non-existent meds…. Seems like wrong-thinking.

We, the parents, are currently his LAST hope. And we need help. He may move out tomorrow. Stop taking his meds. End up in Boise or Sheboygan. With SSI in place, he will still have access to Medicaid, food stamps, and $841 a month.

That’s why we did it. Took 18 months and we got it. We don’t use the food stamps, and I’m currently keeping him on my insurance, but it feels good to get the SSI in place and has helped defray current expenditures. Good luck and don’t give up. Keep grinding.

3 Likes

18 months! This system sucks! We are getting close to the 18 month mark with no help so far. My son is on COBRA ins right now cuz of his age I can’t keep him on my insurance. Very expensive. I have to get him on SSI, the medicaid programs in Florida do not have very good if any help for mental health. I plan offered it and the 2 psychiatrists that were on the plan were not taking any new pts. All I can to is keep plugging along. It sure would be nice to look at a future than such a struggle through each day.

Tippy, did your son’s appointment with SSA’s disability doctor go well?

To clarify what @Sando is saying, we parents are looked at as a “source” by our federal and state governments if we are contributing to food, clothing or shelter. “Shelter” includes utility bills like electricity, water and natural gas. Us paying for food, clothing or shelter can cause their benefits to be reduced. There are things we can pay without it being counted as a source - cell phones, internet access (many areas offer discounts on internet access if your family member is on ssi) car insurance, renters insurance, gasoline, medical bills, etc. Also, we can’t give them money. If an unknown deposit shows up in their account, they can end up losing SNAP and their state agency will inform the SSA which can cause a review of their ssi benefits.

For therapy and growth, my son’s psychiatrist wanted him to work on an extremely limited basis. He never made more than $200. a month as a driver. This amount was allowed and did not change his benefits. Unfortunately, just working at all caused his SNAP benefits to be reviewed every 6 months. Each review became a battle between me and the reviewers as they tried to say he made more money than he did. Their paper and online apps (and their mentality) are designed around jobs that have specific hours a week and specific pay periods.

Side note to this small rant - when my son was “granted” ssdi and ssi, it was a smaller amount at first because we weren’t allowed to charge him rent because we didn’t have a mortgage on our home. If we had been paying rent or paying a mortgage we could have charged him rent. Lucky for us (!) we had just spent $50,000 to build a garage apartment for him. We were allowed to charge him rent to live in the garage apartment and they bumped his benefit up to the max.

As Sando says its important for us to get these benefits for our family members because…

Exactly.

1 Like

Thanks for asking, but I have no idea how it went. I was not allowed to be in the meeting. I only heard a little bit from my son and he said the Dr wanted to know if he can handle his own finances. I am sure my son said he could-but he can’t. That boy can’t save a dime and tries to spend what he doesn’t have all of the time