Disabled Adult Child--does anyone else have one?

[Ottakee]

Our oldest is 23 and living at home full time. He was adopted at 7 1/2 and has fetal alcohol, a cognitive impairment, etc. He does very well socially but academically is at about a 1-3rd grade level. His biggest struggles are with time (how long is 5 minutes) and money.

 

Right now dh and I are his guardians. He attends a public school program for cognitively impaired young adults so is gone from 7:30-4 each day. He is VERY social and has a very active social life--through church stuff, his special needs friends and "normal" peers in the neighborhood.

 

Right now our struggles are over his money. He gets SSI and must pay us (per SSI) a set amount for rent/board/food/laundry, etc. each month. He then has a quad that he bought that he has $300 left to pay on. The rest he can spend on recreation, social outings, gas to such outings (we are rural so I have him pay the kids that pick him up/bring him home for their extra gas). He also needs money for some of his school activities.

 

He though gets VERY upset that he can't spend $20 for an internet video game access card after he already spent $116 for a special controller. He just can't seem to understand that just because his bank account says that he has X amount in there, he can NOT spend that ALL on the 7th of the month when he still has 3 more weeks before there will be more money coming.

 

Does anyone else have an adult child at home with issues like this? He is searching for a job but with his special needs and the unemployment rate of nearly 22% in our area, the chances are VERY small that will happen soon.

[kalanamak]

Can you get him a payee who is not a relative? That is, a professional one. Not someone he sees socially.

[JFSinIL]

We are still in the process of getting our 19-yr-old SillyAutismMan his SSI - no idea how much it will be - may I inquire how much do you charge for the rent/food etc.? We have the guardianship and I am the Rep. Payee.

 

(added later) - now that I have read all the otehr posts, maybe we should be charging more than the $300 we came up with for his rent, etc. Well, once we see how much SAM will get we can tweak things, I suppose. Can he get food stamps or will our income count???

Edited January 9, 2011 by JFSinIL

[BridgeTea]

Money: Would it help for your son to get his "spending" money in cash when his monthly check comes in, and split it into 4 weekly envelopes to help with budgeting? Also, maybe a clear glass jar marked "savings" that he can physically drop the dollar bills into to save for the extra items like that $20 card. I'm thinking perhaps he needs something more tangible than his banking statement or checkbook register.

 

Job: Does Hope Network (or another adult rehab place) service your area? Hope, for one, employs lots of mentally and physically challenged people in my area. The bus goes past my house everyday for pick-up and drop-off of the non-driving employees, and I am in the sticks.

Edited January 8, 2011 by BridgeTea
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[Jean in Newcastle]

My adult nephew (in his 30's) has Down's Syndrome and gets SSI. His parents put almost all of his money into a savings account for him for when they are gone. They don't charge rent etc. at this time. For spending money, he might have a small separate account for spending money or they might just take it out at the beginning and give it to him, I'm not sure which. BTW - he was able to get a job as a bagger at a grocery store and as a busboy at a pizza restaurant in the past.

[Denisemomof4]

My adult nephew (in his 30's) has Down's Syndrome and gets SSI. His parents put almost all of his money into a savings account for him for when they are gone. They don't charge rent etc. at this time. For spending money, he might have a small separate account for spending money or they might just take it out at the beginning and give it to him, I'm not sure which. BTW - he was able to get a job as a bagger at a grocery store and as a busboy at a pizza restaurant in the past.

 

I'm really surprised to hear this. I think Ottakee is charging rent because SSI is making sure his money is needed and they hold their people accountable. I'm my brother's representative payee and I have to fill out paperwork stating how the funds are spent, line item by line item. I do this twice per year and the first time it scared me as it stated that if anything I wrote down was false, I could be prosecuted. I can't remember exactly what it says. I do know that if he didn't have legitimate needs for the money, he wouldn't be qualified to get it. I also know that he's not allowed to have more than 2k in ANY account at any given time, including savings. He is mentally disabled and has only worked a few random years in his life.

[Ottakee]

Yes, we were told to charge rent for him. He pays $350 month which includes most of the lower level of our house including his own private bath, most of his groceries (he gets a small food stamp amount too), his cell phone with unlimited calls and texting, cable TV, internet, laundry, my cooking and cleaning, etc. This was the amount our SSI guy told me to charge him--which is way less than anywhere else he could be. It also includes most of his transportation when he wants to go to friends houses, bowling with friends, to church activities, etc.

 

I don't think he can have more than $2K in his account either. We do have a separate trust set up for him for when we are no longer here to help care for him.

 

The rules/guidelines/amounts, etc. can vary the the person, disability, state, etc.

 

There is a Hope Network here and he has worked with various special needs agencies looking for jobs but when you have familes that are suffering unemployment (the rate was 22% in our area the last I heard) it is very tough for a special needs adult to get a job and while I want him to work, I honestly can't justify taking a part time job away from a teen or someone else that might need it to help pay for the bare necessities. He does do volunteer work, etc. as I don't want him doing NOTHING.

 

I will talk to my husband about giving him X amount per week and then when it is gone, it is gone but I can see him spending it all and then really missing out on things later in the month that we might not eve know about yet--sometimes he will need money for his school program for activities, etc. but we might not have even a week's warning.

 

Basically he needs a job and he needs more chores, etc.

 

He really is a great kid but has that teenage attitude right now.

[Jean in Newcastle]

I'm really surprised to hear this. I think Ottakee is charging rent because SSI is making sure his money is needed and they hold their people accountable. I'm my brother's representative payee and I have to fill out paperwork stating how the funds are spent, line item by line item. I do this twice per year and the first time it scared me as it stated that if anything I wrote down was false, I could be prosecuted. I can't remember exactly what it says. I do know that if he didn't have legitimate needs for the money, he wouldn't be qualified to get it. I also know that he's not allowed to have more than 2k in ANY account at any given time, including savings. He is mentally disabled and has only worked a few random years in his life.

 

 

Well, I'm not sure the details. It is very possible that I misunderstood. Perhaps they are banking the money they receive for rent for his future? That might be what my SIL meant.

[cindergretta]

My bil is 34. He had a high fever as a newborn that caused brain damage. He lives with my mil. He receives SSI and my mil takes a portion for his rent and food. The rest is his for spending money.

 

His "age" is probably around 10 or so. ::think:: He can read at a basic level, be home alone while mil works, use the microwave, etc. He is fully capable of working but he doesn't want to so mil doesn't "make" him, kwim? (It's not a great situation. Dh and his other brother have talked and talked with mil about the bad paradigm in which she has set him up. He is *lazy.* And she indulges it. He has endless electronic "toys." He has tons of craft things that he works on. He buys loads of movies and video games. It is insane. And he never leaves the house except to come here for family gatherings or to go shopping with mil. He has no social interactions whatsoever. And he isn't given any responsibility. And believe me, he isn't *that* disabled. :-/ )

 

I like the idea of giving your ds money each week in an envelope. I am guessing that in the beginning, he will end up spending it all on Monday and having nothing left. But he sounds like he will be able to learn how to keep a minimum budget. If he consistently finds himself without money, would he make the connection and spread out his spending?

 

By the way - my hat's off to you for giving him such a full and active life!!! Wanna talk to my mil???? :lol:

[Ottakee]

That is very common in the big older disabled adults---their parents didn't expect that much out of them and spoiled them. I taught adult special education for a while and some of the 30-40-50 year olds were still being treated as if they were 3-4 when in reality they could do MUCH more on their own.

 

We are trying to make all of our kids as independant as possible. It is hard to balance their special needs with holding them accountable for as much as they can do. Just like any other kid, they would love to get by with doing as little as possible.

[Lisa in Jax]

<Snip>

 

I like the idea of giving your ds money each week in an envelope. I am guessing that in the beginning, he will end up spending it all on Monday and having nothing left. But he sounds like he will be able to learn how to keep a minimum budget. If he consistently finds himself without money, would he make the connection and spread out his spending?

 

By the way - my hat's off to you for giving him such a full and active life!!! Wanna talk to my mil???? :lol:

 

Not to butt in on Ottakee's thread, here, but in terms of his making the connection between lack of money and his spending, it's possible that he'll struggle with that. People with FAS often have a hard time learning cause and effect, and they are sometimes impulsive, too. So, if he's anything like other kids I've met with FAS, it might take 100 (or a thousand) times before he makes the connection. Ottakee might want to pull her hair out before he makes the connection between spending and available money. ;-)

[coffeegal]

Not to butt in on Ottakee's thread, here, but in terms of his making the connection between lack of money and his spending, it's possible that he'll struggle with that. People with FAS often have a hard time learning cause and effect, and they are sometimes impulsive, too. So, if he's anything like other kids I've met with FAS, it might take 100 (or a thousand) times before he makes the connection. Ottakee might want to pull her hair out before he makes the connection between spending and available money. ;-)

 

Just out of curiousity, could you have the spending envelopes on a daily basis instead of a weekly one? This way each day is a fresh start, and if he doesn't spend his Tuesday allotment he can spend double on something on Wednesday. Would it work or be too complicated?