How to set up a budget for my disabled son? UPDATE post 25

[EllenFrasier]

My 20 year old son lives home still and will for the foreseeable future. He is disabled and we have applied for SSI for him - still waiting to hear. He has a part time job which he's had for a couple of weeks. If he is approved for SSI, his part-time job will be figured into how much he will receive - this much I know.
I have to come up with a budget for him and I have no idea how to go about it. Is there a website out there for that? Like how much we charge him to live here, how much he pays for food, clothes, cosmetics, transportation, insurance, etc. We do not charge him anything at the present time, but he has to show that he has expenses. When he gets approved for SSI, we will probably take some money for at least his clothes.
Anyone have any experience doing this?

 

[scrapquitler]

I would do it just like a budget for myself. Guesstimate the amount for each main category each month:

Food (if 4 people live in your house, your food bill divided by 4)
Entertainment
Medical expenses (prescription copays + medical visits + dental visits + otc medications)
Rent
Transportation (does he ride a bus to work, how much gas does it take for you to drive him there?)
clothing budget
etc.

 

[DOPEYLUVER]

What about signing him up for some social services? I don't know where you are but (in Massachusetts) if your son is mentally challenged, I know he could get some help through the Department of Mental Retardation (while not a politically acceptable term, it's what they use.) Other social services organizations offer various types of financial literacy classes. Generally the social workers can help you get the "biggest bang for the buck." In other words, maybe if you took a clothing allowance that wouldn't be allowable as an expense, but perhaps food and shelter would be. I have no idea but as examples.

 

[dfchelbay]

Maybe you could charge him pretty much what you would charge a border in your house. You can take that money and stash it away for him in a bank account. He will learn to budget his money based on his expenses and what his paycheck and SSI provide him. If, he is ever able to live on his own or with a roommate, away from your home, he will have that money in the bank for such a time. It will give you peace of mind to know there is a little bit extra for him should he need/want something that may not be part of his fixed monthly budget.

My girlfriend, after graduating from college, had to move back in with her parents for nearly two years. She paid them rent every month, while saving to get her own home. When she was financially ready to move out and buy her own place, her parents surprised her with returning to her all the rent she had paid them, to go toward the down payment on her home.

 

[kirstenb1]

I'd just take everything you listed and assign it a % value, like 5 or 10 percent, or whatever. Then whatever's leftover is savings.

 

[NemoMom07]

When my son received SSI, he was under 10yrs old, they allowed his $ to pay half the rent. I thought that was crazy. So you could charge him half your mortgage and just save it for him, but not in an account with his name on it or that will count as an assest for him and could potential lose his SSI. You could set up a percentage for food and etc based on the number of people in the house and divide it equally. For instance if there are 3 in the house 1/3 of the utilities, food, etc. Just some ideas.

 

[Juliah]

There is a specific list of household expenses that goes into the formula to figure out how much your son must pay you in "room and board" in order to receive his SSI. The idea is that if he is not paying for his share of the household expenses, he does not need SSI, so they can deny him.

You need to find out what the specific expenses in the formula are from the Social Security Administration (SSA). You should be able to find this information on the SSA web site (though I find their site kind of confusing) or by calling the national or local office. I don't want to list them off the top of my head in case I leave anything out, but the required expenses are things like mortgage or rent, groceries, utilities, and I think property tax and house insurance.

Once you find out what you need to include, add up the amount you currently spend on all those expenses per month (averaging things like utility bills over the year), then divide that by the number of people living in your house. He must then pay you his share of that amount. If there are three of you, for example, he pays one third. BTW, if anyone moves into or out of your home in the future, you will need to let SSA know and adjust his room and board payment.

You can still have your son pay for his own clothes, entertainment, etc. if you want, but it is not part of the SSA's formula.

Something else to keep in mind--SSA will ask you if you are going to be the payee of record (I think that's what it's called) or if he will be in charge of his own money. If you choose to be the payee of record, SSA will watch more carefully how you spend the rest of his SSI money (beyond the room and board), and I believe you can be audited and will need to show where the money is going. So if you feel he is capable of managing his own money with some informal help from his family in making good decisions, that is certainly less complicated than being his payee.

 

[mom2d&b]

As far as a web site, you may want to try mint.com to track his expenses. This allows you to set up a custom budget and track expenses.

 

[Kay1]

I just want to suggest you ask this question on the disAbilities Community Board here at the Dis. There are a lot of experienced people who post there.

Feel free to PM me if you want to. Good luck to you and your family. I know it isn't easy.

 

[bookgirl]

Two of my former students (who I am now friends with the mom's) are on SSI. Both of them had to figure out the whole how to spend the money while not having more than $2000 in savings budget. It was much easier to 1. Have a set amount of living expense spending. 2. Set up an account with both you and the "child" as the signers. Both kids are ASD and the boy has additional medical issues.

One is a 19 year old girl. Her parents set an amount for "rent" like 25% of the payment as that is what most people spend. Then the daughter pays the utilities every third month so that they didn't have to bother with breaking it down everymonth. The mom also carries the daughters checkbook/card. And whenver she gets clothes, DVD's or personal items for the daughter she pays for it out of the girls account. The girl also will write me a check for "sitting" with her when parents are out as she can not be left independatly for any amount of time.


The other is a 24 year old boy. They also just set a set amount for "room and board". I think 1/3 since they didn't want to have to split bills every month. They also use the account card to buy all his medical supplies not covered by insurance.


Both sets of parents have paid off thier houses prior to their child recieving SSI so it was easier to have a set amount as they had no mortgage payments and splitting utilities every month was a hassle. Also being able to just buy the childs items with the childs own money and not pay for it themselves and then let the child reinburse them was a lot less paperwork. This way they just print out the kids account statement every month to track spending and to show that the money was actually used for the childs benefit and not just random reinbursments to the parents that had to then be explained on yet another form.

I will say this only works because neither child has the skills or inclination to spend thier own money. It might be different if the child was more active in spending the money.

Oh the boys account is set up so that SSI automatically withdraws the "room and board" money and just direct deposits it to the parents, so they actually never have to have him write them a check. The girl's parents do have her write a check for the rent to them and then they just send a check from her account to the utilities on her month to pay. Both seem to work out well for the families but they worked with thier case manager to find a way that worked best for them.

 

[dreamer423]

Have you consulted an attorney about setting up a special needs trust? Most important to keep benefits unaffected by income, inheritance etc.

 

[Juliah]

I don't know why I always have trouble finding the info on the actual SSA web site, but I found another site for you that explains how to calculate your son's contribution to household expenses, as required by SSA. Scroll down to the heading "Determining 'Fair Share'" to find the formula. Again, you cannot just come up with a figure based on what you think he should contribute--this is an actual formula you must use. The SSA representative will ask for the amount in each category, not just a total amount.

http://ruralinstitute.umt.edu/training/publications/fact_sheets/ssi_&_children_turning_18.asp

BTW, we were also told by an advocate that it is a good idea to give your child a receipt for the fair share money he pays you (you can get a simple receipt book at an office supply store) in case SSA ever asks for proof that he is paying his fair share, though we have personally never been asked to provide proof.

 

[AmberHeartsDisney]

I would start charging him "rent", to save for the future there are types of accounts you can open to do this such as a special needs trust.

Do you have any plans where he will go when you and your husband/wife pass on? I know this is hard to think about but it does need to be talked about.

I would make every dollar he gets accounted for best as possible.

for example:

Clothes
Food
Medical(co pay, pills, etc)
Transportation
blow(like he wants like video games, a toy or something)
Rent/save for future

 

[travelitis]

This is a very helpful thread. My son was just approved and just received SSI.

I have a friend whose daughter is profound, and SSI required the child have an account for deposits. At the end of the year, they just claim it all as living expenses for their daughter, which it is. They don't have a dime of it left to save.

We were already discussing this issue, but I want to thank people for all the information.

 

[Fly4free]

I would recommend contacting your local ARC. This is what they are there for. They are a wealth of information and resources.

I have been a volunteer monitor with my local ARC for 10 yrs. now, and also have a sister with severe mental disabilities. I have learned so much through my friends at ARC, and they have also helped us when we needed an advocate to help sis receive all the $ she was entitled to. If I can help with any more info feel free to PM me.

Best wishes to you!

 

[Redwitch]

You need to charge your son "his fair share" of living expenses. This would be the rent or mortgage on the home, home owners or renters insurance, water/sewer, trash, electric and gas/oil if used. He can either include food in the shared expenses, or buy his food independently. If he does this, he may be eligible for food stamps. Cable TV or internet are not included. Once you figure out how much you spend on the above on a monthly basis, divide by the number of people in the house. So, if the expense total $1000 and there are three in the house, his fair share is $333. You want to have a signed, and possibly notarized, document that as of such and such a date he is paying his fair share of household expenses at such and such an address and will pay $xxx to You/Hubbie each month. Do not have him pay rent or you need to claim it as income. Also, if he is denied for SSI Disability, appeal. They usually deny everyone the first application. As noted, he needs to keep his money blow $2000. Have him foot the bill for a WDW vacation!

 

[EllenFrasier]

You need to charge your son "his fair share" of living expenses. This would be the rent or mortgage on the home, home owners or renters insurance, water/sewer, trash, electric and gas/oil if used. He can either include food in the shared expenses, or buy his food independently. If he does this, he may be eligible for food stamps. Cable TV or internet are not included. Once you figure out how much you spend on the above on a monthly basis, divide by the number of people in the house. So, if the expense total $1000 and there are three in the house, his fair share is $333. You want to have a signed, and possibly notarized, document that as of such and such a date he is paying his fair share of household expenses at such and such an address and will pay $xxx to You/Hubbie each month. Do not have him pay rent or you need to claim it as income. Also, if he is denied for SSI Disability, appeal. They usually deny everyone the first application. As noted, he needs to keep his money blow $2000. Have him foot the bill for a WDW vacation!

We have five children all together. One is living home but works full time. The others are all still in school - one in high school and two in middle school.
Do I include the people who cannot pay the expenses when I am dividing it? In other words, if the expense total was $1000 and there are only three of us plus him that could pay any of it, do I just divide it by 4 or do I include the kids that are still in school?

 

[PammyPoppins]

You need to charge your son "his fair share" of living expenses. This would be the rent or mortgage on the home, home owners or renters insurance, water/sewer, trash, electric and gas/oil if used. He can either include food in the shared expenses, or buy his food independently. If he does this, he may be eligible for food stamps. Cable TV or internet are not included. Once you figure out how much you spend on the above on a monthly basis, divide by the number of people in the house. So, if the expense total $1000 and there are three in the house, his fair share is $333. You want to have a signed, and possibly notarized, document that as of such and such a date he is paying his fair share of household expenses at such and such an address and will pay $xxx to You/Hubbie each month. Do not have him pay rent or you need to claim it as income. Also, if he is denied for SSI Disability, appeal. They usually deny everyone the first application. As noted, he needs to keep his money blow $2000. Have him foot the bill for a WDW vacation!

We are in the midst of this process for our disabled daughter who just turned 18 a few weeks ago. We had a phone interview the other day and my head has been swirling ever since. We are trying to get her the full benefit amount from the beginning. They say it is impossible for her to "fair share" the first few months because she does not have the money because she has never worked. They say she has to get the lower amount at first and then we can petition for the higher amount after she starts receiving benefits. I could use any help or input anyone has. We are very confused. Thanks, Pammypoppins.

 

[Juliah]

We have five children all together. One is living home but works full time. The others are all still in school - one in high school and two in middle school.
Do I include the people who cannot pay the expenses when I am dividing it? In other words, if the expense total was $1000 and there are only three of us plus him that could pay any of it, do I just divide it by 4 or do I include the kids that are still in school?

Include everyone living in the house, no matter whether they can or do pay any expenses. The point is to find his share, not to make everyone pay a share. So if there are seven of you living in the house, divide the total of the formula by seven, and that amount will be his share.

 

[Juliah]

We are in the midst of this process for our disabled daughter who just turned 18 a few weeks ago. We had a phone interview the other day and my head has been swirling ever since. We are trying to get her the full benefit amount from the beginning. They say it is impossible for her to "fair share" the first few months because she does not have the money because she has never worked. They say she has to get the lower amount at first and then we can petition for the higher amount after she starts receiving benefits. I could use any help or input anyone has. We are very confused. Thanks, Pammypoppins.

That sounds strange. Our DD received the full amount the first month and paid us her fair share out of it. She had no prior income and minimal savings.

However, if they insist your daughter can't get the full amount because she's not yet paying full share, what about you (or another family member or friend) loaning her the money to pay you her fair share now so you can prove she *is* paying it. I had never heard of this strategy until today when I was doing some research for this thread, but the following site explains it. Scroll to the near the bottom of the page where it says "How does your child pay his/her fair share of living expenses when he/she lacks the money?" and see if you think it might work for you.

http://scaccess.agis.com/AGModules/...rticleid=3452&categoryrelationarticleid=20348