Pros and Cons of applying for SSI

Discussion in 'General Parenting' started by slsh, Aug 21, 2006.

  1. slsh

    slsh member since 1999

    Well, Boo will shortly (4 months) be 18. husband and I have been hemming and hawing about guardianship and SSI. Unfortunately, I think we have to get guardianship in the short term if only to protect him from the school district and early "graduation" and other such malarky. It's not something I want to do because I think he is perfectly capable of making decisions - around here we've been letting him make some fairly significant life decisions for the last year or so. But because he has no reliable method of communication, at least verifiable method (written or being able to verbalize his wishes without prompting)... I feel like we have to make sure we're still *legally* required to be included in the decision making process just to make sure he's not taken advantage of. I hope it will be a short term thing because it feels like we're short changing him.

    He will be covered by husband's insurance until he's 25, at least. After that age, it's on a case by case basis and I'm cautiously optimistic we'll be able to carry him until husband retires (in 19 years, LOL). So we don't need Medicaid (not that any of his current docs take it). The cash associated with- SSI, while it would help, is quite frankly a drop in the bottomless bucket that is Boo's medical expenses and I'm not sure I want the hassle of the yearly accounting. Plus, and this may sound dumb, I feel like we can take care of our own (knock wood). We've managed this far without help, we can keep on.

    I know IL state programs play funny money with- Medicaid/SSI funding (ie you have to have Medicaid and SSI to receive services), but even though he will become "eligible" at 18 for state services (PCA, workshops, etc.), the reality is absolutely nothing will change. We will not be able to get help in the home thru the state and the only living arrangements for adults as involved as Boo is "group home" settings of 16 or more - institutions in my dictionary. Not an option. The ramifications of the Olmstead decision (essentially LRE for adults) may never hit IL.

    Long term goals are once thank you loses his funding thru IL (upon HS graduation whenever that may be) for MH services, we're outta this state. The idea is a move to a more daughter friendly state, one that funds if not actually fosters community living settings.

    Impossible for me to present this unbiased, LOL. But is there any conceivable reason that we should consider applying for SSI for him? Approval is a slam dunk - quadriplegic, nonverbal, visually impaired young man, no ADLs, requires total care. But... I just *really* don't want to do it.
  2. tiredmommy

    tiredmommy Site Moderator

    I guess my view of social security disability in a case like Boo's is different than yours. I see it as a safety net. A meager one, yes, but a safety net nonetheless. What would happen to Boo if you & husband were suddenly incapacitated due to injury or illness? What if husband were laid off? What if you died an early death? The SSI could be used to improve Boo's life (and yours) to provide additional services. You and husband have been paying into this system since you were teenagers, I imagine. You didn't expect to have a profoundly disabled son at that point, but you do. Look upon the taxes collected as a monthly settlement of sorts that you and husband set up in the event he wouldn't be able to hold down a job and provide for himself. Just my .02 :wink:
  3. OTE

    OTE Active Member

    TM... just for clarification purposes, SSDI is not SSI. Obviously all comes from the same taxes but no one specifically pays into SSI. Your annual stmt from SSA shows how much you've paid into SSA over the years. You'll see it's never even enough to cover your Medicare costs down the road much less your SS retirement checks. How much you pay is never going to cover the amount you collect.

    I agree with TM. The point of it is long term planning, not short term. You're right, he'll probably get nothing in terms of cash. But why not put the money you are spending now on medical bills in a special needs trust for him? So get him on Medicaid (which could mean switching some docs, pharmacies, etc). As Fran has to eloquently posted here you could have some problems with SSA re the application and on an ongoing basis because you're paying for so many things for him. So what I'd do is set up an account in his name specifically for his SSI check. Let him manage that account which will have a minimal balance but will be his spending money. Put whatever you can spare that would have gone to medical expenses into the trust every month. Then when he needs something that Medicaid won't pay for you buy it out of that money. Long term then there's money in a trust for him. 30 or 40 years down the road if he needs a van, needs to make wheelchair modifications to a home, buy some new high tech chair, bath lift, computerized automatic door openers, etc there's money there. You really can't anticipate what kind of technology there might be for him that Medicaid won't pay for when we're gone.

    No matter where you live the SSA system is the same. You may decide to move to a place with a bed open that you want to grab but can't because the application process will take months. It's not a matter of whether or not he's qualified, it's paperwork in their office.

    Reminder: special needs trusts vary by state so be sure to tell the attorney that you intend to move.

    Maybe this is obvious but in my mind the ideal situation would be to have whatever you leave him go to the trust. The trust buys a house for him and his choice of roommate to live in, hires staff, etc. So down the road he's not a tenant subject to the rules of some agency but his own landlord. If he's got the capability (with the help of a trustee of the trust) to make decisions why not give him aome control over his life later. This can all be managed through a lawyer familiar with spec needs law...the trust, the non-profit to own the house, etc.

    As to medical insurance, assuming the premiums aren't costing you a lot of money, keep it on him if you really can't switch docs or there's something it pays for that Medicaid won't. The Medicaid will then be secondary.

    Bottom line, let your money benefit him down the road and let Medicaid pick up the excess bills now. Set up the SSI now so when he really needs to be approved for it you won't have to go through the process.
  4. slsh

    slsh member since 1999

    Thanks for the input. You're right, we do need to think about after husband and I die. Our "estate" (aka life insurance) will be divided and Boo's portion will be in a special needs trust. Right now my bro and brother in law are the trustees (trust doesn't actually exist right now because... well, we're still living hand to mouth, LOL). Eventually Wee and Diva will be trustees. Thanks for the heads up about different states and different rules... we'll have to remember that down the line.

    Actually, it smacked me square in the forehead today. Boo *won't* qualify for SSI/Medicaid when he hits 18. If us paying medical bills, etc., counts as "income" for him, he makes more than *I* do, LOL.

    Solved that problem. One less thing to worry about. But it was a good exercise in terms of thinking more long term. Again, thanks for the input.
  5. OTE

    OTE Active Member

    Sure he'll qualify, the trust will pay those bills, not you! You put the money in the trust and the trust pays the bills. Do something like put your tax refund in there to start it and pay the first bills. Then put what you would have paid the bills with in the trust and get him on SSI and Medicaid so there's actually no bills anyway! The housing and food when he lives with you is not treated the way it is when he lives alone as does Fran's son. It doesn't count against him but he gets a much lower amt because he's not responsible for his own living expenses. But then, cash wasn't the reason for applying!

    Do read through the SSI general info on There also a quick questionnaire online to figure out if someone qualifies.
  6. Fran

    Fran Former Site Owner

    OTE, there was a seminar by the group that manages the apts. where my difficult child lives. We were told if we use money from a trust for non covered items, it still counts as income difficult child received and will be held against him.
    Ex) if it is used to supplement his SSI to cover groceries, it is considered income.

    Slsh, if boo needs to start paying rent at 18(tell them yes)then the money has to be paid out of his account to you and husband. What you do with the money is your business. You can put it in trust as OTE suggested. If you buy him clothes, then it can be paid from this account. It can help with some expenses.
    Our son's check covers rent,electric and basic utilities. We gift him cable and cell phone. (pay directly to the provider- no money to difficult child). difficult child will have to document that he is paying us back a loan for some financial assistance we gave him in the past year.
    He uses one of our cars. Nothing is in his name. He has no savings.
    It's very confusing and a lot of aggravation but it will help not penalize your other children and your retirement by all available money going for the care of one child.
    You absolutely have to think long term. None of us will be here forever and if we have a child that will need lifelong support(financially as well physically) then we need to start that process as soon as possible.
  7. OTE

    OTE Active Member

    Interesting Fran. But how can the SSI cash be specifically determined to be "for" one particular bill? And certainly SSI is meant to cover groceries and utilities. I'll think about it.
  8. Fran

    Fran Former Site Owner

    I'm not sure what you mean by SSI cash be determined for one particular bill?
    It's for shelter and basic survival needs. medications, groceries,rent, electric and basic clothing.