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Gary Iler is a resident of Summit County in Ohio. He and his wife Maureen have a daughter, currently twenty-six years old, who has a dual diagnosis of autism and cognitive disability. Gary has been through the maze of supplemental security income and he has developed this presentation to help families and guardians who have the responsibility for a child or sibling who has a disability.

What is Supplemental Security Income or SSI?

SSI is a federally funded income support program; it’s administered by the social security administration. It provides a monthly cash allowance to qualified persons who are either over sixty five year old, or blind, or who have a disability, mental or physical.

Can all Individuals with Disabilities qualify for SSI?

Younger individuals under eighteen can qualify. However in those cases the parent’s income and assets are always taken into consideration. Depending on how much the parent’s earn or the assets they have, the individual with the disability could be disqualified. So the typical candidate I think, is an individual over eighteen years old, can be single or married, if they’re working they may provide money towards their own rent, or their own cost of living expenses.

What is SSA’s definition of "Disability"?

Individual must have a medical determined disability that is expect to last more than one year. Obviously in that case, doctors have to be present and have given that diagnosis. The social security administration can determine right from the outset that the disability is permanent and it’s lifelong, in which case there may never be a review of that person’s disability again. In other cases they do have the right to review it periodically, maybe more medical test and things like that. So you should be prepared for social security to do a re-evaluation, or they may call it a re-determination of the individual’s disability.

What are the income and asset restrictions related to SSI?

If the individual happens to work, social security has a term, it’s called substantial gainful activity, and that basically the amount of money that the individual earns. In two thousand and seven that amount was nine hundred dollars a month. In terms of assets, social security refers to those as resources. The assets would be cash, bank accounts, cash value of life insurance policies, stocks or bonds, if the individuals own any. The asset limit for an individual is two thousand dollars, any combination of those things I just mentioned. If the person happens to be married to another individual with a disability, the couple’s limitation is three thousand dollars.

How does one apply for SSI?

If we’re talking about an individual under age eighteen, obviously the parents or guardian will go with the person. The first things social security is going to do is check the income and asset levels of the parents. If those are above the limits allowed it’s going to be a very short meeting, social security will say the individual does not qualify, SSI is denied, the meeting ends. But if the younger individual the parents income and assets or below the level or if the individual is over eighteen, social security will start the interview process. They will go through the documentation, that you’ll have to bring to the meeting, we’ll go over that in a minute, and start the process of determining whether the person qualifies or not. If the person is approaching age eighteen, I suggest that you call the national office at 1-800-772-1213 and make an appointment at your local office. Sometimes it’s impossible to get through to your local office, that’s why I suggest you go through the national office. When you do that have the address of the local office that you want to go to; just to make the national office makes the appointment at the right office, where you actually want to go.

Should I take my (or sibling, etc.) to the appointment?

Social security will probably tell you it’s not necessary. I strongly suggest that you do just the opposite, take the individual with you. The reason for that is, during the interview by the social security representative, he or she will observe the individual with a disability, may even ask that person some questions, to see how able they are to respond. Obviously if the person’s not there, social security will have no basis from an observation standpoint. I’ll give you an example, a good friend of mine asked me how should he apply for SSI for his daughter, I gave him some of the things we’re talking about today, with the advice take your daughter to the meeting with you. He chose not to do that because the daughter was busy. He gets to the meeting, he’s by himself, the documentation that he took with him was not totally what the social security representative needed, didn’t have the opportunity to observe the young individual, and proceeded to put the young girl through four months of testing, during which time SSI had been delayed. She finally got approved, but it was four months after the fact, and there is no retroactivity on SSI benefits. So if you take the person with you, you have a better chance of at least keeping the process going quickly.

What documentation should I take to the application meeting?

First the social security card of the individual who’s applying. Birth certificate, make sure it’s either the original or a certified copy, don’t just take a photocopy of the original. Proof of the individual’s income, if they happen to be working. Proof in this case would be copies of pay stubs and things like that, take about ninety days worth of paystubs, because they’re going to see a trend of how much the person earns. Proof of resources, or proof of assets. If the individual has a bank account, take the bank statement with you, if they have a life insurance policy, take that with you. If they own any stocks, any bonds, take that information with you. Proof of guardianship, if the parents are there, and they are the guardians, or it’s just a plain guardian, there’s a letter that says I am the guardian for this individual. Proof of living arrangements, and this gets a little difficult. If the individual is living at home with his parents for example, the parents must charge the individual room and board. If they don’t social security is going to determine or declare that the lack of room and board is income to the individual and they will subsequently reduce that person’s SSI. So you’re probably going to be asked as a parent, do you intend to charge your child room and board since he/she’s living at home with you, you must say yes. If you say yes, then they’re going to say how much do you intend to charge. Let’s say for example people live at a home that they own, their mortgage payment is a thousand dollars a month, their utilities are two hundred a month, they spend three hundred a month on food and household supplies, that’s fifteen hundred dollars total to maintain the home and food and that. The individual applying for SSI lives with his two parents, he has a brother and he has a sister, so it’s a family of five. So the individual applying represents twenty percent of the household. So in this case, you would take twenty percent of the fifteen hundred dollars that it cost to maintain the home, and say three hundred dollars is this individual’s room and board. If people rent an apartment or a home that’s nine hundred bucks a month, that includes utilities, they spend two hundred and sixty dollars a month for food, and there’s four people in their family including the one with the disability, that would be twenty five percent of the total, or two hundred and ninety dollars a month. So you should have a little worksheet at the meeting with social security showing how you arrived at what you intend to charge for room and board. If you don’t do it, they’ll do it for you. Also you want to take medical reports regarding the individual’s disability. The more you have the better. The more detailed they are the better. They must explain why the disability prevents the person from performing substantial work. Also have the names, addresses, and phone numbers of the doctors, therapists, anybody who has treated the individual. It is likely social security will contact them, so you might want to call each one of them and tell them social security may be calling you about this application for SSI benefits. Also if you have letters from your teachers or employers, if the individual’s working that say the disabilities this person has prevent him from doing certain kinds of work. Lastly as part of what you want to bring, when you’re talking about the individuals abilities, as parents pride always takes over, we all tend to embellish what our children are able to do, this is the last thing you want to do in front of the social security representative. Just tell it the way it is, swallow your pride and tell them what your son or daughter is not capable of doing, don’t embellish it.

What happens during the initial application meeting?

If the applicant is under eighteen, like we said before, the SSA rep will do the income and asset test and if it’s above the limits the meeting will end, it it’s below it will go on. And if the individual is over eighteen then the meeting goes on automatically. The SSA representative will check the paperwork that you brought with you to the meeting, and make sure everything is there that he or she thinks she needs to complete the file. If there is anything missing, the SSA representative will make a list and tell you to go get the missing items, or he or she may even help you get the missing items. So once that is all complete, and typically you can fill in the missing items, if there are any, without another meeting, just by getting the stuff and mailing it down to your representative. Anyhow, when the file is complete to the social security representatives satisfaction, they will take that file and send it off to the disability determination section of social security. Which is a separate entity from the people you will be dealing with at the local office. Those people will look at the file and try to determine the following thing, does the individual have an impairment that severely limits his or her ability from doing substantial work. Does the impairment meet what social security calls the listed impairment requirements, that could be a muscular problem, respiratory problem, cardio vascular, neurological, things like that. Was the individual able to work previously before the disability, or not, sometimes that’s hard to determine, and can the individual do any other kind of work versus what they were doing previously. If the disability determination entity thinks there’s stuff missing, or there is information that could supplement the file they’ll ask for it, and the parents or guardians will be required to provide that. Finally the disability determination section will say yes this person qualifies or no they don’t. And if it’s yes, in about three or four weeks benefits will start. If the answer’s no, then that process stops at least at that point.

What can the individual do I he/she is denied SSI?

There are four steps of what they call the appeal process. First is a reconsideration, that’s where another person within this disability determination section will look at the same file, that the first person did. That second person may ask for more information, may not, but the second person in that same organization will say O.K. I disagree with the first person and I’m going to approve benefits. Or I agree and benefits are denied. If the denial happens then you can ask for a hearing and that’s in front of an administrative law judge, who will do basically the same thing, look at the file, ask for more information if they deem it necessary, and make a decision, yes benefits will go forward or no I deny this also. After the second denial you can do what you call an appeals council review. Where an entity above the administrative law judge looks at the file and says no I think there are things that have been missed, send it back to the administrative law judge section for another judge to look at. That person has a right to ask for more information, or if the information is complete, say benefits should be paid, or I deny this also. So after that denial, the last recourse is a lawsuit in the federal courts. This is extremely costly; and the likelihood of a court hearing ever happening is unlikely. It’s probably not something you really want to entertain doing because the chances of getting SSI approved in a federal lawsuit is probably not worth the cost.

If SSI benefits are approved, how much will the individual receive?

The full amount, at least for 2007 was six hundred and twenty three dollars, for 08 it’s six hundred and thirty seven dollars per month for an individual, and nine hundred and fifty five a month if it happens to be a couple. The couple amount is typically one and a half times the individual’s amount.

What would cause the full amount of SSI not to be paid?

If the individual earns, has a job and earns a nominal amount of money, maybe they work in an MRDD workshop, they make sixty dollars a month. If the income is at that level then there would be no deduction from the SSI amount. If however the individual has substantial employment where they make a reasonable amount of money, there could be a decrease, or there’s going to be a decrease in the SSI amount. If that happens what the parents or guardians have to do is each month send copies of the paystubs in to the social security representative who is handling SSI for the individual. They will go through a calculation that will determine how much of the SSI has to be taken away because the individual earns too much money. First and foremost right off the top there are two exclusions that social security allows, one is twenty dollars a month, they call that the general income exclusion and that’s for whatever the individual want to use it on, and then the second one is sixty five dollars a month that’s called the earned income exclusion. So let us say for example the individual made five hundred and five dollars of gross wages in a particular month. The first thing that social security would do is subtract twenty dollars the general income exclusion, then they would subtract the sixty-five dollars for the earned income, so the amount of money that they are looking at at that point is now four hundred and twenty dollars. What social security does at that point is divide that amount in two, so in this case four hundred and twenty divided by two is two hundred and ten dollars. They would take away two hundred and ten dollars from a future months SSI for that individual. So lets say we’re talking about January, the individual earned five hundred and five dollars in January, at the end of January the parents or the guardian would have to send in the paystubs to social security showing that the individual earned five hundred and five dollars. Social security would go through this calculation that we just talked about, determine that two hundred and ten dollars has to be taken away, and it would come out of March’s SSI, not February’s. Because by the time social security gets the paystubs and does their calculation, February is almost gone. So the parents or the individual will get a letter saying for the month of March we’re going to deduct two hundred and ten dollars. So if six hundred and thirty seven dollars is the full amount, the individual would receive four hundred and twenty seven dollars of SSI in the month of March. There’s also another exclusion that can happen, if the individual has expenses that meet what social security considers impairment related work expenses, the short version of that is an IRWE, and those types of expenses can be for an attendant to get the person ready to go to work each morning, get him or her dressed, hair combed and things like that. If the person requires transportation to get to and from the work site, that could be considered an IRWE expense. If there are medical devices like a wheel chair that are necessary to allow the person to work, that could be an IRWE expense. Of if the person needs a job coach, or supported employment person, that could be considered an IRWE. So these can be one time expenses, or ongoing monthly like transportation, a job coach, that would be ongoing. You can approach social security with these types of expenses and ask them to approve them as an impairment related work expense. If they do, then those expenses would also come off the calculation that we just talked about. In the example we used before, we had four hundred and twenty dollars after the twenty and sixty five dollar exclusion. In this case let’s say that IRWE was one hundred dollars for transportation. That would then come off the four twenty, leaving three hundred and twenty dollars, divided by two, that’s one hundred and sixty bucks. So six hundred and thirty seven full SSI becomes four hundred and seventy seven dollars for the month of March. I know this is very confusing, if you look at the worksheets that are linked to this (webcast) I think it will become clearer. It’s not difficult, but it is confusing.

If the individual is not capable of managing his or her own finances, how will the SSI benefit be handled?

During the application meeting the social security representative will determine probably the individual can’t handle their own finances. If it’s a physical disability, and the person has the mental capacity they may be able to handle it themselves. But if it’s a mental and it’s not possible for that person write checks, balance a checkbook, or things like that, social security will look for someone to be what they call a representative payee for that person, typically it’s a parent. So they’ll ask is there someone who can be the representative payee for this person and if you say yes I’m the father I can do it, they may ask you to prove what makes you capable of doing that. And you want to respond by saying something to the affect that hey I’m a responsible individual, I’ve maintained my own finances in good order and I have my child’s best interest at heart, and they’ll say fine. So you’ll be labeled the representative payee, what happens then, anytime a letter comes out involving the individual, the individual gets a copy and then the representative gets a copy, exact same copy of what the individual gets.

How will the SSI be paid?

SSI or social security will undoubtedly want you to open up a bank account versus mailing a check, and I strongly suggest that you do it and make it a checking account because you’re going to be writing checks out of that account almost as soon as the money arrives. But they will tell you very explicitly, and you might want to do this before the meeting, have the account ready, let’s say for example my name is John Smith, my son’s name is Robert Smith and he’s the one with the disability, the bank account must read John Smith for Robert Smith at my address. So that tells social security the account is really for Robert, but John, me is handling the account. Like I said, try to have that account opened before you go to the meeting, because if you don’t it will just delay things, that will be one of the things that you’ll have to provide. Lastly, if you can, open up a checking account that has no minimum balance fees, because there’s going to be times when there’s going to be very little money in the account and you don’t want to be paying five or ten dollars a month in a bank service charge, because the balance of the account dropped. Most banks have something that will suffice, you won’t earn any interest, but you won’t have any fees either.

What can SSI be spent on?

There’s a variety of expenses that can be used, one is room and board, as we talked before, that is mandatory, have to charge room and board. Clothes for the individual, medical expenses, recreational or social activities, go to a movie, do this do that, vacations, and if you want respite care the money can be used on that also. The social security representative will probably ask you, what do you intend to spend the money on? I suggest you list the things that we just talked about, and other things if there are things that your individual’s life that would qualify. But you want to give the impression that all the money is going to be used for that individual’s wellbeing. If you say I’m going to buy clothes for my kid instead of using SSI money, social security may value those clothes as income and reduce social security. You don’t want that to happen. Now gifts like at Christmas time or birthdays, sure parents are allowed to give gifts to their kids. But the crux of the whole process is, this SSI money is going to be spent almost entirely on the individuals health and wellbeing.

Are there any record keeping requirements for SSI?

Definitely. What I suggest you do, and it doesn’t have to be fancy, but you have a bank account and you’re going to be writing checks. And if you have a medical bill that you need to pay, you’re going to have an invoice, write a check, try to make a photocopy of that somehow and keep a record, I wrote check number one for medical supplies, or a medical appointment. I wrote check number two for room and board, and that check would be from the individuals account back to the parent, representative payee. Keep a file, keep a spreadsheet, check number one was for this, check number two was for this, three, four, and five. Because at the end of the individuals, what I call the SSI year, what I mean by that if benefits started March, the individuals SSI year is going to be March of that year through February of the following year. So it’s going to be twelve months, but not necessarily a calendar month. So keep a record for that twelve month period, I spent this much on room and board, this much on clothes, this much on medical, etc., at the end of the twelve month period, and every twelve month period about three or four weeks after the year ends, social security will send you a report that the representative payee or the individual, has to fill out. It’s not difficult, you have to provide two numbers, I used this much money for room and board, and I used this much money of the SSI amount for all other expenditures. So it’s room and board, and all other. So you want to have that breakdown. What you want to try to prevent, is at the end of any SSI year having a large amount of SSI left over, because if that money lays there too long, social security is going to determine that you don’t need all that money, and a year or two down the road, they may say O.K. we’re going to take some of that back. So as long as the expenses or legitimate, spend as much as you can on the individual him or herself. When the year’s over, you finish that little report, and you’ve mailed it off to the social security office. Take the report, the little spreadsheet if you’ve kept one, all your invoices, all your cancelled checks, throw them in a big envelope, and save them, unfortunately, for seven years. Because that is the time period I think that they’re allowed to ask for a review. It is possible that social security will want to audit your records, so you want to have as accurate and as complete records as possible, and my instincts tell me that if they happen to audit and your records don’t exist then they’re probably going to start talking about taking away some benefits.

Any final comments regarding SSI?

Depending on who you talk to, SSI can seem very complex. But what I have found is if you study it, and you understand the formulas, that social security is going to use especially to make deductions out of SSI in the case where an individual works. Once you understand those, then it’s really not that complex. There is some record keeping, if the individual works each month you’re going to have to photocopy paystubs, mail them in, which takes time. So the whole process can be a little intimidating on the front end, but if you study it a little bit, and know what to expect, it’s really not that hard.