Research on Employment Supports for People with Disabilities: Summary of the Focus Group Findings. Social Security Disability Programs

Many, if not most, of the focus group participants had received at one time or another, or were currently receiving, SSDI or SSI disability income. Unlike access to health insurance, which participants nearly universally identified as a necessary support, perception of the value of SSDI and SSI varied. A number of participants reported that income support programs had been absolutely critical in keeping them on the path toward employment, while others described SSDI and SSI as insufficient and valuable mostly for the access to health insurance they could provide. Participants in Los Angeles ranked public income assistance programs more highly than did participants in Newark or Seattle/Tacoma (Exhibit 1). This may be due to the lower incomes of Los Angeles participants, which made SSDI and SSI relatively more attractive in Los Angeles than in Seattle/Tacoma or Newark.

As noted above, a number of participants reported that income support programs had been absolutely critical in keeping them on the path toward employment:

  • "I wasn't sure whether I could make it. Social Security, SSI, SSD[I], provided funds for me."

  • "I had to get SSI because I couldn't survive without [it]."

  • "SSI, must have it."

  • "I'm scared that I'm not going to make it and so support of the SSDI is very important because I'm single."

More typically, however, participants expressed ambivalence about the benefits. Among those who had received, or were receiving, SSDI and SSI, most were grateful for the income the programs provided, but were unhappy with the amount of the benefit, or with the earnings restrictions associated with the benefit. For instance, one participant with chronic back problems said that much of her desire to return to work came from the fact that she was not making enough money on SSDI. Another participant said that while SSI was helpful, it was not enough to live on with a family. A third person said that SSDI benefits were not enough to live on, and that the low benefit level motivated her to get a job. In general, participants' comments echoed a major concern: SSDI and/or SSI benefits were not sufficient to live on, but fear of loss of benefits discouraged work attempts for some, and for others the benefits disappeared too soon after first work attempts were made:

  • "If you're trying to work and stay on SSI or SSDI, you have to deal with spend downs. You can only make so much money before they take away your SSI or SSDI benefits. You have to pay out-of-pocket for your medication or your therapy. For a while, I had to work two years, part-time, just so I can stay on benefits. It was hard to get off the government assistance. A person could try to work for 30 hours a week and still get benefits."

  • "I had to stay working 20 hours a week at $5.50 an hour, just so I can still get SSI or SSDI. It makes it hard for you to get into full-time work. It's like a crutch or something."

  • "With SSI, you can make some arbitrary amount [that] you keep.[Then,] every month, you've got to report how much you made.[And] you give the Federal Government a dollar back…for every two dollars you make. Where is the incentive in that? What person is going to go out and work [at] something that they are capable of at whatever level and have to give half of it away?"

  • "It seems as though when you do work, you're penalized for it. They cut your monies and I don't understand it. It really puts a damper on getting better."

  • "I'm very angry with Social Security. I'm angry with DSHS. Those people do not want you to get well because it would cause them too much bureaucracy. It's pretty depressing."

  • "I have SSI. If I go up to 30 hours -- I'm at 20 right now -- I will lose it. Yes, I want to eventually be totally out of the Social Security system because the Social Security system unfortunately keeps people who are on it at an impoverished level because I have to report all my income into SSI. Any kind of fluctuation with my income will take my SSI up or down."

  • "My family was earning $1,000 above the level for funding, so half the funding for school came from DVR and then I had to work. When I got to college, I applied [again]. They wouldn't give me SSI until I was about 20… I was on SSI for several months and I thought, this isn't worth it because every time I would get a bigger paycheck, I'd get lower Social Security, [and if] Social Security went up, I'd get a lower paycheck. I learned more from work then I did from getting Social Security, so I got rid of [it] and just maintained my work ethic."

  • "I'd rather work at the school and help them out there than [do nothing] for an extra hour a day just to satisfy Social Security."

  • "I want to drop my SSI, I want to drop all that stuff right now. [Working has] been real good for my self-esteem because it's good being independent instead of waiting for a check to come in the mail…As far as moving off it, I'm all for it."

  • "I didn't have SSI in the beginning and when I did finally apply because I had worked so many years it was more or less disability insurance. [But] SSI would actually have held me up because they tell you can [only] make so much money. So I had to drop SSI. If you go and work then you're being penalized, [but] you really can't afford to not work. Anyways, I didn't stick with SSI. I ended up dropping it, so and going out on my own and [getting] a part-time job."

  • "If I earn over $700 a month, and SSI is cut off…it gets to a point where you actually almost have to consider not working."11

In one focus group, all agreed with a participant who said that Social Security, Section 8 housing assistance, and other income-based incentives were always taken away just when they were needed most -- at first employment. At this time, said the participant, one does not have any savings and needs to have something to "tide you over more than ever before" for the costs associated with employment, such as transportation, clothing, and day care.

Participants across focus groups related numerous stories about SSI overpayments, including difficulty in identifying and resolving them. In some cases, participants were aware that they were receiving overpayments (due to eligibility or earnings), but they were unsuccessful in resolving the issue quickly, or at all, until the SSA eventually and independently identified the overpayment, and requested the money be returned:

  • "I went down there with a case manager and we reported everything. And they said, ‘Okay, everything's fine.' It's, like, you should be getting that money. And then so time goes by. I don't think anything about it and…like a year or something goes by, and another case manager says, ‘Wait a minute. You're being overpaid. You're going to have to pay all that money back.' And so I start to go, ‘Oh my God, it's going to be thousands of dollars.' And so we went down to SSI and they said, ‘Well, there's nothing we can do about it. You have to just put that money all in an account and just save it.'…But we came to the conclusion [that] if I had saved all that money, then they would have taken my medical benefits away from me because I‘d have too much money that I'm saving…They do it to everybody. And it doesn't help you get on your feet. It doesn't help you keep a job. I've worked very hard to get where I am, and I really don't think it's fair that I have a $7,000 debt that I have to pay back."

  • "I reported everything correctly and I get the response back, ‘Everything is fine. Don't worry about it. We'll inform you.' And then at some point, I got a letter saying, ‘Okay, well, you make too much money so the money benefit is now over. Sign this that you acknowledge and agree.' I did, I sent it back in. And at the same time, they send me another check…Must be my last one, that's fine. Then I get another check. And for about eight months, they send me a check…I informed them, ‘By the way, did you know you're still sending me money?' I don't hear anything back, but I get another check. I need the money, and obviously you either don't care or you've missed something. So I don't contact them. Then, over a year later, they contact me saying, ‘Oh, by the way, we've overpaid you. Now you owe us money.'"

Most recipients of SSI overpayments were eventually acquiescent regarding reimbursement:

  • "If they make an overpayment...well it's your mistake."

  • "I owed them about $3,700 by the time it was all over."

  • "I'm paying $10 a month for the next 19 years to pay back $2,300. They're taking it out of my Social Security."

  • "It's because I was working and [I was] on SSI. On my first check when I was on SSI, I was working and they sent me my retroactive and I was working all that time so I have to pay it back."

However, at least one participant found that by continually challenging the request for reimbursement the debt was eventually forgiven, a process that he likens to his initial application for benefits:

  • "SSI has [a] form…You just call them on the phone or look them in the face and say, ‘I cannot pay. What can we do?'…And they will eventually hand you that form. [Then] it takes months and months and months of resubmitting this same form over and over and over…It's just like applying -- this is the funny part -- it's just like applying for SSI in the beginning. You get the three denials, and then finally with enough people behind you, they'll finally accept it. [You tell them,] ‘I have no money. I'm incapable of paying this money back.' Denied. Start again. Denied. Start again. Denied. Start again. ‘Oh, okay, here you go.' It's the same exact process."