Perceptions of policies and programs and their impact in supporting employment among individuals with spinal cord injury

The school I went to had a special-needs class. Of course, with me having a disability, being in a wheelchair and all, I went to all regular classes. But my homeroom had other students with disabilities. So there were all sorts of discussions, networking like Goodwill, a lot of networking things especially me being a senior in high school. I was only here for my junior and senior year of high school, so I was already prepared to know what you want to do. We had networks that you could get connected with.

So I started college, but [the Rehabilitation Hospital I went through] was very good about setting me up with the best places for handicapped student to go. Then they hooked me up with vocational rehab to help pay for some of that stuff and let me know what they could do for me in school. But the schools, since I was injured in ’89 and was going back to school in ’91, I’m lucky because I got the benefit of where you all have been. Colleges were good for handicapped students, having dedicated people who would find note takers to make everything easier for you. That happened for me...

In [STATE NAME REMOVED], there was no PCA program. Voc rehab said they would pay for a PCA for $500 bucks a month if I’d go back to school. So I went to school not for any reason. After 3 years, I started doing computers and got a computer science degree in 1985.

Vocational rehab, what they do is try to match your skills and education. Even if you don’t have the educational background, they still try to match what skills with what you’re interested in doing with transfer and being able to see if you can adapt to the job you’re interested in.

Voc rehab does have a tendency to pigeonhole people. If you want to break out of that, you have to fight hard to do it. I was told early on that I could probably make a darned good receptionist. Not that it isn’t a great position, but I was 17 and wasn’t sure what I wanted to do with my life, and they were trying to guide me into...

I went through Projects with Industry.... They found me a job in [CITY NAME REMOVED]. My friends I graduated with were getting jobs for $30,000, and I finally found a job for $17,000 through projects with disability with a higher GPA and a disability. Back in those days, it was different than today.

But [name deleted] called me, because I let her know what was going on. And probably like a week they let me go because I told them I wasn’t pursuing a criminal justice degree, she called; and I was introduced to [NAME DELETED], who was over Home Depot. They had a position there in their security department, so I was hired.

Ronnie: An employment agency. That’s how I got my first job. I heard them on the radio. I called in on the radio show. She gave me her number and said call; so about a month later, she had me this job.

Joshua: I found VR was helpful getting me back to school and through school, but when school ended, VR ended. They encouraged me to find a job because, if I found a job that helped them in [STATE] because they need numbers to support their success. The problem was they had no help for finding a job. That left that completely up to me.

Milton: When I moved up here 2 years ago, when I moved to Atlanta, I used them to try to find a job. But like everyone was saying, they were so slow; they were taking me through the process of trying to find jobs that match me. I know what jobs that match. I have my masters in a field, but they still had me going through the long process. I just got on the computer myself and started searching for jobs because, by going through their process, it was just taking way too long.

Personally, I have outgrown Voc Rehab. Once you get to that point where you’ve outgrown them, you can see other things you can start doing for yourself. Like right now everything is computer based now, and you can start looking for jobs on line. But if you’re that person that needs that guidance or pointed in a direction, you can vocational rehab to your advantage.

So he got me going through Goodwill. I went through the Goodwill program. I finished school, but I wanted to tighten my skills, so I went through the adult training at Goodwill for about six months, and Goodwill hired me as a receptionist.

Allen: I was 17. I moved to Georgia in ’94 and finished school, graduated in ’96, and I also was employed when I graduated. I was part of an internship program, which I was being paid for, and I was working with Georgia Bureau of Investigation.

It was a three-month program, and they paid the $300 stipend. Then the Department of Labor ended up taking over that pilot program where they would put you to work. Then if you worked out, they liked you, then they give you a full-time job.

That’s right. That’s how I got the job to start with. It helps get you in the door. That way, you don’t worry about hiring you, and paying you. It got to where a lot of these companies were just using you for free help for three months.

I used Voc Rehab originally. They supplied me with computers and voice-recognition software and all that kind of stuff so I could go to school. Then when I found this PASS program through Social Security that was a much better deal. I used the Pass program to buy myself a vehicle and lots of good stuff.

And with an electric chair, it’s like an automobile. It will go down on you when you least expect it. This was my first problem when I was working. I only had one chair, and when it went down, I had push chair, which, me being a quadriplegic, I wasn’t able to push it too good even if I had somebody to come get me. So that was another problem.

Help you maintain it...I hooked up with a church called [NAME REMOVED] Christian Ministries. They came out and interviewed me to see my situation. Gave a check to agency I needed help from for $2,000. So [NAME REMOVED] Christian Ministries was a major help because they helped me with medication and my life because I wanted to do little things at that time, so [NAME REMOVED] Christian Ministry helped me as well. So now I don’t actually have two chairs. I have three chairs! So one go down, I can get in another chair.

Eloise: After I started back work the last time in ’86 I believe, I didn’t become depressed, but I was having to depend on people at work to help me get in and out of my vehicle because I didn’t have a van then. So I called vocational rehab and said, “What can you do help me?” “We can get you a lift.” And I said, “What about a car?” and they said, “No, we can’t get you the van, we can get you the lift.” So I pursued that, and they helped me get a lift for a van. I had to buy the van. But that was like the load lifted that I needed totally. So they did help me with that part.

Raymond: Also they [Goodwill] would take care of a ride or provide transportation, they would take care of that. They would give you a MARTA card or van transportation. They would make sure you got there and make sure you got home. It was a great program to go through.

Sabrina: I use it [Metro Mobility paratransit system] on a regular basis and have for about 21 years. Efficiency and getting someplace on time if you’re not a planner, 60/40. To get to this meeting today, I left my house at 10:20 for a 12 o’clock meeting. Two other people on the bus and other issues. You have to think of the time of day you’re traveling on the freeway coming from St. Paul. There are several people who have jobs who have standing orders like she does. Their only transportation is Metro Mobility. Even those who have those standing orders will sometimes get left at their job a half an hour or get there a half an hour late.

Allen: To maintain any job, paying or volunteering, it’s about your drive but also it does start at home because in order for you to get out of your house every day, you do have to have someone dependable as far as a caretaker is concerned because, if something goes wrong (I got stories for days), it’s a domino effect. ...And, as far as my caretaker is concerned, which I’ve been fortunate, but we’re all human. People get sick, emergencies happen; so I do have two caretakers, and they’re paid through a program.

There are none. The only one is a Medicaid waiver [ATTENDANT CARE MEDICAID WAIVER]. Right now, you can’t buy an insurance policy that will cover morning and nighttime personal assistance, getting out of bed. The only way you’re going to be able to do it is basically have your job that has...When I worked for the bank, they had a self-insured plan, which they can buy over and beyond what your policy states, a self-insured plan. But that’s one of the problems why you can’t people hired because they’re afraid their insurance is going to go up, so they don’t want to hire you.

I want to say this right here: I know they were saying about the financial thing, I know my bills were high when I went to the hospital, I had Medicare; but they would give Medicaid, and they would pay my bills. You would fill out these forms in the hospital, temporary Medicare, and they would pay the bills. They took care a lot of my bills.

Being able to use Social Security work incentives in a way that will provide some of that support at the job can be important in terms whether or not a person is able to maintain a job. ...So you can earn well above the substantial limit but still, because of the supports you need, have the safety net of Social Security while you work towards getting off Social Security benefits or maximizing your financial independence through using those work incentives.

During that time he was going through the disability, we weren’t married. Now that we are married, he can’t get Medicaid because my mother, who passed away, left land; and so they say I need to sell that land to pay for his doctor bills before they’ll help us. It’s been passed down, and I don’t feel that’s fair policy. I’m afraid for him to go to work anywhere because he doesn’t have insurance. They call the ambulance so much. Where we live, if he needs to come to Atlanta, instead of calling the ambulance, they call the helicopter. It lands at our house.

Right. For a lot of people, I wish there was something in between. It would be great if there were more of a trial period, because the fear of losing insurance is huge for people. And if you make X amount of dollars, you’re going to lose it; and that means, even if you make a buck or two more. So it’s got to be an even trade-off.

I’m agreeing with her because you get a job and trying to get a job to better yourself, but the job you have you’re not getting as much money as you should but you’re still getting your disability. But then you make a little bit more, then they cut it off. Then you lose your job, and then you got to go through the whole effort of getting the Social Security and going through a lot of trial and error.

I believe that Social Security work incentives are huge in terms of people going back to work, especially people transitioning from a non-skilled position into a skilled position where they have that opportunity to use those work incentives over time to get into the workplace.

For me, reasonable accommodation, particularly in traveling, I probably can figure a way to travel and be responsible for compensating the person who travels with me because, with my limitations, I always had to have someone travel with me. But because of reasonable accommodations policy or law, my employer paid for someone to travel with me.

I think about in the Americans with Disabilities Act, is amazing. I remember not being able to do tons of stuff. I couldn’t go to public school! They shipped me away to crippled children’s school. It’s a whole different place now. You have rights toward employment, rights written in the law, so you can pursue a lot of opportunities.

More than policies has been attitudes of people involved in rehabilitation and the attitudes of employers. Fortunately, I came along at a time when there was more emphasis on employers providing people with disabilities equal opportunity. There was Title IV and the ’73 Rehab Act, which was not the strongest law; but that and the attitude began to help change attitudes to get people to look at their own attitude. Even though there’s a downside to the study, people would hear about disabled people making better [employees], so there was an upside that probably opened some doors.

Employment is a little different now than 10 or 15 years ago because people are savvier about the different kind of disability so to lump everybody into one doesn’t work. Employers are a lot more responsive. Plus, as Collin said, ADA is the law of the land.

My boss, who is no longer there, was discriminating; so I went to the EEOC about it. They investigated and found out things that went on at my job that he did that wasn’t right. ...I already had my job; but when they investigated, they found out. I wasn’t trying to go for the money; I just wanted to work without being harassed. They got rid of him, and I got his job.

For most employers I have worked with over the last 20 years or so, in terms of hiring an employee with a disability, it’s not about how much it’s going to cost to make accommodations or the tax credit. It’s always been about are we getting a qualified individual to do this job. As someone mentioned, just because you’re a person with a disability doesn’t mean you’re the best employee for the program. The ADA doesn’t state that. A lot of individuals with disabilities think the ADA is going to guarantee them a job. It just guarantees you can’t be discriminated against because of the disability.

And like I was saying before, I got hurt in the late 80 s. Trying to get a job back then was more difficult than now because you had ADA but a lot of things weren’t being done like [MASS TRANSIT SYSTEM]. If you wanted to catch a bus back then, if the bus came that didn’t have a lift, you had to wait for the next bus to come that had a lift. Now all busses have the lift. Or the elevator might not be working, so you got to wait for them to fix the elevator. Then you’re late for the interview; and they figure if you’re going to be late for the interview, you already in a wheelchair, he’s going to be late all the time. They don’t take into consideration certain things.

Anyway, we keep going on. I’d like to mention the tremendous change in accessibility over the many years I’ve been working. Sometimes changes to accommodate people were made relatively easily and not too much work was really involved. And sometimes it was made a major deal, which I don’t think was necessary.

Well they had this program called 1619B, but nobody knew about it back then. This was ’85. I never heard of it back then. It was on the books; but Social Security never brought that up to me. So I am working, and the more money I make, the less I make. It started making think working isn’t such a good deal even though I like to be busy. I thought I was losing money. I’m a little bit of a slow thinker.

Jeffrey: If you go to the Social Security website, it’s a sea of information. It seemed like I got pointed in one direction; and sometimes after the fact, it’s like, “Oh, you should have done this or that.” It would be so nice if there was something where everybody was spelled out. In my mind, I needed a human being sitting in front of me that knew everything. Somebody who had been through the system that would educate you.

But it was the connection and relationship with these individuals that made them believe in me to go forth and do your thing. So networking is really important whether they had support from public programs or whatever.

It goes back to networking. Bringing this group together is maybe beneficial to [STATE] and helps some folks younger to find their way. But I think it’s important for all of us to stay networked as well with what we’re doing. There’s a whole lot of information at this table. One of us knows something about it.

One thing that’s important for all of us who are looking for employment is to be a self-advocate because my needs are going to be different than someone else’s. Even though we are all categorized as somebody with a spinal-cord injury, self-advocacy is one of the most important things. You can do it in a nice way where people will want to help you. It depends on your tone and body language. It’s one of those things we have to be conscientious of.

When I was at the University of [NAME REMOVED], which is extremely hilly, they had a van program that could drop you off at your classes. When I started working in Atlanta, you can imagine the parking situation; so I looked up their accommodation policy. I talked to them, and they paid for me to park across the street until I was promoted and got the good parking. But I advocated, pulled the policy, took it to the next step, and did it appropriately. They thought I would be a good employee, so let’s try to work it out.

I was injured in 1981. The rehab act was already kind of a policy. ADA came along a little bit later. I never experienced any discrimination from employers or community. What I did notice was that if there was something I wanted to do somewhere that was inaccessible, that it was not up to some policy to bring that to the attention of the employer or manager. It was up to me to mention that. Because of people with disabilities, along the time of the mid-’70 s, early ’80, making themselves more visible and raising voices individually and collectively is what brought about a lot of the policies that people who had disabilities later are benefiting from.