U.S. Department of Health and Human ServicesU.S. Department of Health and Human Services
This report was prepared under contract #HHS-100-97-0011 between the U.S. Department of Health and Human Services (HHS), Office of Disability, Aging and Long-Term Care Policy (DALTCP) and The Lewin Group. For additional information about the study, you may visit the DALTCP home page at http://aspe.hhs.gov/daltcp/home.htm or contact the ASPE Project Officer, Andreas Frank, at HHS/ASPE/DALTCP, Room 424E, H.H. Humphrey Building, 200 Independence Avenue, SW, Washington, DC 20201. His e-mail address is: Andreas.Frank@hhs.gov.
Work on this project was conducted by The Lewin Group and its subcontractors, Berkeley Policy Associates and Cornell University. The study was funded by the U.S. Department of Health and Human Services (HHS), Office of the Assistant Secretary for Planning and Evaluation (ASPE).
Staff from The Lewin Group, under the direction of Gina Livermore, conducted the literature review, developed the data collection methodology and instruments, prepared Office of Management and Budget clearance materials, conducted screening for the Newark, NJ focus groups, developed a database of the focus group findings, and analyzed and prepared the reports of the findings for this project. These staff principally include Mark Nowak, Julie Karp, Elizabeth Eiseman, Jennifer Duffy, and Mark Laidlaw.
Staff from Berkeley Policy Associates, under the direction of Sherry Almandsmith and Kay McGill, assisted in the development of the data collection methodology, pre-tested the data collection instruments, conducted the screening for the Seattle, WA and Los Angeles, CA focus groups, arranged and conducted the focus groups at all sites, and summarized the findings of each focus group session. These staff include Linda Toms Barker, Laurie Posner, Michellana Jester, Christie MacDonald, Susan Haight-Liotta, Laura Ellerbe, and Zinnia Ng.
David Stapleton of Cornell University provided technical guidance throughout the project and co-authored all project reports.
The project has benefited greatly from the input of a number of individuals: Bob Williams, Floyd Brown, and Andreas Frank at the ASPE Office of Disability, Aging and Long-Term Care Policy were instrumental in refining the scope and setting the direction for the project, and played important roles in shaping the analysis and presentation of the findings. At the start of the project, the input received from the project's Technical Advisory Group (TAG) greatly influenced the overall direction of the study, the focus group methodology, and the selection of the sites where the focus groups were conducted. The TAG members included: Ruth Brannon, National Institute for Disability and Rehabilitation Research; Henry Claypool, Administration on Developmental Disabilities; Judith Cook, University of Illinois-Chicago; Bruce Flynn, Washington Business Group on Health; Lex Frieden, Institute for Rehabilitation and Research; Claire Ghiloni, Massachusetts Rehabilitation Commission; Allen Jensen, George Washington University; Jennifer Kemp, President's Committee on the Employment of Adults with Disabilities; John Kregel, Virginia Commonwealth University; Doug Kruse, Rutgers University; Charlie Lakin, University of Minnesota; Pamela Loprest, The Urban Institute; Bonnie O'Day, National Rehabilitation Hospital Research Center; Becky Ogle, Presidential Task Force on the Employment of Adults with Disabilities; Alan Shafer, Social Security Administration; and Ed Yelin, University of California-San Francisco.
We also want to acknowledge the contribution of Michael Collins of the California State Independent Living Council (SILC). His organization funded a study in the Los Angeles area conducted by Berkeley Policy Associates using the focus group methodology developed under this project. The samples and findings of the California SILC study have been integrated with those obtained from the focus groups conducted in Los Angeles for this study.
We greatly appreciate the assistance of the many local disability organizations who provided invaluable assistance in recruiting focus group participants, providing locations to conduct the groups and staff to assist with on-site logistics.
Finally, we would like to thank the nearly 300 individuals who participated in the focus groups and so generously and candidly shared their experiences with us. Without their participation, the study would not have been possible.
The opinions, conclusions, and errors in this report are the sole responsibility of the authors, and do not represent the official views of the HHS, the California SILC, Berkeley Policy Associates, Cornell University, or The Lewin Group.
This report summarizes the findings from information collected during three sets of focus groups conducted for a study on employment supports for people with disabilities sponsored by the Office of the Assistant Secretary for Planning and Evaluation (ASPE) within the U.S. Department of Health and Human Services. The study is intended to increase the understanding of the role of various supports in helping people with disabilities find and maintain employment.
The findings in this report are from focus groups conducted with 284 participants with significant disabilities, all of whom had obtained a measure of employment success, in Los Angeles, California; Newark, New Jersey; and Seattle/Tacoma, Washington, between April and December 2000. The focus groups were conducted between April and December 2000. All participants were 18 years old or older, had a significant disability with onset prior to first substantial employment, and had annual earnings of at least $8,240 before taxes and transfers. At the time of the focus groups, the latter was the federal poverty line for a family of one.1 It is approximately equivalent to working 30 hours a week at the federal minimum wage. Basic socio-demographic, disability, and employment information was collected via a telephone screening instrument and a pre-focus group registration form.
A slight majority of participants were male, and their average age was 38 at the time of interview. Just over half (55 percent) had experienced disability onset before age 13. Just over half were single, 61 percent were white, 16 percent were African-American, and 13 percent were of Hispanic ethnicity. While all had substantial earnings, 23 percent had annual earnings below $10,000. Median earnings were under $20,000. Only 7 percent had earnings above $50,000. Many lived in households with other income; median household income was about $40,000. The largest impairment category was mental illness (30 percent), followed by communication (21 percent) and mobility (19 percent) impairments.
Prior to each focus group session, participants were asked to rank on a scale of 1 (very important) to 5 (not important) the importance of various supports in helping them find and maintain employment. About 75 percent (or more) of participants assigned a rank of 1 or 2 to each of five supports (listed in descending order): family encouragement; access to health insurance; skills development and training; college; and employer accommodations. Job coach services, personal assistance services (PAS) and special education ranked lowest, with more than 45 percent of participants assigning a rank of 4 or 5 to these supports.
We asked focus group participants to discuss supports that were important to them at three critical periods of their lives: during childhood or at disability onset; obtaining first employment or first employment after disability onset; and in maintaining current employment. We present the findings from these focus groups below. Because we found that the supports used to obtain first employment and those used to maintain current employment were very similar, we have combined the discussion of these topics into one section.2
In this section we describe the supports that focus group participants used during childhood, or at disability onset. Among the supports identified, special education and health insurance generated the most discussion. While health insurance was widely experienced as a positive support, special education received mixed reviews. Participants also discussed Social Security Disability Insurance (SSDI), Supplemental Security Income (SSI), assistive devices, self-motivation, and the support of family and friends.
Participants who developed disabilities during childhood commonly reported use of special education, and offered mixed assessments of its value. Among those who identified special education as a valuable support, a number noted the ability of the special education system to provide accommodations as an attractive feature. Other participants who experienced special education as a positive support attributed their positive experiences to special education teachers that challenged them, expected them to be productive, who were even willing to break rules to provide unconventional or additional supports or accommodations:
"There were these two social workers [on the school's Child Study Team]. One had been there many, many years. They kind of adopted me. They said, ‘If you're not going to come to school, then just come to see us at the Board of Ed office and we'll go over all the subjects with you.' They knew I was really smart, so they just gave me the homework…[I wouldn't have made it] if it wasn't for the diligence of this lady, who would basically say, ‘Just come over and bring a lunch.'"
"…I eventually did go back to school and finished, [but it was] with these people's help…They broke every rule in the book and I loved them. They were not supposed to take me out to lunch and to come over to my house. [Also, there's a limit on the] number of days that you could be out of school but they said no, he's got some kind of doctor's note or something."
Many participants also described negative experiences with special education, saying that special education programs provided no vocational classes or job opportunities; others said that their programs lacked basic instructional materials and teacher expertise, or that the programs did not otherwise meet their basic needs. Some even said that special education may actually have been damaging because it didn't provide education but was merely a place to "park" children with disabilities.
"Special ed was just a place to be…I was put there because I couldn't walk very well. I hated that. I was with other people who couldn't walk very well either, so we got to do other things that we were good at…and we played silly games…I never got any particular training."
"[I also] went to a [segregated] school and it was horrible. I did not get an education there. I went there from first grade through high school, and I hated every minute of it because most of the kids were -- I'm not sure how to put it -- severely emotionally disabled. I did not belong there. The teachers…they pretty much coddled us and would pat our heads a lot, you know, that kind of an attitude."
Among special education participants who were mainstreamed (moved from special education into regular classrooms), many were happier after mainstreaming was initiated, but said gaining access to necessary accommodations in the mainstream environment was a substantial challenge:
"I was actually the only one with a physical disability on campus. I was the only person in a wheelchair. Back then in high school, I started to do my own advocating for someone with disabilities. None of my classrooms were equipped with wheelchair ramps, so I [told] the principal that I would go to the city college. In other words, I was blabbering a lot of things that I didn't really know what I was saying in order to get action or to see some results. I did. I saw results. They started building ramps. I just started telling them I probably won't be the only person who uses a wheelchair attending your school, and it helped."
"Six weeks before the end of the semester I broke my foot and I was not doing well in first semester algebra. I had a teacher who always wrote equations on the board and didn't bother, unless he was asked two or three times, to [say] them out loud. So my mother calls to arrange for me to have a tutor the last six weeks. [The vice-principal] said, basically, ‘Well, what's the problem, your son is blind, he's not going to college anyway.' And my mother went off on him like Cher went off on the poor principal in 'Mask,' and said my son will either have a tutor or I will go to [the media]. Needless to say, I got a tutor."
Many participants (including users of both public and private health insurance) cited health insurance as critical to preserving their families' financial well-being, and to receiving needed medical services and prescription drugs. Many participants experienced some limitation in coverage (due to policy restrictions or switching plans) during childhood, which they said had been detrimental to rehabilitation. Other participants described difficulty securing consistent coverage through public health insurance programs.
Generally, participants were more likely to describe use of private health insurance than public health insurance during childhood, and those covered by private insurance were more likely to identify and discuss importance of insurance receipt as a critical support.
"I lived in the hospital. I always went to private specialists." My mom always said, ‘You HAVE to have insurance.'"
Some participants were assisted by charitable organizations that provided free or reduced cost medical care. For example, two participants said that the Shriners' Hospital paid for substantial portions of their medical services.
Many participants reported paying out-of-pocket for medical costs, if not covered by health insurance. One participant was deafened by a head injury and reported receiving little medical care at the time because her parents had to cover the costs. She commented on the lasting consequences of improper treatment:
"I didn't even end up in the hospital. I went right home the night of my head injury. [I didn't get] the right treatment at first, which is probably [the reason for] some of the damage to my left ear, because at first my father thought I was faking a lot of it…My first four audiograms, I believe my parents actually paid cash for those. And after that…we did two health fair varieties that referred me for further audiograms of a more acute nature."
In general, most participants did not report use of SSI during childhood, with some citing lack of awareness as the reason why their parents did not seek public services or supports for which they or their children might qualify. Among those who did report receiving SSI during childhood, most reported positive experiences with the benefit.
A number of participants began receiving SSI in high school or later, and one reported that SSI receipt resulted in increased independence on her part:
"I did get SSI and that was when I considered myself emancipated from my Dad so I could…be on my own."
The family experiences of focus group participants varied considerably, with some participants reporting that their parents were particularly supportive, while others reported how they had to succeed despite a lack of support (or even outright discouragement) from their parents. Among participants whose parents were supportive, many said their parents encouraged them to accept their conditions, to make realistic choices, and to have high expectations of themselves. Others said their parents were important sources of emotional support and encouragement:
"I was encouraged by the family. There was never any expectation that I wouldn't work."
"My parents wanted to make sure first and foremost that I had as much normal experience as everybody else. They didn't want me treated special, but at the same time they obviously were concerned with my safety and well-being. So, they outwardly tried to encourage me to do as much as I felt I could do and not to worry about anything, and if I had a problem I'd come to them and they'd work it out. They're overall very supportive."
Some participants struggled with parents and family members who fostered a sense of dependence and disability:
"My mother was born and raised in Korea. And if you go to Korea, you don't see handicapped people. They're either hidden away or sent to the country I guess, whatever, but you didn't see them. [For Asian-Americans,] it's a big thing -- number one -- to deal with someone who's handicapped in the family. I think your expectations as a parent, you lower them. You hope the best for your child, but you also think what the reality is probably going to be. They're never going to be able to support themselves. Who's going to fall in love with a person like this?"
A number of participants discussed how in early childhood or at disability onset they developed a strong determination to succeed despite the low expectations of others. Rather than accepting the low expectations of others, including parents and teachers, they became intent on proving them wrong.
"[My parents told me,] ‘I don't know why you're going to school. You're never going to get a job.' [So] those were the spots where defiance was the mode."
"[I learned to believe] that I have to be better than other people, because it's important because people look down on people with disabilities already."
Several other supports were mentioned by focus group participants as being useful during childhood or at the onset of disability. A number of participants engaged in school-based work preparation programs and had generally positive experiences. One participant said she had enrolled in a 60-credit childcare class offering comprehensive information about the childcare industry and training to be a childcare specialist. Another said he enrolled in a school-based work program that included interviewing skills, which he said was useful in preparing him for subsequent job interviews. Two participants in one focus group said they took useful courses in money management in school. Several individuals had informal "work-study" arrangements at school and in summer programs. Others mentioned having used assistive devices during school.
In this section we describe the supports that participants found most useful in getting a first job and in maintaining current employment. Among the supports identified, participants spoke at length about health insurance, employer accommodations, and personal motivation. Participants also spoke about SSDI and SSI, in-kind support programs, and support from family and friends.
Health insurance coverage is especially important for many people with disabilities, as their need for medical services is much greater than that of people without physical or mental impairments. Because of their medical conditions, however, people with disabilities often have difficulty obtaining private health insurance, or face restrictions in the types of services their insurance will cover.
For those receiving SSDI or SSI, eligibility to receive public health insurance was cited as one of the most attractive features of benefit receipt:
"It's not just Social Security, it's also the medical benefits. When you're mentally ill and you work just part-time, you get SSI, you get Medicare or Medicaid."
Access to health insurance played a key role for many participants in influencing decisions to enter the labor force. Public health insurance for people with disabilities is typically linked to receipt of SSDI or SSI, and many focus group participants described struggling with the choice between seeking employment and losing access to health insurance provided through SSDI/SSI. Others cited the importance of employment for providing access to private health insurance.
"[Healthcare] is one of the biggest [issues] for me, more than accommodations. If the government really wants to help people continue employment and pay taxes, then find ways to get rid of some of the regulations and stupid rules that prohibit people [from working]. Most people I've ever met, it's like, hell, I don't need the $500 that Social Security gives me [but I need the Medi-Cal]. I can get a good job, but I can't live without my health insurance."
Many participants described their experiences in searching for employment that would provide access to private health insurance comparable, or superior, to coverage under Medicare or Medicaid. A number of participants said that even though they considered features of private health insurance carefully before accepting an offer of employment, they were not always able to accurately assess benefits, or to secure the level of benefits they desired. Once employed, participants noted that continuous access to sufficient private health insurance was not guaranteed as some employers might choose to make unanticipated and disruptive policy changes.
Among participants with access to needed private health insurance through employment, retaining coverage served as one of the main attractions to continued work, regardless of the circumstances of employment:
"I think they're trying to get me to quit because there's only one, as far as I can tell, really, really unpleasant supervisor to work for, [and] after about a year they shifted me to him for no apparent reason hoping he would scream at me and yell at me and chastise me, so that I would just quit. That was seven months ago and I have not quit yet. You want to know why? I need the medical benefits so badly. They're worth more to me than the wages are."
Many participants described work and other management strategies they had employed in order to retain health insurance coverage. Typically, participants managed their earnings in order to retain Social Security benefits, which allowed them to retain access to public health insurance. Techniques include taking time off, shifting responsibilities, working without pay, shifting to part-time employment, and turning down promotions. One participant said that he makes sure that he does not go over the earnings limit, and that his boss keeps tabs for him and tells him when and when not to work.
In some cases, participants reported that they were advised by program personnel to manage earnings. Several reported having been advised by vocational rehabilitation (VR) counselors and others receiving benefits to stay underemployed to keep benefits while another said:
"I can remember quite some years ago, I actually had a caseworker tell me…because I kept saying I want to go to work, I want to go to work…she said ‘the reality is you can't work because if you go to work, you lose your benefits, you have no medical coverage, you have no health coverage, what are you going to do?' This was a caseworker with DSHS and she said ‘I'm telling you this in your best interest.' This was a long time ago because at that time, I would have lost everything."
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.
Among those who had received 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. 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:
"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."
"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."
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.
"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 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'm paying $10 a month for the next 19 years to pay back $2,300. They're taking it out of my Social Security."
Most reporting the experience of overpayments were eventually acquiescent regarding reimbursement. 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."
Participants highly valued supports and services that were individualized, and that enabled them to participate more fully in mainstream society. For example, participants were most pleased with VR providing or paying for equipment and services, such as computers, assistive technologies, transportation, education, and third-party training. Such supports targeted specific needs and promoted independence. They were less satisfied with services received in a "sheltered" or segregated environment, such as job training provided through the state VR system.
"DVR is a very, very, very, very good organization. It's been really good with me. They paid for classes [and] class fees [and] they paid for my books. They gave me transportation, supplied me with transportation, gas."
Others noted the agency's excessive bureaucracy made timely access to services difficult.
"That's a real problem, transportation. [Like she's] saying, her van is falling apart. Then when you get approved [for a] van and get evaluated, it's a three-year process. So in the meantime, you [still] have a disability and it could become aggravated."
Others said that VR funding fell short regarding education, and one participant said that despite its strengths, the VR system has minimal positive impact on employment:
"During my junior year [of college] we decided to see if [VR] could assist. Certainly they didn't with tuition because it was a private university, but they did help with paying for readers and textbooks. [People may] get some peripheral assistance from [VR], maybe with textbooks or financial aid or whatever, but the people who really are successful and find work tend to do it despite, rather than because of, rehab."
Particularly for people with mental retardation/developmental disability, job coaches provided through VR services play very important roles in securing and maintaining employment. Such coaches provide motivation and support, serve as a source of information about services, mentor and counsel individuals, in some cases accompany individuals on job interviews, and even help resolve employment disputes and difficulties. Because the role of the job counselor can be so critical, participants' perceptions regarding VR may be heavily influenced by behavior of the job coach or case manager.
Participants noted that the levels of knowledge, compassion, and skill of VR staff are important to the success of VR services, and in the absence of a qualified counselor, it is important to self-advocate and have a clear idea of what you want. Several individuals with mental disorders indicated that they were not successful in obtaining assistance from the traditional VR system, but were able to find the employment services and supports they needed in the mental health system.
Focus group participants reported a wide range of experiences with employers in seeking accommodations for their disabilities, including modifications to elevators, doors, entrances and exits and other features of the building; receipt of additional training time; receipt of flexible job hours; ability to work from home; or changes in job duties. Employers provided some accommodations through formal disability integration policies, and other employers provided supports more informally. In all cases, participants regarded the accommodations as important, or even essential.
Among building modifications, the installation of ramps and other features to accommodate wheelchairs were most often cited.
A number of participants said that flexible work schedules were a particularly important accommodation. Flexible scheduling allows them to work efficiently, keep doctor appointments and stay healthy.
Participants, particularly those with hearing or vision impairments, also commonly reported access to assistive devices and technologies. Such technologies typically included computers with Braille and speech access, optical character recognition software, Opticon (to convert text to large print), JAWS software (converts computer screen output into speech), TTYs (teletypewriters), electronic schedulers, and others.
The accommodations most frequently cited as being provided by employers include:
Many participants said that the behavior of immediate supervisors played a major role in job entry and career development. Having a supportive supervisor aided in securing accommodations, educating co-workers about accommodations and disability, protecting confidentiality, and ensuring that co-workers provide tools and information necessary for the individual to complete tasks.
"The job I got now is the best one I got, ‘cause they are supportive and they know how to treat people with disabilities. What they did on another job is that they would fire you. Here they just sit you down and talk to you."
"I just lost an employer who was wonderful. This man came in six months after I had become totally deaf and he could communicate with me perfectly well. I finally got to a comfort level where I was able to tell him that, 'These people in the building and in our office will not let me do my job. They're going to everybody else to ask their questions.' He took a hold of the situation and he redirected everybody. Everybody who called him on the phone with a question that was mine to answer, he said, 'Call Christine, or email her or walk into her office.' Everybody who walked in his office with a budget report, he said, 'You go see Christine.' He just pushed in that direction. That helped a lot. He also implemented site visits for me to go out into every one of the buildings every month, so I meet face to face with principals and bookkeepers in every building, and we can improve communication and they'd stop being afraid of me."
A number of participants cited substantial difficulties in gaining access to needed accommodations. In some cases, they were able to prevail, and in other cases they worked around the lack of accommodations.
"I wish I could receive permission to telecommute. I'm fighting for that now. They're denying me. They said that telecommuting is not a reasonable accommodation, that telecommuting has to do with the distance that you live from [work] and not from your disability. They did allow me [to work out of another] office on the days that I was supposed to wait to see if I was called for jury duty. But I don't think that is a reasonable accommodation. I think I was accommodating them, frankly."
Participants also described various experiences negotiating with employers for needed accommodations. For some, providing information and technical assistance to an employer was sufficient, for others, accommodations were substantially delayed or never received due to differences between employees and employers regarding priorities, or lack of access to information:
"I have a very similar [situation with my keyboard] where I actually went out to the trash, found a couple of cardboard boxes, put the keyboard on top, and said, ‘Right! I'm accommodated.'"
Several participants cited co-worker or supervisor attitudes that made gaining access to needed accommodations very difficult:
"I found that some people, especially old timers, still have an attitude about it. I mean old, '70s, late-'60s. ‘You know it costs money to build ramps.' They've got that mind-set, back when they were a kid, cripples stayed home and ‘I'm paying taxes to put curb cuts in for you.'"
"As far as accommodations at my workplace, they have built a cubicle a little large to accommodate the chair, but it took three years to get electronic doors in the front entrance of the building. After vigorous complaining from me and other employees and the clients that come into the center, it took a while for the landlord of the building to make changes that needed to be made.…The doors are still really heavy in the building, but by and large, physical accommodation is not a problem. It's the attitudinal accommodations that get me in trouble."
Participants also said that supervisors need to understand the nature of the disability and the required accommodations, and when they do not, employment situations often fail. Newark participants were more likely to have stories about an employer failing or refusing to accommodate a disability and to report concerns about divulging the presence of a disability to an employer or potential employer.
"…I asked for accommodations,…for 32 hours instead of 30 and I had a doctor's certificate about it. They said they wouldn't compromise the security of the building, and [I] was not granted any accommodations. So I quit, basically because their approach was, ‘Now you created us an ADA case,' although they knew I was disabled before they hired me. It was not a very good situation."
"[If] supervisors and co-workers…understand job accessibility and job accommodation, then they don't feel they have to take on more of your share."
Many participants said that lack of understanding about disability sometimes led to anxiety and fear among their co-workers:
"I was working in a hearing environment, and many of the people had known me for 12 years. Suddenly I was totally deaf, and people stopped talking to me. One of my biggest experiences was the absolute vanishing of support when that change happened, in a place that I had been for years. People were afraid of me because they didn't know what to do."
"[Sometimes] your co-workers just simply don't understand or don't have any knowledge of disabilities and they're scared because you have a disability -- like it's catching."
Participants also reported that the willingness of co-workers to learn about the nature of the disability was also important for ensuring a comfortable and productive work environment:
"When I work around a lot of people, they make me uncomfortable. [There] might be one or two people that I'll open up to, [but] other than that it's like everybody else I'm uncomfortable with. I'd rather be outside or I'd rather be just by myself, basically, instead of with people…[At the job I was in before,] I couldn't keep up with the conversation…I would get confused [and] I'd feel left out of the conversation or like I'm not really involved in the group."
"My first job was one of the most horrible experiences of my life and I actually haven't spent a lot of time thinking about it for a number of years and I'm finding that I'm getting upset sitting and thinking about it. It was awful. I was a medical transcriptionist. They hired me and I was shocked but then it went down from there because nobody would talk to me and the most painful thing I remember is the whole office planned a party right around me and didn't invite me. That was really hard but from that I learned that I really did, as a blind person, have to make some extra social efforts, whether I wanted to or not. Whether I wanted to go out for a beer after work with somebody or have lunch with somebody, I had to do it."
One person stressed the need for training about hidden disabilities:
"So if you look at me and I can see you…and you know I can talk, you wouldn't know that I was legally blind or you wouldn't know I was hard of hearing if you were just looking. So if I go to my employer and I say I'm disabled and I have the medical records to prove it, they don't believe it. I think a lot of employers need disability training…I thought that was what the ADA was for. To have [disability awareness training] mandated. But everyone doesn't get trained. The [employer] can say they can have disability awareness but until [they] actually get a person like me [with a hidden disability] -- that'll show you if the company has it."
A number of participants said that even relatively small efforts at education can be effective. One person described how employer knowledge of the Americans with Disabilities Act (ADA) helped ensure access to employment:
"I'm in a job thanks to the ADA. I might have lost my last job and the person who was in charge of our unit did not want to hire me…They said, ‘You're going to hire him, and she hired me kicking and screaming and she's no longer there. They don't want to get sued."
A number of participants, particularly those with a mental illness, discussed a reluctance to disclose their disabilities to employers and potential employers because of concerns regarding employer reaction, fears about being treated differently by co-workers, and consequences for employment.
"Half the time, to be honest, I don't want to even disclose my disability when I go for a job because I feel that can work against me so many times."
"I don't like to tell them that I have a mental illness because -- it's just that people don't treat you right."
"One thing about my disability is that it's not really apparent.…My employer doesn't know I'm disabled and I don't want him to know. See, my illness doesn't prevent me from doing my job. I take medication [so] there's no symptoms…I do my job fine and I don't want them to think I'm disabled because they'll think that I need help."
Participants with hidden disabilities talked about the difficulties they encountered because even after disclosure, some employers, co-workers, or others did not believe they had disabilities:
"They don't always know how I'm feeling and I may look fine but I might be having a hard time. But I let people know that I do have a disability. It's hard because they really don't believe it."
A participant with multiple sclerosis said that living with a non-apparent disability is both harder and easier than living with an apparent disability. She said that she must spend time explaining the nature of her disability to others because people do not usually have such knowledge. At the same time, she said that she can be treated with a degree of normalcy that people with apparent disabilities do not typically experience.
Others reported experiencing workplace discrimination, including termination, and other difficulties after disclosing their disabilities. For example, one woman said she disclosed her disability, in confidence, to her supervisor, who violated her trust by sharing the information with co-workers.
Others said that lack of understanding on the parts of employers, and potential employers, had led to lost promotions and lost employment opportunities. One hearing-impaired participant said that she had tried repeatedly to work as a paralegal, but that no company was willing to risk taking her on because of her disability. She said that she could not find a good job in her field because people will not hire her because of her disability. As she put it, "They won't say it to your face, but you can tell." She said that it was the attitudes of employers that hurt people with disabilities most: "Attitudinal barriers are the biggest deterrent to getting work."
One factor apparent throughout all of the focus groups and across all disabilities was the importance of both purpose and determination in contributing to successful employment outcomes among participants. Many participants made explicit references to the value of being motivated and resourceful, both to secure benefits and later to secure employment.3
Numerous participants described the challenges in learning the complex set of benefits available to adults with disabilities. For many, success in navigating this structure was related to desire:
"You do what you've got to do…You know how to be creative. Whereas somebody else may look at what the procedure is, you're looking more at, ‘How can we make this happen?'…It's just a matter of at some point you have to kind of take responsibility and just kind of go after it…I'm a survivor at heart. I think that that's a good trait to some extent because I've always done what I've had to do to get my basic needs met."
"I was depending on public transportation, which we all know is the worst, especially if you're a wheelchair user. I would go to school. It started at nine o'clock, [so] I would leave home at seven o'clock in the morning, get passed up by several busses; [the driver would say,] ‘Sorry, buddy, my lift doesn't work'…I got to the point where I was so damn frustrated I [decided] to try to get my own car. So I started hustling. I was going to get a car; I was determined. Once again, my determination [paid off, and] my financial aid money backed my loans and I had a car."
Numerous others described the importance of self-reliance in seeking employment, and in maintaining, and advancing in employment. For some, the desire to be independent was a key motivating factor in seeking employment. Participants also described the need to assert themselves in receiving needed accommodations at work.
"I had lots of off-and-on types of jobs. I had jobs through the community college, looked into the Disabled Student Services…I remember going to the employment office when I needed to find work, and [it was,] ‘Go to the Department of Rehab, go to the Department of Rehab, go to the Department of Rehab.' I'm like, ‘I can go anywhere. I don't have to go just to the Department of Rehab."
"That is why I went to work, I wanted to be able to make it on my own somewhere."
A number of participants said that experiences early in life motivated them to succeed. In particular, some were intent on proving wrong those who held low expectations for them.
"It seemed to me that just by getting a job, by getting off of welfare, by moving forward I was defying the odds, defying what was expected of me."
"I always had the attitude, don't tell me I can't do it, I'll prove you wrong."
The supports discussed above are among those most frequently mentioned by focus group participants. Other additional supports were discussed to varying degrees. While not as widely used, these supports provided critical help to a number of participants. In some cases, the supports are most relevant to individuals with particular impairments.
a. Personal Assistance Services (PAS)
Few participants used PAS, but those who did were generally quite positive about them. One participant said that her assistant serves as her reader at work, which has allowed her to keep her job. Another participant uses a personal assistant both on and off the job, because she requires constant assistance. Several individuals struggled with the idea of using PAS, with one person saying she could not get used to the idea of a stranger touching her. Others, however, credited personal assistance with helping them regain a sense of independence.
Among those who received PAS at home, the level of support needed varied with the severity of the individual's condition. Some individuals require assistance with housework only, while others, need more extensive care, such as caregivers and personal attendants.
Individuals who needed PAS in childhood typically did not receive formal services, but instead received care from family members.
b. Housing/Community Living Programs
Many participants equated access to non-institutional and non-shared housing with independence. Having both a place to live, and having this sense of independence, agreed many participants, was linked to gaining a foothold in employment. In a number of cases, participants credited both Section 8 and supported housing programs with assisting them with their housing needs. Two participants described becoming homeowners through special housing programs. One bought a home through the Federal Housing Authority. The other built her own home with the assistance of a community non-profit organization.
Not all participants, however, were positive about the Section 8 subsidized housing program. Even if eligible for Section 8 housing, participants expressed difficulty in obtaining the certificate. Then, some participants said, finding housing was a further challenge. Two people said they had recently received a Section 8 certificate, but had not yet found housing. Another participant expressed great surprise that anyone ever moved off the waiting list and obtained a Section 8 certificate.
Numerous participants favorably described independent living skills training they had received through Community Living Programs.
c. Transportation
Many participants have access to public transportation only, and could not get to work otherwise. Among those who use public transportation, a number reported use of subsidized fare and access to free van service. Among the participants who used private transportation, a number of methods were employed to gain access. For instance, VR paid for modifications for several participants' vehicles, and in many cases participants said that spouses, other family members, and friends regularly included them as passengers in private vehicles. Another person carpools with co-workers, and one person reported having been provided transportation by her job coach.
A common theme among focus groups regarding transportation was the need for access to reliable transportation, in order to maintain employment. Some participants were frustrated by provisions or restrictions associated with public programs. For example, one participant, who lives in the Seattle suburbs where there is no bus service or other public transportation, talked about the difficulty of securing a reliable car while receiving Medicaid or SSI benefits.
Among those with access to public transportation, many expressed satisfaction with the available subsidy programs.
Public transportation is extremely important to people with disabilities living in Los Angeles County. Many participants regularly use ACCESS Services, Los Angeles County's paratransit system for people with disabilities. Nonetheless, participants reported problems with the system. One person complained about bus drivers' limited training about accessibility for people with disabilities. Another said he had found it difficult to get information about how to use the bus service, and another was not satisfied with the bus schedules. Others noted limitations in service hours and unreliability.
A number of participants drive their own cars, and many have adaptive equipment on board. Some had paid for their adaptive equipment themselves or with the assistance of family members, and others had received funding from VR to make the modifications. Three participants said that they had received rebates from a car manufacturer after fitting their new cars with adaptive equipment. They had learned about the money-back option offered by most automobile manufacturers through word-of-mouth and through advertisements in disability magazines. Many participants said that they wished to be able to drive themselves to gain a greater sense of independence, but this was difficult to accomplish for some because needed adaptive equipment was expensive and sometimes difficult to find.
d. Informal Supports from Family and Friends
Many related stories and events illustrating the substantial support provided by family and friends. Among the key functions performed by family and friends was the extent to which they were able to help participants accept their disabilities, encourage work efforts, and reinforce a positive self-image. Several participants said their families and friends had provided considerable support in maintaining their current jobs, including providing help with transportation, shopping, food preparation and offering emotional support.
Some participants reported that friends and peers whom they met in their treatment programs provided support and pressure to seek help or change medication. This was particularly important when participants had difficulty perceiving their own needs and level of disability.
e. Plans to Achieve Self Sufficiency (PASS)
Only three participants in Newark reported using PASS, and each was positive about the program. One used the program to buy a van for his work, and another used PASS to save money to start a computer business. Another, who eventually used PASS, said that taking advantage of the program was difficult because of a lack of knowledge of the program by Social Security Administration (SSA) staff.
Several participants in Los Angeles were familiar with PASS, and discussed how it could be used to purchase assistive technology. However, they said that only a small number of VR counselors -- and an even smaller number of Social Security counselors -- were familiar with the program or trained in how to write a PASS plan.
Los Angeles participants who had written PASS plans reported that the plans were very helpful in providing assistance during the transition from school to work. In some cases, SSA or Southern California Rehabilitation Services had assisted individuals with writing their plans. One participant wrote her own PASS plan for computer equipment. Another was able to purchase a van for work through his plan.
f. State Workforce Development Systems
Among participants who used State Workforce Development Systems, those with the fewest skills, and seeking entry-level positions, appeared to be most satisfied with the service. Those who sought assistance with more specialized work were less satisfied.
"Whenever I've talked to job developers in the past, what I've heard is that, regardless of my degree, regardless of my training, or the awards I've received, or all the things I've done, what they could help me do is find a $7-an-hour job. If I want that, they'll help me. But if I'm looking for a professional position, then they can't help me, and it's ‘be off with you.' "
g. Other Organizations
Focus group participants reported a variety of other organizations that provided support for employment efforts:
Disability Advocacy Organizations. Several participants reported using different disability advocacy organizations for assistance with their ongoing needs. In some cases, disability advocacy groups helped provide funding for assistive technologies, offered training, or helped participants fight for needed accommodations. Others reported receiving emotional support and encouragement from such organizations.
Organized Sports. Participants agreed that participation in sports provides them with friendships, a sense of family, and a peer support group for people with similar disabilities who face many of the same issues. They also agreed that participation in team sports builds skills that carry over into their professional lives as members of a company team. Special Olympics was a significant source of support for a number of participants, who said that participation had contributed to an increased sense of self-worth and self-reliance.
Peer Mentors and Role Models. A number of participants mentioned the value of having role models and mentors available to provide advice during difficult periods. Participants described receiving support from others with similar disabilities following an injury, during the transition from school to work, and while seeking employment.
Religious Organizations. Several participants gained a great deal of support from religious communities, including spiritual and emotional support, access to support networks, access to social networks, and access to volunteer work.
This report summarizes the findings from information collected during three sets of focus groups conducted for a study on employment supports for people with disabilities sponsored by the Office of the Assistant Secretary for Planning and Evaluation (ASPE) within the U.S. Department of Health and Human Services (HHS). The study is intended to increase the understanding of the role of various supports in helping people with disabilities find and maintain employment. The findings in this report are from focus groups conducted with nearly 300 participants with significant disabilities, all of whom had obtained some measure of employment success, in Los Angeles, California; Newark, New Jersey; and Seattle/Tacoma, Washington, between April and December 2000.
This report is organized as follows:
In the remainder of Section I, we provide background information and a description of the study, and briefly summarize the evolution of recent disability policy to provide a context for the focus group findings. In Section II, we present the findings from the focus groups, organized by type of support (i.e., access to health insurance, employers' accommodations, etc.).
Two Appendices to this report provide further information about the study: Appendix A contains a description of the focus group methodology, a description of the characteristics of the focus group participants at each site, and the study instruments; Appendix B contains detailed profiles of the programs and supports available to people with disabilities in each of the three focus group localities.
In addition to this report, several others have been developed using the findings from this study. These include a comprehensive review of the literature and studies conducted since 1990 on issues related to the employment of people with disabilities, and five policy briefs covering the following topics:
The Role of Supports in Successful Labor Force Entry for Youth with Disabilities;
Meeting the Diverse Needs of People with Disabilities;
The Role of Employers in Labor Force Entry and Employment Retention;
Employment Supports Used by Persons with Psychiatric Disabilities; and
The Role of Health Insurance in Successful Labor Force Entry and Employment Retention.
The purpose of this study is to collect detailed information on the experiences of people with significant disabilities who are competitively employed, the events and factors affecting their employment decisions, the relative importance of specific factors, and the reasons for successful and unsuccessful employment attempts. Our goal is to gain a better understanding of the role supports can play in: assisting people with significant disabilities to participate successfully in competitive employment; improving employment outcomes for people with disabilities who are currently employed; and improving the employment outcomes of people with disabilities who are not currently employed. This project is unique among the many investigations of the factors affecting the employment of people with disabilities in that it focuses on those who have achieved a measure of success in employment, and the factors contributing to their success.
The collection of this information is intended to advance the understanding of the effect of supports and programs on the employment of people with disabilities. The project is designed to provide information that might be used by federal agencies, states, social service agencies, advocates for people with disabilities, and consumers with disabilities to develop and inform policies that will promote the employment of people with significant disabilities and to develop further research on the issues.
In this study, we define the term "supports" very broadly. Supports may include public or private income or in-kind transfers, such as Social Security Disability Insurance (SSDI), Supplemental Security Income (SSI), and payments for medical care, prescription drugs, medical devices, assistive technology, and personal assistant services. Supports also include employment development programs, such as employment and training programs, job search and retention programs, independent living programs, other housing supports, special education, school-to-work programs, and transportation services. Laws and regulations that encourage behaviors (on the part of firms or individuals) that promote the employment of people with disabilities and informal assistance provided by family members, co-workers, or friends also fall under the definition of supports used in this study.
The study has four major components:
Literature Review: We conducted a comprehensive review of the recent literature (since 1990) on issues related to the employment of people with disabilities, including the effects of income support programs on employment of people with disabilities; access to health insurance and incentives for employment; childhood disability and transitions from school to work; employment programs; personal assistance services (PAS) and assistive devices; and recent legislation, proposals and initiatives.
Inventory of Employment Programs Serving People with Disabilities: We developed an inventory of public and private programs at the national, state, and local level that support, promote, or otherwise affect the employment of people with disabilities.
Focus Groups with Working People with Disabilities: We conducted approximately 45 focus groups at three sites (Los Angeles, California; Newark, New Jersey; and Seattle/Tacoma, Washington) with 284 participants, designed to collect detailed information on participants' employment experiences.
Profiles of the State and Local Environments and Resources Affecting the Employment of People with Disabilities: We developed profiles of federal, state and local resources and programs (public and private) that promote employment of people with disabilities and that are available in each focus group locality.
The general research issues we address in the study include:
What federal, state, and local supports are utilized by people with disabilities and how do these supports promote employment? How do people with disabilities learn about the supports available, and how frequently are they utilized?
What employer supports are utilized by people with disabilities?
What interactions exist among the various support resources? Do eligibility criteria for some resources counter the work incentives created by other resources?
What supports do people with disabilities say they need to work? What is the relative importance of the various supports in influencing their work effort?
Until recently, disability policy for all adults in the U.S. has focused on conducting eligibility determinations, and providing cash and in-kind benefits to those unable to participate in the labor force. There has been, however, a gradual shift toward the prevention and management of disabilities, with a focus on increased independence. Policy makers are currently trying to develop and implement policies that encourage individuals with disabilities to work and to live independently. For working-age adults, this shift has been reflected in policies that emphasize the right to work (e.g., Americans with Disabilities Act), and address work disincentives and access to employment supports (e.g., Ticket to Work and Work Incentives Improvement Act). In this section, we trace the major policy initiatives over the last five decades that have accompanied this shift in emphasis. The discussion is intended to provide a context for the focus group findings and policy issues described in this report.
During the late 1950s through the early 1970s, public disability policy offered little incentive for people with disabilities to seek or engage in competitive employment. Disability policy emphasized payment of cash benefits for those unable to work, and people with disabilities were neither expected nor encouraged to enter the workforce. Modifications in the Social Security Act during the 1960s and the early 1970s liberalized eligibility requirements, increasing the number of individuals eligible for benefits. Effectively, this increased the benefit rolls and the value of benefits, and discouraged individuals from entering or returning to employment.
In 1972, beneficiaries receiving disability payments became eligible for the first time for Medicare coverage, which was extended to persons who had been receiving SSDI benefits for at least 24 months. In addition to increasing the value of disability benefits, this policy increased the risk to beneficiaries of leaving the rolls and returning to work because Medicare coverage was tied to disability benefit receipt. The federal SSI program was enacted in 1972 and implemented in 1974, to replace the growing federal/state matching programs. With a few exceptions, individuals receiving SSI were eligible to receive Medicaid, authorized under Title XIX of the Social Security Act and established in 1965 to provide adequate medical care to low-income individuals and individuals with disabilities.4
The mid-1970s through 1980 represented a shift in the focus of disability policy. After the growth of the disability rolls in the late 1960s and early 1970s, there was growing concern about the rapid rise in the number of people receiving SSDI and SSI benefits, and increasing recognition of the right, and responsibility, of people with disabilities to work. The passage of the Rehabilitation Act of 1973 marked the beginning of a change in the focus of disability policy. The Act required each agency or department of the executive branch of government to submit an affirmative action plan for the hiring, replacement, and advancement of people with disabilities, and to update the plan annually. The Act also barred recipients of federal funds from employment discrimination against people with disabilities. The Act reauthorized and expanded the vocational rehabilitation (VR) program to include all persons with disabilities, and to provide for research and training to improve vocational prospects for such individuals.
During the 1980s, Congress passed legislation that provided specific public and workplace accommodations for persons with disabilities. A number of pieces of legislation emphasized the civil rights of people with disabilities, and served as precursors to the watershed Americans with Disabilities Act (ADA) of 1990. For example, the Fair Housing Act Amendments Act (1988) extended protection of the 1968 Fair Housing Act to people with disabilities. In 1980 and 1981, Congress passed a series of amendments to increase access to work for people with disabilities. For example, impairment-related work expenses could now be deducted from earnings for purposes of determining whether the SSDI or SSI applicant or beneficiary was engaging in substantial gainful activity (SGA), a key measure in determining benefit eligibility, and the SSI Section 1619 work incentive program, which allowed SSI recipients with earnings to retain some of their income benefit, plus Medicaid eligibility, at income levels that would have previously made them ineligible for SSI. In 1986, amendments to the Rehabilitation Act created a new service category and funding stream for supported employment, which expanded service capacity to those unable to benefit from traditional vocational services. Thus, increasing numbers of individuals with disabilities gained access to employment-related services.
Since 1990, a series of significant legislative initiatives have solidified the right and the expectation to work. The most expansive of these initiatives, the ADA, became law on July 26, 1990. This omnibus civil rights statute contains five titles that cover employment and public services. The ADA prohibits employment discrimination against people with disabilities, and requires employers to provide reasonable accommodations for workers with impairments. The Act also requires public transportation to be accessible to people with disabilities, and requires that places of public accommodation (both publicly- and privately-owed) be accessible to and usable by people with disabilities. The Family and Medical Leave Act of 1993 also extended additional rights to people with disabilities, entitling qualified employees to take up to 12 weeks of unpaid leave during a 12-month period if the employee is unable to work due to a serious health condition.
Two major pieces of legislation passed during this period emphasize work preparation among school children with disabilities. The Individuals with Disabilities Education Act of 1994 (IDEA), legislation addressing in-school supports for youth with disabilities, requires states to provide free and appropriate public education for students with disabilities at the elementary and secondary level. The Act provides school districts funding for special education and requires states to identify, locate, and evaluate all children with disabilities in the state in need of special education and related services. Children receiving benefits under IDEA receive an Individual Education Program, which provides individually-tailored support services during secondary school, and includes transition planning services (no later than age 16, earlier if deemed appropriate) designed to develop vocational and life skills leading to adult success for students. Students are to be educated in the least restrictive environment possible, and to be provided appropriate accommodations.
The School to Work Opportunities Act of 1994 authorized development grants to states to create systems that prepare all students for the transition from school to work. These training systems are designed to teach young Americans marketable skills, to prepare them for their first job in a high-skill, high-wage career, and to increase their opportunities for further education, such as at a four-year college or university. The law also requires each local program that receives a grant to establish a work-based learning component, including work experience, workplace mentoring, and broad instruction in "all aspects of an industry." Moreover, the law also requires that all school-to-work programs funded under the Act be open to all youth, with particular emphasis on ensuring opportunities for disadvantaged youth and school dropouts (Brown, 2000). The legislation expires this year, but programs will continue to operate under sunset provisions and the federal funding for school-to-work activities will continue under the Workforce Investment Act (WIA) of 1998.
Welfare reform, passed in 1996 in the form of the Personal Responsibility Work Opportunity Reconciliation Act (PRWORA), also had an impact on disability policy. PRWORA replaced the Aid to Families with Dependent Children (AFDC) program with Temporary Assistance for Needy Families (TANF), a state block grant program to provide cash benefits to needy families with children. Although TANF was not designed primarily to serve people with disabilities, we discuss the program here because a large percentage of those receiving benefits from TANF (and AFDC) have disabilities, although estimates vary widely depending on the definition of disability used. One source estimated that approximately 50 percent of adult AFDC recipients have disabilities or have a child with a disability (National Council on Disability, 1997). Estimates from other studies range from 10 percent to 40 percent (Johnson and Meckstoth, 1998; Brady, Meyers, and Luks, 1998; Wolfe and Hill, 1995).
Under TANF, states may require all recipients, including those with disabilities, to participate in welfare-to-work program activities although the work requirements for people with disabilities vary across states. Under AFDC, people with disabilities were eligible for unlimited assistance as long as they met the income requirements and had a dependent child living in the household. TANF now subjects these individuals in most states to time limits, although polices vary by state (Thompson et al., 1998). Finally, unlike under AFDC, TANF recipients are not automatically eligible for Medicaid but must qualify for Medicaid separately. To determine Medicaid eligibility, states may not use a standard more restrictive than the July 1996 AFDC income and resource standard eligibility criteria. Each state has the flexibility to lower this standard to the standard in effect in May 1988. States may also raise the standard annually but by no more than the percentage point increase in the Consumer Price Index. The median monthly cash benefit for a family of four receiving TANF assistance in 1998 was $463 (Committee on Ways and Means, 1998).
The latest legislative efforts continue the emphasis on self-determination and consumer control of services, promoting independence, improving opportunities and reducing disincentives to work. The SGA level was increased from $500 to $700 in July 1999. The adjustment is the first of its kind since 1990, and reflects growth in average wages since that time. The SGA level will now be adjusted annually, based on increases in the national average wage index. SGA rose to $740 in January 2001.
WIA organized federal statutes governing the job training, adult education and literacy, and VR programs into a one-stop delivery system.5 Under this system, states are required to implement workforce development plans that describe how the state will meet the needs of major customer groups, including individuals with disabilities, and show how the plans will ensure nondiscrimination and equal opportunity. Services are to be provided through One-Stop delivery systems, under which separate workforce investment, education and human service programs are linked (physically or technologically) to provide coordinated service delivery. Some of the partners in this system include employment services, adult education, post-secondary vocational education, VR, Welfare-to-Work, and Community Services Block Grants. In many states, these systems are directly linked to VR and/or TANF services. Local workforce investment boards (WIBs) coordinate WIA service delivery, and each WIB includes a Youth Council to coordinate youth services. WIA also provides for the awarding of competitive one-time, time-limited grants, contracts or cooperative agreements to eligible entities to establish self-employment projects for individuals with disabilities. Individuals who receive SSDI or SSI are automatically eligible under the WIA for VR services (Silverstein, 2000).
The One-Stop delivery systems, which are central to WIA, have the potential to improve substantially the delivery of services to individuals with disabilities seeking either to obtain employment or to advance in their careers. Critical to their success will be the extent to which the centers are accessible, and the extent to which a full range of services are readily available. Efforts are underway to ensure that individuals with physical and sensory disabilities do not encounter architectural or other physical barriers at One-Stop centers, and that they are able to read the available materials and resources and communicate with staff members.
Access to services will be dependent upon the extent to which service integration occurs. In some states, VR services are integrated into One-Stop center activities. In other states, VR services and programs have yet to be coordinated with the array of services available to applicants. To best serve individuals with disabilities, One-Stop centers must ensure that the professionals performing intake, eligibility, program planning and case management functions in the centers are fully aware of the unique needs of individuals with disabilities, and that they are authorized to provide the services and supports necessary for them to pursue their occupational goals (Kregel, 2001).
The Ticket to Work and Work Incentive Improvement Act (Ticket Act) of 1999 fundamentally alters the delivery of VR and other public employment services. The Ticket Act established the Ticket to Work (TTW) program, which provides SSDI and SSI beneficiaries who are appropriate candidates with a voucher, or ticket, to be used to obtain VR or employment services from participating public and private employment networks. The program aims to improve access by reducing the role of the Social Security Administration (SSA) in the VR process and allowing market forces to reward providers who successfully move people with disabilities into work, both through the use of a voucher system and a performance-based contract. The Ticket Act also directs SSA to establish a community-based benefit planning and assistance program for the purpose of providing accurate information related to work incentives to beneficiaries with disabilities.
Regarding access to health care, the Ticket Act also loosens restrictions on states regarding who is eligible to buy into the Medicaid Buy-in program. States are able to continue to offer the Medicaid Buy-in to workers with disabilities, even if they are no longer eligible for SSDI or SSI because of medical improvement. Offering a Medicaid Buy-in program remains optional for the states. The Ticket Act also extends the continuation of Medicare Part A coverage for individuals formerly receiving SSDI benefits from four years to eight-and-a-half years.
The Ticket Act also addresses a number of the work disincentives inherent in the SSDI and SSI programs. Under the current law, an individual with a disability choosing to return to work faces the risk of losing eligibility for benefits in the short run and the risk of not being able to return to the disability roles in the event that his or her employment is terminated. Although the health insurance provisions described above address a significant part of this risk, the threat of losing eligibility for cash benefits remains. Several provisions of the Ticket Act address these concerns. First, individuals who are actively participating in the TTW program are not subject to continuing disability reviews (CDRs). Non-participants are still subject to CDRs; however, work activity may no longer be used to trigger such a review. Second, the Ticket Act allows for expedited eligibility determinations for former beneficiaries who, after a lengthy period of subsequent employment, are no longer able to work.
The Ticket Act also grants SSA demonstration authority to evaluate the effects of a $1 for $2 reduction in SSDI payments for earnings over a specified level. This "phase-out" of benefits will make the SSDI benefit and incentive structure more similar to that of SSI. Currently, SSDI recipients who earn at the SGA level lose all benefits, which creates a substantial disincentive to increase earnings.
To encourage inter-agency cooperation on employment initiatives for people with disabilities, President Clinton in 1998 established the Presidential Task Force on the Employment of Adults with Disabilities. The mandate of the Task Force is to evaluate existing federal programs to determine what changes, modifications, and innovations may be necessary to remove barriers to employment opportunities faced by adults with disabilities. In 2001, Congress approved a new Office of Disability Employment Policy for the Department of Labor, which integrates the programs and staff of the former President's Committee on Employment of People with Disabilities. The Office's mission is to facilitate the communication, coordination, and promotion of public and private efforts to enhance the employment of people with disabilities. The Office provides information, training, and technical assistance to America's business leaders, organized labor, rehabilitation and service providers, advocacy organizations, families and individuals with disabilities through a variety of programs. Such programs include the Job Accommodation Network, Project EMPLOY, the Business Leadership Network, and the Workforce Recruitment Program.
The findings reported below are from focus groups conducted in three cities (Seattle/Tacoma, Washington; Newark, New Jersey; and Los Angeles, California) between April and December 2000. All focus group participants were 18 years old or older, had a significant disability with onset prior to first substantial employment, and had annual earnings of at least $8,240 before taxes and transfers. At the time of the focus groups, the latter was the federal poverty line for a family of one.6 It is approximately equivalent to working 30 hours a week at the federal minimum wage.
A total of 284 individuals participated in focus groups and individual interviews for the study.7 Basic socio-demographic, disability, and employment information was collected via a telephone screening instrument and a pre-focus group registration form. Detail on the focus group methodology, the characteristics of focus group participants, and the supports available at each locality is provided in the Appendices to this report.
We asked focus group participants to discuss supports that were important to them at three critical periods of their lives: during childhood or at disability onset; obtaining first employment or first employment after disability onset; and in maintaining current employment. We present the findings from these focus groups below. Because we found that the supports used to obtain first employment and those used to maintain current employment were very similar, we have combined the discussion of these topics into one section.8 We begin with supports used during childhood and/or disability onset.
In this section we describe the supports that focus group participants used during childhood, or at disability onset. Among the supports identified, special education and health insurance generated the most discussion. While health insurance was widely experienced as a positive support, special education received mixed reviews. Participants also discussed SSDI, SSI, assistive devices, self-motivation, and the support of family and friends. We summarize the discussion of these topics below.
Participants who developed disabilities during childhood commonly reported use of special education, and offered mixed assessments of its value. Among those who identified special education as a valuable support, a number noted the ability of the special education system to provide accommodations as an attractive feature. One participant with cerebral palsy said that special education provided her with valuable mobility training, and another with epilepsy was appreciative that special education teachers allowed her to learn at her own pace.
Other participants who experienced special education as a positive support attributed their positive experiences to special education teachers that challenged them and expected them to be productive:
"I had a wonderful [special education] teacher who emphasized the need for reading and educating yourself. Certain teachers along the way were challenging."
"Teachers should have the same expectations of kids with disabilities as they have for kids without disabilities…Schools need to apply the same performance standards to all students."
One participant reported having a very positive experience while attending a high school for people with disabilities, where most of the teachers had disabilities, as well.
"I went to ‘orthopedic school,' [where] the teachers were role models [who] taught you the way society thought about disabled people. [It was] for people who were physically challenged, not [kids with] learning disabilities…You had to keep up with the other kids…They didn't think about your disability, they just saw you keeping up."
Several participants in special education said their positive experiences were due primarily to the commitment of one or more individuals who were intent on seeing them succeed, and who were even willing to break rules to provide unconventional or additional supports or accommodations:
"There were these two social workers [on the school's Child Study Team]. One had been there many, many years. They kind of adopted me. They said, ‘If you're not going to come to school, then just come to see us at the Board of Ed office and we'll go over all the subjects with you.' They knew I was really smart, so they just gave me the homework…[I wouldn't have made it] if it wasn't for the diligence of this lady, who would basically say, 'Just come over and bring a lunch.'
"…I eventually did go back to school and finished, [but it was] with these people's help…They broke every rule in the book and I loved them. They were not supposed to take me out to lunch and to come over to my house. [Also, there's a limit on the] number of days that you could be out of school but they said no, he's got some kind of doctor's note or something."
Special education was described as a negative experience, however, for many participants. Many said that special education offered little benefit and may actually have been damaging because it did not provide education but was merely a place to "park" children with disabilities:
"Special ed was just a place to be…I was put there because I couldn't walk very well. I hated that. I was with other people who couldn't walk very well either, so we got to do other things that we were good at…and we played silly games…I never got any particular training."
"I hid my disability, and when they found out in second grade it was because I was failing everything. I didn't even know what was really going on. Then I went to special classes…but we learned absolutely nothing there. It was just babysitting time.
According to some, the disadvantages of special education were striking. Several people said that their special education programs provided no vocational classes or job opportunities; others said that their programs lacked basic instructional materials and teacher expertise, or that the programs did not otherwise meet their basic needs.
"They were putting me in classes that I didn't belong in. They'd associate physical disability with someone who is mentally disabled."
"I went to a school that was just for the handicapped [around eighth grade]. I felt that I didn't come away by learning a lot that I wanted to learn. Like, I didn't learn much in reading. They just kind of failed to work with me on reading. I was lucky to learn how to tell time and count money, things like that…Back then, they had to graduate you whether you wanted to graduate or not."
"[I also] went to a [segregated] school and it was horrible. I did not get an education there. I went there from first grade through high school, and I hated every minute of it because most of the kids were -- I'm not sure how to put it -- severely emotionally disabled. I did not belong there. The teachers…they pretty much coddled us and would pat our heads a lot, you know, that kind of an attitude."
"During my freshman year in high school, I was bussed to another school which had a program for people with disabilities. To be honest, it wasn't [for] me. I couldn't fit [in]. I would actually help the teacher with the other students. I would help them out but I felt that it was a challenge for me. I was mostly in a class with people with developmental disabilities so therefore I didn't see a challenge for me there. So I decided to go back to my [neighborhood] school."
As with individuals who experienced special education as a positive support, experiences with individual teachers were also powerful for those who had negative experiences with special education:
"I was having so much problems at school, I couldn't take one of these teachers. I was in Special Ed, and one of these teachers built a wall around me because of my disability. I had my head down to my shoulders, my eyes were criss-cross, and I couldn't walk, [but the] teacher didn't care. [She] built a wall around me. Around me. [Not to protect me, but] to move me out of the way and give me some crayons and a coloring book to color."
Among special education participants who were mainstreamed (moved from special education into regular classrooms), many were happier after mainstreaming was initiated:
"When I started school, mainstreaming was the thing. It is good for yourself and good for the rest of the school [for you] to be part of things, not stuck outside the rest of the school and doing your own thing, it's not good…It's the key to accepting how you fit in society, and having society accept you as well."
Another described how her experience in special education stimulated her desire to move into mainstream education:
"For me, I think just being around the special ed class, it was motivating for me. Back in the seventies, they would put a Down's Syndrome [person with] retardation and [people with] physical disabilities all in one room. So you've got this visual, and I'm thinking, ‘Is society viewing me the same way that I'm viewing these other individuals?' I think it was motivating for me to try extra hard to be able to mainstream [later on]."
One participant who had a stroke as an infant said that her experience with special education was very negative, and she believed that not being mainstreamed was bad for her because she could have used much more training than she received in her special education program. Another said:
"I started special ed at age 10 until graduation…Instead of assisting me in mainstreaming me, they kept me in courses that did repetitive training instead of supporting me in areas that I was lacking…In college I had assistance, I had books-on-tape, I had someone helping me take notes. If I had had that in grade school, I could have been mainstreamed."
One individual with a hearing impairment who attended special schools for the hearing-impaired as well as a mainstream high school explained the importance for the hearing-impaired to have instruction in both types of schools, a specialized school that teaches sign language, as well as an oral school:
"I went to three different types of education, because they didn't know how to accommodate the hearing-impaired. They [first] put me in a hearing, or oral, school, ‘to try to let the kid be as normal as he can be with other kids.' Then I went to a deaf school in middle school, [and] then the mainstream. [It was frustrating, and] my family unity is what got me through…In a oral school, you're not taught sign language, you're verbally communicating with your peers. Deaf school, you can't exactly verbally communicate with anybody if 95 percent -- or maybe 98 percent -- sign. I'm in the 2 percent because I don't sign. And putting me in that situation destroyed my entire year, because I got set back. So when I went to mainstream high school, I had to catch up…When you go in the mainstream, you don't have [any other] choice."
Numerous participants said that gaining access to necessary accommodations in the mainstream environment was a substantial challenge. Getting such accommodations was important to ensure equal access to classes and vocational training, and to feel like a full member of the school community. Participants described their own efforts to obtain needed accommodations:
"I was actually the only one with a physical disability on campus. I was the only person in a wheelchair. Back then in high school, I started to do my own advocating for someone with disabilities. None of my classrooms were equipped with wheelchair ramps, so I [told] the principal that I would go to the city college. In other words, I was blabbering a lot of things that I didn't really know what I was saying in order to get action or to see some results. I did. I saw results. They started building ramps. I just started telling them I probably won't be the only person who uses a wheelchair attending your school, and it helped."
"In the city that I lived in there were several high schools, most of which were two-story high schools and I used crutches at the time. I had a counselor at the high school who said, ‘Why don't you go to the school [that's] a single story? You won't have to climb the stairs.' I said, ‘No, this is the neighborhood I live in, this is where my friends go, and this is where I will go.' And so I used to climb the stairs. My mother never would even go to the high school. She couldn't deal with seeing steps and she knew I climbed them. Then I got a little bit smarter and [when] they'd say, ‘You can't take this class because it's offered upstairs,' I'd say, ‘Move the classroom,' and they did."
"Whatever it took, I was going to attend that school. And, again, determination is what got me there, and giving the administration pressure. It was more convenient for them to bus me out of the city, for them not to build a ramp. By me deciding to go to this campus it ruined their routine, the route that they had. The bus [driver] actually had to wake up an hour earlier. [But] I would get picked up at 6:30, two hours before starting school…so in other words, it was for their convenience, not for mine. It was never for my convenience until I started fighting back."
"I wanted to make a real effort to completely graduate from my class, and I think it's now what we call mainstreaming, but the…high school was not accessible and they [had to] make provisions to make [it so]."
In some cases, motivated parents were key:
"Six weeks before the end of the semester I broke my foot and I was not doing well in first semester algebra. I had a teacher who always wrote equations on the board and didn't bother, unless he was asked two or three times, to [say] them out loud. So my mother calls to arrange for me to have a tutor the last six weeks. [The vice-principal] said, basically, ‘Well, what's the problem, your son is blind, he's not going to college anyway.' And my mother went off on him like Cher went off on the poor principal in ‘Mask,' and said my son will either have a tutor or I will go to [the media]. Needless to say, I got a tutor."
"When we first started…public school, it was only the second year of the program and there was no money for blind kids so our parents went out and raised money to buy the first Braille writer to teach us because the teacher they hired didn't know Braille -- one lesson ahead of the blind kids. And then the parents got together and beat up the school district until they started funding and getting us the equipment and then the money just rolled in like water."
"The bells were a little bit quick [and] sometimes [things were] a little bit fast paced. The real emphasis was getting large print to read better when it came to taking the quizzes and/or tests, taking them on time, so I could really think through what the correct answers were. [My parents] really worked with the school system to make sure they provided those accommodations."
"The school didn't have many accommodations at first, but we went to the school board and pulled some teeth. They were certainly willing to do more once you knocked down the initial barriers…They moved some classes to the first floor, and my parents built ramps. I had to do self-study in a couple of classes, which I didn't appreciate, but I also understood it was because of the logistics."
"[I was in] a mainstreaming program for about four of the seven years of the special school…and I was so successful that it was determined that I should return to my home school district and be completely mainstreamed. Then a problem arose and my original school district didn't want to take me back because it felt like because of my multiple disabilities -- by that time I was totally blind and totally deaf -- that they would not be able to accommodate me.…[M]y parents had to organize a campaign to pressure the school district to get them to take me back. They finally took me back the middle of my sophomore year in high school and I had a good support network.…I had a sign language interpreter and I had my textbooks in Braille."
Many participants (including users of both public and private health insurance benefits) cited health insurance as critical to preserving their families' financial well-being, and to receiving needed medical services and prescription drugs. One participant remarked:
"If it hadn't been for my father's insurance, our family would have been bankrupted by my disability."
Another participant who had sustained multiple head injuries during childhood, reported seeing seven different psychiatrists, being in four hospitals, and going to four other doctors for his condition during his lifetime, and that his parents' private insurance covered most of his needs. A woman with cerebral palsy reported multiple hospitalizations, multiple surgeries, and physical therapy, all paid by her father's private insurance.
Many participants experienced some limitation in coverage (due to policy restrictions or switching plans) during childhood, which they said had been detrimental to rehabilitation:
A female participant with bipolar disorder stated that when she was young, frequent changes in coverage resulted in her having to go to many different psychiatrists. She believed that not being able to sustain a therapeutic relationship over a relatively long period of time had a negative impact on the efficacy of her treatment.
A participant with an autism-like disorder said she had health insurance through her parents when she was young, which was very helpful in providing a diagnosis and treatment. However, at age 18 she was no longer able to remain on her parent's insurance, and this made receiving treatment more difficult for her.
Another participant said that having access to appropriate coverage was so important that her father had worked two jobs to preserve coverage for her medical needs.
Other participants described difficulty securing consistent coverage through public health insurance programs:
"My parents were divorced shortly after I came down with rheumatoid arthritis. By the time I was 13 or 14, they were divorced, and so insurance coverage was spotty and my mother had to go to get Medi-Cal or Medicare. Then when she went back to work, we were covered again, and so it was off-and-on coverage. It was spotty at first until I was an adult and became employed [and] I got my own medical coverage. As a child, I was first covered by the insurance and then [Medi-Cal] during the teenage years."
A participant who received SSI said she was "supposed to get Medi-Cal," but did not, because: "You had to have been on another insurance for six months before the Medi-Cal or Medicare kicked in. By that time I was pretty much sick of Social Security and that's when I got off of it, just about when it was going to kick in, so I never really benefited from that."
One participant described the benefit of having access both to her father's and her mother's insurance:
"[My] first hospitalization was paid for by my parents' insurance. Either my father had insurance and then ran out and my mother's picked up, or the other way around, I don't remember which. After my first hospitalization, they took me down to Social Security and I applied for SSDI and SSI at the same time [at about age 22]."
Generally, participants were more likely to describe use of private health insurance than public health insurance during childhood, and those covered by private insurance were more likely to identify and discuss importance of insurance receipt as a critical support.
"[When I had my arteriovenous malformation,] I was going to school part-time and working part-time. I had no doctor. I had no health insurance. I had no nothing. [But] my parents had insurance."
"My mother took me to meet with a psychiatrist for my depression while I was in high school. The private insurance that my parents had through their work paid for my counseling and medication."
"The only medical [expenses] I really had were through my epilepsy and having to go down to University of Colorado in Denver for EEG's a lot. Also, my constant speech therapy and paying for the medications that I had to take when I was epileptic. My mother was working full-time at the time and I was covered under her insurance."
"I lived in the hospital. I always went to private specialists. My mom always said, ‘You HAVE to have insurance.'"
Some participants were assisted by charitable organizations that provided free or reduced cost medical care. For example, two participants said that the Shriners' Hospital paid for substantial portions of their medical services:
"Almost all of my healthcare when I was a child was received at Shriners' Hospital, which is a philanthropic organization. They provide free care for children with disabilities. [All of my health care was covered] till I was 21; anything I had done was totally free. It was really great. From the time I was a three-year old till I was 21, I was in the hospital no less than 22 times. I had like 21 operations, a bunch of procedures, so they provided the whole gamut of healthcare and support."
"They had to take me once a week from Northern California down to San Francisco to try this hospital, do all the doctor stuff. I had lots of reconstructive surgery."
Another participant with hip displasia received medical care at Los Angeles' Orthopedic Hospital, which charges families on a sliding scale. Another participant received free treatment by participating in a research study.
"My sister is a medical doctor and she referred me to a doctor who was doing research so I didn't have to pay him, and I got medication…and so that helped a lot."
Many participants reported paying out-of-pocket for medical costs, if not covered by health insurance. One participant was deafened by a head injury and reported receiving little medical care at the time because her parents had to cover the costs. She commented on the lasting consequences of improper treatment:
"I didn't even end up in the hospital. I went right home the night of my head injury. [I didn't get] the right treatment at first, which is probably [the reason for] some of the damage to my left ear, because at first my father thought I was faking a lot of it…My first four audiograms, I believe my parents actually paid cash for those. And after that…we did two health fair varieties that referred me for further audiograms of a more acute nature."
At least two individuals described instances in which medical providers did not believe their impairments when tested as children:
"In the seventh grade, they sent me to San Juan. It was something that I cannot forget. This doctor didn't believe that I couldn't see. And he was so frustrated. He said to [look at the top row of] letters, and I couldn't see [them]. For him it was difficult to understand that I was almost blind."
"I had like a regular hearing and vision test [when I was about eight, and] I did so bad on the test [the nurse] thought I wasn't even taking it. She thought I was just sitting there being obstinate. So she called my parents and said, ‘He refuses to participate.' My dad suggested that maybe he can't hear. That is the purpose of the test. They sent me to a doctor eventually and they confirmed it, I did have hearing loss."
In general, most participants did not report use of SSI during childhood. One participant said, "When I was younger, I didn't qualify [for Social Security] because my father made too much." Other participants cited lack of awareness as the reason why their parents did not seek public services or supports for which they or their children might qualify.
"My parents did not know that I could receive services."
"Those kinds of programs, we didn't even know they existed."
"Nobody came to my house or wrote a letter or anything telling my parents, ‘We'd like to offer you these services free of charge.' I want to stress we were a very poor family."
One person reported that he received SSI as a child because his mother had passed away:9 "It wasn't a lot of money, [but] it helped out my dad." A second person with mental illness, who was diagnosed while in college also, was able to obtain SSI with the assistance of her sister:
"My sister is an MD, and she made it really easy for me to get SSI. The interview was to see if I had the illness. She just did all the talking for me, using all the medical terminology, and I immediately got SSI. She referred me to a very good doctor. She said that families with my illness [will deny] that it's a real illness or problem.…My parents were in denial all the time about my having the illness. Because of my sister, it finally got through."
Among those who did report receiving SSI during childhood, most reported positive experiences with the benefit:
According to one participant, it was "definitely of value to have had SSI when you were in school and too young to work and you needed medications and other assistance."
A participant with a learning disability said that she had been on SSI all of her life and that it had been a very important source of financial help since she was a baby.
A participant with epilepsy said that he received SSI when he was young and that benefit was important for him both financially and emotionally. He said it made him feel more like the other kids to be able to "buy my own stuff."
A number of participants began receiving SSI in high school or later, and one reported that SSI receipt resulted in increased independence on her part:
"I did get SSI and that was when I considered myself emancipated from my Dad so I could…be on my own."
The family experiences of focus group participants varied considerably, with some participants reporting that their parents were particularly supportive, while others reported how they had to succeed despite a lack of support (or even outright discouragement) from their parents. Among participants whose parents were supportive, many said their parents encouraged them to accept their conditions, to make realistic choices, and to have high expectations of themselves:
"I was encouraged by the family. There was never any expectation that I wouldn't work."
"My parents were the ones who originally put me to work, and they always believed in me. In fact, they put me to work way back when I was two years old. My father did lawn jobs and cleaned houses, and anything I could pick up, that's what I did. He taught me to roll trash cans and everything else. I did everything and anything."
"Where I think my parents really helped was that I was required to be a responsible person in the household. I had my own chores. I didn't get any special treatment and I started learning how to make money early. My parents would take me down the highway [in our rural area] when the walnuts started dropping, and say, ‘Here are some gunny sacks,' and I'd have to fill them. I'd make money that way…I [was] learning early on -- just as anyone else with or without a disability -- the importance of work and learning. I wanted spending money, and guess what? They weren't going to hand it to me for nothing, so I had to earn it like my other siblings earned their money."
"There was always the expectation that I would do well and I would excel. I suppose in retrospect that was a good thing…I have a great-grandfather who was a founder of a university, do you expect not to [go to college]? Are you kidding! Oh, God! So that pressure was there. The motivation and support off-and-on was there, too. So, yeah, the extended family, as you say, and [my mother's] friends and my father's friends, on both side of the family they sort of expect that you will do well whatever you do. They didn't care [what it was] but whatever it was you better do well."
Others said their parents were important sources of emotional support and encouragement:
"My family was very supportive. [They told me] that I could do anything I wanted to. They were very helpful in keeping me emotionally set to go through life."
"My parents wanted to make sure first and foremost that I had as much normal experience as everybody else. They didn't want me treated special, but at the same time they obviously were concerned with my safety and well-being. So, they outwardly tried to encourage me to do as much as I felt I could do and not to worry about anything, and if I had a problem I'd come to them and they'd work it out. They're overall very supportive."
"My mom was a real fighter for me and we got my doctor involved, and my therapist, and my physical therapist, and everybody fought [for me]."
Some participants struggled with parents and family members who fostered a sense of dependence and disability:
"I had no idea what disability was until my mother said to me one day, when I saw the other kids playing, ‘I used to cry because you wouldn't get to do that.' [I remember thinking], ‘Why?' At that point I knew there was a difference. There were hospital stays, surgeries, other things like that until the time I got to be about 15. Everyone was doing things for me, putting [my] clothes on, and all of [the] stuff that I really wanted to do. Nobody would give me a chance to do it. It got to be rather awkward around puberty, so one night after a fight, an altercation between my mother and I, she said, ‘Well, I don't want to do this. I don't want to put your clothes on for you no more. And I said, ‘I didn't ask you do it in the first place,' and I've been doing it ever since. But coming from that background of having people do it for you and then finding out you can do it yourself, it's made me more conscious of the ‘super crip' mentality. I pushed myself way too hard."
"I was so sick when I was younger that my parents couldn't even envision any possibilities for me as I got older, so they never encouraged me to do anything. They figured, Why bother? I think it was hard for them to give us what we needed because they didn't understand it and [they'd think], ‘Well, you look fine,' but I'm not. I don't think they knew if I was lying or was trying to make excuses to not go to school."
"People didn't think I'd amount to much, neither of my parents expected me to graduate from high school or go to college."
"I was never expected to make a lot of money. You were supposed to do just a minimal job."
Three participants spoke about parents' low expectations or denial of the disability in cultural terms:
"I was born with retinitis pigmentosa, [and] everybody looked at me and they thought I was a normal child. They never thought I had a visual impairment.…I was born and raised in East Los Angeles. We were from a very poor family. My parents didn't have education. My mom dropped out of high school. She only completed the eighth grade and that was it. My dad came from Mexico. He said he made it to the sixth grade elementary.…In our culture, I had two strikes against me. I was not only a girl child, but I had a disability, which they couldn't identify. [For someone like me, school] was considered an extracurricular activity.…The reason my parents never knew I had a visual impairment at home was [because they didn't even notice] if I didn't read a book or read a paper, they didn't care. It was not important. They didn't have that, so they weren't expecting me to have that."
"My mother was born and raised in Korea. And if you go to Korea, you don't see handicapped people. They're either hidden away or sent to the country I guess, whatever, but you didn't see them. [For Asian-Americans,] it's a big thing -- number one -- to deal with someone who's handicapped in the family. I think your expectations as a parent, you lower them. You hope the best for your child, but you also think what the reality is probably going to be. They're never going to be able to support themselves. Who's going to fall in love with a person like this?"
"My father, well, we don't get along. When we see each other, he says, ‘Why should you take medicine?' because [in] my culture, people like my family don't believe in medicines. He's telling me, ‘Don't take no medicine.' Sometimes he tells me I'm faking it, that I can do better things, that I just sit around."
A number of participants discussed how in early childhood or at disability onset they developed a strong determination to succeed despite the low expectations of others. Rather than accepting the low expectations of others, including parents and teachers, they became intent on proving them wrong:
"My family was basically [thinking that] I'm going to be bedridden for the rest of my life. That's how they looked at it. My parents said, ‘You can stay here, we'll take care of you, you don't have to ever work again, don't worry about anything, we'll take care of you…I was still in the hospital, and I told them, ‘There's no way I'm allowing this. I have to take care of myself.' So I did. It did drive me, when I did start working, to go harder, and make sure that I achieved it. I know my life's a lot harder, so I gotta work harder. [We have to start getting ready] a couple of hours [early just] to have a nine-to-five job. So, our life is a lot more difficult. But, I'm willing to make the adjustments. It's all about getting used to your new lifestyle. Just gotta adapt. It takes time to get used to a new way of life, but it can be done."
"[My parents told me,] ‘I don't know why you're going to school. You're never going to get a job.' [So] those were the spots where defiance was the mode."
"[I learned to believe] that I have to be better than other people, because it's important because people look down on people with disabilities already."
"I had to get away from my family, basically, my brothers, my sisters, everybody because if I'd stayed with my family, I'd have a sighted guide forever. Couldn't walk down the street by myself or couldn't do anything, basically. [According to them,] I always had to have somebody."
Many identified one or more teachers as having played an important role in motivating them to succeed, and that the most influential were those who encouraged them to develop solid academic skills, held them to high standards, and encouraged them to be self-reliant:
"The teacher I had that from day one just kept saying -- we, all of us knew that we would be in college. We knew there wasn't any other choice and she'd shoot us if we didn't go. It was just a given from the time I was -- well, about six years old. I had her starting in first grade."
"My elementary school teacher. He was the kind of teacher [who] kind of knew your limitations. And if he knew you could do it, he made you do it. And I feel like he's the one who gave me the background that I have. He told me, ‘Either you do it yourself or don't expect [it]. Don't depend on anybody. If you can do it, do it.'"
"Maybe my mentor was my elementary school teacher, and I remember, he always…told us to always depend on yourself, never depend on anybody else…I think he encouraged me to do the things that I do."
"I went to a deaf school. [My teacher] said, ‘You can become a teacher, you can become anything you want to be. No one can stop you from your goals. One thing [she] emphasized was writing skills, and reading skills. And attitude. Those three things my teachers really stressed on me."
"[I]n sixth grade I had an amazing teacher who came from teaching special education…And, he saw me in his class and he just came up to me and said, ‘I'm going to let you help. If you have a day where you feel like you can, I'll let you pass out papers. I'll let you collect papers. I'll let you do whatever you feel you can do. …And, so a year of that, I got back a lot of my self-esteem. Then, I just kind of moved on from there. [In general,] my teachers were actually, I guess, really advanced for the time and they allowed me to stay in the [regular] classroom. They made accommodations for me. [They saw] how depressing it is when…all your friends are laughing and joking and walking out the door to go to lunch, so they allowed me, every day, to pick one or two friends to stay with me, [which everyone considered a treat]."
"My teacher in junior high was a really great mentor for me because she always encouraged me to try anything, to do whatever I wanted to do. 'Do the best that you can do. It doesn't matter whether you can see well or not, that shouldn't be the obstacle. Just go out there and follow your desires and your dreams, whatever your interests are.' Encouraging me to go to college, get an education because that is what's going to get me a better job, get me through in life."
At least two participants also described important experiences with teachers who served quasi-parental roles and provided emotional support:
"There was just a lot of encouragement, a lot of support, letting me know that I could do it. 'Cause I had a lot of stuff going on emotionally with me. When I was in that classroom, I guess it was the end of my high school years, I got pregnant and had an abortion, so she was there for me through that. She was actually at the hospital with me…Definitely, she went beyond being a teacher."
"I had an art teacher in high school. I was always smart but I would just stay quiet and not draw attention to myself, and I guess in her class, she was kind of Bohemian, you know, a Carol King kind of woman. So I was allowed to let go…They were going on a school trip, and she was like, ‘Oh no, you're going. We'll find a way. Even if the boys carry you up on the bus, we'll find a way to get you [there].' She took me to games and things in New York City, and the guys carried me on the bus and everything. I always just admired her. She was free-willed."
"I would say towards the end of high school, one of my Special Ed teachers -- in fact we still talk today -- was very supportive of me."
"My special ed teacher when I was in the 5th grade was a mentor. She took the time to teach me academically [and about] art and music…She is still in my life."
Several other supports were mentioned by focus group participants as being useful during childhood or at the onset of disability.
Assistive Devices. Among participants who reported using adaptive equipment in school, all had positive experiences. One participant was able to take driver's education in high school using a modified vehicle:
"They had the adaptive cars, so I actually learned to get out on the road and drive in there. So I felt like I had a better high school education as a result of my accident."
Another described a variety of supports that were helpful:
"I had problems with putting things on paper [from] my head. I had to use a tape recorder, I had to take physical therapy, speech, and my mom had me take dancing with my classes and stuff like that…It was the teacher's idea [to use the tape recorder]."
School-Based Work Preparation Programs. A number of participants in Seattle/Tacoma, Newark and Los Angeles participated in school-based work preparation programs and had generally positive experiences. One participant said she had enrolled in a 60-credit childcare class offering comprehensive information about the childcare industry and training to be a childcare specialist. She said her school paid for this class, and she was pleased with the training she received. Another participant said he enrolled in a school-based work program that included interviewing skills, which he said was useful in preparing him for subsequent job interviews.
Many described participation in school-based vocational programs, which typically provided useful practical training. For example, one participant, who graduated at the age of 20, attended a vocational high school and pursued a janitorial track. He said that he had held an after-school job as a janitor at the high school, which he believes may have been part of a work preparation program. Another individual worked as a busboy through a high school-based program. A third described his experience with a program that taught him a variety of skills:
"When I was going to school, they started putting handicapped kids into [a school/vocational program] and I was going to school, and I was sorting stuff out and…nuts and bolts, and right before I graduated in there, I [learned about] painting, spray painting cars, or a bumper, and it was real interesting. I learned a lot. I did dishes there. I took wood shop. They put you out in the community where you're helpful…It wasn't in a class. It was a trade for the school…where I went to school was…when they take you, something where you know how to do really good, and I was spray painting, and the guy was there with me, making sure I did it right. That was the neatest thing I ever did."
For one participant, junior ROTC classes eventually led to a career as a health care administrator following the onset of disability:
"So in high school we took junior ROTC classes and the closest to medical training was probably when we used to have medic courses, we used to do CPR courses, we used to always volunteer, go down to Red Cross to watch them give blood, see how they drew blood and see certain other tests. That would be the closest influence to how I ended up doing what I do now."
Two participants in one focus group said they took useful courses in money management in school, which have assisted one of the participants in his current job:
"I think the whole course was a learning experience. We learned how to write checks and we even got to tend stocks we would follow."
"I had the same thing. [We lived in an apartment, figured out] living expenses, food, gas, electric, how much it would cost. We also had to figure out how many hours we'd worked. [This class] has actually helped me out now because it helps me figure out how many hours I worked even if the hours aren't in front of me on a clock when I punch in."
Finally, several individuals had informal "work-study" arrangements at school and in summer programs. For example, one participant said:
"I would help out the secretaries, and then at the summer camp…they would give us jobs…like when I worked filling in when people bought things at the canteen."
In this section we describe the supports that participants found most useful in getting a first job and in maintaining current employment. Among the supports identified, participants spoke at length about health insurance, employer accommodations, and individual motivation. Participants also spoke about SSDI and SSI, in-kind support programs, and support from family and friends. We discuss each of these below. We preface the discussion by presenting information about participants' perceptions of the relative importance of selected supports. This information was collected via the focus group registration form prior to the focus group sessions.
Prior to the start of each focus group, participants were asked to complete a registration form. Included in the registration form was a list of supports that are often available to people with disabilities. On a scale of 1 (very important) to 5 (not important), participants were asked to rank the importance of these supports in allowing them to find and maintain employment. We have summarized the results by site (Exhibit 1) and by impairment (Exhibit 2). Differences by site might reflect differences in population characteristics and the availability of supports, but also might simply reflect variation in recruitment.
In general, the rankings assigned by Seattle/Tacoma, Newark and Los Angeles focus group participants are very similar (Exhibit 1). Nearly three-quarters of the participants at each of the three locales ranked family/peer support, access to health insurance, special skills or other training, college education and employer accommodations very highly (assigning 1's and 2's). Participants at all sites also ranked job search assistance, family financial support, family/peer support, procedures and medications, assistive devices and public income assistance (SSI, SSDI, TANF) highly (assigning 1's and 2's). Nearly three-quarters of Los Angeles participants ranked family/peer support as very important (1), compared to just over half in Newark and Seattle/Tacoma.
Participants in all sites assigned relatively low rankings to public in-kind assistance programs other than health (e.g., food stamps, housing subsidies, home heating subsidies), special education (as a youth), job coaches and PAS. Nearly twice as many Los Angeles participants ranked special education as not important (46 percent) as in Newark (25 percent), with Seattle/Tacoma in between.
Support rankings differed more substantially by impairment category (Exhibit 2) than by site. For example, while more than half of participants across all impairment categories ranked access to health insurance as very important, 80 percent of participants with mental illness and 90 percent of participants with other chronic illnesses assigned that ranking. Roughly the same proportions of participants with cognitive (71 percent) and mobility (68 percent) impairments assigned a rank of 1, while only 51 percent of participants with communication impairments ranked access to health insurance as very important.
Large proportions of participants with mental illness and other chronic illnesses also assigned a 1 or 2 ranking to specific drugs or treatments (88 percent and 95 percent, respectively), while less than half of individuals with communication and mobility impairments (47 percent each) did so. A larger share of participants with communication impairments ranked assistive devices and technology as very important (76 percent) than any other impairment category. Only a very small proportion (14 percent) of participants with mental illnesses ranked assistive devices and technology as very important.
The perception of the value of public in-kind assistance (e.g., food stamps, housing subsidies, home heating subsidies) also varied substantially by impairment. Approximately 70 percent of participants with other chronic illnesses ranked this support as very important, while the proportions for other impairments were lower, ranging from 15 percent (communication impairments) to 51 percent (mental illness). Participants with cognitive impairments were more likely to rank special education and job coach services as very important (50 percent and 70 percent, respectively) than other impairment groups (except participants with other chronic illnesses, of which 47 percent ranked special education as very important).
VR was slightly favored by participants with cognitive impairments relative to other impairment categories. Public income assistance was ranked most highly by participants with mental illnesses, cognitive impairments and other chronic illnesses (70 percent, 66 percent and 53 percent, respectively).
The supports with the largest proportion of participants with cognitive impairments ranking them as "very important" included job search assistance (75 percent), access to health insurance (71 percent), job coach services (70 percent), public income assistance (66 percent), and special skills or other training (64 percent). Those supports receiving the largest proportion of participants with cognitive impairments ranking them as "not important" included assistive devices and technology (46 percent), PAS (42 percent), and college education (33 percent).
The supports with the largest proportion of participants with communication impairments ranking them as "very important" included college education (79 percent), assistive devices and technology (76 percent), special skills or other training (71 percent), employer accommodations (68 percent), and transportation (61 percent). Those supports receiving the largest proportion of participants with communication impairments ranking them as "not important" included job coach services (57 percent), public in-kind assistance (50 percent), and PAS (40 percent).
The supports with the largest proportion of participants with mental illness ranking them as "very important" included access to health insurance (80 percent), specific drugs or treatments (75 percent), public income assistance (69 percent), family/peer non-financial support (66 percent), and special skills or other training (60 percent). Those supports receiving the largest proportion of participants with mental illness ranking them as "not important" included assistive devices and technology (63 percent), PAS (58 percent), job coach services (48 percent), special education as a youth (39 percent), and specific drugs or treatments (37 percent).
The supports with the largest proportion of participants with mobility impairments ranking them as "very important" included access to health insurance (68 percent), family/peer non-financial support (63 percent), college education (60 percent), special skills or other training (47 percent), and employer accommodations (46 percent). Those supports receiving the largest proportion of participants with mobility impairments ranking them as "not important" included job coach services (54 percent), special education as a youth (49 percent), public in-kind assistance (41 percent), PAS (30 percent), and transportation (26 percent).
The supports with the largest proportion of participants with other chronic impairments ranking them as "very important" include access to access to health insurance (90 percent), specific drugs or treatments (90 percent), employer accommodations (74 percent), public in-kind assistance (71 percent), and transportation (65 percent). Those supports receiving the largest proportion of participants with other chronic impairments ranking them as "not important" included special education as a youth (41 percent), job coach services (33 percent), and family financial support (21 percent).
Health insurance coverage is especially important for many people with disabilities, as their need for medical services is much greater than that of people without physical or mental impairments. Because of their medical conditions, however, people with disabilities often have difficulty obtaining private health insurance, or face restrictions in the types of services their insurance will cover.
For those receiving SSDI or SSI, eligibility to receive public health insurance was cited as one of the most attractive features of benefit receipt:
"It's not just Social Security, it's also the medical benefits. When you're mentally ill and you work just part-time, you get SSI, you get Medicare or Medicaid."
"I still have SSI [for my health insurance]."
"[In college,] I was on SSI. That's when some changes came about, where you could start making some money on an ongoing basis and then they'd deduct. As long as you were getting $1 in SSI, you retained your Medicaid."
A number of participants described the tension between securing employment and retaining access to health insurance. One participant sought assistance in retaining access to public health insurance while working.
"The Community Health Law Project [was] helpful in me getting my disability benefits, because the first time I was denied, and so they were able to help me get them, and even now, [they] help me to keep my medical benefits while I'm working, so I can get work. They've been helpful with that."
Access to health insurance played a key role for many participants in influencing decisions to enter the labor force. Because receipt of public health insurance for people with disabilities is typically linked to receipt of SSDI or SSI, becoming employed can threaten receipt of health insurance. Many focus group participants described struggling with the choice between seeking employment and losing access to SSDI or SSI, and retaining secure access to health insurance:
"[Healthcare] is one of the biggest [issues] for me, more than accommodations. If the government really wants to help people continue employment and pay taxes, then find ways to get rid of some of the regulations and stupid rules that prohibit people [from working]. Most people I've ever met, it's like, hell, I don't need the $500 that Social Security gives me [but I need the Medi-Cal]. I can get a good job, but I can't live without my health insurance."
"A lot of people don't work because they do not want to lose their coverage, but it was a chance that I had to take, I just could not live on SSDI alone. I still do use long leg braces that Medicare pays for."
"With my thing, it's more a matter of medical costs, that there's just no way that any normal person can handle the medical costs. I mean, I have the ability and desire to work, as long as I get a certain medication."
"[In] the past three years, each year I've had some sort of major operation, [and] if I didn't have Medi-Cal, I don't know that I could contemplate what would have happened…I got a letter a month or two ago [about] sharing costs. I haven't followed that up. I figured when they learn about it, they'll let me know and until then I'm not in any big hurry to lose my benefits, because I still have a lot of health issues and my job -- even though it's Federal Government -- is still considered temporary, so there's no benefits whatsoever. To lose that Medi-Cal could be catastrophic."
A number of participants emphasized the primary importance of sufficient health insurance coverage over other benefits and employment when facing high medical costs:
"[M]y obstacles are all pretty much based on financial matters. I'm sure a lot of people in the room have probably been in the same situation. I got some medication after extensive visits with doctors, and that medication is what allows me to function. They say, ‘Without the medication, you're going to end up probably back where you were.' Unfortunately, the cost of the medication is just ungodly, and even with Medicare, I have a 20 percent responsibility, but that responsibility ends up being close to $10,000 a month, so what do I do?"
"My husband has insurance, but I don't have it through my work. If I didn't have it, my medicine is $1,000 a month that we'd have to pay without insurance."
"I can't say enough about my insurance [through employer]. Like this little gizmo [scooter] costs $2,300. My medication is $20 per day. If it wasn't for insurance I don't know what I'd do."
In a discussion among blind participants, most reported that having or losing government benefits was not instrumental in making decisions about whether or not to take a job, but that employer benefits were certainly a consideration. As one participant noted, however, that the need to retain access to public health insurance for people with other types of disabilities (for whom medical coverage might be more critical) might be much greater: "I think that impacts people more with high medical expenses more than it impacts us."
Besides high costs, other concerns include the substantial length of time needed to gain Medicare coverage. SSDI beneficiaries must wait two years before they are eligible to receive Medicare coverage.
"It's been a long journey, but I at least now have some Medicare coverage."
Another participant pointed out that even after he received Medicare coverage, often he could not get the coverage he requires.
"I have Medicare for five more years, they just extended that, [so if] you work you have five years at least, so I'm still on Medicare. But it's still bad, it takes you three months to get an authorization, it's so hard and they deny, deny, deny for what we need. So, that's the hard part."
Many participants described work and other management strategies they had employed in order to retain health insurance coverage. Typically, participants managed their earnings in order to retain Social Security benefits, which, because of the link to public health insurance, allowed them to retain access to public health insurance. For example, one participant said that she only works part-time so that she can avoid the loss of her medical benefits. She previously lost her eligibility for SSI because she made too much money, so now she keeps her earnings low enough to maintain her medical benefits. She said she fears working full-time and losing her benefits because she is never sure when her disability may get worse and require her to cut back hours. If this were to happen without access to her current benefits, she would not know what to do.
Another participant said:
"I was able to work part-time by joggling the figures, so I was able to go to work at the college. Then I reached a point where I was making too much but by then [my employer's] Basic Health was available…and then eventually I got on as a permanent classified employee so I have my health benefits through the college. This is a brand new wheelchair that I just got on Friday. The cost of this chair was almost $26,000."
A number of other participants reported negotiating successfully with employers (and others) to prevent loss of Medicaid benefits due to earnings. Participants reported using a number of strategies, including taking time off, shifting responsibilities, working without pay, shifting to part-time employment, and turning down promotions. For example, one participant said that he makes sure that he does not go over the earnings limit, and that his boss keeps tabs for him and tells him when and when not to work.
"I can make a maximum of $699 a month, but when I go over that I'm in danger of losing my Social Security, my SSDI. [I get benefits counseling] from the Job Seekers' class about that particular issue. They're willing to intervene for me with my job or with my boss if I'm in danger of going over that."10
"I'm getting Medi-Cal, [but] I'm being threatened all the time to be kicked out [if I] work too much. So what I have done the past few years [is] take vacations whenever I could [so as not to make over a] certain amount of money. My employer is real nice about it, they told me to do whatever I have to do."
One participant said she works fewer hours at her job in order to maintain her benefits and still collect SSDI. She said that she chose a minimum wage job so that she could work a maximum amount of hours and still stay under the limit.
Participants said that having medical benefits was critical in managing a disability, but that they had difficulty obtaining good information about Social Security benefits and, more importantly, about balancing benefits eligibility and work. Rather than risk losing health benefits, several had tried to limit their income ("I hoped I wouldn't get a raise") or chose not to work at times.
In some cases, participants reported that they were advised by program personnel to manage earnings. Several reported having been advised by VR counselors and others receiving benefits to stay underemployed to keep benefits, while another said:
"I can remember quite some years ago, I actually had a caseworker tell me…because I kept saying I want to go to work, I want to go to work…she said ‘the reality is you can't work because if you go to work, you lose your benefits, you have no medical coverage, you have no health coverage, what are you going to do?' This was a caseworker with DSHS and she said ‘I'm telling you this in your best interest.' This was a long time ago because at that time, I would have lost everything."
Several participants described advice they received from health professionals regarding benefit management:
"I went to an eye doctor in New York and he was the one who said, ‘You can't work, you're blind!'"
"…my joints were going and I was only 30, and my x-rays were flying around the country, with a series of doctors saying, ‘What do we do with this person?' So the doctor was strongly advising me not to work, to buy some time not to be active."
"Even though I was qualified with the school district, I kept my own individual insurance because my doctor had told me, when they thought there's a possibility that I might have MS, he said two things. ‘Don't ever let your health care lapse. Don't lose your insurance benefits. It's going to be hard to get it back.' And the other thing is he told me to keep working."
A number of participants indicated that their insurance, whether public or private, did not cover all needed medical care. Participants said they paid for such care out-of-pocket, sought coverage through alternative sources, or found unconventional ways to gain access to needed services:
"There might be some clinics that would normally service homeless people that don't necessarily require that you have to have insurance. And some of them are really pretty good because the doctors that go there are really caring people, like Pioneer Square Clinic or something…I think they'll work with you [on medications]."
"Pharmaceutical companies have scholarships, also. And all you need to do is write them or ask your pharmacist to call them, send you an application."
"I relied on my parents until I was like 18. When my parents benefits stopped, I relied on the public health system, you know, going to free clinics that kind of thing. And, I actually got married because I needed an operation. So that is how I got health benefits."
"My doctors gave me samples for like, two years."
"When I became independent and started having my own benefits in my name, I got what was called a conversion plan from my father's policy. It's health insurance that I had to pay for, but it supplemented Medicare which didn't have any prescription benefits. This had prescription benefits…When I got my first job, I found that it didn't have very good mental health coverage, so I kept this policy through my first job and even afterwards…until I got my current job."
A number of participants said that even though they considered features of private health insurance carefully before accepting an offer of employment, they were not always able to accurately assess benefits, or to secure the level of benefits they desired:
"[There's] no insurance at all in the new occupation that I picked, [although] I didn't actually know that until after I got the job. That was my choice, though. And as soon as I start getting money in, there are places out there for private insurance…Up until this career change, I had full insurance that was covering my medication, [with] the little $10 co-pay thing."
"[I had] the best doctor in town at [the mental health center, paid by] Medicaid up until the point I got my job.…It was a long time before I realized that [the MH center] was not covered by my insurance, [and] my doctor wasn't being paid by my insurance agency. Then I finally got my bill and…it put me in a lot of debt.…So I lost my doctor as a result of me getting my job, [and] I've not had as good a doctor ever since.…I get a new doctor every six months, [and] with my particular illness, I have to retrain a physician almost every time I have a new doctor…The logical conclusion is, if I wanted good health, I would have stayed unemployed."
"One thing that I'd think would be helpful is government should have some type of program of subsidy for the medication that you need. My new job, I signed up for group health and I [right away] thought, do they cover the medication? I wanted to…be able to work full-time and still afford my medication. Luckily, I found out that my health plan does cover my medications, but there might be other medications that other insurance plans won't cover, and it's hard for a person to get off a system, want to work full-time and still be able to afford the meds."
Many participants described their experiences in searching for employment that would provide access to private health insurance comparable, or superior, to coverage under Medicare or Medicaid.
"My family and other people told me ‘because of your medical situation, you need to maintain your medical with the state, you're going to have to look for a particular job so you can keep your benefits and maintain your health.'"
"In today's society you can't make a move if you don't have insurance…so people that are [looking for work] these days, they want the benefit package. They're looking at employers, [and asking,] ‘What kind of an insurance package do you offer?' When I came here I had to ask the same thing. I had a wife and a kid to worry about."
"In the job that I'm in now, I'm getting health coverage, but…if it's a preexisting condition you have to wait six months before you can get put onto the health plan. You make too much to get it from Medi-Cal, so you're stuck in the middle. All the money that you make has to be spent on meds and all that kind of stuff and you hope you don't have to go into the hospital. It'll be six months before I get out of the minefield. So when you ask do I have health care, basically, not at this point."
Once employed, participants noted that continuous access to sufficient private health insurance was not guaranteed as some employers might choose to make unanticipated and disruptive policy changes:
"I work for a small company, so as health insurance goes up, his policy goes up. He changes, so sometimes when he changes, you're forced to change doctors. But right now, that's the only insurance I have, since I'm no longer qualifying for Medicare or Medicaid."
"My husband's company changed insurance plans, and I went from paying a $20 co-pay for medications, to 50 percent of the cost. Everybody else thought that was great, but when you have $1,000 a month [in meds], $500 a month was too much. A lot of stress and phone calls later, I found out through a drug company that they have a program that you can qualify for …I was able to go under that and then I only had to pay $30 for medication."
Among participants with access to needed private health insurance through employment, retaining coverage served as one of the main attractions to continued work, regardless of the circumstances of employment:
"I think they're trying to get me to quit because there's only one, as far as I can tell, really, really unpleasant supervisor to work for, [and] after about a year they shifted me to him for no apparent reason hoping he would scream at me and yell at me and chastise me, so that I would just quit. That was seven months ago and I have not quit yet. You want to know why? I need the medical benefits so badly. They're worth more to me than the wages are."
"The only thing that keeps me on the job is medicine to stay awake. I have to have insurance to pay for the medicine."
"Sometimes when…co-workers are just about as insensitive [as they can be…and I'm just about to walk out that door [and never come back], the Lord just kind of reminded me, 'Chris, come on, you've got kids, a family, responsibilities…The reason people work is exactly what you were saying, insurance coverage…that's the reason I need to work, I need to be responsible enough as a parent and adult to say, 'All right, so I don't feel like doing it but I do it because there's a need there.'"
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."
Participants highly valued supports and services that were individualized, and that enabled them to participate more fully in mainstream society. For example, participants were most pleased with VR providing or paying for equipment and services, such as computers, assistive technologies, transportation, education, and third-party training. Such supports targeted specific needs and promoted independence. They were less satisfied with services received in a "sheltered" or segregated environment, such as job training provided through the state VR system.
"The $13,000 worth of equipment, the raised roof, a lift and all that -- DVR paid for most of that. I paid, I think, a thousand dollars co-share."
"DVR is a very, very, very, very good organization. It's been really good with me. They paid for classes [and] class fees [and] they paid for my books. They gave me transportation, supplied me with transportation, gas."
"I decided to make a career change. I went into computer programming. For a whole year I went for job training. It was a special program for people with disabilities. DVR was one of the co-sponsors, and paid for it along with PIC [Private Industry Council], and I learned programming."
"DVR, about five or six years ago, also bought me a computer with voice recognition technology so that I could do my current job using computer technology."
"Well, I did go through DVR for my education. They did help me with adaptive equipment for my van. I can say just like they were, like, no help in helping me find a job."
"I had my tuition paid. [But even though] I hadn't finished all my [program] yet, I wanted a job. I wanted to get employed. And I was just tired of [school]. I wanted to see that paycheck every two weeks, every three. So they transitioned me into the PWI program, the Projects with Industry. The PWI assisted me, [but I was going on] job interviews and not seeing any good results. My last interview was where I'm currently employed at, and I just went with a lack of motivation."
"I went to college, and I also attended massage school and became a certified massage therapist, and I became a certified personal trainer, and I went on to earn my BA degree and a Master's degree. [DVR] paid for my schooling all the way through to my Master's degree, tuition, and books and supplies. They paid for me to go to massage school. They paid for me to have an interpreter sometimes. They paid for me to attend an independent living program. They paid for clothes for me to go out on job interviews. They paid for a computer, for assistive technology, transportation, repaids on my cochlear implant, a talking calculator, a talking personal organizer, [and] a tape recorder to hear at night."
Others, however, said that VR funding fell short regarding education:
"Okay, so you got transportation and you got your Bachelor's [degree], but trying to go to post-graduate [studies], no way was VR going to help."
"They paid part of my tuition. I got a scholarship to go to USC, and they wouldn't pay tuition for USC [only an amount] that was equal to a state college. They paid for my transportation, my books, supplies, like a tape recorder and that sort of stuff."
Others noted the agency's excessive bureaucracy made timely access to services difficult:
"That's a real problem, transportation. [Like she's] saying, her van is falling apart. Then when you get approved [for a] van and get evaluated, it's a three-year process. So in the meantime, you [still] have a disability and it could become aggravated."
"And sometimes it takes up to two years to get a wheelchair…"
"The system is endemic with red tape."
"I'm trying to get [DVR] to help me get -- hopefully, eventually -- a new van. My van is 14 years old and it's been rebuilt and rebuilt and rebuilt and I've had to pay out the money for the rebuild. I tried to get them to help me financially."
One participant said that despite its strengths, the VR system has minimal positive impact on employment:
"During my junior year [of college] we decided to see if [VR] could assist. Certainly they didn't with tuition because it was a private university, but they did help with paying for readers and textbooks. [People may] get some peripheral assistance from [VR], maybe with textbooks or financial aid or whatever, but the people who really are successful and find work tend to do it despite, rather than because of, rehab."
One participant, who worked as a rehabilitation counselor, was reluctant to apply for services from VR:
"I've gotten all of my jobs myself, especially since I started working as a job developer about four years ago. [That's] because if I go through Department of Rehab, if I open a case with them, the problem is I'm serving [VR] clients. So my big worry, and I've seen it happen, is if I go and I get a case open, then I look less capable myself and the rehab counselors for the Deaf will stop referring [people] because then I'm no different than the clients because I am one. So I really cannot open a case at VR unless I want to shoot my own foot off for the rest of my career."
Particularly for people with MR/DD, job coaches provided through VR services play very important roles. Such coaches provide motivation and support, serve as a source of information about services, mentor and counsel individuals, in some cases accompany individuals on job interviews, and even help resolve employment disputes and difficulties. Because the role of the job counselor can be so critical, participants' perceptions regarding VR may be heavily influenced by behavior of the job coach or case manager.
"I wouldn't [have gotten the job I have now] if somebody wouldn't have been with me because I stutter so bad in front of people, they will not even consider me…I have not stuttered since I got a job."
"If a normal person goes into a job, it's very easy for them, maybe not always easy, but they just kind of take it for granted that they perceive what they're supposed to do and what their boss expects from them. But someone with a thought disorder might not necessarily perceive things that way. And so having like a support to kind of help you learn how you're supposed to perceive your job, I think is a big help."
"I've had DVR counselors where you call them and they're not there. You leave a message to call back and two days later you call and [so on and so on]."
"I don't know if the counselors support us, or they are just here to do their daily job and do it and get it over with and go home."
Participants noted that the levels of knowledge, compassion, and skill of VR staff are important to success of VR services, and in the absence of a qualified counselor, it is important to self-advocate and have a clear idea of what you want. One participant said he was glad that he had determined in advance what kind of job he wanted and where he wanted to go to school, because he could not have relied on VR to help him make these decisions. According to VR's vocational assessment, he was suited to be a truck driver, clown, or cowboy. Because he had a physical disability that limited his ability to drive a truck, he was "left with" the choice between clown and cowboy. Another said:
"We [need to] talk about trying to change the attitudes of the professionals that are supposed to be out there helping us. I've found a lot of them to be very paternalistic. It's sort of an us vs. them type thing. I actually have to walk sort of a fine line because I'm a person with a disability who's also a professional in the disability service agency."
Several individuals with mental disorders indicated that they were not successful in obtaining assistance from the traditional VR system, but were able to find the employment services and supports they needed in the mental health system. A few individuals also reported being discouraged from going to work by mental health providers, but some of these same individuals said that they had been encouraged to seek employment within the mental health system after receiving treatment for their disability.
"[There's no DVR policy that says that] people with mental illness can't go to work. [But if you] consistently, outrageously, did wild things, and lost jobs, I'd think that be the one time we'd say, ‘Come back when you get your behavior under control.'"
"[If you're in the mental health system], not only is it not expected, it's not in their interest for you to work because…they're not receiving funding for you being there [getting services]."
"My [MH] case manager, he just saw there was something there and he felt that I really should be and really could be working, and so he encouraged me."
"[I'm working at] the mental health center, getting my medications, and talking to my case manager."
Focus group participants reported a wide range of experiences with employers in seeking accommodations for their disabilities, including modifications to elevators, doors, entrances and exits and other features of the building; receipt of additional training time; receipt of flexible job hours; ability to work from home; or changes in job duties. Employers provided some accommodations through formal disability integration policies, and other employers provided supports more informally. In all cases, participants regarded the accommodations as important, or even essential.
Among building modifications, the installation of ramps and other features to accommodate wheelchairs were most often cited:
"We have handicapped parking, we have elevators, we have ramps."
"When I got there, they'd been in three different buildings and when I moved to the second building, one of the problems I had was getting into the restroom, and they put an automatic door opener [installed in the] restroom, which was wonderful. They tied it into a remote they gave me. [I also have a remote for the] front lobby doors. The receptionist saw how easy it was and asked if she could have one as well to let people through the lobby doors."
"They moved our mail slots down lower for us where we were at, so we could reach them. I think because we work at a rehabilitation facility a lot of things are already adapted down for us so it's not like specific things that we had to ask for, maybe except for a computer and phone, but for me, not that much that had to be done over."
"One thing they did do for me personally, because the way the bathroom door swung in, so they fixed it so that it swings out. And that is one thing that they did do for me before I started working."
"Oh, another thing, they did put a little ramp in front of the door, so that anybody could push me in. Before it was the steps, only the boss could do it, but now anybody can push me in."
"They did lower the desks down to make sure they fit you exactly."
A number of participants said that flexible work schedules were a particularly important accommodation. Flexible scheduling allows them to work efficiently, keep doctor appointments and stay healthy:
"The real obstacle was going to be finding a company that would be considerate if I had to take some time off for myself, for my health. Having that built-in flexibility was the real obstacle."
"[My] work schedule is pretty flexible because I travel so far to get to work. I'm never really sure what time I'm going to be there. Sometimes I leave early when I want to get home [early]. My employer is pretty reasonable about my schedule."
"They've always been willing to accommodate me…One time I was always late because of ACCESS [public transportation], and I had to talk to [my boss] about it and explain it to him. He was nice about it and is always telling me, ‘If you need anything, tell me.'"
"If I needed anything like [flex-time] they made it clear that they'd be willing to do it."
"[Before,] I would report every time I'd have a doctor's appointment and say, ‘I'm going to have a doctor's appointment. I need to be gone for two hours,' and she finally said to me, ‘Stop telling me and just go. Do what you need to do.'"
"As long as I tell my boss that I have doctor's appointments, like, two weeks in advance, they work around me."
"I have flexible work hours, time off for appointments, and the ability to work at home when I am feeling stressed out."
Participants, particularly those with hearing or vision impairments, also commonly reported access to assistive devices and technologies. Such technologies typically included computers with Braille and speech access, optical character recognition software, Opticon (to convert text to large print), JAWS software (converts computer screen output into speech), TTYs (teletypewriters), electronic schedulers, and others.
"[I work for] a non-profit organization that provides services for deaf and hard of hearing people, [s]o we have access to interpreters. [W]e have TTY, e-mail. I don't use a lot of accommodations myself because the environment itself is very deaf-friendly, it's very easy for me to come in and feel comfortable. In the past, where I worked, I struggled, but here, it's different."
"I do have a computer with Braille and speech access. I have an optical character recognition scanner and can scan stuff in. I'm great with the Internet."
"They provided me with a stretch-belt [that] was way better than the one I went to the store and bought…It helps a lot to have that [because] it's much more firmer and helps in the lower back part. It's a really big difference when your back is killing you. It helps me out to have my stretch-belt on because it helps me stay more focused. Not everybody knows that, but I know it and it does help me feel more focused."
"I have a computerized calendar that will come up and remind me that I'm supposed to go places, and also we have a phone system that will call up and remind me to be some place."
"I have a lot of accommodations. I have a special display that I use to read computers and I use a Refreshable Braille Display…And then on the telephone, I use a headset with an amplifier so that I can have my hands free. I'm mainly at the computer."
"I have had a computer with adaptive equipment…I use a CCTV to help me, so that's helped me on my job. [Also,] recording devices, such as a tape recorder. I have a talking calculator. [Support] has definitely been there for me; those types of accommodations help me do my job."
"My employer has provided me with all of my adaptive technology, closed-circuit TV, and so on."
Below is a list of the accommodations most frequently provided by employers as reported by participants:
Nearly universally, participants said that the behavior of immediate supervisors played a major role in job entry and career development. Having a supportive supervisor aided in securing accommodations, educating co-workers about accommodations and disability, protecting confidentiality, and ensuring that co-workers provide tools and information necessary for the individual to complete tasks:
"The job I got now is the best one I got, ‘cause they are supportive and they know how to treat people with disabilities. What they did on another job is that they would fire you. Here they just sit you down and talk to you."
"And one thing I will give my supervisor, he'll fight for your rights, like if he feels like this piece of equipment will help you be more productive, he will go to his director, which is the vice president, and somewhere they're going to have to come up with the money."
"My supervisor sat down with me and said, ‘I think you should be transferred because the work that you're currently doing is too easy for you,' which I agreed with…They arranged for my transfer to Dallas. [But I decided] I am not going to [go] out to Dallas, I am going to go with this other position [here] because I have somebody who understands deafness, who understands me, understands my needs and this is where I'm going to go."
"My first boss at Nabisco was a great guy as far as making accommodations for me. He made them knock out this whole wall. I had this nice place with no walls. It was wonderful."
"I just lost an employer who was wonderful. This man came in six months after I had become totally deaf and he could communicate with me perfectly well. I finally got to a comfort level where I was able to tell him that, 'These people in the building and in our office will not let me do my job. They're going to everybody else to ask their questions.' He took a hold of the situation and he redirected everybody. Everybody who called him on the phone with a question that was mine to answer, he said, 'Call Christine, or email her or walk into her office.' Everybody who walked in his office with a budget report, he said, 'You go see Christine.' He just pushed in that direction. That helped a lot. He also implemented site visits for me to go out into every one of the buildings every month, so I meet face to face with principals and bookkeepers in every building, and we can improve communication and they'd stop being afraid of me."
"The young lady that is now my supervisor for over a year, she gives me great support. She really goes in. She listens to what I say and the problems that I have…I can advocate for myself, but she can do it on the supervisor level, and that makes me proud that there is somebody in my corner who will listen to me and will help."
A number of participants cited substantial difficulties in gaining access to needed accommodations. In some cases, they were able to prevail, and in other cases they worked around the lack of accommodations:
"I had an office in the administration building…I used to go in once or twice a week…because I'd have to interview people when I hired them. But the building is not easy for me to get in. I mean there's a ramp, I'm in a wheelchair so I really have to huff to get up there. It's like a ramp like this, I can't get into the bathrooms, and it's hard for me to get around within the building because everything is very narrow. But now I don't even have an office because since I was never there they sort of reallocated my space and didn't even ask me. All of a sudden I had no place, so I can't even get to my files. It hurts my feelings I think more than anything because I don't have a space there, but it gives me a good excuse to not go in. So now I do 90 percent of my job at home whereas I used to do 70 percent."
"I wish I could receive permission to telecommute. I'm fighting for that now. They're denying me. They said that telecommuting is not a reasonable accommodation, that telecommuting has to do with the distance that you live from [work] and not from your disability. They did allow me [to work out of another] office on the days that I was supposed to wait to see if I was called for jury duty. But I don't think that is a reasonable accommodation. I think I was accommodating them, frankly."
"Where I work now is a steel warehouse. There are no accommodations. They're actually putting in a ramp now so people can come through the front door. But, inside the building there's steps and different levels all over the place."
"I've gotten a lot of help from being able to have my own ‘techie,' my own technical assistants, a guy that I call because I do most of my work on the computer. I'm also linked to the network, but I can call him and he can come out and set up my computer and modem and do all that for me…It makes a big difference because when things aren't going right, I'm just cut off…The district isn't thrilled about me having him…They kick and scream and don't want to spend money to have the tech guy come in and spend it just for me. That's not given to me [as an accommodation]. It's just that I said, ‘I need to do this job, and school is starting in two days and the computer doesn't work, and if somebody else is going to staff the subs, that's fine…But it makes a big difference."
"Neither [my employer or VR] wants to pay [for] Dragon Dictate [computer software], and it's been a constant runaround for the five years that I've been [with VR]…It's relatively cheap now, [but] we don't know who's going to pay for it. Instead of fighting this tooth and nail, which I still do on occasion, I concentrate on the parts of the job that I can do, but it's getting to the point where it's ridiculous."
Participants also described various experiences negotiating with employers for needed accommodations. For some, providing information and technical assistance to an employer was sufficient, for others, accommodations were substantially delayed or never received due to differences between employees and employers regarding priorities, or lack of access to information:
"I needed a raised desk and everybody [said], ‘Oh, gosh! They're so expensive,' because they were thinking in terms of electronic up/down. And I'm going, ‘Huh? I need four wooden blocks under my desk legs. Make a hole so the leg fits in so it's safe.' And there you go. And it was like, ‘Oh!' It must have cost them all of $3 to find some scrap lumber. They were thinking in terms of several thousand dollars for a very expensive desk. No, no, no, no, no that's not what I want."
"I have a very similar [situation with my keyboard] where I actually went out to the trash, found a couple of cardboard boxes, put the keyboard on top, and said, ‘Right! I'm accommodated.'"
"[At] the very same meeting they announce they're not going to get automatic door openers, they [say they're] providing automatic flushers for all the toilets in the facility. We're not going to get the door openers because they said that the doors that we currently have meet ADA requirements and we [have to spend] the money on the automatic flushers."
"We didn't have a Zoom Text. We didn't have the equipment that I needed to perform the job that I wanted to do. All I had was a computer. I did not have a CCTV [either, but] I was able to acquire a CCTV loan through the Braille Institute."
"I had to come in with a CCTV and large-print software. Right before I left my job they were speaking of purchasing a computer that had large print in it [because] they thought it would be accommodating to me."
"[Large-print software] wasn't put into my computer until very shortly before I left, also."
"It isn't because [my employer] isn't willing to buy me equipment and offer me training if I could just tell them where I wanted to go to get the training."
Several participants cited co-worker or supervisor attitudes that made gaining access to needed accommodations very difficult:
"I found that some people, especially old timers, still have an attitude about it. I mean old, '70s, late-'60s. ‘You know it costs money to build ramps.' They've got that mind-set, back when they were a kid, cripples stayed home and ‘I'm paying taxes to put curb cuts in for you.'"
"As far as accommodations at my workplace, they have built a cubicle a little large to accommodate the chair, but it took three years to get electronic doors in the front entrance of the building. After vigorous complaining from me and other employees and the clients that come into the center, it took a while for the landlord of the building to make changes that needed to be made.…The doors are still really heavy in the building, but by and large, physical accommodation is not a problem. It's the attitudinal accommodations that get me in trouble."
Participants also said that supervisors need to understand the nature of the disability and the required accommodations, and when they do not, employment situations often fail. Newark participants were more likely to have stories about an employer failing or refusing to accommodate a disability and to report concerns about divulging the presence of a disability to an employer or potential employer.
"…I asked for accommodations,…for 32 hours instead of 30 and I had a doctor's certificate about it. They said they wouldn't compromise the security of the building, and [I] was not granted any accommodations. So I quit, basically because their approach was, ‘Now you created us an ADA case,' although they knew I was disabled before they hired me. It was not a very good situation."
"I was asked to become competent on the computer and I [told them] I couldn't as it is currently constituted, I simply can't read the screen without burying into it, which then precludes my using the keyboard. There are all kinds of devices…that [would make using it] very easy. When I asked for it, I was ignored. Reasonable accommodation would seem to apply that it would be forthcoming, but it hasn't been."
"The other thing that is supportive is if my employer or anybody acknowledges that a mental illness is a disability. Because the job I had before the one I have now, I was actually fired. And there was nothing I could do about it because I didn't have an advocate."
"I was provided with a Teletype device. You know, a phone for deaf people? And that was great. I didn't even have to tell them about it, they just knew that it would be a support that I would need. The only thing that I had to tell them was that they can't call last minute meetings because I need an interpreter, and at first they weren't even sure what an interpreter would do…They were a bit awkward about how to get one, so I said let me do the work, and I did. But after that I really felt like it was the manager's job since they were the ones planning the meetings, to also plan for an interpreter."
"We moved offices, and right before [my supervisor] signed the lease agreement she sent me over there to make sure it was going to be accessible for me, and told me to go into the bathrooms and try the doors. And if anything was too heavy or I felt it was non-accessible, to speak with the managers of that building right there and then and let them know and see what they are willing to do before we sign the lease ‘cause we could have still backed out. And they were great, I mean, they went in and they worked with the spring of the door and loosened it, so that it wasn't so heavy to pull open and it would stay open a little bit without slamming right shut. And did the same thing down in our offices with the back door, so that I could pull the back door open and come in and go out that way."
"[If] supervisors and co-workers…understand job accessibility and job accommodation, then they don't feel they have to take on more of your share."
"If [employers] just understand that people with disabilities can get the job done and do a good job, that we're conscientious, then they're a lot better off than with those people who maybe aren't conscientious in doing a job…We're not quitters."
"I was trying to become a cashier there and I guess I lost my focus one day and I gave the person back the wrong amount of change and I blew it. I blew it so bad. I only did it that one time…The guy gave me a $10 bill and it was for $1.38, and I gave the person back $1.38. I don't know why I did that. I just lost my focus. It just felt so bad because it's just right there on the register itself, it tells you how much to give him back. You don't even have to think about it yourself…It's just a matter of me getting used to it. I have a lot of confidence that if I was given the opportunity to do it again, I think I would do much better and I would be able to do it but they haven't given me another opportunity to do it. I asked several times."
Many participants said that lack of understanding about disability sometimes led to anxiety and fear among their co-workers:
"I was working in a hearing environment, and many of the people had known me for 12 years. Suddenly I was totally deaf, and people stopped talking to me. One of my biggest experiences was the absolute vanishing of support when that change happened, in a place that I had been for years. People were afraid of me because they didn't know what to do."
"[Sometimes] your co-workers just simply don't understand or don't have any knowledge of disabilities and they're scared because you have a disability -- like it's catching."
"There's another underlying reason why society generally seems to put lots of us in whatever boxes they can. That's the real fear of anything that's different, either physically or whatever else you don't understand. I've been a blind guy for 47 years and I am absolutely both amazed and appalled at how very afraid most people are about blindness…I try to appreciate it, but I really don't understand it. It's because of what peoples' individual and congregate misconceptions are. And it doesn't matter whether you're blind or you have a hearing impairment or dealing with an illness or what it is. It's the same old kind of stuff of fearing disability. There are lots of people out there who because of their experiences really have a hard time accepting just people as people. I think that's the problem that lots of governmental entities have…But it's an underlying thing, when we have a chance to relate one with another, we really come to recognize that most of us probably have a whole lot in common no matter what our [differences]. Disability doesn't have to separate us at all. It can help us to be able to support and encourage each other...I don't think that's gotten through to some of the governmental strata… People with disabilities don't need handouts, just support."
Participants also reported that the willingness of co-workers to learn about the nature of the disability was also important for ensuring a comfortable and productive work environment:
"The only time I really feel disabled is when I go in the office. Being that I'm a client and I work there also I get to see both sides of how people really feel and act around the worksite. The language sometimes is straight out of the 1920's as far as describing disabilities. People come up to me [and say,] ‘We don't know how to deal with you. We've never had a person on a caseload working here before.' I've had to tell people while I'm on the job; you treat me as an employee. Once I get off the job and you have to deal with me, deal with as [a person]. And if you're my case manager, then you should have a good working relationship with me anywhere. So it's that three-pronged attack that I feel when I go into the office."
"When I work around a lot of people, they make me uncomfortable. [There] might be one or two people that I'll open up to, [but] other than that it's like everybody else I'm uncomfortable with. I'd rather be outside or I'd rather be just by myself, basically, instead of with people…[At the job I was in before,] I couldn't keep up with the conversation…I would get confused [and] I'd feel left out of the conversation or like I'm not really involved in the group."
"My first job was one of the most horrible experiences of my life and I actually haven't spent a lot of time thinking about it for a number of years and I'm finding that I'm getting upset sitting and thinking about it. It was awful. I was a medical transcriptionist. They hired me and I was shocked but then it went down from there because nobody would talk to me and the most painful thing I remember is the whole office planned a party right around me and didn't invite me. That was really hard but from that I learned that I really did, as a blind person, have to make some extra social efforts, whether I wanted to or not. Whether I wanted to go out for a beer after work with somebody or have lunch with somebody, I had to do it."
Some individuals advocated increased disability education in the workplace as a way to lower barriers to employment for people with disabilities.
"[The important thing is] just educating people [about] the fact that just because your legs don't work doesn't mean your brain doesn't work."
"Sometimes people don't know because they're not educated…They need to offer it [disability awareness training] every so often for new employees."
"[Policymakers should] implement diversity training directed at disabilities the way they do sexual harassment training everywhere. Don't wait until a disabled person walks in the door to figure out what to do with them. Teach them what it's about before we get there…just make it a universal part of orientation in any job. Every time there's a new person and new employee orientation, throw some diversity training directed at disabilities, not at race and sex. We've already got the race and sex issues covered with the training that's required."
"I teach health education to high school kids just down the street. I think I'm doing a two-fold thing -- I'm teaching what I'm teaching in my subject area, and also teaching [students] that you can be disabled and still work. You can contribute to society and not have to take away from society."
One person stressed the need for training about hidden disabilities:
"So if you look at me and I can see you…and you know I can talk, you wouldn't know that I was legally blind or you wouldn't know I was hard of hearing if you were just looking. So if I go to my employer and I say I'm disabled and I have the medical records to prove it, they don't believe it. I think a lot of employers need disability training…I thought that was what the ADA was for. To have [disability awareness training] mandated. But everyone doesn't get trained. The [employer] can say they can have disability awareness but until [they] actually get a person like me [with a hidden disability] -- that'll show you if the company has it."
A number of participants said that even relatively small efforts at education can be effective. One person described how employer knowledge of the ADA helped ensure access to employment:
"I'm in a job thanks to the ADA. I might have lost my last job and the person who was in charge of our unit did not want to hire me…They said, ‘You're going to hire him, and she hired me kicking and screaming and she's no longer there. They don't want to get sued."
A number of participants said that helping potential employers, co-workers and others become comfortable and develop an understanding of a disability may be best accomplished by the person with the disability.
"People are…not necessarily stupid, they're just not educated in that area and it's up to us to educate them. We're the ones that know about us. If we don't educate them, they're still not going to know."
"I got one job through an employment agency, which they were very disturbed. I walked in with a guide dog but I dealt with it very [directly] -- I said, ‘Look, I know you're nervous about placing me. Let's talk about being blind so I can get you over it so you can get them over it so I can get a job!'"
"When you go in with a very visible disability, there's sort of a perception there to start with, so you need to convince them, yes, I can do the job and it's not going to cost big bucks for me to do the job."
Another participant said she believes people take their cues on how to assess disability limitations and how to interact with an individual with a disability by observing the behavior of that individual. Individuals who behave comfortably with others are likely to help others feel at ease. One participant, who agreed with this statement, was nevertheless uncomfortable with it:
"It just bothers me [that] you have to break that ice and put them at ease so they would be at ease with you…You have to be that one that makes that first step."
Another said: "It stinks, but when you go into an employer your responsibility is to prove that you can do a good job and until you come to an agreement with the employer, disability is really irrelevant. Nobody ever got hired for what they can't do, so I guess the short answer here is to focus on your abilities, to be very confident about saying what you can do, [and] convince the recruiter that you could do the job… A lot of employers have paranoia that you can't hire a person with a disability because if it turns out that they can't do the job, they can't fire them."
A number of participants, especially those with mental illness, discussed a reluctance to disclose their disabilities to employers and potential employers because of concerns regarding employer reaction, fears about being treated differently by co-workers, and consequences for employment.
"Half the time, to be honest, I don't want to even disclose my disability when I go for a job because I feel that can work against me so many times."
"I don't like to tell them that I have a mental illness because -- it's just that people don't treat you right."
"One thing about my disability is that it's not really apparent.…My employer doesn't know I'm disabled and I don't want him to know. See, my illness doesn't prevent me from doing my job. I take medication [so] there's no symptoms…I do my job fine and I don't want them to think I'm disabled because they'll think that I need help."
"My supervisor and my co-workers kind of know [about my disability], but I'm not sure how supportive the entire culture would be. It's not very diverse and I would sort of be breaking new ground in terms of that, and I feel threatened by that."
Other participants reported experiencing workplace discrimination, including termination, and other difficulties after disclosing their disabilities. For example, one woman said she disclosed her disability, in confidence, to her supervisor, who violated her trust by sharing the information with co-workers.
Others said that lack of understanding on the part of employers, and potential employers, had led to lost promotions and lost employment opportunities. One hearing-impaired participant said that she had tried repeatedly to work as a paralegal, but that no company was willing to risk taking her on because of her disability. She said that she could not find a good job in her field because people will not hire her because of her disability. As she put it, "They won't say it to your face, but you can tell." She said that it was the attitudes of employers that hurt people with disabilities most: "Attitudinal barriers are the biggest deterrent to getting work."
One hearing-impaired participant said she believes she has been passed over for promotion due to her disability, while co-workers have been advanced. A participant with multiple sclerosis reported being passed over for promotion more than once.
Others said:
"When I started falling, I told my immediate supervisor and my superintendent about my MS. I had not disclosed that [before]…Now I have parents taking kids out of my class because they know. It doesn't make a difference whether it's intentional or not."
"I never check that on the application when it says, ‘Do you have a motor or sensory disability, or mental disability?' I never check it, because I'm afraid that they will discriminate against me."
"I did postpone starting the medication just because I was fairly new at the job [and did not want to disclose my disability by applying for health insurance coverage]. Now I feel more secure being in my position so I felt that I could start that treatment."
A number of participants, particularly those with mental impairments, said they struggled at work without needed accommodations because they feared revealing the nature of their impairments:
"When you have a mental illness, I think flexible working arrangements will help you more. For me, I have to see my psychiatrist once a month so that I can stay on my meds, and it's kind of hard right now, because my new employer doesn't know about [my] mental illness and I don't think he would understand if I every month had to go out [for] doctor's appointments."
Among those who had disclosed their impairments, the most satisfied were those whose employers promised, and maintained, confidentiality:
"[When I started working for the county,]…they were never to disclose the disability. [That's important because] I needed to be protected by the employer and the management in order to feel free…They told me, ‘This is between you and me. You don't tell anybody about this. You don't need to tell anybody about this. If anybody asks us, it's none of their business.' What they did is they maintained [file information on my disability] separately so that it wasn't accessible to other people."
Participants with hidden disabilities talked about the difficulties they encountered because even after disclosure, some employers, co-workers, or others did not believe they had disabilities:
"They don't always know how I'm feeling and I may look fine but I might be having a hard time. But I let people know that I do have a disability. It's hard because they really don't believe it."
"The other people that worked there were kind of resentful that I was getting the special accommodations…I just think that they think I'm spoiled or something. It's not necessarily my supervisors that are the problem, it's the co-workers. I don't necessarily look like I'm disabled. So if I ask for something and everybody jumps to get it then they think that's a problem."
One participant with multiple sclerosis said that living with a non-apparent disability is both harder and easier than living with an apparent disability. She said that she must spend time explaining the nature of her disability to others because people do not usually have such knowledge. At the same time, she said that she can be treated with a degree of normalcy that people with apparent disabilities do not typically experience.
One factor apparent throughout all of the focus groups and across all disabilities was the importance of both purpose and determination in contributing to successful employment outcomes among participants. Many participants made explicit references to the value of being motivated and resourceful, both to secure benefits and later to secure employment.12
Numerous participants described the challenge in learning the complex set of benefits available to adults with disabilities. For many, success in navigating this structure was related to desire:
"I just started making phone calls that would lead to another phone call and another. Coming from a small city there's just not the resources and you don't hear about them. I think what drove me was that I couldn't pay $500 per month [for medications], so I was going to find different options."
"You do what you've got to do…You know how to be creative. Whereas somebody else may look at what the procedure is, you're looking more at, ‘How can we make this happen?'…It's just a matter of at some point you have to kind of take responsibility and just kind of go after it…I'm a survivor at heart. I think that that's a good trait to some extent because I've always done what I've had to do to get my basic needs met."
"I was depending on public transportation, which we all know is the worst, especially if you're a wheelchair user. I would go to school. It started at nine o'clock, [so] I would leave home at seven o'clock in the morning, get passed up by several busses; [the driver would say,] ‘Sorry, buddy, my lift doesn't work'…I got to the point where I was so damn frustrated I [decided] to try to get my own car. So I started hustling. I was going to get a car; I was determined. Once again, my determination [paid off, and] my financial aid money backed my loans and I had a car."
Another said that understanding his strengths and limitations within the labor market motivated him to develop more marketable skills:
"I went with most of my buddies, they were transitioning from school into jobs which I really knew I couldn't have. Be realistic, certain jobs you might as well scratch off your list. That alone just gave me the motivation to start seeking adventures. In other words, start researching…what worked for me. I went a year to vocational school, mostly in clerical, computer classes. Crappy skills which probably six months after I got the certificate were [obsolete] in the real world. You couldn't challenge [yourself] with those skills. So I went back to school. I went to college and started as a full-time student."
Numerous others described the importance of self-reliance in seeking employment:
"I had lots of off-and-on types of jobs. I had jobs through the community college, looked into the Disabled Student Services…I remember going to the employment office when I needed to find work, and [it was,] ‘Go to the Department of Rehab, go to the Department of Rehab, go to the Department of Rehab.' I'm like, ‘I can go anywhere. I don't have to go just to the Department of Rehab."
"Everywhere I went, everywhere, I just kept asking and looking for work."
"My first job, I applied at a heating and cooling company, and I did that on my own."
"I was very aggressive and persistent all the time…"
"I wouldn't have gotten any job I've ever had without contacts. It's one of those elemental things they always tell sighted people: It's not what you know, it's who you know. But it's really true. One of the best job seeking advice things I ever saw in a book was sit down and write down the name of every person you've ever met, every person you know, no matter how inconceivable, and just imagine yourself how could this person possibly help me or what does this person do that they could possibly introduce me to. It sounds really cold-blooded but it's actually -- a lot of people really want to be helpful to other people if you can just tell them how."
Participants also described the importance of self-reliance in maintaining and advancing in employment:
"I started my job in '97, and I probably lasted longer on this job than most of my buddies had on one job but then again, it's just something I have inside of me. It's not just like I could quit this job and get another job tomorrow. It's not that easy. There's a lot of challenges you've got to go through but I'm willing to take the challenges but one day at a time, too."
"I saved up some SSI money and bought me a truck, and I had my own business. A recycling business, and I went around with my pick-up truck and picked up washing machines, stoves, ovens, water heaters…I'd tear them apart and get all the copper and aluminum and I'd take it to the junk yard and sell it, and they would pay me for that."
"[VR provided me with] training into a job but I had possessed the skills as an advocate myself. For [my current job], I did my own job development."
An individual who acquired a disability as the result of a car accident said: "When I left [the hospital], when I got back into the real world, so to say, now it was different, definitely different. But there was a motivation that's always been in me… I refuse to quit. I'm always on the go. I carry my regular 40-hour job, I have an Internet business now. I'm a wheelchair referee for able-bodied basketball with the LA high schools, and I also play wheelchair basketball. My belief is if I can't be happy at what I'm doing then I won't do it. I'll change jobs and right now I have a great job."
For some, the desire to be independent was a key motivating factor:
"I just took it upon myself. I knew I had to do better than what I was doing living off the assistance from the state, I had to do better for my son. And I didn't know of any other programs. I took it upon myself and did it."
"Independence, I think, is the most important factor to me. I don't really want to have to depend on anybody."
"That is why I went to work, I wanted to be able to make it on my own somewhere."
One participant described how difficult it can be to face a disability every day:
"I have to look beyond [all my past pain] and that's where I got my strength from today to get beyond that, to break it off. What stays with me inside is today. It was hard for me to get through it, I was just determined…I want to go so far. [But] it's still with me. It's not noticeable but it's still with me. It hurts me inside because they say, ‘Oh, you're not disabled,' because…it works on the mind and…you feel ‘less than' and you feel ‘left by' and that causes a little problem…I'm beginning to wonder what disability actually means. How many categories before you're disabled?"
Participants also described the need to assert themselves in receiving needed accommodations at work:
"I wanted to…get into the high tech part of [computers] and I could not find any college that would put in the [accessible] computers and teach [the accessible] software [so] I could take the class. I approached the Braille Institute to tour training centers, and attended a seminar where they had the vice president of EarthLink's Customer Service come in. And at that time they were hiring. They accommodated me by giving me a workstation and, of course, training, office accommodations and other things, purchasing, of course, software."
"I had an issue with my previous boss where he actually called me into his office and said, ‘I'm becoming very concerned about your many absences.' And, I looked straight at him and said, ‘All of my absences are just for a few hours every couple of weeks or so and they're all for medical appointments. I have no choice but to go to my doctor.'"
"Everyone here I think would acknowledge that having good adaptive technology is important for acquiring the information you need for being able to do the logistical, mundane part of your job but we live in a pretty progressive world and mostly some of that's going to come along. I think the things that are really fundamental are the more intangibles: the belief that you're capable; the belief that you can fit in to your culture but at the same time that you take a measure of comfort and pride in who you are; the ability to say what you want; the ability to ask for what you need; and the ability to indicate what you don't need; the ability to be organized is probably something that blind people need to be more effective at. So I think advocacy, organization, and good training skills are those intangibles. Yeah, we all want to have access to graphics that we may not enjoy but mostly if you have the aptitude and the creativity and the self-initiative to live interactively, you can figure out the logistical challenges of obtaining access to something."
As described earlier, a number of participants said that experiences early in life motivated them to succeed. In particular, some were intent on proving wrong those who held low expectations for them:
"[My parents] were in a lot of denial. They were supportive [and] they would say, ‘You know what you can do,' [but] deep inside I felt the doubts and everything. [They were just saying what they felt they should be saying]. I just felt like they're full of it…but that just gave me more motivation. I'm going to prove them wrong, and to this date, I have."
"My parents…grew up in a time when blind people weren't expected to do much and their expectations were consistent with the society that [they] mirrored. When I was young, I went to public school when my parents were alive. When they died, and we were sent to my grandparents, they sent me away to the school for blind and they didn't believe me when I told them that I could go to public school. Now, in retrospect, there may have been some advantages to my going to the School for the Blind -- my getting away from that environment.…I said, ‘Grandmother, one day I'll grow up and become successful and affluent,' and she said, ‘No, you just need to work on maybe becoming a country preacher or maybe doing some sort of production.' So it was hard emotionally to understand that the expectation was low. When we lived on a farm, my sister would be required to get up with the break of dawn and join them in the field and I can't tell you how I yearned to go out and do it too, not because I thought it would be especially pleasurable but because everyone else was doing it and it created quite a dynamic between my sibling and I. She thought that I was lucky and I thought that I was very unlucky. And I couldn't convey to someone who was two years my junior that I didn't feel believed in."
"It seemed to me that just by getting a job, by getting off of welfare, by moving forward I was defying the odds, defying what was expected of me."
"I always had the attitude, don't tell me I can't do it, I'll prove you wrong."
"Adversity has made me strong."
Several participants said that non-limiting self-perceptions had been important elements in their success:
"I still don't consider myself disabled, I just do it differently."
"I never felt different, I just sit down [instead of standing]."
The supports discussed above are among those most frequently mentioned by focus group participants. Other additional supports were discussed to varying degrees. While not as widely used, these supports provided critical help to a number of participants. In some cases, the supports are most relevant to individuals with particular impairments.
a. Personal Assistance Services (PAS)
Few participants used PAS, but those who did were generally quite positive about them. One participant said that her assistant serves as her reader at work, which has allowed her to keep her job. Another participant uses a personal assistant both on and off the job, because she requires constant assistance:
"The personal assistant, the driver [are important supports]. For me it's really having somebody with me…I do have to always have someone with me. A driver, somebody to help with chores. Because I can't sweep, vacuum, and mop. Stuff like that I can't do…somebody is there in the morning and in the evening."
Several individuals struggled with the idea of using PAS, with one person saying:
"My social worker kept saying that I should be using an aide, but I just couldn't get used to the thought of a stranger touching me."
Another person, however, credited PAS with helping her regain a sense of independence:
"I felt very confined to my house until I started using an aide."
Among those who received PAS at home, the level of support needed varied with the severity of the individual's condition. One participant mentioned that the level of assistance could even vary greatly on a daily basis.
"[My assistant provides] help with my cooking, doing my shopping, helping me get ready sometimes. A lot of it hinges on what my Meniere's Disease is doing in my right ear. If it's really active then I employ my IHSS [In-Home Support Services] worker a lot more. She helps me do my laundry sometimes. She helps go to medical appointments to my various doctors. She generally provides support both homemaking, emotional, and medical support, helping me to walk around because, for example, when I've got bad Meniere's, then I can't even figure out if the ceiling is the floor."
Some individuals require assistance with housework only.
"I live by [myself], and I have a person who [comes to my house] every other Friday to [help with housework] and with that stuff that I can't reach. I'm living by myself in my own apartment. I can do everything [for the most part] by myself with family and friends and co-workers."
Others, however, need more extensive care, such as caregivers and personal attendants. A participant who was in a nursing home said he had a personal attendant for three years following his release from the home.
"I have a caregiver that comes in the morning and in the evening."
A number of participants commented that their eligibility for PAS was tied to SSI eligibility, which a number of participants lost sometime after becoming employed. These participants must now pay for their PAS out-of-pocket, and they noted the difficulty of trying to do so:
"The money I put out in expenses on [PA] services…it adds up. It's hard to have an equivalent quality of life as somebody making the same salary. [No,] it's impossible."
"[I] have to pay for my helper myself so I have to pay so much money [just to work that I have to go out] and then try to get a high-paying job."
Individuals who needed PAS in childhood typically did not receive formal services, but instead received care from family members:
"It was all supplied by the family."
"My mom, my grandmother, my aunt, they were all there to help."
b. Housing
Housing supports were identified by several participants. Many connected access to housing to success in competitive employment. According to one participant:
"You need a place to start from. You know, you can't hold down a job unless you have a home."
Many participants also equated access to non-institutional and non-shared housing with independence. One participant said that she lived with her parents for a while, which was a "horrible experience." Two Seattle/Tacoma participants said that having access to housing subsidies that enable them to live alone has increased their sense of independence. Having both a place to live, and having this sense of independence, agreed many participants, was linked to gaining a foothold in employment.
In a number of cases, participants credited both Section 8 and supported housing programs with assisting them with their housing needs:
"I've been out of the state mental institution since 1986. I'm in supportive housing. I have my own apartment."
"I do have Section 8. I signed up for [it] back in the 80's. I got it after eight years, I was living with my mother until then."
"My apartment complex is through Passport for Learning. It is vendorized through the Regional Center. I have been there for over one year. I like it a lot. I live by myself."
Two participants described becoming homeowners through special housing programs. One bought a home through the Federal Housing Authority. The other built her own home with the assistance of a community non-profit organization. She described the impact this success had on her self-confidence, such that she felt capable of returning to college to complete her education:
"I was in a special program where I actually built my own home. It's called Northwest Housing Development and it used to be called House My People. And I have an adorable little house that I built from scratch from the foundation up to the roof. But what it is is ten families work together and you all help each other build a home. You can get in with no down payment, but you have to commit to 30 hours a week labor building this home. It took me nine months to do it. But other people are able to help you get those hours in, like my mom would help, and my church members would help for me because I was only working part-time and couldn't have done it. I was afraid to do it honestly, I almost backed off because I hadn't been in the hospital for awhile and I was afraid the stress of it would make me sick. But it was the most rewarding thing I've ever done and I thought, ‘Wow, I built the house, now I can go back to school and get my education.' So that was a big step for me."
Not all participants, however, were positive about the Section 8 subsidized housing program. Even if eligible for Section 8 housing, participants expressed difficulty in obtaining the certificate. Then, some participants said, finding housing was a further challenge. Two people said they had recently received a Section 8 certificate, but had not yet found housing. Another participant expressed great surprise that anyone ever moved off the waiting list and obtained a Section 8 certificate.
Two participants favorably described independent living skills training they had received through a Community Living Program:
"When I was in Los Angeles I went to CLP, a Community Living Program, and I graduated from that place. They taught me how to clean house. They taught me how to cook. And, they taught me how to manage my money…You have to come there every day for three months, and then they give you a certificate, and you have a graduation party. They help you find a place to live. And they teach you how to cook, and how to clean house."
"[CLP can] help you get Section 8, too…You come in [and] they teach you how to cook and clean house, and how to manage your money, and you have to cook a meal for the whole group to show that you know how to cook. They have you cook lunch by yourself."
"I had an independent living person coming into the home. I didn't go to their center. They came to me and did personalized training, household duties, budgeting, and life skills. The focus was not [on getting] a job but, yeah, it was helpful. It did give me the sense of discipline that got me to the point where I actually wrote a resume and got the job that I got."
c. Transportation
Many participants have access to public transportation only, and could not get to work otherwise. Among those who use public transportation, a number reported use of subsidized fare and access to free van service. Among the participants who used private transportation, a number of methods were employed to gain access. For instance, VR paid for modifications for several participants' vehicles, and in many cases participants said that spouses, other family members, and friends regularly included them as passengers in private vehicles. Another person carpools with co-workers, and one person reported having been provided transportation by her job coach.
A common theme among focus groups regarding transportation was the need for access to reliable transportation in order to maintain employment. Some participants were frustrated with the intersection of their transportation needs, and the provisions or restrictions associated with public programs. For example, one participant, who lives in the Seattle suburbs where there is no bus service or other public transportation, talked about the difficulty of securing a reliable car while receiving Medicaid or SSI benefits.
"How can you get to work if you don't have transportation? And before DSH changed it, you could only have a car worth $1,000. Excuse me, what kind of car is that? One that's going to be in the shop every other month. And now they finally raised it to, I think, $4,500 and I had to lie. I financed a 1992 Ford Taurus that was worth about $6,500 and they forced me to lie about the value of it. But I live out in Ordelon and there isn't even any bus service out there. We don't have any."
"[Although it was a good experience going to VR, their help] with transportation didn't really work out.…The access bus [they arranged] would come, like, two days later."
Among those with access to public transportation, many expressed satisfaction with the available subsidy programs. One participant, who can no longer drive due to progressive blindness, says she receives a discounted bus pass worth about $600 a year, which she credits with enabling her to continue to work. Other participants said:
"I have half fare. I got that through my doctor many years ago. It's 24 hours a day, seven days a week. I don't even show it to the bus driver. It is a dollar on my bus, [but] I just put in 50 cents, he don't even say a word to me and I don't show him nothing."
"I get bus passes from City-Ride, that's in LA. They send them to me every month. I do not have to pay. I use them to get my bus stickers so I can get to work."
Public transportation is extremely important to people with disabilities living in Los Angeles County. Many participants regularly use ACCESS Services, Los Angeles County's paratransit system for people with disabilities. One person said that, as a support for maintaining his current employment, ACCESS Services is "an obvious one," and that he logs about 100 miles a week on ACCESS.
Nonetheless, participants reported problems with the system. One person complained about bus drivers' limited training about accessibility for people with disabilities. Another said he had found it difficult to get information about how to use the bus service, and another was not satisfied with the bus schedules:
"[It's] not reliable. You're never on time. You're always too early or a little late."
Other participants discussed additional difficulties with the system:
"Sometimes I was waiting for half an hour to get to my class, and then the lift's not working. I waited for the next one. I waited for the next. Now it's half an hour, [and I've] already missed the class. I had to change all my schedule because they couldn't accommodate me so I could be at class at nine. So I had to change everything, take a class at 11 o'clock, so they could pick me up at nine, so I can be at school at ten, early, then I can eat and study. I had to schedule way early so I could be there on time for class. The good thing was [that] people are understanding."
"The person that you're interviewing with, they come at a set time and you can't be there, or they have to leave because their ride's already [there]. Sometimes they're all, ‘We'll take care of you in five minutes.' I would have to reschedule and do things at a better time. It makes it really difficult if you don't have transportation."
"I had to leave about 5:30 in the morning just to get to work by 8:30. Getting back and forth was an issue."
A few participants have and use their own vehicles. One participant received funding from VR for driving lessons and modifications to his car. Another participant says that her insurance company buys her a new vehicle about every five years. Another shares a vehicle that was purchased by his church with another individual. According to one participant:
"I could not do my job if I did not have a car. Physically it would not even happen, I would not be working. I am just lucky enough that my husband has a good enough job to pay for one, ‘cause I wouldn't be able to work."
A number of participants drive their own cars, and many have adaptive equipment on board. Some had paid for their adaptive equipment themselves or with the assistance of family members, and others had received funding from VR to make the modifications. Three participants said that they had received rebates from a car manufacturer after fitting their new cars with adaptive equipment. They had learned about the money-back option offered by most automobile manufacturers through word-of-mouth and through advertisements in disability magazines.
Many participants said that they wished to be able to drive themselves to gain a greater sense of independence, but this was difficult to accomplish for some because needed adaptive equipment was expensive and sometimes difficult to find.
One woman who wants to be able to drive herself described the challenges involved.
"I haven't been able to find the right resources to look into about the gears for a car for myself. That's the one thing I do want, is my independence to drive."
Another participant described changes he made in his driving behavior:
"I don't have car modifications, I never have.…Basically, I made my own modifications with learning to use my left foot for the brake, and the right foot for the accelerator, and so in any kind of car I get, I always have to make sure that pedals are reachable for me."
Participants discussed the issues and their ways of dealing with transportation. Transportation was paramount for access to education and employment. Multiple participants discussed their need for transportation when seeking employment. VR was able to help one participant "with a stipend" for the purpose of obtaining transportation.
Participants discussed other transportation options available to them also. One characterized his company's rideshare program, which apparently is available to all employees, as an accommodation:
"We have a rideshare program that my employer has set up [in which] they will compensate you [if] you carpool [or] walk, whichever way you get to work besides driving…They give [someone like me who,] of course, can't drive, accommodations in that sense."
d. Informal Supports from Family and Friends
Many participants related stories and events illustrating the substantial support provided by family and friends. Among the key functions performed by family and friends was the extent to which they were able to help participants accept their disabilities, encourage work efforts, and reinforce a positive self-image.
"I had a friend who really believed I could do anything. My friend's support really convinced me that I could just go out and get a job. I actually applied for two jobs -- driving a bus and bank teller, total opposites. I actually got both and had to decide. So she got me really psyched at that point."
"In terms of informal support, I guess I have other friends with disabilities, I mean, friends who have had the same disability and they've been injured for longer than I have. I kind of use them for…peer support."
"It was funny, 'cause I had a girlfriend -- a co-worker, actually -- and just recently, like you said, they forget, and we were talking on the phone, and she says, ‘Are you sitting down?' [laughter] And I said, ‘Do you realize what you just said to me?' She said, ‘Oh, oh, oh, I'm sorry.' And so when I got to work, I really thanked her. I said, ‘That was really a compliment. Because that shows you don't see the chair. You see me.'"
"[I have] friends who help me to get to and from a lot of places around the state [that] you can't get to with public transportation. That is just invaluable…Without that kind of support, I would not be able to do significant parts of my job."
"They are proud [when] I tell them I make good money…and they are happy [about] where I live."
"[It's helped me] just knowing that my family supported me. Just being really watched over, you know, just, it helps being involved."
Several participants said their families and friends had provided considerable support in maintaining their current jobs, including providing help with transportation, shopping, food preparation and offering emotional support:
"[I'm close to my family]. They help me with things like grocery shopping, stuff like that. Whenever I need a ride sometimes, they help me with that, too."
"I think my mom should be paid by the government because she is such a big help to me. In the mornings she cuts up fruit for me, vegetables to eat and she's just like really caring and emotionally, I can talk to her. She accommodates me for all my drowsiness and everything."
"My fiancé, I think, has been a very large emotional support. Every time I come up against a wall, if I have a hard time with Social Security talking to the people, [he helps me. Like,] I went through a change in rehab counselor and it was difficult getting used to the new counselor because she does things totally differently. He always finds a way to get me through it, anything, no matter what it is."
"You socialize with each other a lot. You basically have your mother, your stepfather, and then you have people around your age, brothers and sisters and cousins."
"I was always encouraged to try and do my best. My dad encouraged me to get into computers and engineering."
"Probably what really enabled me to go back to work was my husband when I got married -- just his encouragement and belief in me."
"When I entered the hospital, it was so many people that just cared about me and wanted me to get out of the hospital. They would go shopping for me, bring me home, cook food, braid my hair. It's so many people that can give you love, they don't have to but some people do have a heart."
"What helped me continue to go on, even though I knew I was hurting inside was my peer group. Other students saying, ‘Come on…you're doing good."
"In terms of informal support, I guess I have other friends with disabilities, I mean, friends who have had the same disability and they've been injured for longer than I have. I kind of use them for…peer support."
"[I have] friends who help me to get to and from a lot of places around the state [that] you can't get to with public transportation. That is just invaluable…Without that kind of support, I would not be able to do significant parts of my job."
A female participant who started to go blind progressively said that she had just recently moved to a new place to live. While it is farther from her work, she said that her new place is much closer to her friends. These friends act as an important safety net for her and they help her with added mobility and freedom. Another female participant with multiple sclerosis said that she has wonderful friends that are very supportive of her. She said that they do things like drive her around and cook for her. She also said that they keep an eye out for her in looking for jobs or services she can use.
According to some participants, friends provided invaluable help while they attended schools without adequate accommodations.
"There were no ramps at all, so I waited for four years to [have] a ramp. My friends used to come lift me up for my classes all the time, for all four years. But, now everything is accessible. [My friends would say,] ‘Are you ready?' And I'd go, ‘Yes I am, let's go.' On the way down, I came by myself. Yeah, that's the thing, you know, my friends helped me a lot."
"I was looked at as being positive with other classmates because here I am at a normal school. In high school I got my friends together. I told them, ‘I want all you guy's class schedules, because you're going to help me help someone who can't help themselves really good to get to class quicker…We're going to help push people in wheelchairs or help the ones that have no lockers, carry their books, and get them to class too. If we're on our way, and you pass someone that needs help, is it right for you to pass them up? There's going to be a day that you're going to need their help, and they're going to help you.' [And my friends] go, ‘You know what? You're right, here's our schedules.' [My friends and I] did that, [and] I found that it lasted my whole four years, plus another four."
Other participants simply spoke about the value of being able to speak with and share their experiences with friends:
"Talking to one another, yeah, that's the most important."
"When I need to talk and get out some of my thoughts I call two friends on the phone."
"[I call] my friends when I get home…Just having contact with people [is good]."
Some participants continued to have strong supports from their friends while others experienced their friendships drifting apart:
"We were going into our senior year in high school. [My friends would] sneak a bottle or two into the hospital and get me drunk once in a while. [laughter] The hospital didn't frown on it that much, to be honest with you. [Later,] I was always out with [them]. By the time I got [a van, I could just] get in and take them places. So it didn't stop me [from going out]."
"My friends went from a whole bunch to just two or three real friends…I saw my friends shying away from me and I kind of shied away from them…Getting around was kind of a problem but at that same time, I actually wound up dating a girl and becoming friends with her friends. She was actually my therapist here…Right after that is when I knew I had to get my own car because it was difficult to get around. Like I said, a couple of friends were core friends that would come and take me here and there, but it was different."
Many participants spoke of the importance of friends not only as sources of personal support, but often as resources for employment. Two participants reported they found first jobs while in high school through referrals from friends. Another focus group member had a friend who worked for a state agency who checked the state job listings and found a job for her.
Others said:
"Fortunately, I've had a lot of friends who have pointed me to jobs where I could work."
"I would never have gotten the job if it wasn't for a friend of a friend. He went to apply for the job, he had another offer he was more interested in. He took that one. The other potential employer said well, who else can you recommend? There I was."
"I found most of what I found by…a friend saying by the way you should check this out and I followed all the leads as they came apparent."
Some participants reported that friends and peers whom they met in their treatment programs provided support and pressure to seek help or change medication. This was particularly important when participants had difficulty perceiving their own needs and level of disability.
"I had this one girlfriend who [is on medication herself] and she noticed that I was getting really critical and irritable, so she suggested that I go to this psychiatrist that she was going to."
"I'd be going to the mental clinic and we would discuss our illnesses, and I made some friends."
e. Plans to Achieve Self Sufficiency (PASS)
Only three participants in Newark reported using PASS (no Seattle/Tacoma participants reported use), and each was positive about the program. One participant used the program to buy a van for his work, and another used PASS to save money to start a computer business. Another participant, who eventually used PASS, said that taking advantage of the program was difficult because of a lack of knowledge of the program by SSA staff:
"[No one] in the office knew about it," he said. "There was only one guy in that office I went to. It had 75 people and it was a huge place and [you] could only see this one guy because he was the only [one who knew] how to do the thing."
Several participants in Los Angeles were familiar with PASS, and discussed how they could be used to purchase assistive technology. However, they said that only a small number of VR counselors -- and an even smaller number of Social Security counselors -- were familiar with the program or trained in how to write a PASS plan. As one participant noted, "The system is so complex that a lot of folks who work in the system don't even know all of the benefits and the programs that are available that they could be telling people about if they only knew that their agency had the program."
Another Los Angeles participant said:
"The Independent Living Resource Center [had] helped me write one up in Ventura. They were turned down. And when I got this job I'm at now, when I went to Social Security here in Long Beach, and asked the worker to give me information on PASS plans, she flat refused. She straight up told me, ‘I'm not going to give you that information,' quote, unquote. And I didn't pursue it any further. I would like to have written a PASS plan eventually, my goal would be self-employment. [But] I don't know of anybody that's ever been approved for one."
Los Angeles participants who had written PASS plans reported that the plans were very helpful in providing assistance during the transition from school to work. In some cases, SSA or Southern California Rehabilitation Services had assisted individuals with writing their plans. One participant wrote her own PASS plan for computer equipment. Another was able to purchase a van for work through his plan. Participants said PASS was a useful way to set aside work-related expenses and that it served as an incentive to transition into work. One participant described her experiences with PASS when she first began working:
"The PASS plan is a plan through Social Security where they allow you to set aside money in a separate account so it doesn't affect the $2,000 limit that is imposed on you if you're receiving SSI benefits. The only way it really helped me was when I first started working, and I was only working part-time. I was able to set aside money for work-related [expenses]. At the time I was working as a massage therapist and I was able to write a PASS plan to get some of the equipment I needed."
Another participant spoke about the value of PASS when he was attending college.
"Through Social Security, SSI, they have something called PASS plan, Plan to Achieve Self-Support. I had to come up with a plan to go to college, to take certain courses, to get a certain certificate or degree, and I had to put it in writing. My dad helped me a lot. I did that and [DR] agreed to pay a certain amount a month in addition to what I was getting from SSI to pay for school. That's the only thing they paid for, really, was the books which were pretty expensive."
f. State Workforce Development Systems
Among participants who used State Workforce Development Systems, those with the fewest skills, and seeking entry-level positions, appeared to be most satisfied with the service. Those who sought assistance with more specialized work were less satisfied.
One participant used the state employment services department when looking for her first job, but was disappointed with the experience:
"Whenever I've talked to job developers in the past, what I've heard is that, regardless of my degree, regardless of my training, or the awards I've received, or all the things I've done, what they could help me do is find a $7-an-hour job. If I want that, they'll help me. But if I'm looking for a professional position, then they can't help me, and it's ‘be off with you.'"
Another said:
"I hooked up with the Department of Labor program for people with disabilities in New York City. They were not helpful at all [beyond my] getting evaluated, [and] my husband's insurance actually paid for [that]…Basically what they had was low, meager jobs to offer, very low educated jobs. And that wasn't the stuff that I was looking for…They didn't have anything [for someone with] a college degree in psychology…So they really didn't help. I mean, they did [provide] a computer to do my resume, or fax machine, but I had already secured those things myself."
g. Disability Advocacy Organizations
Several participants reported using different disability advocacy organizations for assistance with their ongoing needs. In some cases, disability advocacy organizations helped provide funding for assistive technologies, offered training, or helped participants fight for needed accommodations. For example:
"[From the] Braille Institute, I get talking books and Braille books for reading and I guess [it is practically] all of what I use now."
"And I…went to [the] United Cerebral Palsy [day training program]. I was the receptionist there and learned how to cook, [and went to] training camp there also."
"Jespy House [a facility for developmentally disabled young adults] got me this new job, I work for [a wholesale company], which is a very exciting job. I like the people a lot and things like that."
"Jespy House took me on a job interview…And I got a job. [They taught me] how to be on time, how to get there -- they travel-trained me. I [also] had a job coach."
"[Jewish Vocational Services] taught me how to break away from my mother and how to move out on my own and move down here and how to get along with my mother and speak up for myself and things like that."
"[Organizations] like Community Access do really help their members with advocacy, [with the] one-on-one support that really counts. [As an] employee of one of these [organizations], I find that employment in a non-profit organization is more supportive, than [in a governmental] organization."
One participant described the activities of the Tacoma Area Coalition of Individuals with Disabilities (TACID) in providing information about other services available in the community, and providing training to employers and co-workers about working alongside a person with a disability. In this case, the participant's co-workers had attended a workshop at TACID called "Deaf and Hearing in the Workplace: Working Together:"
"My whole life has changed since that workshop in my office. [My co-workers] had no idea what they were doing. That was why I made the comment about education of co-workers. They had no idea that they were leaving me out. They had no idea I'm sitting in this office and nobody would talk to me. And they had no idea that they were doing that until they saw the hands on demonstration at that workshop. Now all of a sudden after 3 years of isolation, I'm part of the group again."
Several participants described participation in blind organizations (particularly American Council of the Blind and National Federation of the Blind) as key to developing high self-esteem and becoming active in civil rights efforts to change attitudes about blindness as well as to expand opportunities for people who are blind. One participant, whose family had particularly negative perceptions of blindness and low expectations about his future, found great support in learning about a blind consumer organization when he was thirteen.
One participant said he received support and encouragement from a mental health advocacy group:
"I go to different conferences all over the states for National Alliance for the Mentally Ill. I see a lot of people that are having serious mental illness, and they're living, just doing presentations and stuff and that's a real encouragement."
Another participant described training services provided by a local disability advocacy organization:
"[A local] disability organization has gone out and trained bus drivers and people with disabilities on how to use the [accessible buses, and] developed systems for people who can't communicate. People who are deaf and blind have cards that they can show the bus driver, various things like that."
h. Organized Sports
Participants agreed that participation in sports provides them with friendships, a sense of family, and a peer support group for people with similar disabilities who face many of the same issues. They also agreed that participation in team sports builds skills that carry over into their professional lives as members of a company team. Comments about the support they receive from their participation in organized sports included:
"Yeah, that's how we all met, playing sports. We all put our ideas together, and look what it's turned into. [Sports] motivates you. It's total motivation."
"You want to hang out with that positive energy, you don't want to be around someone who's negative…The thing is, you want to get to that level, man, you want to show up, you want to practice, you want to play hard, cause you want to be able to compete. And seeing guys that are in chairs, in your position and still able to excel at what they do, you want to get to that level too. You want to be in the play, you don't want to be left behind. So, that forces you to show up for practice, to give 100 percent, not lag, not call in sick, not flake out on the practicing and stuff like that. It makes you want to be there."
"The discipline, and showing up for training, [and] the feeling of camaraderie, getting together with your fellow wheelchair user buddies, [these are really important]."
"[It creates] teamwork, [and] just being around everybody who's in the same position, it's a good healing environment, [to be] in competition."
Another participant reported meeting his current co-workers and fellow sports team members while attending the Abilities Expo:
"Believe it or not, I didn't know anybody in a wheelchair for the first two years of being in a wheelchair. I remember rolling into this Expo and thinking, ‘My God, there's a ton of wheelchair people in here. These people have all gone through what I've gone through. I feel so bad for them.' But these people are just laughing, cracking up, doing different things. I'm thinking, ‘Man, I must be off my game or something ‘cause these guys are doing something different [from me].' That's when I met [another participant, who works at Xtreme]. After that he pretty much exposed me to everything, and it actually happened at the Expo."
One of the individuals with a visual impairment participated in team sports:
"I wasn't very good at it but I was in soccer, I did skiing with my family, friends of mine. What else did I do? I did baseball but I wasn't very good at baseball because you have to ‘lock in' -- my spatial visual abilities aren't very good, so it's not like I could lock onto the ball when it was thrown to me. Soccer is different [because the ball is larger and it's not as difficult."
Special Olympics was a significant source of support for a number of participants, who said that participation had contributed to an increased sense of self-worth and self-reliance:
"I went out for the Special Olympics through the occupational center and I came in, like, 4th place in the 50-yard dash. [I also did] some other activities like the softball throw and the standing broad jump, and I had a great time. I even pulled a muscle in my leg for the running one. But I enjoyed it very much."
"I was in Special Olympics, too. Especially up in Danville, I was in Special Olympics for about two or three months. That was very good because we did a lot of things. We did a lot of activities together and they got me through. They got me to actually go out and face somebody to get a job. That's how they helped me."
i. Role Models/Mentors
A number of participants mentioned the value of having role models and mentors available to provide advice during difficult periods. One participant told how the advice he received from a mentor had motivated him to work.
"When I got hurt, thank God, there was a guy that was hurt before me, he was [telling me] I was all right, [but] there's stuff to still be done, and it takes money. So now I gotta work harder, cause I want a lot of things. I gotta put in a [lot of time] to make a lot of money."
Another participant identified her boyfriend as a good role model for her when she was seeking employment.
"He went through a period where he didn't have a job, and he just went out there, and no matter what, he put applications in everywhere, just kept trying, he didn't give up. I saw his efforts, and I saw how he didn't give up, and he eventually landed a really good job. He got benefits and everything, and at first it was very hard, but he didn't give up even though nothing was coming through. He kept doing it and he didn't give up."
One participant said that he understood the importance of young people having a role model who understood and could relate to their experiences. He wished to give back to people with disabilities and contribute to the lives of young people:
"I get the importance of being a role model to young children and I do camp every year. I see the difference that it makes in their life and not only do I inspire them but they more than inspire me so it's like I'm getting back what I missed out on. It's pretty powerful and it's very important."
Others said:
"I lived in fear that I would die before I was 20 because I never saw a blind adult."
"I remember one time when I was a little kid, there was a deaf couple and they lived about a block away from our home and I saw them both walking down the street and they were talking to each other. ‘Look at that,' I said. Mom just grabbed me and took me away…A few years later, I saw them again. [They said,] ‘You used to live over here when you were a little boy.' [They] became my role models away from school. [My] parents went, ‘No, no, no,' but I did it."
"I went to [a] School for the Deaf…I had a lot of good, wonderful role models, a lot of deaf staff. I lived in a dorm. I had people in my classroom involved with different activities. I had a lot of exposure to deaf adults…When I went home for the weekend, I said, ‘Hey mom, dad, you know when I graduate from high school, I'm going to college.' I was eight years old and I already knew about it."
"I connected with deaf people, and they were good, they were working, they were responsible and I grew up with them."
"…I had a totally blind mobility instructor and I thought that was critical to my learning to travel because she served as a daily role model and really instilled confidence because I had confidence in her ability to travel. It kind of transferred to me, slowly. It took a long time but if I had had a sighted travel instructor, I think it would have been less effective because she could tell me her own war stories. We kind of experienced war stories together, hearing a train coming and not quite knowing where the train tracks were -- huddling together and hoping we weren't going to get hit. So I think that was real important."
"Having other blind people as mentors and that was really important to me when I was growing up. I remember being very young going to one of my first state conventions and, my gosh! There's actually blind people walking around and being lucid and all of that kind of good stuff. I think that's very, very important to have people that you can look up to."
"My mentor [hired] me. I needed one person who really believed in me. I worked for him after going to vocational rehabilitation and going to school. [At some] point, he looked at me and said, ‘Go back to nursing.' I was taking everybody's blood pressure in the office. I had always been a hospital nurse, but there weren't any openings in the hospital and that was like going from square 1 to square 100, so I went to a nursing home. There are many, many, many openings in a nursing home. They were desperate for help. They said, we'll hire you. But the hourly wage was much, much higher. So, even though I was scared to death with my first paycheck, I was able to put a down payment on a used car, and I'd been walking for five years. You don't know what an incentive that was. And the individual who told me to go back to nursing was there for me every afternoon. I'd go by the office and tell him how my day went, and he would listen to me and buy me a latte, make me feel important and kind of dusted the bruises off."
Another participant mentioned the value of public figures who serve as role models:
"Maya Angelou, Oprah Winfrey, there's a lot of people. And I could go on and on and on and on. It's just, I admire people, like the underdogs. I kind of like rooting for the underdogs, you know what I'm saying? The world thinks, ‘Well, we've kicked you down, you're going to stay down,' [and] you go, ‘No, you're not,' and you just keep rising to the occasion. 'Cause to me that's just survival, every day you have to get up and rise to the occasion."
j. Religious Community
Several participants gained a great deal of support from religious communities. Through one such community one participant said he gained access to a supported residence, a social network and volunteer work.
"I live in [something] like a compound, which is a couple of buildings that are run by a missionary group and they provide some supported living.…All of us are [people with disabilities]. The missionaries provide a lot of volunteer work but I also have people [come in to help] and then my partner helps me. So with trained friends and family and volunteers and [other] people, I get by."
Another participant counted individuals at her synagogue among her support network:
"I have lots of supports, like the people at my temple, they're very supportive. My rabbi is very supportive, plus I have several counselors. I have a psychologist I go to on a regular basis that helps me keep [in balance]. I have a special facilitator -- which is the other type of counselor that I go to -- that gives me emotional, spiritual support, so that I know where I'm going and [that] even though life gives me an obstacle, I know I have to overcome it and help other people overcome their challenges as well."
Two participants said their Bible study group provided important spiritual and emotional support. One of these individuals lives with members of his religious community and depends on them for material support as well. Another participant with severe hearing loss depends on networks with other deaf people through her synagogue:
"[I go to] Temple Bethel, for the deaf. I've been going for quite some time. I found that to be more comfortable [because] I actually understand where they're at in the prayer book. That's [also] where I do my networking in the deaf community and find out where I can get my stuff the cheapest."
Others said:
"I do get some emotional support from…the Mormons. They come to my job and they ask me to help package their cards sometimes. And sisters will come over and sometimes the brothers, [they're] called missionaries, and they give me a pat on the back and some emotional support; and ask me how I'm doing."
"I know that I do believe in God, and I know that's given me the strength to go on many times when I felt ready to quit. I think that the spiritual part of your life is very important in helping you heal."
"The women in my church…when I was hospitalized, they cared for my son. I also was in a special program where I actually built my own home, and my church members helped me with that."
"My church has helped me out several times…I moved up here from Texas about 13 years ago and the church I joined up here, they helped me out a lot. I wanted to go up and see my mom and I didn't have any money to go so they bought me a round-trip plane ticket…And they helped me get a car a lot cheaper than I could get on my own. A couple of the people in the church went in together and it was like three of us, 1/3 each, and helped me get this car."
"In the beginning, [I was helped by] food banks. My church was very helpful in either directing me to resources or giving me resources."
A participant with a cognitive disability stated that his church was a very helpful support for him. He said that he volunteers his time to the church and that this was a good way for him to feel like a part of the community.
A participant with epilepsy stated that he is in support groups that are sponsored by his church. He stated that this was a very important support because it helps him better deal with his disability and makes him feel better about himself. A participant who uses a wheelchair indicated that he received support from members of his church, but until recently, he could not attend the church, which was inaccessible:
"[The support was] a twin-edge. I mean, they were a support network…If you're a shut-in, they'll help you out. I only asked [them for] $60 in 1973, when I was getting ready to go to college. They got together and bought me my first power wheelchair…The people there were supportive, but I guess because of the times, [the 70s], disabled people weren't [really] helped…One of the problems is that my church is built on the side of a hill and [there are] three flights of stairs, [with] no real space for ramps. We worked [out] other ways of doing it in the last few years but, the thing back then wasn't, ‘How can we do it,' it was, ‘We'll minister to him in his house.' The talk was always, ‘We can put an elevator in the bell tower,' but [that cost] was way above their means and I never thought to look [for] other alternatives. Small church, small congregation, small funds."
One woman's church assisted her in paying the costs of graduate school.
"I had been active in my church on disability issues because I realized the church I was going to was very inaccessible and I had two choices: either quit or start working for accessibility. And eventually I designed, with the Archdiocese, the parish advocate training program and so I was working with the Archdiocese on that…So when I went to graduate school I asked them to help out with part of my scholarship and they did."
Another participant received counseling through a church agency:
"What helped for me was…when I got sick and I was in the hospital for awhile, my mom found through Lutheran Social Services a therapist who agreed to work with me. She only charged me $5 a week and I went to her for four years."
k. Other Organized Supports
Participants described having received a variety of supports from numerous community non-profit organizations, ranging from social service agencies to volunteer service organizations:
"I also have to plug the Young Men's Christian Association, YMCA has also been an avenue I could go to, I always knew I could stay somewhere, either in a shelter there or somewhere. They always had their doors open too."
"Group homes gave me encouragement. When I felt different [or] felt unable to do certain things that other people were doing cause I was in special ed classes and stuff like that. They supported me. They gave me encouragement, they told me I could do what everybody else was doing."
"There's a Woman's Job Training Center in News Brunswick [that] was kind of like the clique that moved me along…[The people at the Women's Assistance Center were] women who had been in marriages and now were the single breadwinner of the family and had no work history…It became clear to me that life history can be just as valuable as work history. And I saw how the counselors worked with everybody, including myself, to look at…what skills were they bringing with them, and they helped me look at myself in a different way."
"I went to the Passaic County Mental Health Association and they suggested this therapist. He is very qualified in dealing with all kinds of people, but particularly those who have problems with mental illness."
"I also have mental illness and I go to a drop-in center, which is right by [the] Coalition of Consumer Mental Health Organizations. And I find the support that I get from there to be very good. I go on their retreat every year, where I learn more and more about what's going on in the world [and about how I can] help people with all kinds of disabilities."
"For me there was a really great counselor in the hospital who knew that I didn't have medical and so she walked me through all the paperwork for every single service that was available to me."
"The Volunteer Chores Services, they actually have people that come out and help you too."
"The Christmas in April program [is] for those that are disabled or low-income… They'll come out and if you need help they get people together to come out and do all the maintenance on your home if you're disabled."
Several participants had participated in Boy Scouts and Brownies, through which they gained work experience and leadership skills.
Participants also spoke about numerous organizations and programs, such as those sponsored by the Urban League, Head Start, and others, to be significant supports in helping maintain their current employment:
"We have the Urban League of Hudson County. I would like to be a teacher one day and I have all the things here that help me…I have my certificate [as a childcare provider] from the Urban League…These little certificates, they may not be a teacher's degree, I may not have a Master's degree or anything like that right now, but this is just a stepping stone for me. I'm just moving my way up."
"Here in Essex County, they have a Wise Woman Center…displaced homemakers or women that are in need of vocational re-establishment. I went to a lot of courses there for nothing. [They also have classes] that help you internally, not necessarily educational things all the time. They had a course there for a few months that we went to every day. It was kind of like a women's empowerment class. I don't want to say [that it was a class] to become more aggressive, but that's kind of what it was."
"I did a lot of study skills and resumes with the Wise Women's Center. I've been with them since, I guess, maybe about '85, and they've been really wonderful. And I know I can go at any time, even though the staff has changed over the years. They have always been in my corner; I will say that."
Several participants were able to pay for medical and equipment expenses through donations and through community and workplace fundraisers:
"When I got out, the Elks in my community bought me my first wheelchair. They heard through the community that this little girl had this accident and everything, and they raised the money [for me]."
"The men at my father's job [Ford] were really good. They raised a lot of money for me."
Several participants said that the Lions Club and the Italian-American War Veterans donated Braille dictionaries and support for assistive technology.
A participant who had had a stroke said that she had received leg braces from the Shriners Hospital for Children.
One participant described a program that he gives to which helps those individuals with new spinal cord injuries who have no insurance and cannot afford durable medical equipment. For this participant, giving back to those less fortunate than him gives him a good feeling and a sense of supporting the community, and this provides him with a sense of accomplishment.
Blind participants spoke most often about the supports they received from community-based and consumer groups.
"The consumer civil rights organization that I'm active with [NFB] has created its own model of rehabilitation to train blind people how to function well in the world. They take anecdotal experiences like skydiving or mountain climbing and they incorporate it into also a fairly uniform curriculum of Braille and computer training and it's all underscored by a course in philosophy about blindness. So there are good organizational curriculums that exist that are designed to help rehabilitate people or to give the rehabilitation, if you want to use that term. Specifically, I would allude to the Colorado Center for the Blind, the Louisiana Center for the Blind, those are curriculums that I think stand out. I mean even among people who are not affiliated with my organization, people acknowledge pretty widely that they are programs that are distinguished in what they do."
"They're run by blind people who believe in us as blind people and impart that belief to their students. And I think that that's one theme that's running through here is the people have talked about the people who really affected them in their lives, those teachers had high expectations of their students and I think that's really important that blind people surround themselves with people who have high expectations of them from the get-go, from their childhood into adulthood. That's one benefit of belonging to a consumer organization is you are surrounded -- and most of us in this room belong to consumer organizations -- I think that's interesting too -- but they surround themselves with other blind people who are out in the world doing things and expect us, expect me, to be out in the world doing things as well. They also serve as a network and support of people who I can turn to for advice. But constantly surrounding yourself with people who expect something of you instead of the alternative, which is all to common, blind people are kind of out on their own, living with family who don't really think blind people can do anything, or surround themselves with friends who adopt the majoritarian attitude in this society, that blind people can't do anything. Surrounding yourself with high expectations is key."
Focus group members were enthusiastic about the assistance they had received from support groups made up of people with similar types of disabilities. They described both groups conducted in person, and those conducted via Internet chat rooms.
"You actually learn a lot from your support groups. People are going through the same thing as you and they might have crossed that same path. 'That happened to me and I did this.' 'You did what? What was that name again?' So that helps."
"My major source of support came from an Internet support group for hard of hearing and late deaf people who had gone through this transition. We work together to learn to advocate for ourselves. [I don't know what I'd do] if I didn't have all those people on the other side of my screen who know exactly what I've gone through, to come home and scream to through my keyboard. It's not just a place to outlet it, but together we brainstorm how to solve the problem. Somebody else has already been there. They'd say, 'I had a boss like that and this is what I did.' I depend on that and I have that contact daily."
"I think the support group, like you said, finding people that are like yourself. I think support groups are one of the best things because then you meet other people who have a disability. Then you realize that, yeah, it's okay."
"[I'm] running peer support [groups] and we involve other individuals who are out there and working or volunteering and working and offer them support. Been there, done that type of thing where they have somebody kind of to look up to…You go in and talk to them. They discuss issues that they may be uncomfortable with talking with family and their doctors or whatever."
"When I was about 18, I went to a young adults coping with arthritis group. It was, ‘Wow, look at all these people like me!'…Just seeing how similar they were to me and that I wasn't the only one."
A participant who is hearing-impaired participates in a group called SHHH, or Self Help for Hard of Hearing. As a person who had spent much of her life trying to hide her disability, she felt that the support group was very helpful in feeling like she is not alone.
A number of participants said they had received help from a variety of 12-step programs:
"During my high school years, when I was 18, 19 years old, I was also put in rehab, Alcoholics Anonymous, AA. I had trouble with booze."
"I currently am working two part-time jobs, one of which I got by meeting a person at a 12-step recovery meeting."
"I go to therapy twice a month. I'm in a 12-step program. I'm just trying to maintain right now."
"I go to NA [Narcotics Anonymous] programs, NA functions. I have peers and people there that help me, that I talk to. They don't help me…maintain my job or go to work and stuff, but they talk to me which makes me feel like I'm not too much different, I'm not way out here and everybody [else is in this] little circle that's working and they've got a life. I'm a part of that circle too."
"[When I need to talk] I go to a 12-step meeting, or occasionally I've found a hot line to call, which is a support line. I developed a friendship there with some of the listeners and I call [them]."
"When I first started, I had a support group that I went to. Now I rely more on that I am a member of AA, and rely on them as my support group."
l. Incentive/Other Programs for Businesses to Hire People with Disabilities
Several participants said they believe their employers may have received tax credits or other tax incentives for hiring them. One person said she believed that her first employer had received "a tax write-off" for hiring her, while another said his employer had taken advantage of a tax credit for hiring people with disabilities, offered by the state. A participant with mental retardation was aware that his employer had received incentives for hiring him, but was unclear about the nature of these incentives:
"I've heard from [my counselor] that there's special credits to the employers. They were paying over half my wages and there's another tax credit from Rehab, too, and by reporting that is a simple incentive for a lot of employers to help people get back to work in decent jobs."
One participant described trying to take advantage of the Targeted Tax Credit program when she was looking for employment, but received a surprise instead:
"VR told me they'd give me a nice piece of paper for my prospective employer to fill out saying they'd get a tax cut if they hired me. Well I'm all excited thinking this is good news. I get hired at the school district and I give them this paper -- the school district doesn't pay taxes."
Another participant described an incentive that had been available to King County government employers at the time he was hired:
"[When I started working for the county,] I didn't realize [my disability] actually could be an asset. [There was a] selective certification program…which gave the employer a certain merit point for hiring people with disabilities."
One participant said:
"I wanted to get into the state system because I figured that I need to be in a safe place as I was going blind. So I applied to be a [claims manager with a state agency]. They provided me with adaptive technology, which was the only way I could do my job and so I guess that would be the key support there. I think also that part of why I got the job was they probably had diversity requirements or Affirmative Action requirements. And I'm also sure, by the way, that's a factor that got me into law school as well, so I appreciate Affirmative Action."
| EXHIBIT 1: Ranking of Supports by Site | |||||||
|---|---|---|---|---|---|---|---|
| Site/Support | Median | Percent in Category | |||||
| 1 | 2 | 3 | 4 | 5 | Missing | ||
| Los Angeles | |||||||
| Family/Peer Non-Financial Support and Encouragement | 1 | 71.3 | 16.8 | 9.9 | 1 | 1 | 3 |
| Access to Health Insurance/Medical Care | 1 | 65 | 14.6 | 11.7 | 1.9 | 6.8 | 1 |
| Special Skills or Other Training | 1 | 63 | 14 | 15 | 1 | 7 | 4 |
| College Education | 1 | 52.6 | 18.6 | 15.5 | 4.1 | 9.3 | 7 |
| Employer Accommodations | 1 | 53 | 20 | 17 | 5 | 5 | 4 |
| Public Income Assistance/Entitlement Programs (SSI, SSDI, TANF) | 1 | 50.5 | 21.4 | 8.7 | 5.8 | 13.6 | 1 |
| Job Search Assistance | 1 | 50.5 | 17.2 | 11.1 | 6.1 | 15.2 | 5 |
| Transportation Services | 2 | 48 | 11.2 | 12.2 | 5.1 | 23.5 | 6 |
| Specific Drugs or Treatments | 2 | 48 | 10.2 | 13.3 | 8.2 | 20.4 | 6 |
| Assistive Devices/Technology | 2 | 42.6 | 17 | 10.6 | 6.4 | 23.4 | 10 |
| Vocational Rehabilitation | 2 | 32.7 | 20.2 | 19.2 | 9.6 | 15.4 | 1 |
| Family Financial Support or Income Other than Work Earnings | 2 | 39.4 | 18.2 | 16.2 | 12.1 | 14.1 | 5 |
| Public In-Kind Assistance Programs (Food Stamps, Housing) | 3 | 32.7 | 14.3 | 15.3 | 5.1 | 32.7 | 8 |
| Special Education as a Youth | 3 | 32.3 | 8.6 | 9.7 | 3.2 | 46.2 | 11 |
| Job Coach | 4 | 21.1 | 12.6 | 11.6 | 5.3 | 49.5 | 9 |
| Personal Assistive Services | 3 | 21.1 | 16.8 | 16.8 | 10.5 | 34.7 | 9 |
| Newark | |||||||
| Family/Peer Non-Financial Support and Encouragement | 1 | 54.4 | 28.1 | 12.3 | 1.8 | 3.5 | 15 |
| Access to Health Insurance/Medical Care | 1 | 69.1 | 20 | 5.5 | 0 | 5.5 | 17 |
| Special Skills or Other Training | 1 | 57.9 | 21.1 | 19.3 | 1.8 | 0 | 15 |
| College Education | 1 | 66.7 | 16.7 | 8.3 | 0 | 8.3 | 24 |
| Employer Accommodations | 1 | 53.8 | 25 | 5.8 | 3.8 | 11.5 | 20 |
| Public Income Assistance/Entitlement Programs (SSI, SSDI, TANF) | 2 | 43.5 | 19.6 | 17.4 | 6.5 | 13 | 26 |
| Job Search Assistance | 3 | 33.3 | 14.6 | 27.1 | 6.3 | 18.8 | 24 |
| Transportation Services | 2 | 45.8 | 16.7 | 6.3 | 8.3 | 22.9 | 24 |
| Specific Drugs or Treatments | 2 | 38.8 | 24.5 | 16.3 | 6.1 | 14.3 | 23 |
| Assistive Devices/Technology | 2 | 45.5 | 15.9 | 6.8 | 11.4 | 20.5 | 28 |
| Vocational Rehabilitation | 2 | 29.2 | 13.9 | 5.6 | 2.8 | 12.5 | 1 |
| Family Financial Support or Income Other than Work Earnings | 3 | 35.6 | 13.6 | 23.7 | 11.9 | 15.3 | 13 |
| Public In-Kind Assistance Programs (Food Stamps, Housing) | 3 | 35.4 | 6.3 | 10.4 | 10.4 | 37.5 | 24 |
| Special Education as a Youth | 3 | 35.8 | 5.7 | 15.1 | 18.9 | 24.5 | 19 |
| Job Coach | 4 | 33.9 | 7.1 | 8.9 | 14.3 | 35.7 | 16 |
| Personal Assistive Services | 3 | 33.3 | 14.3 | 11.9 | 4.8 | 35.7 | 30 |
| Seattle/Tacoma | |||||||
| Family/Peer Non-Financial Support and Encouragement | 1 | 55.7 | 22.7 | 9.3 | 4.1 | 8.2 | 11 |
| Access to Health Insurance/Medical Care | 1 | 71.4 | 8.2 | 11.2 | 4.1 | 5.1 | 10 |
| Special Skills or Other Training | 1 | 54.8 | 24.7 | 15.1 | 2.2 | 3.2 | 15 |
| College Education | 1 | 62.9 | 16.9 | 11.2 | 3.4 | 5.6 | 19 |
| Employer Accommodations | 1 | 55.9 | 17.2 | 16.1 | 2.2 | 8.6 | 15 |
| Public Income Assistance/Entitlement Programs (SSI, SSDI, TANF) | 2 | 50 | 13.8 | 6.3 | 6.3 | 23.8 | 28 |
| Job Search Assistance | 2 | 45.5 | 18.2 | 20.5 | 5.7 | 10.2 | 20 |
| Transportation Services | 1 | 53.8 | 11 | 8.8 | 3.3 | 23.1 | 17 |
| Specific Drugs or Treatments | 2 | 47.8 | 14.1 | 9.8 | 7.6 | 20.7 | 16 |
| Assistive Devices/Technology | 2 | 45.9 | 14.1 | 5.9 | 4.7 | 29.4 | 23 |
| Vocational Rehabilitation | 2 | 30.6 | 13.9 | 11.1 | 9.3 | 17.6 | 6 |
| Family Financial Support or Income Other than Work Earnings | 2 | 40.5 | 19 | 13.1 | 3.6 | 23.8 | 24 |
| Public In-Kind Assistance Programs (Food Stamps, Housing) | 3 | 30.6 | 16.5 | 7.1 | 8.2 | 37.6 | 23 |
| Special Education as a Youth | 3 | 35.1 | 8.1 | 14.9 | 6.8 | 35.1 | 34 |
| Job Coach | 3 | 38.5 | 10.8 | 9.2 | 4.6 | 36.9 | 43 |
| Personal Assistive Services | 4 | 22.4 | 6.6 | 15.8 | 10.5 | 44.7 | 32 |
| All | |||||||
| Family/Peer Non-Financial Support and Encouragement | 1 | 61.6 | 21.6 | 10.2 | 2.4 | 4.3 | 29 |
| Access to Health Insurance/Medical Care | 1 | 68.4 | 13.3 | 10.2 | 2.3 | 5.9 | 28 |
| Special Skills or Other Training | 1 | 58.8 | 19.6 | 16 | 1.6 | 4 | 34 |
| College Education | 1 | 59.4 | 17.5 | 12.4 | 3 | 7.7 | 50 |
| Employer Accommodations | 1 | 54.3 | 20 | 14.3 | 3.7 | 7.8 | 39 |
| Public Income Assistance/Entitlement Programs (SSI, SSDI, TANF) | 2 | 48.9 | 18.3 | 9.6 | 6.1 | 17 | 55 |
| Job Search Assistance | 2 | 45.1 | 17 | 17.9 | 6 | 14 | 49 |
| Transportation Services | 2 | 49.8 | 12.2 | 9.7 | 5.1 | 23.2 | 47 |
| Specific Drugs or Treatments | 2 | 46 | 14.6 | 12.6 | 7.5 | 19.2 | 45 |
| Assistive Devices/Technology | 2 | 44.4 | 15.7 | 8.1 | 6.7 | 25.1 | 61 |
| Vocational Rehabilitation | 2 | 37.3 | 19.5 | 15.3 | 9.3 | 18.6 | 8 |
| Family Financial Support or Income Other than Work Earnings | 2 | 38.8 | 17.4 | 16.9 | 9.1 | 17.8 | 42 |
| Public In-Kind Assistance Programs (Food Stamps, Housing) | 3 | 32.5 | 13.4 | 11.3 | 7.4 | 35.5 | 53 |
| Special Education as a Youth | 3 | 34.1 | 7.7 | 12.7 | 8.2 | 37.3 | 64 |
| Job Coach | 3 | 29.6 | 10.6 | 10.2 | 7.4 | 42.1 | 68 |
| Personal Assistive Services | 3 | 23.9 | 12.7 | 15.5 | 9.4 | 38.5 | 71 |
| EXHIBIT 2: Rankings by Impairment | |||||||
|---|---|---|---|---|---|---|---|
| Support | Cognitive | Communication | Mental Illness |
Mobility | Other Chronic |
Not Identified |
All |
| Percent | Percent | Percent | Percent | Percent | Percent | Percent | |
| Sample Size | 49 | 60 | 54 | 91 | 23 | 7 | 284 |
| Family/Peer Non-Financial Support and Encouragement | |||||||
| Median | 1 | 1 | 1 | 1 | 1 | 2 | 1 |
| 1 | 61.5 | 60.0 | 66.0 | 62.7 | 52.6 | 50.0 | 61.6 |
| 2 | 12.8 | 28.3 | 24.0 | 20.5 | 21.1 | 0.0 | 21.6 |
| 3 | 12.8 | 6.7 | 8.0 | 12.0 | 10.5 | 25.0 | 10.2 |
| 4 | 5.1 | 3.3 | 0.0 | 1.2 | 5.3 | 0.0 | 2.4 |
| 5 | 7.7 | 1.7 | 2.0 | 3.6 | 10.5 | 25.0 | 4.3 |
| Missing | 10 | 0 | 4 | 8 | 4 | 3 | 29 |
| Access to Health Insurance/Medical Care | |||||||
| Median | 1 | 1 | 1 | 1 | 1 | 3 | 1 |
| 1 | 71.1 | 50.8 | 80.4 | 67.5 | 90.0 | 60.0 | 68.4 |
| 2 | 13.2 | 16.9 | 11.8 | 14.5 | 5.0 | 0.0 | 13.3 |
| 3 | 13.2 | 11.9 | 5.9 | 12.0 | 0.0 | 20.0 | 10.2 |
| 4 | 0.0 | 5.1 | 0.0 | 3.6 | 0.0 | 0.0 | 2.3 |
| 5 | 2.6 | 15.3 | 2.0 | 2.4 | 5.0 | 20.0 | 5.9 |
| Missing | 11 | 1 | 3 | 8 | 3 | 2 | 28 |
| Special Skills or Other Training | |||||||
| Median | 1 | 1 | 1 | 2 | 1 | 3 | 1 |
| 1 | 64.1 | 70.7 | 60.4 | 46.9 | 63.2 | 40.0 | 58.8 |
| 2 | 20.5 | 15.5 | 20.8 | 24.7 | 10.5 | 0.0 | 19.6 |
| 3 | 7.7 | 10.3 | 12.5 | 21.0 | 26.3 | 60.0 | 16.0 |
| 4 | 0.0 | 1.7 | 2.1 | 2.5 | 0.0 | 0.0 | 1.6 |
| 5 | 7.7 | 1.7 | 4.2 | 4.9 | 0.0 | 0.0 | 4.0 |
| Missing | 10 | 2 | 6 | 10 | 4 | 2 | 34 |
| College Education | |||||||
| Median | 3 | 1 | 2 | 1 | 1 | 3 | 1 |
| 1 | 37.0 | 79.3 | 48.8 | 59.5 | 57.9 | 33.3 | 59.4 |
| 2 | 7.4 | 10.3 | 30.2 | 17.9 | 26.3 | 0.0 | 17.5 |
| 3 | 18.5 | 8.6 | 9.3 | 13.1 | 15.8 | 33.3 | 12.4 |
| 4 | 3.7 | 0.0 | 2.3 | 6.0 | 0.0 | 0.0 | 3.0 |
| 5 | 33.3 | 1.7 | 9.3 | 3.6 | 0.0 | 33.3 | 7.7 |
| Missing | 22 | 2 | 11 | 7 | 4 | 4 | 50 |
| Employer Accommodations | |||||||
| Median | 1 | 1 | 2 | 2 | 1 | 1 | 1 |
| 1 | 57.1 | 67.8 | 41.7 | 45.6 | 73.7 | 60.0 | 54.3 |
| 2 | 20.0 | 20.3 | 18.8 | 22.8 | 10.5 | 20.0 | 20.0 |
| 3 | 11.4 | 6.8 | 16.7 | 20.3 | 10.5 | 20.0 | 14.3 |
| 4 | 0.0 | 3.4 | 2.1 | 7.6 | 0.0 | 0.0 | 3.7 |
| 5 | 11.4 | 1.7 | 20.8 | 3.8 | 5.3 | 0.0 | 7.8 |
| Missing | 14 | 1 | 6 | 12 | 4 | 2 | 39 |
| Public Income Assistance/Entitlement Programs (SSI, SSDI, TANF) | |||||||
| Median | 1 | 2 | 1 | 2 | 1 | 1 | 2 |
| 1 | 65.5 | 30.0 | 69.4 | 40.3 | 52.6 | 60.0 | 48.9 |
| 2 | 10.3 | 26.0 | 14.3 | 16.9 | 31.6 | 0.0 | 18.3 |
| 3 | 3.4 | 10.0 | 4.1 | 15.6 | 5.3 | 20.0 | 9.6 |
| 4 | 6.9 | 6.0 | 4.1 | 9.1 | 0.0 | 0.0 | 6.1 |
| 5 | 13.8 | 28.0 | 8.2 | 18.2 | 10.5 | 20.0 | 17.0 |
| Missing | 20 | 10 | 5 | 14 | 4 | 2 | 55 |
| Job Search Assistance | |||||||
| Median | 1 | 2 | 1 | 3 | 2 | 4 | 2 |
| 1 | 75.0 | 41.1 | 51.0 | 29.7 | 50.0 | 0.0 | 45.1 |
| 2 | 8.3 | 17.9 | 20.4 | 17.6 | 22.2 | 0.0 | 17.0 |
| 3 | 11.1 | 21.4 | 12.2 | 23.0 | 11.1 | 50.0 | 17.9 |
| 4 | 2.8 | 7.1 | 4.1 | 6.8 | 11.1 | 0.0 | 6.0 |
| 5 | 2.8 | 12.5 | 12.2 | 23.0 | 5.6 | 50.0 | 14.0 |
| Missing | 13 | 4 | 5 | 17 | 5 | 5 | 49 |
| Transportation Services | |||||||
| Median | 1 | 1 | 2 | 2 | 1 | 2 | 2 |
| 1 | 63.6 | 61.4 | 42.9 | 36.8 | 64.7 | 40.0 | 49.8 |
| 2 | 6.1 | 10.5 | 16.3 | 14.5 | 5.9 | 20.0 | 12.2 |
| 3 | 9.1 | 5.3 | 4.1 | 15.8 | 5.9 | 40.0 | 9.7 |
| 4 | 3.0 | 5.3 | 4.1 | 6.6 | 5.9 | 0.0 | 5.1 |
| 5 | 18.2 | 17.5 | 32.7 | 26.3 | 17.6 | 0.0 | 23.2 |
| Missing | 16 | 3 | 5 | 15 | 6 | 2 | 47 |
| Special Drugs or Treatments | |||||||
| Median | 2 | 3 | 1 | 3 | 1 | 4 | 2 |
| 1 | 45.5 | 21.6 | 74.5 | 34.6 | 89.5 | 25.0 | 46.0 |
| 2 | 12.1 | 25.5 | 13.7 | 12.3 | 5.3 | 0.0 | 14.6 |
| 3 | 9.1 | 7.8 | 7.8 | 22.2 | 0.0 | 25.0 | 12.6 |
| 4 | 6.1 | 7.8 | 2.0 | 12.3 | 0.0 | 25.0 | 7.5 |
| 5 | 27.3 | 37.3 | 2.0 | 18.5 | 5.3 | 25.0 | 19.2 |
| Missing | 16 | 9 | 3 | 10 | 4 | 3 | 45 |
| Assistive Devices/Technology | |||||||
| Median | 4 | 1 | 5 | 2 | 2 | 1 | 2 |
| 1 | 29.2 | 76.3 | 14.0 | 40.5 | 46.7 | 66.7 | 44.4 |
| 2 | 8.3 | 13.6 | 9.3 | 24.1 | 13.3 | 0.0 | 15.7 |
| 3 | 8.3 | 3.4 | 9.3 | 11.4 | 0.0 | 33.3 | 8.1 |
| 4 | 8.3 | 1.7 | 4.7 | 8.9 | 20.0 | 0.0 | 6.7 |
| 5 | 45.8 | 5.1 | 62.8 | 15.2 | 20.0 | 0.0 | 25.1 |
| Missing | 25 | 1 | 11 | 12 | 8 | 4 | 61 |
| Vocational Rehabilitation | |||||||
| Median | 1 | 2 | 2 | 3 | 2 | 1 | 2 |
| 1 | 51.6 | 43.9 | 37.5 | 25.6 | 29.4 | 80.0 | 37.3 |
| 2 | 12.9 | 15.8 | 22.9 | 23.1 | 23.5 | 0.0 | 19.5 |
| 3 | 9.7 | 10.5 | 14.6 | 21.8 | 11.8 | 20.0 | 15.3 |
| 4 | 6.5 | 14.0 | 4.2 | 9.0 | 17.6 | 0.0 | 9.3 |
| 5 | 19.4 | 15.8 | 20.8 | 20.5 | 17.6 | 0.0 | 18.6 |
| Missing | 18 | 3 | 6 | 13 | 6 | 2 | 48 |
| Family Financial Support or Income Other than Work Earnings | |||||||
| Median | 2 | 2 | 1 | 3 | 3 | 2 | 2 |
| 1 | 44.7 | 37.5 | 51.0 | 26.3 | 47.4 | 50.0 | 38.8 |
| 2 | 15.8 | 21.4 | 16.3 | 21.1 | 0.0 | 0.0 | 17.4 |
| 3 | 18.4 | 14.3 | 12.2 | 21.1 | 15.8 | 25.0 | 16.9 |
| 4 | 0.0 | 5.4 | 6.1 | 17.1 | 15.8 | 0.0 | 9.1 |
| 5 | 21.1 | 21.4 | 14.3 | 14.5 | 21.1 | 25.0 | 17.8 |
| Missing | 11 | 4 | 5 | 15 | 4 | 3 | 42 |
| Public In-Kind Assistance Programs (Food Stamps, Housing) | |||||||
| Median | 2 | 5 | 1 | 4 | 1 | 4 | 3 |
| 1 | 46.9 | 14.8 | 51.0 | 17.8 | 70.6 | 25.0 | 32.5 |
| 2 | 9.4 | 22.2 | 13.7 | 11.0 | 5.9 | 0.0 | 13.4 |
| 3 | 6.3 | 7.4 | 7.8 | 17.8 | 11.8 | 25.0 | 11.3 |
| 4 | 9.4 | 5.6 | 2.0 | 12.3 | 0.0 | 25.0 | 7.4 |
| 5 | 28.1 | 50.0 | 25.5 | 41.1 | 11.8 | 25.0 | 35.5 |
| Missing | 17 | 6 | 3 | 18 | 6 | 3 | 53 |
| Special Education as a Youth | |||||||
| Median | 2 | 3 | 3 | 4 | 3 | 3 | 3 |
| 1 | 50.0 | 38.3 | 28.2 | 22.2 | 47.1 | 40.0 | 34.1 |
| 2 | 12.5 | 8.5 | 10.3 | 5.6 | 0.0 | 0.0 | 7.7 |
| 3 | 20.0 | 4.3 | 12.8 | 13.9 | 5.9 | 40.0 | 12.7 |
| 4 | 2.5 | 10.6 | 10.3 | 9.7 | 5.9 | 0.0 | 8.2 |
| 5 | 15.0 | 38.3 | 38.5 | 48.6 | 41.2 | 20.0 | 37.3 |
| Missing | 9 | 13 | 15 | 19 | 6 | 2 | 64 |
| Job Coach | |||||||
| Median | 1 | 5 | 4 | 5 | 2 | 1 | 3 |
| 1 | 69.8 | 11.4 | 25.0 | 16.2 | 26.7 | 66.7 | 29.6 |
| 2 | 9.3 | 20.5 | 10.0 | 2.9 | 26.7 | 0.0 | 10.6 |
| 3 | 7.0 | 4.5 | 10.0 | 17.6 | 0.0 | 16.7 | 10.2 |
| 4 | 4.7 | 6.8 | 7.5 | 8.8 | 13.3 | 0.0 | 7.4 |
| 5 | 9.3 | 56.8 | 47.5 | 54.4 | 33.3 | 16.7 | 42.1 |
| Missing | 6 | 16 | 14 | 23 | 8 | 1 | 68 |
| Personal Assistive Services | |||||||
| Median | 4 | 4 | 5 | 3 | 2 | 1 | 3 |
| 1 | 29.2 | 18.9 | 23.3 | 21.9 | 33.3 | 60.0 | 23.9 |
| 2 | 12.5 | 17.0 | 9.3 | 11.0 | 20.0 | 0.0 | 12.7 |
| 3 | 8.3 | 11.3 | 9.3 | 24.7 | 13.3 | 20.0 | 15.5 |
| 4 | 8.3 | 13.2 | 0.0 | 12.3 | 13.3 | 0.0 | 9.4 |
| 5 | 41.7 | 39.6 | 58.1 | 30.1 | 20.0 | 20.0 | 38.5 |
| Missing | 25 | 7 | 11 | 18 | 8 | 2 | 71 |
Source: Federal Register (1999).
Supports used in securing a first job refer to supports used during transition from school to work, or from disability onset to work.
While expectations and motivation played a critical role in the employment success of those we interviewed, this does not mean, of course, that those who have not achieved a similar measure of employment success are not highly motivated. The most highly motivated individuals might be unable to overcome the barriers and disincentives to employment that are faced by many people with disabilities.
Section 209(b) of the Social Security Amendments of 1972 allows states to determine Medicaid eligibility separately from SSI eligibility, using income and resource standards that are no more restrictive than those in effect in 1972. There are eleven 209(b) states (Connecticut, Hawaii, Illinois, Indiana, Minnesota, Missouri, New Hampshire, North Dakota, Ohio, Oklahoma, and Virginia).
WIA replaces the Job Training Partnership Act (JTPA), passed in 1982, which authorized funding for programs to prepare youth (and adults) for entry into the labor force. Under JTPA, state programs were established and administered by Private Industry Councils comprising employers and education personnel. Services varied by state, but generally included job search, basic skills training, labor market information, occupational skills training, work experience, literacy training, job placement assistance, and summer youth employment.
Source: Federal Register (1999).
At each site, a number of individuals who were screened in as focus group participants but who could not attend a focus group were interviewed by phone.
Supports used in securing a first job refer to supports used during transition from school to work, or from disability onset to work.
It is possible that this interviewee confused Social Security survivor benefits with SSI.
In determining SGA, "countable" monthly earnings (i.e., gross earnings minus any subsidized earnings and impairment-related work expenses) are averaged over the period of time in which work was performed.
At the time this focus group was conducted, SGA was equivalent to $700 in monthly income. As of January 1, 2001, SGA has been increased to $740 a month.
While expectations and motivation played a critical role in the employment success of those we interviewed, this does not mean, of course, that those who have not achieved a similar measure of employment success are not highly motivated. The most highly motivated individuals might be unable to overcome the barriers and disincentives to employment that are faced by many people with disabilities.
Brady, H.E., Meyers, M., and Luks, S. (1998). "The Impact of Child and Adult Disabilities on the Duration of Welfare Spells" (working paper). University of California, Berkley.
Brown, David E. (2000). The Role of Job Training Partnership Act Programs in School-to-Work Transition. Washington, DC: The National Governor's Association. http://old.nga.org/Pubs/OnlinePubs/STWOA.htm.
Committee on Ways and Means, and House of Representatives, U.S. (1998). 1998 Green Book. Washington, DC: U.S. Government Printing Office.
Federal Register (March 18, 1999). Volume 64, Number 52 (13428-13430). From the Federal Register Online via GPO Access [wais.access.gpo.gov] [DOCID:fr18mr99-84].
Johnson, A., and Meckstroth, A. (1998). Ancillary Services to Support Welfare to Work. Report prepared for the Office of the Assistance Secretary for Planning and Evaluation, U.S. Department of Health and Human Services. Princeton, NJ: Mathematica Policy Research, Inc.
Kregel, John (2001). Virginia Commonwealth University, personal communication. Richmond, VA: May 1.
Silverstein, Robert (2000). A Preliminary Analysis of the Relationship Between the Workforce Investment Act and the Federal Disability Policy Framework. http://www.comop.org/ rrtc/rrtc/Workforce.htm.
Thompson, T., Holcomb, P., Loprest, P., and Brennan, K. (1998). State Welfare-to-Work Policies for People with Disabilities. Report prepared for the U.S. Department of Health and Human Services, Office of the Assistant Secretary for Planning and Evaluation. Washington, DC: Urban Institute. [Executive Summary, Full PDF Report]
Wolfe, B.L. and Hill, S.C. (1995). "The Effect of Health on the Work Effort of Single Mothers." Journal of Human Resources, 30(1), 42-62.
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