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 di