Research on Employment Supports for People with Disabilities: Summary of the Focus Group Findings

Publication Date

Aug 31, 2001

The Lewin Group, Inc.
Berkeley Policy Associates, Cornell University

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.

ACKNOWLEDGMENTS

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.

I. INTRODUCTION

A. Purpose and Organization of the Report

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.

B. Study Background

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?

C. Evolution of Disability Policy

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.

II. FOCUS GROUP FINDINGS

A. Introduction

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.

B. Supports Used During Childhood/at Onset of Disability

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.

Special Education

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."

Health Insurance

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."

Supplemental Security Income

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."

Parental Expectations and Teacher, Mentor and Peer Support

The family experiences of focus group participants varied considerably, with some participants reporting that their parents were particularly supportive, while others reported how they had to succeed despite a lack of support (or even outright discouragement) from their parents. Among participants whose parents were supportive, many said their parents encouraged them to accept their conditions, to make realistic choices, and to have high expectations of themselves:

"I was encouraged by the family. There was never any expectation that I wouldn't work."
"My parents were the ones who originally put me to work, and they always believed in me. In fact, they put me to work way back when I was two years old. My father did lawn jobs and cleaned houses, and anything I could pick up, that's what I did. He taught me to roll trash cans and everything else. I did everything and anything."
"Where I think my parents really helped was that I was required to be a responsible person in the household. I had my own chores. I didn't get any special treatment and I started learning how to make money early. My parents would take me down the highway [in our rural area] when the walnuts started dropping, and say, ‘Here are some gunny sacks,' and I'd have to fill them. I'd make money that way…I [was] learning early on -- just as anyone else with or without a disability -- the importance of work and learning. I wanted spending money, and guess what? They weren't going to hand it to me for nothing, so I had to earn it like my other siblings earned their money."
"There was always the expectation that I would do well and I would excel. I suppose in retrospect that was a good thing…I have a great-grandfather who was a founder of a university, do you expect not to [go to college]? Are you kidding! Oh, God! So that pressure was there. The motivation and support off-and-on was there, too. So, yeah, the extended family, as you say, and [my mother's] friends and my father's friends, on both side of the family they sort of expect that you will do well whatever you do. They didn't care [what it was] but whatever it was you better do well."

Others said their parents were important sources of emotional support and encouragement:

"My family was very supportive. [They told me] that I could do anything I wanted to. They were very helpful in keeping me emotionally set to go through life."
"My parents wanted to make sure first and foremost that I had as much normal experience as everybody else. They didn't want me treated special, but at the same time they obviously were concerned with my safety and well-being. So, they outwardly tried to encourage me to do as much as I felt I could do and not to worry about anything, and if I had a problem I'd come to them and they'd work it out. They're overall very supportive."
"My mom was a real fighter for me and we got my doctor involved, and my therapist, and my physical therapist, and everybody fought [for me]."

Some participants struggled with parents and family members who fostered a sense of dependence and disability:

"I had no idea what disability was until my mother said to me one day, when I saw the other kids playing, ‘I used to cry because you wouldn't get to do that.' [I remember thinking], ‘Why?' At that point I knew there was a difference. There were hospital stays, surgeries, other things like that until the time I got to be about 15. Everyone was doing things for me, putting [my] clothes on, and all of [the] stuff that I really wanted to do. Nobody would give me a chance to do it. It got to be rather awkward around puberty, so one night after a fight, an altercation between my mother and I, she said, ‘Well, I don't want to do this. I don't want to put your clothes on for you no more. And I said, ‘I didn't ask you do it in the first place,' and I've been doing it ever since. But coming from that background of having people do it for you and then finding out you can do it yourself, it's made me more conscious of the ‘super crip' mentality. I pushed myself way too hard."
"I was so sick when I was younger that my parents couldn't even envision any possibilities for me as I got older, so they never encouraged me to do anything. They figured, Why bother? I think it was hard for them to give us what we needed because they didn't understand it and [they'd think], ‘Well, you look fine,' but I'm not. I don't think they knew if I was lying or was trying to make excuses to not go to school."
"People didn't think I'd amount to much, neither of my parents expected me to graduate from high school or go to college."
"I was never expected to make a lot of money. You were supposed to do just a minimal job."

Three participants spoke about parents' low expectations or denial of the disability in cultural terms:

"I was born with retinitis pigmentosa, [and] everybody looked at me and they thought I was a normal child. They never thought I had a visual impairment.…I was born and raised in East Los Angeles. We were from a very poor family. My parents didn't have education. My mom dropped out of high school. She only completed the eighth grade and that was it. My dad came from Mexico. He said he made it to the sixth grade elementary.…In our culture, I had two strikes against me. I was not only a girl child, but I had a disability, which they couldn't identify. [For someone like me, school] was considered an extracurricular activity.…The reason my parents never knew I had a visual impairment at home was [because they didn't even notice] if I didn't read a book or read a paper, they didn't care. It was not important. They didn't have that, so they weren't expecting me to have that."
"My mother was born and raised in Korea. And if you go to Korea, you don't see handicapped people. They're either hidden away or sent to the country I guess, whatever, but you didn't see them. [For Asian-Americans,] it's a big thing -- number one -- to deal with someone who's handicapped in the family. I think your expectations as a parent, you lower them. You hope the best for your child, but you also think what the reality is probably going to be. They're never going to be able to support themselves. Who's going to fall in love with a person like this?"
"My father, well, we don't get along. When we see each other, he says, ‘Why should you take medicine?' because [in] my culture, people like my family don't believe in medicines. He's telling me, ‘Don't take no medicine.' Sometimes he tells me I'm faking it, that I can do better things, that I just sit around."

A number of participants discussed how in early childhood or at disability onset they developed a strong determination to succeed despite the low expectations of others. Rather than accepting the low expectations of others, including parents and teachers, they became intent on proving them wrong:

"My family was basically [thinking that] I'm going to be bedridden for the rest of my life. That's how they looked at it. My parents said, ‘You can stay here, we'll take care of you, you don't have to ever work again, don't worry about anything, we'll take care of you…I was still in the hospital, and I told them, ‘There's no way I'm allowing this. I have to take care of myself.' So I did. It did drive me, when I did start working, to go harder, and make sure that I achieved it. I know my life's a lot harder, so I gotta work harder. [We have to start getting ready] a couple of hours [early just] to have a nine-to-five job. So, our life is a lot more difficult. But, I'm willing to make the adjustments. It's all about getting used to your new lifestyle. Just gotta adapt. It takes time to get used to a new way of life, but it can be done."
"[My parents told me,] ‘I don't know why you're going to school. You're never going to get a job.' [So] those were the spots where defiance was the mode."
"[I learned to believe] that I have to be better than other people, because it's important because people look down on people with disabilities already."
"I had to get away from my family, basically, my brothers, my sisters, everybody because if I'd stayed with my family, I'd have a sighted guide forever. Couldn't walk down the street by myself or couldn't do anything, basically. [According to them,] I always had to have somebody."

Many identified one or more teachers as having played an important role in motivating them to succeed, and that the most influential were those who encouraged them to develop solid academic skills, held them to high standards, and encouraged them to be self-reliant:

"The teacher I had that from day one just kept saying -- we, all of us knew that we would be in college. We knew there wasn't any other choice and she'd shoot us if we didn't go. It was just a given from the time I was -- well, about six years old. I had her starting in first grade."
"My elementary school teacher. He was the kind of teacher [who] kind of knew your limitations. And if he knew you could do it, he made you do it. And I feel like he's the one who gave me the background that I have. He told me, ‘Either you do it yourself or don't expect [it]. Don't depend on anybody. If you can do it, do it.'"
"Maybe my mentor was my elementary school teacher, and I remember, he always…told us to always depend on yourself, never depend on anybody else…I think he encouraged me to do the things that I do."
"I went to a deaf school. [My teacher] said, ‘You can become a teacher, you can become anything you want to be. No one can stop you from your goals. One thing [she] emphasized was writing skills, and reading skills. And attitude. Those three things my teachers really stressed on me."
"[I]n sixth grade I had an amazing teacher who came from teaching special education…And, he saw me in his class and he just came up to me and said, ‘I'm going to let you help. If you have a day where you feel like you can, I'll let you pass out papers. I'll let you collect papers. I'll let you do whatever you feel you can do. …And, so a year of that, I got back a lot of my self-esteem. Then, I just kind of moved on from there. [In general,] my teachers were actually, I guess, really advanced for the time and they allowed me to stay in the [regular] classroom. They made accommodations for me. [They saw] how depressing it is when…all your friends are laughing and joking and walking out the door to go to lunch, so they allowed me, every day, to pick one or two friends to stay with me, [which everyone considered a treat]."
"My teacher in junior high was a really great mentor for me because she always encouraged me to try anything, to do whatever I wanted to do. 'Do the best that you can do. It doesn't matter whether you can see well or not, that shouldn't be the obstacle. Just go out there and follow your desires and your dreams, whatever your interests are.' Encouraging me to go to college, get an education because that is what's going to get me a better job, get me through in life."

At least two participants also described important experiences with teachers who served quasi-parental roles and provided emotional support:

"There was just a lot of encouragement, a lot of support, letting me know that I could do it. 'Cause I had a lot of stuff going on emotionally with me. When I was in that classroom, I guess it was the end of my high school years, I got pregnant and had an abortion, so she was there for me through that. She was actually at the hospital with me…Definitely, she went beyond being a teacher."
"I had an art teacher in high school. I was always smart but I would just stay quiet and not draw attention to myself, and I guess in her class, she was kind of Bohemian, you know, a Carol King kind of woman. So I was allowed to let go…They were going on a school trip, and she was like, ‘Oh no, you're going. We'll find a way. Even if the boys carry you up on the bus, we'll find a way to get you [there].' She took me to games and things in New York City, and the guys carried me on the bus and everything. I always just admired her. She was free-willed."
"I would say towards the end of high school, one of my Special Ed teachers -- in fact we still talk today -- was very supportive of me."
"My special ed teacher when I was in the 5th grade was a mentor. She took the time to teach me academically [and about] art and music…She is still in my life."

5. Other Supports

Several other supports were mentioned by focus group participants as being useful during childhood or at the onset of disability.

Assistive Devices. Among participants who reported using adaptive equipment in school, all had positive experiences. One participant was able to take driver's education in high school using a modified vehicle:

"They had the adaptive cars, so I actually learned to get out on the road and drive in there. So I felt like I had a better high school education as a result of my accident."

Another described a variety of supports that were helpful:

"I had problems with putting things on paper [from] my head. I had to use a tape recorder, I had to take physical therapy, speech, and my mom had me take dancing with my classes and stuff like that…It was the teacher's idea [to use the tape recorder]."

School-Based Work Preparation Programs. A number of participants in Seattle/Tacoma, Newark and Los Angeles participated in school-based work preparation programs and had generally positive experiences. One participant said she had enrolled in a 60-credit childcare class offering comprehensive information about the childcare industry and training to be a childcare specialist. She said her school paid for this class, and she was pleased with the training she received. Another participant said he enrolled in a school-based work program that included interviewing skills, which he said was useful in preparing him for subsequent job interviews.

Many described participation in school-based vocational programs, which typically provided useful practical training. For example, one participant, who graduated at the age of 20, attended a vocational high school and pursued a janitorial track. He said that he had held an after-school job as a janitor at the high school, which he believes may have been part of a work preparation program. Another individual worked as a busboy through a high school-based program. A third described his experience with a program that taught him a variety of skills:

"When I was going to school, they started putting handicapped kids into [a school/vocational program] and I was going to school, and I was sorting stuff out and…nuts and bolts, and right before I graduated in there, I [learned about] painting, spray painting cars, or a bumper, and it was real interesting. I learned a lot. I did dishes there. I took wood shop. They put you out in the community where you're helpful…It wasn't in a class. It was a trade for the school…where I went to school was…when they take you, something where you know how to do really good, and I was spray painting, and the guy was there with me, making sure I did it right. That was the neatest thing I ever did."

For one participant, junior ROTC classes eventually led to a career as a health care administrator following the onset of disability:

"So in high school we took junior ROTC classes and the closest to medical training was probably when we used to have medic courses, we used to do CPR courses, we used to always volunteer, go down to Red Cross to watch them give blood, see how they drew blood and see certain other tests. That would be the closest influence to how I ended up doing what I do now."

Two participants in one focus group said they took useful courses in money management in school, which have assisted one of the participants in his current job:

"I think the whole course was a learning experience. We learned how to write checks and we even got to tend stocks we would follow."
"I had the same thing. [We lived in an apartment, figured out] living expenses, food, gas, electric, how much it would cost. We also had to figure out how many hours we'd worked. [This class] has actually helped me out now because it helps me figure out how many hours I worked even if the hours aren't in front of me on a clock when I punch in."

Finally, several individuals had informal "work-study" arrangements at school and in summer programs. For example, one participant said:

"I would help out the secretaries, and then at the summer camp…they would give us jobs…like when I worked filling in when people bought things at the canteen."

C. Supports Used in Securing First Job and in Maintaining Current Employment

In this section we describe the supports that participants found most useful in getting a first job and in maintaining current employment. Among the supports identified, participants spoke at length about health insurance, employer accommodations, and individual motivation. Participants also spoke about SSDI and SSI, in-kind support programs, and support from family and friends. We discuss each of these below. We preface the discussion by presenting information about participants' perceptions of the relative importance of selected supports. This information was collected via the focus group registration form prior to the focus group sessions.

Ranking of the Importance of Selected Supports

Prior to the start of each focus group, participants were asked to complete a registration form. Included in the registration form was a list of supports that are often available to people with disabilities. On a scale of 1 (very important) to 5 (not important), participants were asked to rank the importance of these supports in allowing them to find and maintain employment. We have summarized the results by site (Exhibit 1) and by impairment (Exhibit 2). Differences by site might reflect differences in population characteristics and the availability of supports, but also might simply reflect variation in recruitment.

In general, the rankings assigned by Seattle/Tacoma, Newark and Los Angeles focus group participants are very similar (Exhibit 1). Nearly three-quarters of the participants at each of the three locales ranked family/peer support, access to health insurance, special skills or other training, college education and employer accommodations very highly (assigning 1's and 2's). Participants at all sites also ranked job search assistance, family financial support, family/peer support, procedures and medications, assistive devices and public income assistance (SSI, SSDI, TANF) highly (assigning 1's and 2's). Nearly three-quarters of Los Angeles participants ranked family/peer support as very important (1), compared to just over half in Newark and Seattle/Tacoma.

Participants in all sites assigned relatively low rankings to public in-kind assistance programs other than health (e.g., food stamps, housing subsidies, home heating subsidies), special education (as a youth), job coaches and PAS. Nearly twice as many Los Angeles participants ranked special education as not important (46 percent) as in Newark (25 percent), with Seattle/Tacoma in between.

Support rankings differed more substantially by impairment category (Exhibit 2) than by site. For example, while more than half of participants across all impairment categories ranked access to health insurance as very important, 80 percent of participants with mental illness and 90 percent of participants with other chronic illnesses assigned that ranking. Roughly the same proportions of participants with cognitive (71 percent) and mobility (68 percent) impairments assigned a rank of 1, while only 51 percent of participants with communication impairments ranked access to health insurance as very important.

Large proportions of participants with mental illness and other chronic illnesses also assigned a 1 or 2 ranking to specific drugs or treatments (88 percent and 95 percent, respectively), while less than half of individuals with communication and mobility impairments (47 percent each) did so. A larger share of participants with communication impairments ranked assistive devices and technology as very important (76 percent) than any other impairment category. Only a very small proportion (14 percent) of participants with mental illnesses ranked assistive devices and technology as very important.

The perception of the value of public in-kind assistance (e.g., food stamps, housing subsidies, home heating subsidies) also varied substantially by impairment. Approximately 70 percent of participants with other chronic illnesses ranked this support as very important, while the proportions for other impairments were lower, ranging from 15 percent (communication impairments) to 51 percent (mental illness). Participants with cognitive impairments were more likely to rank special education and job coach services as very important (50 percent and 70 percent, respectively) than other impairment groups (except participants with other chronic illnesses, of which 47 percent ranked special education as very important).

VR was slightly favored by participants with cognitive impairments relative to other impairment categories. Public income assistance was ranked most highly by participants with mental illnesses, cognitive impairments and other chronic illnesses (70 percent, 66 percent and 53 percent, respectively).

The supports with the largest proportion of participants with cognitive impairments ranking them as "very important" included job search assistance (75 percent), access to health insurance (71 percent), job coach services (70 percent), public income assistance (66 percent), and special skills or other training (64 percent). Those supports receiving the largest proportion of participants with cognitive impairments ranking them as "not important" included assistive devices and technology (46 percent), PAS (42 percent), and college education (33 percent).

The supports with the largest proportion of participants with communication impairments ranking them as "very important" included college education (79 percent), assistive devices and technology (76 percent), special skills or other training (71 percent), employer accommodations (68 percent), and transportation (61 percent). Those supports receiving the largest proportion of participants with communication impairments ranking them as "not important" included job coach services (57 percent), public in-kind assistance (50 percent), and PAS (40 percent).

The supports with the largest proportion of participants with mental illness ranking them as "very important" included access to health insurance (80 percent), specific drugs or treatments (75 percent), public income assistance (69 percent), family/peer non-financial support (66 percent), and special skills or other training (60 percent). Those supports receiving the largest proportion of participants with mental illness ranking them as "not important" included assistive devices and technology (63 percent), PAS (58 percent), job coach services (48 percent), special education as a youth (39 percent), and specific drugs or treatments (37 percent).

The supports with the largest proportion of participants with mobility impairments ranking them as "very important" included access to health insurance (68 percent), family/peer non-financial support (63 percent), college education (60 percent), special skills or other training (47 percent), and employer accommodations (46 percent). Those supports receiving the largest proportion of participants with mobility impairments ranking them as "not important" included job coach services (54 percent), special education as a youth (49 percent), public in-kind assistance (41 percent), PAS (30 percent), and transportation (26 percent).

The supports with the largest proportion of participants with other chronic impairments ranking them as "very important" include access to access to health insurance (90 percent), specific drugs or treatments (90 percent), employer accommodations (74 percent), public in-kind assistance (71 percent), and transportation (65 percent). Those supports receiving the largest proportion of participants with other chronic impairments ranking them as "not important" included special education as a youth (41 percent), job coach services (33 percent), and family financial support (21 percent).

Health Insurance

Health insurance coverage is especially important for many people with disabilities, as their need for medical services is much greater than that of people without physical or mental impairments. Because of their medical conditions, however, people with disabilities often have difficulty obtaining private health insurance, or face restrictions in the types of services their insurance will cover.

For those receiving SSDI or SSI, eligibility to receive public health insurance was cited as one of the most attractive features of benefit receipt:

"It's not just Social Security, it's also the medical benefits. When you're mentally ill and you work just part-time, you get SSI, you get Medicare or Medicaid."
"I still have SSI [for my health insurance]."
"[In college,] I was on SSI. That's when some changes came about, where you could start making some money on an ongoing basis and then they'd deduct. As long as you were getting $1 in SSI, you retained your Medicaid."

A number of participants described the tension between securing employment and retaining access to health insurance. One participant sought assistance in retaining access to public health insurance while working.

"The Community Health Law Project [was] helpful in me getting my disability benefits, because the first time I was denied, and so they were able to help me get them, and even now, [they] help me to keep my medical benefits while I'm working, so I can get work. They've been helpful with that."

Access to health insurance played a key role for many participants in influencing decisions to enter the labor force. Because receipt of public health insurance for people with disabilities is typically linked to receipt of SSDI or SSI, becoming employed can threaten receipt of health insurance. Many focus group participants described struggling with the choice between seeking employment and losing access to SSDI or SSI, and retaining secure access to health insurance:

"[Healthcare] is one of the biggest [issues] for me, more than accommodations. If the government really wants to help people continue employment and pay taxes, then find ways to get rid of some of the regulations and stupid rules that prohibit people [from working]. Most people I've ever met, it's like, hell, I don't need the $500 that Social Security gives me [but I need the Medi-Cal]. I can get a good job, but I can't live without my health insurance."
"A lot of people don't work because they do not want to lose their coverage, but it was a chance that I had to take, I just could not live on SSDI alone. I still do use long leg braces that Medicare pays for."
"With my thing, it's more a matter of medical costs, that there's just no way that any normal person can handle the medical costs. I mean, I have the ability and desire to work, as long as I get a certain medication."
"[In] the past three years, each year I've had some sort of major operation, [and] if I didn't have Medi-Cal, I don't know that I could contemplate what would have happened…I got a letter a month or two ago [about] sharing costs. I haven't followed that up. I figured when they learn about it, they'll let me know and until then I'm not in any big hurry to lose my benefits, because I still have a lot of health issues and my job -- even though it's Federal Government -- is still considered temporary, so there's no benefits whatsoever. To lose that Medi-Cal could be catastrophic."

A number of participants emphasized the primary importance of sufficient health insurance coverage over other benefits and employment when facing high medical costs:

"[M]y obstacles are all pretty much based on financial matters. I'm sure a lot of people in the room have probably been in the same situation. I got some medication after extensive visits with doctors, and that medication is what allows me to function. They say, ‘Without the medication, you're going to end up probably back where you were.' Unfortunately, the cost of the medication is just ungodly, and even with Medicare, I have a 20 percent responsibility, but that responsibility ends up being close to $10,000 a month, so what do I do?"
"My husband has insurance, but I don't have it through my work. If I didn't have it, my medicine is $1,000 a month that we'd have to pay without insurance."
"I can't say enough about my insurance [through employer]. Like this little gizmo [scooter] costs $2,300. My medication is $20 per day. If it wasn't for insurance I don't know what I'd do."

In a discussion among blind participants, most reported that having or losing government benefits was not instrumental in making decisions about whether or not to take a job, but that employer benefits were certainly a consideration. As one participant noted, however, that the need to retain access to public health insurance for people with other types of disabilities (for whom medical coverage might be more critical) might be much greater: "I think that impacts people more with high medical expenses more than it impacts us."

Besides high costs, other concerns include the substantial length of time needed to gain Medicare coverage. SSDI beneficiaries must wait two years before they are eligible to receive Medicare coverage.

"It's been a long journey, but I at least now have some Medicare coverage."

Another participant pointed out that even after he received Medicare coverage, often he could not get the coverage he requires.

"I have Medicare for five more years, they just extended that, [so if] you work you have five years at least, so I'm still on Medicare. But it's still bad, it takes you three months to get an authorization, it's so hard and they deny, deny, deny for what we need. So, that's the hard part."

Many participants described work and other management strategies they had employed in order to retain health insurance coverage. Typically, participants managed their earnings in order to retain Social Security benefits, which, because of the link to public health insurance, allowed them to retain access to public health insurance. For example, one participant said that she only works part-time so that she can avoid the loss of her medical benefits. She previously lost her eligibility for SSI because she made too much money, so now she keeps her earnings low enough to maintain her medical benefits. She said she fears working full-time and losing her benefits because she is never sure when her disability may get worse and require her to cut back hours. If this were to happen without access to her current benefits, she would not know what to do.

Another participant said:

"I was able to work part-time by joggling the figures, so I was able to go to work at the college. Then I reached a point where I was making too much but by then [my employer's] Basic Health was available…and then eventually I got on as a permanent classified employee so I have my health benefits through the college. This is a brand new wheelchair that I just got on Friday. The cost of this chair was almost $26,000."

A number of other participants reported negotiating successfully with employers (and others) to prevent loss of Medicaid benefits due to earnings. Participants reported using a number of strategies, including taking time off, shifting responsibilities, working without pay, shifting to part-time employment, and turning down promotions. For example, one participant said that he makes sure that he does not go over the earnings limit, and that his boss keeps tabs for him and tells him when and when not to work.

"I can make a maximum of $699 a month, but when I go over that I'm in danger of losing my Social Security, my SSDI. [I get benefits counseling] from the Job Seekers' class about that particular issue. They're willing to intervene for me with my job or with my boss if I'm in danger of going over that."¹⁰
"I'm getting Medi-Cal, [but] I'm being threatened all the time to be kicked out [if I] work too much. So what I have done the past few years [is] take vacations whenever I could [so as not to make over a] certain amount of money. My employer is real nice about it, they told me to do whatever I have to do."
One participant said she works fewer hours at her job in order to maintain her benefits and still collect SSDI. She said that she chose a minimum wage job so that she could work a maximum amount of hours and still stay under the limit.

Participants said that having medical benefits was critical in managing a disability, but that they had difficulty obtaining good information about Social Security benefits and, more importantly, about balancing benefits eligibility and work. Rather than risk losing health benefits, several had tried to limit their income ("I hoped I wouldn't get a raise") or chose not to work at times.

In some cases, participants reported that they were advised by program personnel to manage earnings. Several reported having been advised by VR counselors and others receiving benefits to stay underemployed to keep benefits, while another said:

"I can remember quite some years ago, I actually had a caseworker tell me…because I kept saying I want to go to work, I want to go to work…she said ‘the reality is you can't work because if you go to work, you lose your benefits, you have no medical coverage, you have no health coverage, what are you going to do?' This was a caseworker with DSHS and she said ‘I'm telling you this in your best interest.' This was a long time ago because at that time, I would have lost everything."

Several participants described advice they received from health professionals regarding benefit management:

"I went to an eye doctor in New York and he was the one who said, ‘You can't work, you're blind!'"
"…my joints were going and I was only 30, and my x-rays were flying around the country, with a series of doctors saying, ‘What do we do with this person?' So the doctor was strongly advising me not to work, to buy some time not to be active."
"Even though I was qualified with the school district, I kept my own individual insurance because my doctor had told me, when they thought there's a possibility that I might have MS, he said two things. ‘Don't ever let your health care lapse. Don't lose your insurance benefits. It's going to be hard to get it back.' And the other thing is he told me to keep working."

A number of participants indicated that their insurance, whether public or private, did not cover all needed medical care. Participants said they paid for such care out-of-pocket, sought coverage through alternative sources, or found unconventional ways to gain access to needed services:

"There might be some clinics that would normally service homeless people that don't necessarily require that you have to have insurance. And some of them are really pretty good because the doctors that go there are really caring people, like Pioneer Square Clinic or something…I think they'll work with you [on medications]."
"Pharmaceutical companies have scholarships, also. And all you need to do is write them or ask your pharmacist to call them, send you an application."
"I relied on my parents until I was like 18. When my parents benefits stopped, I relied on the public health system, you know, going to free clinics that kind of thing. And, I actually got married because I needed an operation. So that is how I got health benefits."
"My doctors gave me samples for like, two years."
"When I became independent and started having my own benefits in my name, I got what was called a conversion plan from my father's policy. It's health insurance that I had to pay for, but it supplemented Medicare which didn't have any prescription benefits. This had prescription benefits…When I got my first job, I found that it didn't have very good mental health coverage, so I kept this policy through my first job and even afterwards…until I got my current job."

A number of participants said that even though they considered features of private health insurance carefully before accepting an offer of employment, they were not always able to accurately assess benefits, or to secure the level of benefits they desired:

"[There's] no insurance at all in the new occupation that I picked, [although] I didn't actually know that until after I got the job. That was my choice, though. And as soon as I start getting money in, there are places out there for private insurance…Up until this career change, I had full insurance that was covering my medication, [with] the little $10 co-pay thing."
"[I had] the best doctor in town at [the mental health center, paid by] Medicaid up until the point I got my job.…It was a long time before I realized that [the MH center] was not covered by my insurance, [and] my doctor wasn't being paid by my insurance agency. Then I finally got my bill and…it put me in a lot of debt.…So I lost my doctor as a result of me getting my job, [and] I've not had as good a doctor ever since.…I get a new doctor every six months, [and] with my particular illness, I have to retrain a physician almost every time I have a new doctor…The logical conclusion is, if I wanted good health, I would have stayed unemployed."
"One thing that I'd think would be helpful is government should have some type of program of subsidy for the medication that you need. My new job, I signed up for group health and I [right away] thought, do they cover the medication? I wanted to…be able to work full-time and still afford my medication. Luckily, I found out that my health plan does cover my medications, but there might be other medications that other insurance plans won't cover, and it's hard for a person to get off a system, want to work full-time and still be able to afford the meds."

Many participants described their experiences in searching for employment that would provide access to private health insurance comparable, or superior, to coverage under Medicare or Medicaid.

"My family and other people told me ‘because of your medical situation, you need to maintain your medical with the state, you're going to have to look for a particular job so you can keep your benefits and maintain your health.'"
"In today's society you can't make a move if you don't have insurance…so people that are [looking for work] these days, they want the benefit package. They're looking at employers, [and asking,] ‘What kind of an insurance package do you offer?' When I came here I had to ask the same thing. I had a wife and a kid to worry about."
"In the job that I'm in now, I'm getting health coverage, but…if it's a preexisting condition you have to wait six months before you can get put onto the health plan. You make too much to get it from Medi-Cal, so you're stuck in the middle. All the money that you make has to be spent on meds and all that kind of stuff and you hope you don't have to go into the hospital. It'll be six months before I get out of the minefield. So when you ask do I have health care, basically, not at this point."

Once employed, participants noted that continuous access to sufficient private health insurance was not guaranteed as some employers might choose to make unanticipated and disruptive policy changes:

"I work for a small company, so as health insurance goes up, his policy goes up. He changes, so sometimes when he changes, you're forced to change doctors. But right now, that's the only insurance I have, since I'm no longer qualifying for Medicare or Medicaid."
"My husband's company changed insurance plans, and I went from paying a $20 co-pay for medications, to 50 percent of the cost. Everybody else thought that was great, but when you have $1,000 a month [in meds], $500 a month was too much. A lot of stress and phone calls later, I found out through a drug company that they have a program that you can qualify for …I was able to go under that and then I only had to pay $30 for medication."

Among participants with access to needed private health insurance through employment, retaining coverage served as one of the main attractions to continued work, regardless of the circumstances of employment:

"I think they're trying to get me to quit because there's only one, as far as I can tell, really, really unpleasant supervisor to work for, [and] after about a year they shifted me to him for no apparent reason hoping he would scream at me and yell at me and chastise me, so that I would just quit. That was seven months ago and I have not quit yet. You want to know why? I need the medical benefits so badly. They're worth more to me than the wages are."
"The only thing that keeps me on the job is medicine to stay awake. I have to have insurance to pay for the medicine."
"Sometimes when…co-workers are just about as insensitive [as they can be…and I'm just about to walk out that door [and never come back], the Lord just kind of reminded me, 'Chris, come on, you've got kids, a family, responsibilities…The reason people work is exactly what you were saying, insurance coverage…that's the reason I need to work, I need to be responsible enough as a parent and adult to say, 'All right, so I don't feel like doing it but I do it because there's a need there.'"

Social Security Disability Programs

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

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

"I wasn't sure whether I could make it. Social Security, SSI, SSD[I], provided funds for me."
"I had to get SSI because I couldn't survive without [it]."
"SSI, must have it."
"I'm scared that I'm not going to make it and so support of the SSDI is very important because I'm single."

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

"If you're trying to work and stay on SSI or SSDI, you have to deal with spend downs. You can only make so much money before they take away your SSI or SSDI benefits. You have to pay out-of-pocket for your medication or your therapy. For a while, I had to work two years, part-time, just so I can stay on benefits. It was hard to get off the government assistance. A person could try to work for 30 hours a week and still get benefits."
"I had to stay working 20 hours a week at $5.50 an hour, just so I can still get SSI or SSDI. It makes it hard for you to get into full-time work. It's like a crutch or something."
"With SSI, you can make some arbitrary amount [that] you keep.[Then,] every month, you've got to report how much you made.[And] you give the Federal Government a dollar back…for every two dollars you make. Where is the incentive in that? What person is going to go out and work [at] something that they are capable of at whatever level and have to give half of it away?"
"It seems as though when you do work, you're penalized for it. They cut your monies and I don't understand it. It really puts a damper on getting better."
"I'm very angry with Social Security. I'm angry with DSHS. Those people do not want you to get well because it would cause them too much bureaucracy. It's pretty depressing."
"I have SSI. If I go up to 30 hours -- I'm at 20 right now -- I will lose it. Yes, I want to eventually be totally out of the Social Security system because the Social Security system unfortunately keeps people who are on it at an impoverished level because I have to report all my income into SSI. Any kind of fluctuation with my income will take my SSI up or down."
"My family was earning $1,000 above the level for funding, so half the funding for school came from DVR and then I had to work. When I got to college, I applied [again]. They wouldn't give me SSI until I was about 20… I was on SSI for several months and I thought, this isn't worth it because every time I would get a bigger paycheck, I'd get lower Social Security, [and if] Social Security went up, I'd get a lower paycheck. I learned more from work then I did from getting Social Security, so I got rid of [it] and just maintained my work ethic."
"I'd rather work at the school and help them out there than [do nothing] for an extra hour a day just to satisfy Social Security."
"I want to drop my SSI, I want to drop all that stuff right now. [Working has] been real good for my self-esteem because it's good being independent instead of waiting for a check to come in the mail…As far as moving off it, I'm all for it."
"I didn't have SSI in the beginning and when I did finally apply because I had worked so many years it was more or less disability insurance. [But] SSI would actually have held me up because they tell you can [only] make so much money. So I had to drop SSI. If you go and work then you're being penalized, [but] you really can't afford to not work. Anyways, I didn't stick with SSI. I ended up dropping it, so and going out on my own and [getting] a part-time job."
"If I earn over $700 a month, and SSI is cut off…it gets to a point where you actually almost have to consider not working."¹¹

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

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

"I went down there with a case manager and we reported everything. And they said, ‘Okay, everything's fine.' It's, like, you should be getting that money. And then so time goes by. I don't think anything about it and…like a year or something goes by, and another case manager says, ‘Wait a minute. You're being overpaid. You're going to have to pay all that money back.' And so I start to go, ‘Oh my God, it's going to be thousands of dollars.' And so we went down to SSI and they said, ‘Well, there's nothing we can do about it. You have to just put that money all in an account and just save it.'…But we came to the conclusion [that] if I had saved all that money, then they would have taken my medical benefits away from me because I‘d have too much money that I'm saving…They do it to everybody. And it doesn't help you get on your feet. It doesn't help you keep a job. I've worked very hard to get where I am, and I really don't think it's fair that I have a $7,000 debt that I have to pay back."
"I reported everything correctly and I get the response back, ‘Everything is fine. Don't worry about it. We'll inform you.' And then at some point, I got a letter saying, ‘Okay, well, you make too much money so the money benefit is now over. Sign this that you acknowledge and agree.' I did, I sent it back in. And at the same time, they send me another check…Must be my last one, that's fine. Then I get another check. And for about eight months, they send me a check…I informed them, ‘By the way, did you know you're still sending me money?' I don't hear anything back, but I get another check. I need the money, and obviously you either don't care or you've missed something. So I don't contact them. Then, over a year later, they contact me saying, ‘Oh, by the way, we've overpaid you. Now you owe us money.'"

Most recipients of SSI overpayments were eventually acquiescent regarding reimbursement:

"If they make an overpayment...well it's your mistake."
"I owed them about $3,700 by the time it was all over."
"I'm paying $10 a month for the next 19 years to pay back $2,300. They're taking it out of my Social Security."
"It's because I was working and [I was] on SSI. On my first check when I was on SSI, I was working and they sent me my retroactive and I was working all that time so I have to pay it back."

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

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

Vocational Rehabilitation

Participants highly valued supports and services that were individualized, and that enabled them to participate more fully in mainstream society. For example, participants were most pleased with VR providing or paying for equipment and services, such as computers, assistive technologies, transportation, education, and third-party training. Such supports targeted specific needs and promoted independence. They were less satisfied with services received in a "sheltered" or segregated environment, such as job training provided through the state VR system.

"The $13,000 worth of equipment, the raised roof, a lift and all that -- DVR paid for most of that. I paid, I think, a thousand dollars co-share."
"DVR is a very, very, very, very good organization. It's been really good with me. They paid for classes [and] class fees [and] they paid for my books. They gave me transportation, supplied me with transportation, gas."
"I decided to make a career change. I went into computer programming. For a whole year I went for job training. It was a special program for people with disabilities. DVR was one of the co-sponsors, and paid for it along with PIC [Private Industry Council], and I learned programming."
"DVR, about five or six years ago, also bought me a computer with voice recognition technology so that I could do my current job using computer technology."
"Well, I did go through DVR for my education. They did help me with adaptive equipment for my van. I can say just like they were, like, no help in helping me find a job."
"I had my tuition paid. [But even though] I hadn't finished all my [program] yet, I wanted a job. I wanted to get employed. And I was just tired of [school]. I wanted to see that paycheck every two weeks, every three. So they transitioned me into the PWI program, the Projects with Industry. The PWI assisted me, [but I was going on] job interviews and not seeing any good results. My last interview was where I'm currently employed at, and I just went with a lack of motivation."
"I went to college, and I also attended massage school and became a certified massage therapist, and I became a certified personal trainer, and I went on to earn my BA degree and a Master's degree. [DVR] paid for my schooling all the way through to my Master's degree, tuition, and books and supplies. They paid for me to go to massage school. They paid for me to have an interpreter sometimes. They paid for me to attend an independent living program. They paid for clothes for me to go out on job interviews. They paid for a computer, for assistive technology, transportation, repaids on my cochlear implant, a talking calculator, a talking personal organizer, [and] a tape recorder to hear at night."

Others, however, said that VR funding fell short regarding education:

"Okay, so you got transportation and you got your Bachelor's [degree], but trying to go to post-graduate [studies], no way was VR going to help."
"They paid part of my tuition. I got a scholarship to go to USC, and they wouldn't pay tuition for USC [only an amount] that was equal to a state college. They paid for my transportation, my books, supplies, like a tape recorder and that sort of stuff."

Others noted the agency's excessive bureaucracy made timely access to services difficult:

"That's a real problem, transportation. [Like she's] saying, her van is falling apart. Then when you get approved [for a] van and get evaluated, it's a three-year process. So in the meantime, you [still] have a disability and it could become aggravated."
"And sometimes it takes up to two years to get a wheelchair…"
"The system is endemic with red tape."
"I'm trying to get [DVR] to help me get -- hopefully, eventually -- a new van. My van is 14 years old and it's been rebuilt and rebuilt and rebuilt and I've had to pay out the money for the rebuild. I tried to get them to help me financially."

One participant said that despite its strengths, the VR system has minimal positive impact on employment:

"During my junior year [of college] we decided to see if [VR] could assist. Certainly they didn't with tuition because it was a private university, but they did help with paying for readers and textbooks. [People may] get some peripheral assistance from [VR], maybe with textbooks or financial aid or whatever, but the people who really are successful and find work tend to do it despite, rather than because of, rehab."

One participant, who worked as a rehabilitation counselor, was reluctant to apply for services from VR:

"I've gotten all of my jobs myself, especially since I started working as a job developer about four years ago. [That's] because if I go through Department of Rehab, if I open a case with them, the problem is I'm serving [VR] clients. So my big worry, and I've seen it happen, is if I go and I get a case open, then I look less capable myself and the rehab counselors for the Deaf will stop referring [people] because then I'm no different than the clients because I am one. So I really cannot open a case at VR unless I want to shoot my own foot off for the rest of my career."

Particularly for people with MR/DD, job coaches provided through VR services play very important roles. Such coaches provide motivation and support, serve as a source of information about services, mentor and counsel individuals, in some cases accompany individuals on job interviews, and even help resolve employment disputes and difficulties. Because the role of the job counselor can be so critical, participants' perceptions regarding VR may be heavily influenced by behavior of the job coach or case manager.

"I wouldn't [have gotten the job I have now] if somebody wouldn't have been with me because I stutter so bad in front of people, they will not even consider me…I have not stuttered since I got a job."
"If a normal person goes into a job, it's very easy for them, maybe not always easy, but they just kind of take it for granted that they perceive what they're supposed to do and what their boss expects from them. But someone with a thought disorder might not necessarily perceive things that way. And so having like a support to kind of help you learn how you're supposed to perceive your job, I think is a big help."
"I've had DVR counselors where you call them and they're not there. You leave a message to call back and two days later you call and [so on and so on]."
"I don't know if the counselors support us, or they are just here to do their daily job and do it and get it over with and go home."

Participants noted that the levels of knowledge, compassion, and skill of VR staff are important to success of VR services, and in the absence of a qualified counselor, it is important to self-advocate and have a clear idea of what you want. One participant said he was glad that he had determined in advance what kind of job he wanted and where he wanted to go to school, because he could not have relied on VR to help him make these decisions. According to VR's vocational assessment, he was suited to be a truck driver, clown, or cowboy. Because he had a physical disability that limited his ability to drive a truck, he was "left with" the choice between clown and cowboy. Another said:

"We [need to] talk about trying to change the attitudes of the professionals that are supposed to be out there helping us. I've found a lot of them to be very paternalistic. It's sort of an us vs. them type thing. I actually have to walk sort of a fine line because I'm a person with a disability who's also a professional in the disability service agency."

Several individuals with mental disorders indicated that they were not successful in obtaining assistance from the traditional VR system, but were able to find the employment services and supports they needed in the mental health system. A few individuals also reported being discouraged from going to work by mental health providers, but some of these same individuals said that they had been encouraged to seek employment within the mental health system after receiving treatment for their disability.

"[There's no DVR policy that says that] people with mental illness can't go to work. [But if you] consistently, outrageously, did wild things, and lost jobs, I'd think that be the one time we'd say, ‘Come back when you get your behavior under control.'"
"[If you're in the mental health system], not only is it not expected, it's not in their interest for you to work because…they're not receiving funding for you being there [getting services]."
"My [MH] case manager, he just saw there was something there and he felt that I really should be and really could be working, and so he encouraged me."
"[I'm working at] the mental health center, getting my medications, and talking to my case manager."

Employers

Focus group participants reported a wide range of experiences with employers in seeking accommodations for their disabilities, including modifications to elevators, doors, entrances and exits and other features of the building; receipt of additional training time; receipt of flexible job hours; ability to work from home; or changes in job duties. Employers provided some accommodations through formal disability integration policies, and other employers provided supports more informally. In all cases, participants regarded the accommodations as important, or even essential.

Among building modifications, the installation of ramps and other features to accommodate wheelchairs were most often cited:

"We have handicapped parking, we have elevators, we have ramps."
"When I got there, they'd been in three different buildings and when I moved to the second building, one of the problems I had was getting into the restroom, and they put an automatic door opener [installed in the] restroom, which was wonderful. They tied it into a remote they gave me. [I also have a remote for the] front lobby doors. The receptionist saw how easy it was and asked if she could have one as well to let people through the lobby doors."
"They moved our mail slots down lower for us where we were at, so we could reach them. I think because we work at a rehabilitation facility a lot of things are already adapted down for us so it's not like specific things that we had to ask for, maybe except for a computer and phone, but for me, not that much that had to be done over."
"One thing they did do for me personally, because the way the bathroom door swung in, so they fixed it so that it swings out. And that is one thing that they did do for me before I started working."
"Oh, another thing, they did put a little ramp in front of the door, so that anybody could push me in. Before it was the steps, only the boss could do it, but now anybody can push me in."
"They did lower the desks down to make sure they fit you exactly."

A number of participants said that flexible work schedules were a particularly important accommodation. Flexible scheduling allows them to work efficiently, keep doctor appointments and stay healthy:

"The real obstacle was going to be finding a company that would be considerate if I had to take some time off for myself, for my health. Having that built-in flexibility was the real obstacle."
"[My] work schedule is pretty flexible because I travel so far to get to work. I'm never really sure what time I'm going to be there. Sometimes I leave early when I want to get home [early]. My employer is pretty reasonable about my schedule."
"They've always been willing to accommodate me…One time I was always late because of ACCESS [public transportation], and I had to talk to [my boss] about it and explain it to him. He was nice about it and is always telling me, ‘If you need anything, tell me.'"
"If I needed anything like [flex-time] they made it clear that they'd be willing to do it."
"[Before,] I would report every time I'd have a doctor's appointment and say, ‘I'm going to have a doctor's appointment. I need to be gone for two hours,' and she finally said to me, ‘Stop telling me and just go. Do what you need to do.'"
"As long as I tell my boss that I have doctor's appointments, like, two weeks in advance, they work around me."
"I have flexible work hours, time off for appointments, and the ability to work at home when I am feeling stressed out."

Participants, particularly those with hearing or vision impairments, also commonly reported access to assistive devices and technologies. Such technologies typically included computers with Braille and speech access, optical character recognition software, Opticon (to convert text to large print), JAWS software (converts computer screen output into speech), TTYs (teletypewriters), electronic schedulers, and others.

"[I work for] a non-profit organization that provides services for deaf and hard of hearing people, [s]o we have access to interpreters. [W]e have TTY, e-mail. I don't use a lot of accommodations myself because the environment itself is very deaf-friendly, it's very easy for me to come in and feel comfortable. In the past, where I worked, I struggled, but here, it's different."
"I do have a computer with Braille and speech access. I have an optical character recognition scanner and can scan stuff in. I'm great with the Internet."
"They provided me with a stretch-belt [that] was way better than the one I went to the store and bought…It helps a lot to have that [because] it's much more firmer and helps in the lower back part. It's a really big difference when your back is killing you. It helps me out to have my stretch-belt on because it helps me stay more focused. Not everybody knows that, but I know it and it does help me feel more focused."
"I have a computerized calendar that will come up and remind me that I'm supposed to go places, and also we have a phone system that will call up and remind me to be some place."
"I have a lot of accommodations. I have a special display that I use to read computers and I use a Refreshable Braille Display…And then on the telephone, I use a headset with an amplifier so that I can have my hands free. I'm mainly at the computer."
"I have had a computer with adaptive equipment…I use a CCTV to help me, so that's helped me on my job. [Also,] recording devices, such as a tape recorder. I have a talking calculator. [Support] has definitely been there for me; those types of accommodations help me do my job."
"My employer has provided me with all of my adaptive technology, closed-circuit TV, and so on."

Below is a list of the accommodations most frequently provided by employers as reported by participants:

Flexible job hours;
Flexibility with job description/duties ability to work from home;
Graduated hours during job startup;
Time off for medical appointments;
Installation of TTY;
Installation of modified computer mouse;
Installation of optical character recognition software;
Installation of speech-to-text software;
Access to electronic schedulers;
Installation of software to increase size/definition of computer screen text;
Bathroom modification to fixtures and walls to enlarge space;
Provision of interpreters at meetings;
Relocation of office during elevator repairs;
Adjustment of desk height;
Installation of automatic door opener;
Wheelchair modification; and
Installation of ramps.

Nearly universally, participants said that the behavior of immediate supervisors played a major role in job entry and career development. Having a supportive supervisor aided in securing accommodations, educating co-workers about accommodations and disability, protecting confidentiality, and ensuring that co-workers provide tools and information necessary for the individual to complete tasks:

"The job I got now is the best one I got, ‘cause they are supportive and they know how to treat people with disabilities. What they did on another job is that they would fire you. Here they just sit you down and talk to you."
"And one thing I will give my supervisor, he'll fight for your rights, like if he feels like this piece of equipment will help you be more productive, he will go to his director, which is the vice president, and somewhere they're going to have to come up with the money."
"My supervisor sat down with me and said, ‘I think you should be transferred because the work that you're currently doing is too easy for you,' which I agreed with…They arranged for my transfer to Dallas. [But I decided] I am not going to [go] out to Dallas, I am going to go with this other position [here] because I have somebody who understands deafness, who understands me, understands my needs and this is where I'm going to go."
"My first boss at Nabisco was a great guy as far as making accommodations for me. He made them knock out this whole wall. I had this nice place with no walls. It was wonderful."
"I just lost an employer who was wonderful. This man came in six months after I had become totally deaf and he could communicate with me perfectly well. I finally got to a comfort level where I was able to tell him that, 'These people in the building and in our office will not let me do my job. They're going to everybody else to ask their questions.' He took a hold of the situation and he redirected everybody. Everybody who called him on the phone with a question that was mine to answer, he said, 'Call Christine, or email her or walk into her office.' Everybody who walked in his office with a budget report, he said, 'You go see Christine.' He just pushed in that direction. That helped a lot. He also implemented site visits for me to go out into every one of the buildings every month, so I meet face to face with principals and bookkeepers in every building, and we can improve communication and they'd stop being afraid of me."
"The young lady that is now my supervisor for over a year, she gives me great support. She really goes in. She listens to what I say and the problems that I have…I can advocate for myself, but she can do it on the supervisor level, and that makes me proud that there is somebody in my corner who will listen to me and will help."

A number of participants cited substantial difficulties in gaining access to needed accommodations. In some cases, they were able to prevail, and in other cases they worked around the lack of accommodations:

"I had an office in the administration building…I used to go in once or twice a week…because I'd have to interview people when I hired them. But the building is not easy for me to get in. I mean there's a ramp, I'm in a wheelchair so I really have to huff to get up there. It's like a ramp like this, I can't get into the bathrooms, and it's hard for me to get around within the building because everything is very narrow. But now I don't even have an office because since I was never there they sort of reallocated my space and didn't even ask me. All of a sudden I had no place, so I can't even get to my files. It hurts my feelings I think more than anything because I don't have a space there, but it gives me a good excuse to not go in. So now I do 90 percent of my job at home whereas I used to do 70 percent."
"I wish I could receive permission to telecommute. I'm fighting for that now. They're denying me. They said that telecommuting is not a reasonable accommodation, that telecommuting has to do with the distance that you live from [work] and not from your disability. They did allow me [to work out of another] office on the days that I was supposed to wait to see if I was called for jury duty. But I don't think that is a reasonable accommodation. I think I was accommodating them, frankly."
"Where I work now is a steel warehouse. There are no accommodations. They're actually putting in a ramp now so people can come through the front door. But, inside the building there's steps and different levels all over the place."
"I've gotten a lot of help from being able to have my own ‘techie,' my own technical assistants, a guy that I call because I do most of my work on the computer. I'm also linked to the network, but I can call him and he can come out and set up my computer and modem and do all that for me…It makes a big difference because when things aren't going right, I'm just cut off…The district isn't thrilled about me having him…They kick and scream and don't want to spend money to have the tech guy come in and spend it just for me. That's not given to me [as an accommodation]. It's just that I said, ‘I need to do this job, and school is starting in two days and the computer doesn't work, and if somebody else is going to staff the subs, that's fine…But it makes a big difference."
"Neither [my employer or VR] wants to pay [for] Dragon Dictate [computer software], and it's been a constant runaround for the five years that I've been [with VR]…It's relatively cheap now, [but] we don't know who's going to pay for it. Instead of fighting this tooth and nail, which I still do on occasion, I concentrate on the parts of the job that I can do, but it's getting to the point where it's ridiculous."

Participants also described various experiences negotiating with employers for needed accommodations. For some, providing information and technical assistance to an employer was sufficient, for others, accommodations were substantially delayed or never received due to differences between employees and employers regarding priorities, or lack of access to information:

"I needed a raised desk and everybody [said], ‘Oh, gosh! They're so expensive,' because they were thinking in terms of electronic up/down. And I'm going, ‘Huh? I need four wooden blocks under my desk legs. Make a hole so the leg fits in so it's safe.' And there you go. And it was like, ‘Oh!' It must have cost them all of $3 to find some scrap lumber. They were thinking in terms of several thousand dollars for a very expensive desk. No, no, no, no, no that's not what I want."
"I have a very similar [situation with my keyboard] where I actually went out to the trash, found a couple of cardboard boxes, put the keyboard on top, and said, ‘Right! I'm accommodated.'"
"[At] the very same meeting they announce they're not going to get automatic door openers, they [say they're] providing automatic flushers for all the toilets in the facility. We're not going to get the door openers because they said that the doors that we currently have meet ADA requirements and we [have to spend] the money on the automatic flushers."
"We didn't have a Zoom Text. We didn't have the equipment that I needed to perform the job that I wanted to do. All I had was a computer. I did not have a CCTV [either, but] I was able to acquire a CCTV loan through the Braille Institute."
"I had to come in with a CCTV and large-print software. Right before I left my job they were speaking of purchasing a computer that had large print in it [because] they thought it would be accommodating to me."
"[Large-print software] wasn't put into my computer until very shortly before I left, also."
"It isn't because [my employer] isn't willing to buy me equipment and offer me training if I could just tell them where I wanted to go to get the training."

Several participants cited co-worker or supervisor attitudes that made gaining access to needed accommodations very difficult:

"I found that some people, especially old timers, still have an attitude about it. I mean old, '70s, late-'60s. ‘You know it costs money to build ramps.' They've got that mind-set, back when they were a kid, cripples stayed home and ‘I'm paying taxes to put curb cuts in for you.'"
"As far as accommodations at my workplace, they have built a cubicle a little large to accommodate the chair, but it took three years to get electronic doors in the front entrance of the building. After vigorous complaining from me and other employees and the clients that come into the center, it took a while for the landlord of the building to make changes that needed to be made.…The doors are still really heavy in the building, but by and large, physical accommodation is not a problem. It's the attitudinal accommodations that get me in trouble."

Participants also said that supervisors need to understand the nature of the disability and the required accommodations, and when they do not, employment situations often fail. Newark participants were more likely to have stories about an employer failing or refusing to accommodate a disability and to report concerns about divulging the presence of a disability to an employer or potential employer.

"…I asked for accommodations,…for 32 hours instead of 30 and I had a doctor's certificate about it. They said they wouldn't compromise the security of the building, and [I] was not granted any accommodations. So I quit, basically because their approach was, ‘Now you created us an ADA case,' although they knew I was disabled before they hired me. It was not a very good situation."
"I was asked to become competent on the computer and I [told them] I couldn't as it is currently constituted, I simply can't read the screen without burying into it, which then precludes my using the keyboard. There are all kinds of devices…that [would make using it] very easy. When I asked for it, I was ignored. Reasonable accommodation would seem to apply that it would be forthcoming, but it hasn't been."
"The other thing that is supportive is if my employer or anybody acknowledges that a mental illness is a disability. Because the job I had before the one I have now, I was actually fired. And there was nothing I could do about it because I didn't have an advocate."
"I was provided with a Teletype device. You know, a phone for deaf people? And that was great. I didn't even have to tell them about it, they just knew that it would be a support that I would need. The only thing that I had to tell them was that they can't call last minute meetings because I need an interpreter, and at first they weren't even sure what an interpreter would do…They were a bit awkward about how to get one, so I said let me do the work, and I did. But after that I really felt like it was the manager's job since they were the ones planning the meetings, to also plan for an interpreter."
"We moved offices, and right before [my supervisor] signed the lease agreement she sent me over there to make sure it was going to be accessible for me, and told me to go into the bathrooms and try the doors. And if anything was too heavy or I felt it was non-accessible, to speak with the managers of that building right there and then and let them know and see what they are willing to do before we sign the lease ‘cause we could have still backed out. And they were great, I mean, they went in and they worked with the spring of the door and loosened it, so that it wasn't so heavy to pull open and it would stay open a little bit without slamming right shut. And did the same thing down in our offices with the back door, so that I could pull the back door open and come in and go out that way."
"[If] supervisors and co-workers…understand job accessibility and job accommodation, then they don't feel they have to take on more of your share."
"If [employers] just understand that people with disabilities can get the job done and do a good job, that we're conscientious, then they're a lot better off than with those people who maybe aren't conscientious in doing a job…We're not quitters."
"I was trying to become a cashier there and I guess I lost my focus one day and I gave the person back the wrong amount of change and I blew it. I blew it so bad. I only did it that one time…The guy gave me a $10 bill and it was for $1.38, and I gave the person back $1.38. I don't know why I did that. I just lost my focus. It just felt so bad because it's just right there on the register itself, it tells you how much to give him back. You don't even have to think about it yourself…It's just a matter of me getting used to it. I have a lot of confidence that if I was given the opportunity to do it again, I think I would do much better and I would be able to do it but they haven't given me another opportunity to do it. I asked several times."

Many participants said that lack of understanding about disability sometimes led to anxiety and fear among their co-workers:

"I was working in a hearing environment, and many of the people had known me for 12 years. Suddenly I was totally deaf, and people stopped talking to me. One of my biggest experiences was the absolute vanishing of support when that change happened, in a place that I had been for years. People were afraid of me because they didn't know what to do."
"[Sometimes] your co-workers just simply don't understand or don't have any knowledge of disabilities and they're scared because you have a disability -- like it's catching."
"There's another underlying reason why society generally seems to put lots of us in whatever boxes they can. That's the real fear of anything that's different, either physically or whatever else you don't understand. I've been a blind guy for 47 years and I am absolutely both amazed and appalled at how very afraid most people are about blindness…I try to appreciate it, but I really don't understand it. It's because of what peoples' individual and congregate misconceptions are. And it doesn't matter whether you're blind or you have a hearing impairment or dealing with an illness or what it is. It's the same old kind of stuff of fearing disability. There are lots of people out there who because of their experiences really have a hard time accepting just people as people. I think that's the problem that lots of governmental entities have…But it's an underlying thing, when we have a chance to relate one with another, we really come to recognize that most of us probably have a whole lot in common no matter what our [differences]. Disability doesn't have to separate us at all. It can help us to be able to support and encourage each other...I don't think that's gotten through to some of the governmental strata… People with disabilities don't need handouts, just support."

Participants also reported that the willingness of co-workers to learn about the nature of the disability was also important for ensuring a comfortable and productive work environment:

"The only time I really feel disabled is when I go in the office. Being that I'm a client and I work there also I get to see both sides of how people really feel and act around the worksite. The language sometimes is straight out of the 1920's as far as describing disabilities. People come up to me [and say,] ‘We don't know how to deal with you. We've never had a person on a caseload working here before.' I've had to tell people while I'm on the job; you treat me as an employee. Once I get off the job and you have to deal with me, deal with as [a person]. And if you're my case manager, then you should have a good working relationship with me anywhere. So it's that three-pronged attack that I feel when I go into the office."
"When I work around a lot of people, they make me uncomfortable. [There] might be one or two people that I'll open up to, [but] other than that it's like everybody else I'm uncomfortable with. I'd rather be outside or I'd rather be just by myself, basically, instead of with people…[At the job I was in before,] I couldn't keep up with the conversation…I would get confused [and] I'd feel left out of the conversation or like I'm not really involved in the group."
"My first job was one of the most horrible experiences of my life and I actually haven't spent a lot of time thinking about it for a number of years and I'm finding that I'm getting upset sitting and thinking about it. It was awful. I was a medical transcriptionist. They hired me and I was shocked but then it went down from there because nobody would talk to me and the most painful thing I remember is the whole office planned a party right around me and didn't invite me. That was really hard but from that I learned that I really did, as a blind person, have to make some extra social efforts, whether I wanted to or not. Whether I wanted to go out for a beer after work with somebody or have lunch with somebody, I had to do it."

Some individuals advocated increased disability education in the workplace as a way to lower barriers to employment for people with disabilities.

"[The important thing is] just educating people [about] the fact that just because your legs don't work doesn't mean your brain doesn't work."
"Sometimes people don't know because they're not educated…They need to offer it [disability awareness training] every so often for new employees."
"[Policymakers should] implement diversity training directed at disabilities the way they do sexual harassment training everywhere. Don't wait until a disabled person walks in the door to figure out what to do with them. Teach them what it's about before we get there…just make it a universal part of orientation in any job. Every time there's a new person and new employee orientation, throw some diversity training directed at disabilities, not at race and sex. We've already got the race and sex issues covered with the training that's required."
"I teach health education to high school kids just down the street. I think I'm doing a two-fold thing -- I'm teaching what I'm teaching in my subject area, and also teaching [students] that you can be disabled and still work. You can contribute to society and not have to take away from society."

One person stressed the need for training about hidden disabilities:

"So if you look at me and I can see you…and you know I can talk, you wouldn't know that I was legally blind or you wouldn't know I was hard of hearing if you were just looking. So if I go to my employer and I say I'm disabled and I have the medical records to prove it, they don't believe it. I think a lot of employers need disability training…I thought that was what the ADA was for. To have [disability awareness training] mandated. But everyone doesn't get trained. The [employer] can say they can have disability awareness but until [they] actually get a person like me [with a hidden disability] -- that'll show you if the company has it."

A number of participants said that even relatively small efforts at education can be effective. One person described how employer knowledge of the ADA helped ensure access to employment:

"I'm in a job thanks to the ADA. I might have lost my last job and the person who was in charge of our unit did not want to hire me…They said, ‘You're going to hire him, and she hired me kicking and screaming and she's no longer there. They don't want to get sued."

A number of participants said that helping potential employers, co-workers and others become comfortable and develop an understanding of a disability may be best accomplished by the person with the disability.

"People are…not necessarily stupid, they're just not educated in that area and it's up to us to educate them. We're the ones that know about us. If we don't educate them, they're still not going to know."
"I got one job through an employment agency, which they were very disturbed. I walked in with a guide dog but I dealt with it very [directly] -- I said, ‘Look, I know you're nervous about placing me. Let's talk about being blind so I can get you over it so you can get them over it so I can get a job!'"
"When you go in with a very visible disability, there's sort of a perception there to start with, so you need to convince them, yes, I can do the job and it's not going to cost big bucks for me to do the job."

Another participant said she believes people take their cues on how to assess disability limitations and how to interact with an individual with a disability by observing the behavior of that individual. Individuals who behave comfortably with others are likely to help others feel at ease. One participant, who agreed with this statement, was nevertheless uncomfortable with it:

"It just bothers me [that] you have to break that ice and put them at ease so they would be at ease with you…You have to be that one that makes that first step."
Another said: "It stinks, but when you go into an employer your responsibility is to prove that you can do a good job and until you come to an agreement with the employer, disability is really irrelevant. Nobody ever got hired for what they can't do, so I guess the short answer here is to focus on your abilities, to be very confident about saying what you can do, [and] convince the recruiter that you could do the job… A lot of employers have paranoia that you can't hire a person with a disability because if it turns out that they can't do the job, they can't fire them."

A number of participants, especially those with mental illness, discussed a reluctance to disclose their disabilities to employers and potential employers because of concerns regarding employer reaction, fears about being treated differently by co-workers, and consequences for employment.

"Half the time, to be honest, I don't want to even disclose my disability when I go for a job because I feel that can work against me so many times."
"I don't like to tell them that I have a mental illness because -- it's just that people don't treat you right."
"One thing about my disability is that it's not really apparent.…My employer doesn't know I'm disabled and I don't want him to know. See, my illness doesn't prevent me from doing my job. I take medication [so] there's no symptoms…I do my job fine and I don't want them to think I'm disabled because they'll think that I need help."
"My supervisor and my co-workers kind of know [about my disability], but I'm not sure how supportive the entire culture would be. It's not very diverse and I would sort of be breaking new ground in terms of that, and I feel threatened by that."

Other participants reported experiencing workplace discrimination, including termination, and other difficulties after disclosing their disabilities. For example, one woman said she disclosed her disability, in confidence, to her supervisor, who violated her trust by sharing the information with co-workers.

Others said that lack of understanding on the part of employers, and potential employers, had led to lost promotions and lost employment opportunities. One hearing-impaired participant said that she had tried repeatedly to work as a paralegal, but that no company was willing to risk taking her on because of her disability. She said that she could not find a good job in her field because people will not hire her because of her disability. As she put it, "They won't say it to your face, but you can tell." She said that it was the attitudes of employers that hurt people with disabilities most: "Attitudinal barriers are the biggest deterrent to getting work."

One hearing-impaired participant said she believes she has been passed over for promotion due to her disability, while co-workers have been advanced. A participant with multiple sclerosis reported being passed over for promotion more than once.

Others said:

"When I started falling, I told my immediate supervisor and my superintendent about my MS. I had not disclosed that [before]…Now I have parents taking kids out of my class because they know. It doesn't make a difference whether it's intentional or not."
"I never check that on the application when it says, ‘Do you have a motor or sensory disability, or mental disability?' I never check it, because I'm afraid that they will discriminate against me."
"I did postpone starting the medication just because I was fairly new at the job [and did not want to disclose my disability by applying for health insurance coverage]. Now I feel more secure being in my position so I felt that I could start that treatment."

A number of participants, particularly those with mental impairments, said they struggled at work without needed accommodations because they feared revealing the nature of their impairments:

"When you have a mental illness, I think flexible working arrangements will help you more. For me, I have to see my psychiatrist once a month so that I can stay on my meds, and it's kind of hard right now, because my new employer doesn't know about [my] mental illness and I don't think he would understand if I every month had to go out [for] doctor's appointments."

Among those who had disclosed their impairments, the most satisfied were those whose employers promised, and maintained, confidentiality:

"[When I started working for the county,]…they were never to disclose the disability. [That's important because] I needed to be protected by the employer and the management in order to feel free…They told me, ‘This is between you and me. You don't tell anybody about this. You don't need to tell anybody about this. If anybody asks us, it's none of their business.' What they did is they maintained [file information on my disability] separately so that it wasn't accessible to other people."

Participants with hidden disabilities talked about the difficulties they encountered because even after disclosure, some employers, co-workers, or others did not believe they had disabilities:

"They don't always know how I'm feeling and I may look fine but I might be having a hard time. But I let people know that I do have a disability. It's hard because they really don't believe it."
"The other people that worked there were kind of resentful that I was getting the special accommodations…I just think that they think I'm spoiled or something. It's not necessarily my supervisors that are the problem, it's the co-workers. I don't necessarily look like I'm disabled. So if I ask for something and everybody jumps to get it then they think that's a problem."

One participant with multiple sclerosis said that living with a non-apparent disability is both harder and easier than living with an apparent disability. She said that she must spend time explaining the nature of her disability to others because people do not usually have such knowledge. At the same time, she said that she can be treated with a degree of normalcy that people with apparent disabilities do not typically experience.

Individual Motivation

One factor apparent throughout all of the focus groups and across all disabilities was the importance of both purpose and determination in contributing to successful employment outcomes among participants. Many participants made explicit references to the value of being motivated and resourceful, both to secure benefits and later to secure employment.¹²

Numerous participants described the challenge in learning the complex set of benefits available to adults with disabilities. For many, success in navigating this structure was related to desire:

"I just started making phone calls that would lead to another phone call and another. Coming from a small city there's just not the resources and you don't hear about them. I think what drove me was that I couldn't pay $500 per month [for medications], so I was going to find different options."
"You do what you've got to do…You know how to be creative. Whereas somebody else may look at what the procedure is, you're looking more at, ‘How can we make this happen?'…It's just a matter of at some point you have to kind of take responsibility and just kind of go after it…I'm a survivor at heart. I think that that's a good trait to some extent because I've always done what I've had to do to get my basic needs met."
"I was depending on public transportation, which we all know is the worst, especially if you're a wheelchair user. I would go to school. It started at nine o'clock, [so] I would leave home at seven o'clock in the morning, get passed up by several busses; [the driver would say,] ‘Sorry, buddy, my lift doesn't work'…I got to the point where I was so damn frustrated I [decided] to try to get my own car. So I started hustling. I was going to get a car; I was determined. Once again, my determination [paid off, and] my financial aid money backed my loans and I had a car."

Another said that understanding his strengths and limitations within the labor market motivated him to develop more marketable skills:

"I went with most of my buddies, they were transitioning from school into jobs which I really knew I couldn't have. Be realistic, certain jobs you might as well scratch off your list. That alone just gave me the motivation to start seeking adventures. In other words, start researching…what worked for me. I went a year to vocational school, mostly in clerical, computer classes. Crappy skills which probably six months after I got the certificate were [obsolete] in the real world. You couldn't challenge [yourself] with those skills. So I went back to school. I went to college and started as a full-time student."

Numerous others described the importance of self-reliance in seeking employment:

"I had lots of off-and-on types of jobs. I had jobs through the community college, looked into the Disabled Student Services…I remember going to the employment office when I needed to find work, and [it was,] ‘Go to the Department of Rehab, go to the Department of Rehab, go to the Department of Rehab.' I'm like, ‘I can go anywhere. I don't have to go just to the Department of Rehab."
"Everywhere I went, everywhere, I just kept asking and looking for work."
"My first job, I applied at a heating and cooling company, and I did that on my own."
"I was very aggressive and persistent all the time…"
"I wouldn't have gotten any job I've ever had without contacts. It's one of those elemental things they always tell sighted people: It's not what you know, it's who you know. But it's really true. One of the best job seeking advice things I ever saw in a book was sit down and write down the name of every person you've ever met, every person you know, no matter how inconceivable, and just imagine yourself how could this person possibly help me or what does this person do that they could possibly introduce me to. It sounds really cold-blooded but it's actually -- a lot of people really want to be helpful to other people if you can just tell them how."

Participants also described the importance of self-reliance in maintaining and advancing in employment:

"I started my job in '97, and I probably lasted longer on this job than most of my buddies had on one job but then again, it's just something I have inside of me. It's not just like I could quit this job and get another job tomorrow. It's not that easy. There's a lot of challenges you've got to go through but I'm willing to take the challenges but one day at a time, too."
"I saved up some SSI money and bought me a truck, and I had my own business. A recycling business, and I went around with my pick-up truck and picked up washing machines, stoves, ovens, water heaters…I'd tear them apart and get all the copper and aluminum and I'd take it to the junk yard and sell it, and they would pay me for that."
"[VR provided me with] training into a job but I had possessed the skills as an advocate myself. For [my current job], I did my own job development."
An individual who acquired a disability as the result of a car accident said: "When I left [the hospital], when I got back into the real world, so to say, now it was different, definitely different. But there was a motivation that's always been in me… I refuse to quit. I'm always on the go. I carry my regular 40-hour job, I have an Internet business now. I'm a wheelchair referee for able-bodied basketball with the LA high schools, and I also play wheelchair basketball. My belief is if I can't be happy at what I'm doing then I won't do it. I'll change jobs and right now I have a great job."

For some, the desire to be independent was a key motivating factor:

"I just took it upon myself. I knew I had to do better than what I was doing living off the assistance from the state, I had to do better for my son. And I didn't know of any other programs. I took it upon myself and did it."
"Independence, I think, is the most important factor to me. I don't really want to have to depend on anybody."
"That is why I went to work, I wanted to be able to make it on my own somewhere."

One participant described how difficult it can be to face a disability every day:

"I have to look beyond [all my past pain] and that's where I got my strength from today to get beyond that, to break it off. What stays with me inside is today. It was hard for me to get through it, I was just determined…I want to go so far. [But] it's still with me. It's not noticeable but it's still with me. It hurts me inside because they say, ‘Oh, you're not disabled,' because…it works on the mind and…you feel ‘less than' and you feel ‘left by' and that causes a little problem…I'm beginning to wonder what disability actually means. How many categories before you're disabled?"

Participants also described the need to assert themselves in receiving needed accommodations at work:

"I wanted to…get into the high tech part of [computers] and I could not find any college that would put in the [accessible] computers and teach [the accessible] software [so] I could take the class. I approached the Braille Institute to tour training centers, and attended a seminar where they had the vice president of EarthLink's Customer Service come in. And at that time they were hiring. They accommodated me by giving me a workstation and, of course, training, office accommodations and other things, purchasing, of course, software."
"I had an issue with my previous boss where he actually called me into his office and said, ‘I'm becoming very concerned about your many absences.' And, I looked straight at him and said, ‘All of my absences are just for a few hours every couple of weeks or so and they're all for medical appointments. I have no choice but to go to my doctor.'"
"Everyone here I think would acknowledge that having good adaptive technology is important for acquiring the information you need for being able to do the logistical, mundane part of your job but we live in a pretty progressive world and mostly some of that's going to come along. I think the things that are really fundamental are the more intangibles: the belief that you're capable; the belief that you can fit in to your culture but at the same time that you take a measure of comfort and pride in who you are; the ability to say what you want; the ability to ask for what you need; and the ability to indicate what you don't need; the ability to be organized is probably something that blind people need to be more effective at. So I think advocacy, organization, and good training skills are those intangibles. Yeah, we all want to have access to graphics that we may not enjoy but mostly if you have the aptitude and the creativity and the self-initiative to live interactively, you can figure out the logistical challenges of obtaining access to something."

As described earlier, a number of participants said that experiences early in life motivated them to succeed. In particular, some were intent on proving wrong those who held low expectations for them:

"[My parents] were in a lot of denial. They were supportive [and] they would say, ‘You know what you can do,' [but] deep inside I felt the doubts and everything. [They were just saying what they felt they should be saying]. I just felt like they're full of it…but that just gave me more motivation. I'm going to prove them wrong, and to this date, I have."
"My parents…grew up in a time when blind people weren't expected to do much and their expectations were consistent with the society that [they] mirrored. When I was young, I went to public school when my parents were alive. When they died, and we were sent to my grandparents, they sent me away to the school for blind and they didn't believe me when I told them that I could go to public school. Now, in retrospect, there may have been some advantages to my going to the School for the Blind -- my getting away from that environment.…I said, ‘Grandmother, one day I'll grow up and become successful and affluent,' and she said, ‘No, you just need to work on maybe becoming a country preacher or maybe doing some sort of production.' So it was hard emotionally to understand that the expectation was low. When we lived on a farm, my sister would be required to get up with the break of dawn and join them in the field and I can't tell you how I yearned to go out and do it too, not because I thought it would be especially pleasurable but because everyone else was doing it and it created quite a dynamic between my sibling and I. She thought that I was lucky and I thought that I was very unlucky. And I couldn't convey to someone who was two years my junior that I didn't feel believed in."
"It seemed to me that just by getting a job, by getting off of welfare, by moving forward I was defying the odds, defying what was expected of me."
"I always had the attitude, don't tell me I can't do it, I'll prove you wrong."
"Adversity has made me strong."

Several participants said that non-limiting self-perceptions had been important elements in their success:

"I still don't consider myself disabled, I just do it differently."
"I never felt different, I just sit down [instead of standing]."

Other Supports

The supports discussed above are among those most frequently mentioned by focus group participants. Other additional supports were discussed to varying degrees. While not as widely used, these supports provided critical help to a number of participants. In some cases, the supports are most relevant to individuals with particular impairments.

a. Personal Assistance Services (PAS)

Few participants used PAS, but those who did were generally quite positive about them. One participant said that her assistant serves as her reader at work, which has allowed her to keep her job. Another participant uses a personal assistant both on and off the job, because she requires constant assistance:

"The personal assistant, the driver [are important supports]. For me it's really having somebody with me…I do have to always have someone with me. A driver, somebody to help with chores. Because I can't sweep, vacuum, and mop. Stuff like that I can't do…somebody is there in the morning and in the evening."

Several individuals struggled with the idea of using PAS, with one person saying:

"My social worker kept saying that I should be using an aide, but I just couldn't get used to the thought of a stranger touching me."

Another person, however, credited PAS with helping her regain a sense of independence:

"I felt very confined to my house until I started using an aide."

Among those who received PAS at home, the level of support needed varied with the severity of the individual's condition. One participant mentioned that the level of assistance could even vary greatly on a daily basis.

"[My assistant provides] help with my cooking, doing my shopping, helping me get ready sometimes. A lot of it hinges on what my Meniere's Disease is doing in my right ear. If it's really active then I employ my IHSS [In-Home Support Services] worker a lot more. She helps me do my laundry sometimes. She helps go to medical appointments to my various doctors. She generally provides support both homemaking, emotional, and medical support, helping me to walk around because, for example, when I've got bad Meniere's, then I can't even figure out if the ceiling is the floor."

Some individuals require assistance with housework only.

"I live by [myself], and I have a person who [comes to my house] every other Friday to [help with housework] and with that stuff that I can't reach. I'm living by myself in my own apartment. I can do everything [for the most part] by myself with family and friends and co-workers."

Others, however, need more extensive care, such as caregivers and personal attendants. A participant who was in a nursing home said he had a personal attendant for three years following his release from the home.

"I have a caregiver that comes in the morning and in the evening."

A number of participants commented that their eligibility for PAS was tied to SSI eligibility, which a number of participants lost sometime after becoming employed. These participants must now pay for their PAS out-of-pocket, and they noted the difficulty of trying to do so:

"The money I put out in expenses on [PA] services…it adds up. It's hard to have an equivalent quality of life as somebody making the same salary. [No,] it's impossible."
"[I] have to pay for my helper myself so I have to pay so much money [just to work that I have to go out] and then try to get a high-paying job."

Individuals who needed PAS in childhood typically did not receive formal services, but instead received care from family members:

"It was all supplied by the family."
"My mom, my grandmother, my aunt, they were all there to help."

b. Housing

Housing supports were identified by several participants. Many connected access to housing to success in competitive employment. According to one participant:

"You need a place to start from. You know, you can't hold down a job unless you have a home."

Many participants also equated access to non-institutional and non-shared housing with independence. One participant said that she lived with her parents for a while, which was a "horrible experience." Two Seattle/Tacoma participants said that having access to housing subsidies that enable them to live alone has increased their sense of independence. Having both a place to live, and having this sense of independence, agreed many participants, was linked to gaining a foothold in employment.

In a number of cases, participants credited both Section 8 and supported housing programs with assisting them with their housing needs:

"I've been out of the state mental institution since 1986. I'm in supportive housing. I have my own apartment."
"I do have Section 8. I signed up for [it] back in the 80's. I got it after eight years, I was living with my mother until then."
"My apartment complex is through Passport for Learning. It is vendorized through the Regional Center. I have been there for over one year. I like it a lot. I live by myself."

Two participants described becoming homeowners through special housing programs. One bought a home through the Federal Housing Authority. The other built her own home with the assistance of a community non-profit organization. She described the impact this success had on her self-confidence, such that she felt capable of returning to college to complete her education:

"I was in a special program where I actually built my own home. It's called Northwest Housing Development and it used to be called House My People. And I have an adorable little house that I built from scratch from the foundation up to the roof. But what it is is ten families work together and you all help each other build a home. You can get in with no down payment, but you have to commit to 30 hours a week labor building this home. It took me nine months to do it. But other people are able to help you get those hours in, like my mom would help, and my church members would help for me because I was only working part-time and couldn't have done it. I was afraid to do it honestly, I almost backed off because I hadn't been in the hospital for awhile and I was afraid the stress of it would make me sick. But it was the most rewarding thing I've ever done and I thought, ‘Wow, I built the house, now I can go back to school and get my education.' So that was a big step for me."

Not all participants, however, were positive about the Section 8 subsidized housing program. Even if eligible for Section 8 housing, participants expressed difficulty in obtaining the certificate. Then, some participants said, finding housing was a further challenge. Two people said they had recently received a Section 8 certificate, but had not yet found housing. Another participant expressed great surprise that anyone ever moved off the waiting list and obtained a Section 8 certificate.

Two participants favorably described independent living skills training they had received through a Community Living Program:

"When I was in Los Angeles I went to CLP, a Community Living Program, and I graduated from that place. They taught me how to clean house. They taught me how to cook. And, they taught me how to manage my money…You have to come there every day for three months, and then they give you a certificate, and you have a graduation party. They help you find a place to live. And they teach you how to cook, and how to clean house."
"[CLP can] help you get Section 8, too…You come in [and] they teach you how to cook and clean house, and how to manage your money, and you have to cook a meal for the whole group to show that you know how to cook. They have you cook lunch by yourself."
"I had an independent living person coming into the home. I didn't go to their center. They came to me and did personalized training, household duties, budgeting, and life skills. The focus was not [on getting] a job but, yeah, it was helpful. It did give me the sense of discipline that got me to the point where I actually wrote a resume and got the job that I got."

c. Transportation

Many participants have access to public transportation only, and could not get to work otherwise. Among those who use public transportation, a number reported use of subsidized fare and access to free van service. Among the participants who used private transportation, a number of methods were employed to gain access. For instance, VR paid for modifications for several participants' vehicles, and in many cases participants said that spouses, other family members, and friends regularly included them as passengers in private vehicles. Another person carpools with co-workers, and one person reported having been provided transportation by her job coach.

A common theme among focus groups regarding transportation was the need for access to reliable transportation in order to maintain employment. Some participants were frustrated with the intersection of their transportation needs, and the provisions or restrictions associated with public programs. For example, one participant, who lives in the Seattle suburbs where there is no bus service or other public transportation, talked about the difficulty of securing a reliable car while receiving Medicaid or SSI benefits.

"How can you get to work if you don't have transportation? And before DSH changed it, you could only have a car worth $1,000. Excuse me, what kind of car is that? One that's going to be in the shop every other month. And now they finally raised it to, I think, $4,500 and I had to lie. I financed a 1992 Ford Taurus that was worth about $6,500 and they forced me to lie about the value of it. But I live out in Ordelon and there isn't even any bus service out there. We don't have any."
"[Although it was a good experience going to VR, their help] with transportation didn't really work out.…The access bus [they arranged] would come, like, two days later."

Among those with access to public transportation, many expressed satisfaction with the available subsidy programs. One participant, who can no longer drive due to progressive blindness, says she receives a discounted bus pass worth about $600 a year, which she credits with enabling her to continue to work. Other participants said:

"I have half fare. I got that through my doctor many years ago. It's 24 hours a day, seven days a week. I don't even show it to the bus driver. It is a dollar on my bus, [but] I just put in 50 cents, he don't even say a word to me and I don't show him nothing."
"I get bus passes from City-Ride, that's in LA. They send them to me every month. I do not have to pay. I use them to get my bus stickers so I can get to work."

Public transportation is extremely important to people with disabilities living in Los Angeles County. Many participants regularly use ACCESS Services, Los Angeles County's paratransit system for people with disabilities. One person said that, as a support for maintaining his current employment, ACCESS Services is "an obvious one," and that he logs about 100 miles a week on ACCESS.

Nonetheless, participants reported problems with the system. One person complained about bus drivers' limited training about accessibility for people with disabilities. Another said he had found it difficult to get information about how to use the bus service, and another was not satisfied with the bus schedules:

"[It's] not reliable. You're never on time. You're always too early or a little late."

Other participants discussed additional difficulties with the system:

"Sometimes I was waiting for half an hour to get to my class, and then the lift's not working. I waited for the next one. I waited for the next. Now it's half an hour, [and I've] already missed the class. I had to change all my schedule because they couldn't accommodate me so I could be at class at nine. So I had to change everything, take a class at 11 o'clock, so they could pick me up at nine, so I can be at school at ten, early, then I can eat and study. I had to schedule way early so I could be there on time for class. The good thing was [that] people are understanding."
"The person that you're interviewing with, they come at a set time and you can't be there, or they have to leave because their ride's already [there]. Sometimes they're all, ‘We'll take care of you in five minutes.' I would have to reschedule and do things at a better time. It makes it really difficult if you don't have transportation."
"I had to leave about 5:30 in the morning just to get to work by 8:30. Getting back and forth was an issue."

A few participants have and use their own vehicles. One participant received funding from VR for driving lessons and modifications to his car. Another participant says that her insurance company buys her a new vehicle about every five years. Another shares a vehicle that was purchased by his church with another individual. According to one participant:

"I could not do my job if I did not have a car. Physically it would not even happen, I would not be working. I am just lucky enough that my husband has a good enough job to pay for one, ‘cause I wouldn't be able to work."

A number of participants drive their own cars, and many have adaptive equipment on board. Some had paid for their adaptive equipment themselves or with the assistance of family members, and others had received funding from VR to make the modifications. Three participants said that they had received rebates from a car manufacturer after fitting their new cars with adaptive equipment. They had learned about the money-back option offered by most automobile manufacturers through word-of-mouth and through advertisements in disability magazines.

Many participants said that they wished to be able to drive themselves to gain a greater sense of independence, but this was difficult to accomplish for some because needed adaptive equipment was expensive and sometimes difficult to find.

One woman who wants to be able to drive herself described the challenges involved.

"I haven't been able to find the right resources to look into about the gears for a car for myself. That's the one thing I do want, is my independence to drive."

Another participant described changes he made in his driving behavior:

"I don't have car modifications, I never have.…Basically, I made my own modifications with learning to use my left foot for the brake, and the right foot for the accelerator, and so in any kind of car I get, I always have to make sure that pedals are reachable for me."

Participants discussed the issues and their ways of dealing with transportation. Transportation was paramount for access to education and employment. Multiple participants discussed their need for transportation when seeking employment. VR was able to help one participant "with a stipend" for the purpose of obtaining transportation.

Participants discussed other transportation options available to them also. One characterized his company's rideshare program, which apparently is available to all employees, as an accommodation:

"We have a rideshare program that my employer has set up [in which] they will compensate you [if] you carpool [or] walk, whichever way you get to work besides driving…They give [someone like me who,] of course, can't drive, accommodations in that sense."

d. Informal Supports from Family and Friends

Many participants related stories and events illustrating the substantial support provided by family and friends. Among the key functions performed by family and friends was the extent to which they were able to help participants accept their disabilities, encourage work efforts, and reinforce a positive self-image.

"I had a friend who really believed I could do anything. My friend's support really convinced me that I could just go out and get a job. I actually applied for two jobs -- driving a bus and bank teller, total opposites. I actually got both and had to decide. So she got me really psyched at that point."
"In terms of informal support, I guess I have other friends with disabilities, I mean, friends who have had the same disability and they've been injured for longer than I have. I kind of use them for…peer support."
"It was funny, 'cause I had a girlfriend -- a co-worker, actually -- and just recently, like you said, they forget, and we were talking on the phone, and she says, ‘Are you sitting down?' [laughter] And I said, ‘Do you realize what you just said to me?' She said, ‘Oh, oh, oh, I'm sorry.' And so when I got to work, I really thanked her. I said, ‘That was really a compliment. Because that shows you don't see the chair. You see me.'"
"[I have] friends who help me to get to and from a lot of places around the state [that] you can't get to with public transportation. That is just invaluable…Without that kind of support, I would not be able to do significant parts of my job."
"They are proud [when] I tell them I make good money…and they are happy [about] where I live."
"[It's helped me] just knowing that my family supported me. Just being really watched over, you know, just, it helps being involved."

Several participants said their families and friends had provided considerable support in maintaining their current jobs, including providing help with transportation, shopping, food preparation and offering emotional support:

"[I'm close to my family]. They help me with things like grocery shopping, stuff like that. Whenever I need a ride sometimes, they help me with that, too."
"I think my mom should be paid by the government because she is such a big help to me. In the mornings she cuts up fruit for me, vegetables to eat and she's just like really caring and emotionally, I can talk to her. She accommodates me for all my drowsiness and everything."
"My fiancé, I think, has been a very large emotional support. Every time I come up against a wall, if I have a hard time with Social Security talking to the people, [he helps me. Like,] I went through a change in rehab counselor and it was difficult getting used to the new counselor because she does things totally differently. He always finds a way to get me through it, anything, no matter what it is."
"You socialize with each other a lot. You basically have your mother, your stepfather, and then you have people around your age, brothers and sisters and cousins."
"I was always encouraged to try and do my best. My dad encouraged me to get into computers and engineering."
"Probably what really enabled me to go back to work was my husband when I got married -- just his encouragement and belief in me."
"When I entered the hospital, it was so many people that just cared about me and wanted me to get out of the hospital. They would go shopping for me, bring me home, cook food, braid my hair. It's so many people that can give you love, they don't have to but some people do have a heart."
"What helped me continue to go on, even though I knew I was hurting inside was my peer group. Other students saying, ‘Come on…you're doing good."
"In terms of informal support, I guess I have other friends with disabilities, I mean, friends who have had the same disability and they've been injured for longer than I have. I kind of use them for…peer support."
"[I have] friends who help me to get to and from a lot of places around the state [that] you can't get to with public transportation. That is just invaluable…Without that kind of support, I would not be able to do significant parts of my job."

A female participant who started to go blind progressively said that she had just recently moved to a new place to live. While it is farther from her work, she said that her new place is much closer to her friends. These friends act as an important safety net for her and they help her with added mobility and freedom. Another female participant with multiple sclerosis said that she has wonderful friends that are very supportive of her. She said that they do things like drive her around and cook for her. She also said that they keep an eye out for her in looking for jobs or services she can use.

According to some participants, friends provided invaluable help while they attended schools without adequate accommodations.

"There were no ramps at all, so I waited for four years to [have] a ramp. My friends used to come lift me up for my classes all the time, for all four years. But, now everything is accessible. [My friends would say,] ‘Are you ready?' And I'd go, ‘Yes I am, let's go.' On the way down, I came by myself. Yeah, that's the thing, you know, my friends helped me a lot."
"I was looked at as being positive with other classmates because here I am at a normal school. In high school I got my friends together. I told them, ‘I want all you guy's class schedules, because you're going to help me help someone who can't help themselves really good to get to class quicker…We're going to help push people in wheelchairs or help the ones that have no lockers, carry their books, and get them to class too. If we're on our way, and you pass someone that needs help, is it right for you to pass them up? There's going to be a day that you're going to need their help, and they're going to help you.' [And my friends] go, ‘You know what? You're right, here's our schedules.' [My friends and I] did that, [and] I found that it lasted my whole four years, plus another four."

Other participants simply spoke about the value of being able to speak with and share their experiences with friends:

"Talking to one another, yeah, that's the most important."
"When I need to talk and get out some of my thoughts I call two friends on the phone."
"[I call] my friends when I get home…Just having contact with people [is good]."

Some participants continued to have strong supports from their friends while others experienced their friendships drifting apart:

"We were going into our senior year in high school. [My friends would] sneak a bottle or two into the hospital and get me drunk once in a while. [laughter] The hospital didn't frown on it that much, to be honest with you. [Later,] I was always out with [them]. By the time I got [a van, I could just] get in and take them places. So it didn't stop me [from going out]."
"My friends went from a whole bunch to just two or three real friends…I saw my friends shying away from me and I kind of shied away from them…Getting around was kind of a problem but at that same time, I actually wound up dating a girl and becoming friends with her friends. She was actually my therapist here…Right after that is when I knew I had to get my own car because it was difficult to get around. Like I said, a couple of friends were core friends that would come and take me here and there, but it was different."

Many participants spoke of the importance of friends not only as sources of personal support, but often as resources for employment. Two participants reported they found first jobs while in high school through referrals from friends. Another focus group member had a friend who worked for a state agency who checked the state job listings and found a job for her.

Others said:

"Fortunately, I've had a lot of friends who have pointed me to jobs where I could work."
"I would never have gotten the job if it wasn't for a friend of a friend. He went to apply for the job, he had another offer he was more interested in. He took that one. The other potential employer said well, who else can you recommend? There I was."
"I found most of what I found by…a friend saying by the way you should check this out and I followed all the leads as they came apparent."

Some participants reported that friends and peers whom they met in their treatment programs provided support and pressure to seek help or change medication. This was particularly important when participants had difficulty perceiving their own needs and level of disability.

"I had this one girlfriend who [is on medication herself] and she noticed that I was getting really critical and irritable, so she suggested that I go to this psychiatrist that she was going to."
"I'd be going to the mental clinic and we would discuss our illnesses, and I made some friends."

e. Plans to Achieve Self Sufficiency (PASS)

Only three participants in Newark reported using PASS (no Seattle/Tacoma participants reported use), and each was positive about the program. One participant used the program to buy a van for his work, and another used PASS to save money to start a computer business. Another participant, who eventually used PASS, said that taking advantage of the program was difficult because of a lack of knowledge of the program by SSA staff:

"[No one] in the office knew about it," he said. "There was only one guy in that office I went to. It had 75 people and it was a huge place and [you] could only see this one guy because he was the only [one who knew] how to do the thing."

Several participants in Los Angeles were familiar with PASS, and discussed how they could be used to purchase assistive technology. However, they said that only a small number of VR counselors -- and an even smaller number of Social Security counselors -- were familiar with the program or trained in how to write a PASS plan. As one participant noted, "The system is so complex that a lot of folks who work in the system don't even know all of the benefits and the programs that are available that they could be telling people about if they only knew that their agency had the program."

Another Los Angeles participant said:

"The Independent Living Resource Center [had] helped me write one up in Ventura. They were turned down. And when I got this job I'm at now, when I went to Social Security here in Long Beach, and asked the worker to give me information on PASS plans, she flat refused. She straight up told me, ‘I'm not going to give you that information,' quote, unquote. And I didn't pursue it any further. I would like to have written a PASS plan eventually, my goal would be self-employment. [But] I don't know of anybody that's ever been approved for one."

Los Angeles participants who had written PASS plans reported that the plans were very helpful in providing assistance during the transition from school to work. In some cases, SSA or Southern California Rehabilitation Services had assisted individuals with writing their plans. One participant wrote her own PASS plan for computer equipment. Another was able to purchase a van for work through his plan. Participants said PASS was a useful way to set aside work-related expenses and that it served as an incentive to transition into work. One participant described her experiences with PASS when she first began working:

"The PASS plan is a plan through Social Security where they allow you to set aside money in a separate account so it doesn't affect the $2,000 limit that is imposed on you if you're receiving SSI benefits. The only way it really helped me was when I first started working, and I was only working part-time. I was able to set aside money for work-related [expenses]. At the time I was working as a massage therapist and I was able to write a PASS plan to get some of the equipment I needed."

Another participant spoke about the value of PASS when he was attending college.

"Through Social Security, SSI, they have something called PASS plan, Plan to Achieve Self-Support. I had to come up with a plan to go to college, to take certain courses, to get a certain certificate or degree, and I had to put it in writing. My dad helped me a lot. I did that and [DR] agreed to pay a certain amount a month in addition to what I was getting from SSI to pay for school. That's the only thing they paid for, really, was the books which were pretty expensive."

f. State Workforce Development Systems

Among participants who used State Workforce Development Systems, those with the fewest skills, and seeking entry-level positions, appeared to be most satisfied with the service. Those who sought assistance with more specialized work were less satisfied.

One participant used the state employment services department when looking for her first job, but was disappointed with the experience:

"Whenever I've talked to job developers in the past, what I've heard is that, regardless of my degree, regardless of my training, or the awards I've received, or all the things I've done, what they could help me do is find a $7-an-hour job. If I want that, they'll help me. But if I'm looking for a professional position, then they can't help me, and it's ‘be off with you.'"

Another said:

"I hooked up with the Department of Labor program for people with disabilities in New York City. They were not helpful at all [beyond my] getting evaluated, [and] my husband's insurance actually paid for [that]…Basically what they had was low, meager jobs to offer, very low educated jobs. And that wasn't the stuff that I was looking for…They didn't have anything [for someone with] a college degree in psychology…So they really didn't help. I mean, they did [provide] a computer to do my resume, or fax machine, but I had already secured those things myself."

g. Disability Advocacy Organizations

Several participants reported using different disability advocacy organizations for assistance with their ongoing needs. In some cases, disability advocacy organizations helped provide funding for assistive technologies, offered training, or helped participants fight for needed accommodations. For example:

"[From the] Braille Institute, I get talking books and Braille books for reading and I guess [it is practically] all of what I use now."
"And I…went to [the] United Cerebral Palsy [day training program]. I was the receptionist there and learned how to cook, [and went to] training camp there also."
"Jespy House [a facility for developmentally disabled young adults] got me this new job, I work for [a wholesale company], which is a very exciting job. I like the people a lot and things like that."
"Jespy House took me on a job interview…And I got a job. [They taught me] how to be on time, how to get there -- they travel-trained me. I [also] had a job coach."
"[Jewish Vocational Services] taught me how to break away from my mother and how to move out on my own and move down here and how to get along with my mother and speak up for myself and things like that."
"[Organizations] like Community Access do really help their members with advocacy, [with the] one-on-one support that really counts. [As an] employee of one of these [organizations], I find that employment in a non-profit organization is more supportive, than [in a governmental] organization."

One participant described the activities of the Tacoma Area Coalition of Individuals with Disabilities (TACID) in providing information about other services available in the community, and providing training to employers and co-workers about working alongside a person with a disability. In this case, the participant's co-workers had attended a workshop at TACID called "Deaf and Hearing in the Workplace: Working Together:"

"My whole life has changed since that workshop in my office. [My co-workers] had no idea what they were doing. That was why I made the comment about education of co-workers. They had no idea that they were leaving me out. They had no idea I'm sitting in this office and nobody would talk to me. And they had no idea that they were doing that until they saw the hands on demonstration at that workshop. Now all of a sudden after 3 years of isolation, I'm part of the group again."

Several participants described participation in blind organizations (particularly American Council of the Blind and National Federation of the Blind) as key to developing high self-esteem and becoming active in civil rights efforts to change attitudes about blindness as well as to expand opportunities for people who are blind. One participant, whose family had particularly negative perceptions of blindness and low expectations about his future, found great support in learning about a blind consumer organization when he was thirteen.

One participant said he received support and encouragement from a mental health advocacy group:

"I go to different conferences all over the states for National Alliance for the Mentally Ill. I see a lot of people that are having serious mental illness, and they're living, just doing presentations and stuff and that's a real encouragement."

Another participant described training services provided by a local disability advocacy organization:

"[A local] disability organization has gone out and trained bus drivers and people with disabilities on how to use the [accessible buses, and] developed systems for people who can't communicate. People who are deaf and blind have cards that they can show the bus driver, various things like that."

h. Organized Sports

Participants agreed that participation in sports provides them with friendships, a sense of family, and a peer support group for people with similar disabilities who face many of the same issues. They also agreed that participation in team sports builds skills that carry over into their professional lives as members of a company team. Comments about the support they receive from their participation in organized sports included:

"Yeah, that's how we all met, playing sports. We all put our ideas together, and look what it's turned into. [Sports] motivates you. It's total motivation."
"You want to hang out with that positive energy, you don't want to be around someone who's negative…The thing is, you want to get to that level, man, you want to show up, you want to practice, you want to play hard, cause you want to be able to compete. And seeing guys that are in chairs, in your position and still able to excel at what they do, you want to get to that level too. You want to be in the play, you don't want to be left behind. So, that forces you to show up for practice, to give 100 percent, not lag, not call in sick, not flake out on the practicing and stuff like that. It makes you want to be there."
"The discipline, and showing up for training, [and] the feeling of camaraderie, getting together with your fellow wheelchair user buddies, [these are really important]."
"[It creates] teamwork, [and] just being around everybody who's in the same position, it's a good healing environment, [to be] in competition."

Another participant reported meeting his current co-workers and fellow sports team members while attending the Abilities Expo:

"Believe it or not, I didn't know anybody in a wheelchair for the first two years of being in a wheelchair. I remember rolling into this Expo and thinking, ‘My God, there's a ton of wheelchair people in here. These people have all gone through what I've gone through. I feel so bad for them.' But these people are just laughing, cracking up, doing different things. I'm thinking, ‘Man, I must be off my game or something ‘cause these guys are doing something different [from me].' That's when I met [another participant, who works at Xtreme]. After that he pretty much exposed me to everything, and it actually happened at the Expo."

One of the individuals with a visual impairment participated in team sports:

"I wasn't very good at it but I was in soccer, I did skiing with my family, friends of mine. What else did I do? I did baseball but I wasn't very good at baseball because you have to ‘lock in' -- my spatial visual abilities aren't very good, so it's not like I could lock onto the ball when it was thrown to me. Soccer is different [because the ball is larger and it's not as difficult."

Special Olympics was a significant source of support for a number of participants, who said that participation had contributed to an increased sense of self-worth and self-reliance:

"I went out for the Special Olympics through the occupational center and I came in, like, 4th place in the 50-yard dash. [I also did] some other activities like the softball throw and the standing broad jump, and I had a great time. I even pulled a muscle in my leg for the running one. But I enjoyed it very much."
"I was in Special Olympics, too. Especially up in Danville, I was in Special Olympics for about two or three months. That was very good because we did a lot of things. We did a lot of activities together and they got me through. They got me to actually go out and face somebody to get a job. That's how they helped me."

i. Role Models/Mentors

A number of participants mentioned the value of having role models and mentors available to provide advice during difficult periods. One participant told how the advice he received from a mentor had motivated him to work.

"When I got hurt, thank God, there was a guy that was hurt before me, he was [telling me] I was all right, [but] there's stuff to still be done, and it takes money. So now I gotta work harder, cause I want a lot of things. I gotta put in a [lot of time] to make a lot of money."

Another participant identified her boyfriend as a good role model for her when she was seeking employment.

"He went through a period where he didn't have a job, and he just went out there, and no matter what, he put applications in everywhere, just kept trying, he didn't give up. I saw his efforts, and I saw how he didn't give up, and he eventually landed a really good job. He got benefits and everything, and at first it was very hard, but he didn't give up even though nothing was coming through. He kept doing it and he didn't give up."

One participant said that he understood the importance of young people having a role model who understood and could relate to their experiences. He wished to give back to people with disabilities and contribute to the lives of young people:

"I get the importance of being a role model to young children and I do camp every year. I see the difference that it makes in their life and not only do I inspire them but they more than inspire me so it's like I'm getting back what I missed out on. It's pretty powerful and it's very important."

Others said:

"I lived in fear that I would die before I was 20 because I never saw a blind adult."
"I remember one time when I was a little kid, there was a deaf couple and they lived about a block away from our home and I saw them both walking down the street and they were talking to each other. ‘Look at that,' I said. Mom just grabbed me and took me away…A few years later, I saw them again. [They said,] ‘You used to live over here when you were a little boy.' [They] became my role models away from school. [My] parents went, ‘No, no, no,' but I did it."
"I went to [a] School for the Deaf…I had a lot of good, wonderful role models, a lot of deaf staff. I lived in a dorm. I had people in my classroom involved with different activities. I had a lot of exposure to deaf adults…When I went home for the weekend, I said, ‘Hey mom, dad, you know when I graduate from high school, I'm going to college.' I was eight years old and I already knew about it."
"I connected with deaf people, and they were good, they were working, they were responsible and I grew up with them."
"…I had a totally blind mobility instructor and I thought that was critical to my learning to travel because she served as a daily role model and really instilled confidence because I had confidence in her ability to travel. It kind of transferred to me, slowly. It took a long time but if I had had a sighted travel instructor, I think it would have been less effective because she could tell me her own war stories. We kind of experienced war stories together, hearing a train coming and not quite knowing where the train tracks were -- huddling together and hoping we weren't going to get hit. So I think that was real important."
"Having other blind people as mentors and that was really important to me when I was growing up. I remember being very young going to one of my first state conventions and, my gosh! There's actually blind people walking around and being lucid and all of that kind of good stuff. I think that's very, very important to have people that you can look up to."
"My mentor [hired] me. I needed one person who really believed in me. I worked for him after going to vocational rehabilitation and going to school. [At some] point, he looked at me and said, ‘Go back to nursing.' I was taking everybody's blood pressure in the office. I had always been a hospital nurse, but there weren't any openings in the hospital and that was like going from square 1 to square 100, so I went to a nursing home. There are many, many, many openings in a nursing home. They were desperate for help. They said, we'll hire you. But the hourly wage was much, much higher. So, even though I was scared to death with my first paycheck, I was able to put a down payment on a used car, and I'd been walking for five years. You don't know what an incentive that was. And the individual who told me to go back to nursing was there for me every afternoon. I'd go by the office and tell him how my day went, and he would listen to me and buy me a latte, make me feel important and kind of dusted the bruises off."

Another participant mentioned the value of public figures who serve as role models:

"Maya Angelou, Oprah Winfrey, there's a lot of people. And I could go on and on and on and on. It's just, I admire people, like the underdogs. I kind of like rooting for the underdogs, you know what I'm saying? The world thinks, ‘Well, we've kicked you down, you're going to stay down,' [and] you go, ‘No, you're not,' and you just keep rising to the occasion. 'Cause to me that's just survival, every day you have to get up and rise to the occasion."

j. Religious Community

Several participants gained a great deal of support from religious communities. Through one such community one participant said he gained access to a supported residence, a social network and volunteer work.

"I live in [something] like a compound, which is a couple of buildings that are run by a missionary group and they provide some supported living.…All of us are [people with disabilities]. The missionaries provide a lot of volunteer work but I also have people [come in to help] and then my partner helps me. So with trained friends and family and volunteers and [other] people, I get by."

Another participant counted individuals at her synagogue among her support network:

"I have lots of supports, like the people at my temple, they're very supportive. My rabbi is very supportive, plus I have several counselors. I have a psychologist I go to on a regular basis that helps me keep [in balance]. I have a special facilitator -- which is the other type of counselor that I go to -- that gives me emotional, spiritual support, so that I know where I'm going and [that] even though life gives me an obstacle, I know I have to overcome it and help other people overcome their challenges as well."

Two participants said their Bible study group provided important spiritual and emotional support. One of these individuals lives with members of his religious community and depends on them for material support as well. Another participant with severe hearing loss depends on networks with other deaf people through her synagogue:

"[I go to] Temple Bethel, for the deaf. I've been going for quite some time. I found that to be more comfortable [because] I actually understand where they're at in the prayer book. That's [also] where I do my networking in the deaf community and find out where I can get my stuff the cheapest."

Others said:

"I do get some emotional support from…the Mormons. They come to my job and they ask me to help package their cards sometimes. And sisters will come over and sometimes the brothers, [they're] called missionaries, and they give me a pat on the back and some emotional support; and ask me how I'm doing."
"I know that I do believe in God, and I know that's given me the strength to go on many times when I felt ready to quit. I think that the spiritual part of your life is very important in helping you heal."
"The women in my church…when I was hospitalized, they cared for my son. I also was in a special program where I actually built my own home, and my church members helped me with that."
"My church has helped me out several times…I moved up here from Texas about 13 years ago and the church I joined up here, they helped me out a lot. I wanted to go up and see my mom and I didn't have any money to go so they bought me a round-trip plane ticket…And they helped me get a car a lot cheaper than I could get on my own. A couple of the people in the church went in together and it was like three of us, 1/3 each, and helped me get this car."
"In the beginning, [I was helped by] food banks. My church was very helpful in either directing me to resources or giving me resources."

A participant with a cognitive disability stated that his church was a very helpful support for him. He said that he volunteers his time to the church and that this was a good way for him to feel like a part of the community.

A participant with epilepsy stated that he is in support groups that are sponsored by his church. He stated that this was a very important support because it helps him better deal with his disability and makes him feel better about himself. A participant who uses a wheelchair indicated that he received support from members of his church, but until recently, he could not attend the church, which was inaccessible:

"[The support was] a twin-edge. I mean, they were a support network…If you're a shut-in, they'll help you out. I only asked [them for] $60 in 1973, when I was getting ready to go to college. They got together and bought me my first power wheelchair…The people there were supportive, but I guess because of the times, [the 70s], disabled people weren't [really] helped…One of the problems is that my church is built on the side of a hill and [there are] three flights of stairs, [with] no real space for ramps. We worked [out] other ways of doing it in the last few years but, the thing back then wasn't, ‘How can we do it,' it was, ‘We'll minister to him in his house.' The talk was always, ‘We can put an elevator in the bell tower,' but [that cost] was way above their means and I never thought to look [for] other alternatives. Small church, small congregation, small funds."

One woman's church assisted her in paying the costs of graduate school.

"I had been active in my church on disability issues because I realized the church I was going to was very inaccessible and I had two choices: either quit or start working for accessibility. And eventually I designed, with the Archdiocese, the parish advocate training program and so I was working with the Archdiocese on that…So when I went to graduate school I asked them to help out with part of my scholarship and they did."

Another participant received counseling through a church agency:

"What helped for me was…when I got sick and I was in the hospital for awhile, my mom found through Lutheran Social Services a therapist who agreed to work with me. She only charged me $5 a week and I went to her for four years."

k. Other Organized Supports

Participants described having received a variety of supports from numerous community non-profit organizations, ranging from social service agencies to volunteer service organizations:

"I also have to plug the Young Men's Christian Association, YMCA has also been an avenue I could go to, I always knew I could stay somewhere, either in a shelter there or somewhere. They always had their doors open too."
"Group homes gave me encouragement. When I felt different [or] felt unable to do certain things that other people were doing cause I was in special ed classes and stuff like that. They supported me. They gave me encouragement, they told me I could do what everybody else was doing."
"There's a Woman's Job Training Center in News Brunswick [that] was kind of like the clique that moved me along…[The people at the Women's Assistance Center were] women who had been in marriages and now were the single breadwinner of the family and had no work history…It became clear to me that life history can be just as valuable as work history. And I saw how the counselors worked with everybody, including myself, to look at…what skills were they bringing with them, and they helped me look at myself in a different way."
"I went to the Passaic County Mental Health Association and they suggested this therapist. He is very qualified in dealing with all kinds of people, but particularly those who have problems with mental illness."
"I also have mental illness and I go to a drop-in center, which is right by [the] Coalition of Consumer Mental Health Organizations. And I find the support that I get from there to be very good. I go on their retreat every year, where I learn more and more about what's going on in the world [and about how I can] help people with all kinds of disabilities."
"For me there was a really great counselor in the hospital who knew that I didn't have medical and so she walked me through all the paperwork for every single service that was available to me."
"The Volunteer Chores Services, they actually have people that come out and help you too."
"The Christmas in April program [is] for those that are disabled or low-income… They'll come out and if you need help they get people together to come out and do all the maintenance on your home if you're disabled."

Several participants had participated in Boy Scouts and Brownies, through which they gained work experience and leadership skills.

Participants also spoke about numerous organizations and programs, such as those sponsored by the Urban League, Head Start, and others, to be significant supports in helping maintain their current employment:

"We have the Urban League of Hudson County. I would like to be a teacher one day and I have all the things here that help me…I have my certificate [as a childcare provider] from the Urban League…These little certificates, they may not be a teacher's degree, I may not have a Master's degree or anything like that right now, but this is just a stepping stone for me. I'm just moving my way up."
"Here in Essex County, they have a Wise Woman Center…displaced homemakers or women that are in need of vocational re-establishment. I went to a lot of courses there for nothing. [They also have classes] that help you internally, not necessarily educational things all the time. They had a course there for a few months that we went to every day. It was kind of like a women's empowerment class. I don't want to say [that it was a class] to become more aggressive, but that's kind of what it was."
"I did a lot of study skills and resumes with the Wise Women's Center. I've been with them since, I guess, maybe about '85, and they've been really wonderful. And I know I can go at any time, even though the staff has changed over the years. They have always been in my corner; I will say that."

Several participants were able to pay for medical and equipment expenses through donations and through community and workplace fundraisers:

"When I got out, the Elks in my community bought me my first wheelchair. They heard through the community that this little girl had this accident and everything, and they raised the money [for me]."
"The men at my father's job [Ford] were really good. They raised a lot of money for me."

Several participants said that the Lions Club and the Italian-American War Veterans donated Braille dictionaries and support for assistive technology.

A participant who had had a stroke said that she had received leg braces from the Shriners Hospital for Children.

One participant described a program that he gives to which helps those individuals with new spinal cord injuries who have no insurance and cannot afford durable medical equipment. For this participant, giving back to those less fortunate than him gives him a good feeling and a sense of supporting the community, and this provides him with a sense of accomplishment.

Blind participants spoke most often about the supports they received from community-based and consumer groups.

"The consumer civil rights organization that I'm active with [NFB] has created its own model of rehabilitation to train blind people how to function well in the world. They take anecdotal experiences like skydiving or mountain climbing and they incorporate it into also a fairly uniform curriculum of Braille and computer training and it's all underscored by a course in philosophy about blindness. So there are good organizational curriculums that exist that are designed to help rehabilitate people or to give the rehabilitation, if you want to use that term. Specifically, I would allude to the Colorado Center for the Blind, the Louisiana Center for the Blind, those are curriculums that I think stand out. I mean even among people who are not affiliated with my organization, people acknowledge pretty widely that they are programs that are distinguished in what they do."
"They're run by blind people who believe in us as blind people and impart that belief to their students. And I think that that's one theme that's running through here is the people have talked about the people who really affected them in their lives, those teachers had high expectations of their students and I think that's really important that blind people surround themselves with people who have high expectations of them from the get-go, from their childhood into adulthood. That's one benefit of belonging to a consumer organization is you are surrounded -- and most of us in this room belong to consumer organizations -- I think that's interesting too -- but they surround themselves with other blind people who are out in the world doing things and expect us, expect me, to be out in the world doing things as well. They also serve as a network and support of people who I can turn to for advice. But constantly surrounding yourself with people who expect something of you instead of the alternative, which is all to common, blind people are kind of out on their own, living with family who don't really think blind people can do anything, or surround themselves with friends who adopt the majoritarian attitude in this society, that blind people can't do anything. Surrounding yourself with high expectations is key."

Focus group members were enthusiastic about the assistance they had received from support groups made up of people with similar types of disabilities. They described both groups conducted in person, and those conducted via Internet chat rooms.

"You actually learn a lot from your support groups. People are going through the same thing as you and they might have crossed that same path. 'That happened to me and I did this.' 'You did what? What was that name again?' So that helps."
"My major source of support came from an Internet support group for hard of hearing and late deaf people who had gone through this transition. We work together to learn to advocate for ourselves. [I don't know what I'd do] if I didn't have all those people on the other side of my screen who know exactly what I've gone through, to come home and scream to through my keyboard. It's not just a place to outlet it, but together we brainstorm how to solve the problem. Somebody else has already been there. They'd say, 'I had a boss like that and this is what I did.' I depend on that and I have that contact daily."
"I think the support group, like you said, finding people that are like yourself. I think support groups are one of the best things because then you meet other people who have a disability. Then you realize that, yeah, it's okay."
"[I'm] running peer support [groups] and we involve other individuals who are out there and working or volunteering and working and offer them support. Been there, done that type of thing where they have somebody kind of to look up to…You go in and talk to them. They discuss issues that they may be uncomfortable with talking with family and their doctors or whatever."
"When I was about 18, I went to a young adults coping with arthritis group. It was, ‘Wow, look at all these people like me!'…Just seeing how similar they were to me and that I wasn't the only one."

A participant who is hearing-impaired participates in a group called SHHH, or Self Help for Hard of Hearing. As a person who had spent much of her life trying to hide her disability, she felt that the support group was very helpful in feeling like she is not alone.

A number of participants said they had received help from a variety of 12-step programs:

"During my high school years, when I was 18, 19 years old, I was also put in rehab, Alcoholics Anonymous, AA. I had trouble with booze."
"I currently am working two part-time jobs, one of which I got by meeting a person at a 12-step recovery meeting."
"I go to therapy twice a month. I'm in a 12-step program. I'm just trying to maintain right now."
"I go to NA [Narcotics Anonymous] programs, NA functions. I have peers and people there that help me, that I talk to. They don't help me…maintain my job or go to work and stuff, but they talk to me which makes me feel like I'm not too much different, I'm not way out here and everybody [else is in this] little circle that's working and they've got a life. I'm a part of that circle too."
"[When I need to talk] I go to a 12-step meeting, or occasionally I've found a hot line to call, which is a support line. I developed a friendship there with some of the listeners and I call [them]."
"When I first started, I had a support group that I went to. Now I rely more on that I am a member of AA, and rely on them as my support group."

l. Incentive/Other Programs for Businesses to Hire People with Disabilities

Several participants said they believe their employers may have received tax credits or other tax incentives for hiring them. One person said she believed that her first employer had received "a tax write-off" for hiring her, while another said his employer had taken advantage of a tax credit for hiring people with disabilities, offered by the state. A participant with mental retardation was aware that his employer had received incentives for hiring him, but was unclear about the nature of these incentives:

"I've heard from [my counselor] that there's special credits to the employers. They were paying over half my wages and there's another tax credit from Rehab, too, and by reporting that is a simple incentive for a lot of employers to help people get back to work in decent jobs."

One participant described trying to take advantage of the Targeted Tax Credit program when she was looking for employment, but received a surprise instead:

"VR told me they'd give me a nice piece of paper for my prospective employer to fill out saying they'd get a tax cut if they hired me. Well I'm all excited thinking this is good news. I get hired at the school district and I give them this paper -- the school district doesn't pay taxes."

Another participant described an incentive that had been available to King County government employers at the time he was hired:

"[When I started working for the county,] I didn't realize [my disability] actually could be an asset. [There was a] selective certification program…which gave the employer a certain merit point for hiring people with disabilities."

One participant said:

"I wanted to get into the state system because I figured that I need to be in a safe place as I was going blind. So I applied to be a [claims manager with a state agency]. They provided me with adaptive technology, which was the only way I could do my job and so I guess that would be the key support there. I think also that part of why I got the job was they probably had diversity requirements or Affirmative Action requirements. And I'm also sure, by the way, that's a factor that got me into law school as well, so I appreciate Affirmative Action."

EXHIBIT 1: Ranking of Supports by Site
Site/Support	Median	Percent in Category
Site/Support	Median	1	2	3	4	5	Missing
Los Angeles
Family/Peer Non-Financial Support and Encouragement	1	71.3	16.8	9.9	1	1	3
Access to Health Insurance/Medical Care	1	65	14.6	11.7	1.9	6.8	1
Special Skills or Other Training	1	63	14	15	1	7	4
College Education	1	52.6	18.6	15.5	4.1	9.3	7
Employer Accommodations	1	53	20	17	5	5	4
Public Income Assistance/Entitlement Programs (SSI, SSDI, TANF)	1	50.5	21.4	8.7	5.8	13.6	1
Job Search Assistance	1	50.5	17.2	11.1	6.1	15.2	5
Transportation Services	2	48	11.2	12.2	5.1	23.5	6
Specific Drugs or Treatments	2	48	10.2	13.3	8.2	20.4	6
Assistive Devices/Technology	2	42.6	17	10.6	6.4	23.4	10
Vocational Rehabilitation	2	32.7	20.2	19.2	9.6	15.4	1
Family Financial Support or Income Other than Work Earnings	2	39.4	18.2	16.2	12.1	14.1	5
Public In-Kind Assistance Programs (Food Stamps, Housing)	3	32.7	14.3	15.3	5.1	32.7	8
Special Education as a Youth	3	32.3	8.6	9.7	3.2	46.2	11
Job Coach	4	21.1	12.6	11.6	5.3	49.5	9
Personal Assistive Services	3	21.1	16.8	16.8	10.5	34.7	9
Newark
Family/Peer Non-Financial Support and Encouragement	1	54.4	28.1	12.3	1.8	3.5	15
Access to Health Insurance/Medical Care	1	69.1	20	5.5	0	5.5	17
Special Skills or Other Training	1	57.9	21.1	19.3	1.8	0	15
College Education	1	66.7	16.7	8.3	0	8.3	24
Employer Accommodations	1	53.8	25	5.8	3.8	11.5	20
Public Income Assistance/Entitlement Programs (SSI, SSDI, TANF)	2	43.5	19.6	17.4	6.5	13	26
Job Search Assistance	3	33.3	14.6	27.1	6.3	18.8	24
Transportation Services	2	45.8	16.7	6.3	8.3	22.9	24
Specific Drugs or Treatments	2	38.8	24.5	16.3	6.1	14.3	23
Assistive Devices/Technology	2	45.5	15.9	6.8	11.4	20.5	28
Vocational Rehabilitation	2	29.2	13.9	5.6	2.8	12.5	1
Family Financial Support or Income Other than Work Earnings	3	35.6	13.6	23.7	11.9	15.3	13
Public In-Kind Assistance Programs (Food Stamps, Housing)	3	35.4	6.3	10.4	10.4	37.5	24
Special Education as a Youth	3	35.8	5.7	15.1	18.9	24.5	19
Job Coach	4	33.9	7.1	8.9	14.3	35.7	16
Personal Assistive Services	3	33.3	14.3	11.9	4.8	35.7	30
Seattle/Tacoma
Family/Peer Non-Financial Support and Encouragement	1	55.7	22.7	9.3	4.1	8.2	11
Access to Health Insurance/Medical Care	1	71.4	8.2	11.2	4.1	5.1	10
Special Skills or Other Training	1	54.8	24.7	15.1	2.2	3.2	15
College Education	1	62.9	16.9	11.2	3.4	5.6	19
Employer Accommodations	1	55.9	17.2	16.1	2.2	8.6	15
Public Income Assistance/Entitlement Programs (SSI, SSDI, TANF)	2	50	13.8	6.3	6.3	23.8	28
Job Search Assistance	2	45.5	18.2	20.5	5.7	10.2	20
Transportation Services	1	53.8	11	8.8	3.3	23.1	17
Specific Drugs or Treatments	2	47.8	14.1	9.8	7.6	20.7	16
Assistive Devices/Technology	2	45.9	14.1	5.9	4.7	29.4	23
Vocational Rehabilitation	2	30.6	13.9	11.1	9.3	17.6	6
Family Financial Support or Income Other than Work Earnings	2	40.5	19	13.1	3.6	23.8	24
Public In-Kind Assistance Programs (Food Stamps, Housing)	3	30.6	16.5	7.1	8.2	37.6	23
Special Education as a Youth	3	35.1	8.1	14.9	6.8	35.1	34
Job Coach	3	38.5	10.8	9.2	4.6	36.9	43
Personal Assistive Services	4	22.4	6.6	15.8	10.5	44.7	32
All
Family/Peer Non-Financial Support and Encouragement	1	61.6	21.6	10.2	2.4	4.3	29
Access to Health Insurance/Medical Care	1	68.4	13.3	10.2	2.3	5.9	28
Special Skills or Other Training	1	58.8	19.6	16	1.6	4	34
College Education	1	59.4	17.5	12.4	3	7.7	50
Employer Accommodations	1	54.3	20	14.3	3.7	7.8	39
Public Income Assistance/Entitlement Programs (SSI, SSDI, TANF)	2	48.9	18.3	9.6	6.1	17	55
Job Search Assistance	2	45.1	17	17.9	6	14	49
Transportation Services	2	49.8	12.2	9.7	5.1	23.2	47
Specific Drugs or Treatments	2	46	14.6	12.6	7.5	19.2	45
Assistive Devices/Technology	2	44.4	15.7	8.1	6.7	25.1	61
Vocational Rehabilitation	2	37.3	19.5	15.3	9.3	18.6	8
Family Financial Support or Income Other than Work Earnings	2	38.8	17.4	16.9	9.1	17.8	42
Public In-Kind Assistance Programs (Food Stamps, Housing)	3	32.5	13.4	11.3	7.4	35.5	53
Special Education as a Youth	3	34.1	7.7	12.7	8.2	37.3	64
Job Coach	3	29.6	10.6	10.2	7.4	42.1	68
Personal Assistive Services	3	23.9	12.7	15.5	9.4	38.5	71

EXHIBIT 2: Rankings by Impairment
Support	Cognitive	Communication	Mental Illness	Mobility	Other Chronic	Not Identified	All
Support	Percent	Percent	Percent	Percent	Percent	Percent	Percent
Sample Size	49	60	54	91	23	7	284
Family/Peer Non-Financial Support and Encouragement
Median	1	1	1	1	1	2	1
1	61.5	60.0	66.0	62.7	52.6	50.0	61.6
2	12.8	28.3	24.0	20.5	21.1	0.0	21.6
3	12.8	6.7	8.0	12.0	10.5	25.0	10.2
4	5.1	3.3	0.0	1.2	5.3	0.0	2.4
5	7.7	1.7	2.0	3.6	10.5	25.0	4.3
Missing	10	0	4	8	4	3	29
Access to Health Insurance/Medical Care
Median	1	1	1	1	1	3	1
1	71.1	50.8	80.4	67.5	90.0	60.0	68.4
2	13.2	16.9	11.8	14.5	5.0	0.0	13.3
3	13.2	11.9	5.9	12.0	0.0	20.0	10.2
4	0.0	5.1	0.0	3.6	0.0	0.0	2.3
5	2.6	15.3	2.0	2.4	5.0	20.0	5.9
Missing	11	1	3	8	3	2	28
Special Skills or Other Training
Median	1	1	1	2	1	3	1
1	64.1	70.7	60.4	46.9	63.2	40.0	58.8
2	20.5	15.5	20.8	24.7	10.5	0.0	19.6
3	7.7	10.3	12.5	21.0	26.3	60.0	16.0
4	0.0	1.7	2.1	2.5	0.0	0.0	1.6
5	7.7	1.7	4.2	4.9	0.0	0.0	4.0
Missing	10	2	6	10	4	2	34
College Education
Median	3	1	2	1	1	3	1
1	37.0	79.3	48.8	59.5	57.9	33.3	59.4
2	7.4	10.3	30.2	17.9	26.3	0.0	17.5
3	18.5	8.6	9.3	13.1	15.8	33.3	12.4
4	3.7	0.0	2.3	6.0	0.0	0.0	3.0
5	33.3	1.7	9.3	3.6	0.0	33.3	7.7
Missing	22	2	11	7	4	4	50
Employer Accommodations
Median	1	1	2	2	1	1	1
1	57.1	67.8	41.7	45.6	73.7	60.0	54.3
2	20.0	20.3	18.8	22.8	10.5	20.0	20.0
3	11.4	6.8	16.7	20.3	10.5	20.0	14.3
4	0.0	3.4	2.1	7.6	0.0	0.0	3.7
5	11.4	1.7	20.8	3.8	5.3	0.0	7.8
Missing	14	1	6	12	4	2	39
Public Income Assistance/Entitlement Programs (SSI, SSDI, TANF)
Median	1	2	1	2	1	1	2
1	65.5	30.0	69.4	40.3	52.6	60.0	48.9
2	10.3	26.0	14.3	16.9	31.6	0.0	18.3
3	3.4	10.0	4.1	15.6	5.3	20.0	9.6
4	6.9	6.0	4.1	9.1	0.0	0.0	6.1
5	13.8	28.0	8.2	18.2	10.5	20.0	17.0
Missing	20	10	5	14	4	2	55
Job Search Assistance
Median	1	2	1	3	2	4	2
1	75.0	41.1	51.0	29.7	50.0	0.0	45.1
2	8.3	17.9	20.4	17.6	22.2	0.0	17.0
3	11.1	21.4	12.2	23.0	11.1	50.0	17.9
4	2.8	7.1	4.1	6.8	11.1	0.0	6.0
5	2.8	12.5	12.2	23.0	5.6	50.0	14.0
Missing	13	4	5	17	5	5	49
Transportation Services
Median	1	1	2	2	1	2	2
1	63.6	61.4	42.9	36.8	64.7	40.0	49.8
2	6.1	10.5	16.3	14.5	5.9	20.0	12.2
3	9.1	5.3	4.1	15.8	5.9	40.0	9.7
4	3.0	5.3	4.1	6.6	5.9	0.0	5.1
5	18.2	17.5	32.7	26.3	17.6	0.0	23.2
Missing	16	3	5	15	6	2	47
Special Drugs or Treatments
Median	2	3	1	3	1	4	2
1	45.5	21.6	74.5	34.6	89.5	25.0	46.0
2	12.1	25.5	13.7	12.3	5.3	0.0	14.6
3	9.1	7.8	7.8	22.2	0.0	25.0	12.6
4	6.1	7.8	2.0	12.3	0.0	25.0	7.5
5	27.3	37.3	2.0	18.5	5.3	25.0	19.2
Missing	16	9	3	10	4	3	45
Assistive Devices/Technology
Median	4	1	5	2	2	1	2
1	29.2	76.3	14.0	40.5	46.7	66.7	44.4
2	8.3	13.6	9.3	24.1	13.3	0.0	15.7
3	8.3	3.4	9.3	11.4	0.0	33.3	8.1
4	8.3	1.7	4.7	8.9	20.0	0.0	6.7
5	45.8	5.1	62.8	15.2	20.0	0.0	25.1
Missing	25	1	11	12	8	4	61
Vocational Rehabilitation
Median	1	2	2	3	2	1	2
1	51.6	43.9	37.5	25.6	29.4	80.0	37.3
2	12.9	15.8	22.9	23.1	23.5	0.0	19.5
3	9.7	10.5	14.6	21.8	11.8	20.0	15.3
4	6.5	14.0	4.2	9.0	17.6	0.0	9.3
5	19.4	15.8	20.8	20.5	17.6	0.0	18.6
Missing	18	3	6	13	6	2	48
Family Financial Support or Income Other than Work Earnings
Median	2	2	1	3	3	2	2
1	44.7	37.5	51.0	26.3	47.4	50.0	38.8
2	15.8	21.4	16.3	21.1	0.0	0.0	17.4
3	18.4	14.3	12.2	21.1	15.8	25.0	16.9
4	0.0	5.4	6.1	17.1	15.8	0.0	9.1
5	21.1	21.4	14.3	14.5	21.1	25.0	17.8
Missing	11	4	5	15	4	3	42
Public In-Kind Assistance Programs (Food Stamps, Housing)
Median	2	5	1	4	1	4	3
1	46.9	14.8	51.0	17.8	70.6	25.0	32.5
2	9.4	22.2	13.7	11.0	5.9	0.0	13.4
3	6.3	7.4	7.8	17.8	11.8	25.0	11.3
4	9.4	5.6	2.0	12.3	0.0	25.0	7.4
5	28.1	50.0	25.5	41.1	11.8	25.0	35.5
Missing	17	6	3	18	6	3	53
Special Education as a Youth
Median	2	3	3	4	3	3	3
1	50.0	38.3	28.2	22.2	47.1	40.0	34.1
2	12.5	8.5	10.3	5.6	0.0	0.0	7.7
3	20.0	4.3	12.8	13.9	5.9	40.0	12.7
4	2.5	10.6	10.3	9.7	5.9	0.0	8.2
5	15.0	38.3	38.5	48.6	41.2	20.0	37.3
Missing	9	13	15	19	6	2	64
Job Coach
Median	1	5	4	5	2	1	3
1	69.8	11.4	25.0	16.2	26.7	66.7	29.6
2	9.3	20.5	10.0	2.9	26.7	0.0	10.6
3	7.0	4.5	10.0	17.6	0.0	16.7	10.2
4	4.7	6.8	7.5	8.8	13.3	0.0	7.4
5	9.3	56.8	47.5	54.4	33.3	16.7	42.1
Missing	6	16	14	23	8	1	68
Personal Assistive Services
Median	4	4	5	3	2	1	3
1	29.2	18.9	23.3	21.9	33.3	60.0	23.9
2	12.5	17.0	9.3	11.0	20.0	0.0	12.7
3	8.3	11.3	9.3	24.7	13.3	20.0	15.5
4	8.3	13.2	0.0	12.3	13.3	0.0	9.4
5	41.7	39.6	58.1	30.1	20.0	20.0	38.5
Missing	25	7	11	18	8	2	71

NOTES

Source: Federal Register (1999).
Supports used in securing a first job refer to supports used during transition from school to work, or from disability onset to work.
While expectations and motivation played a critical role in the employment success of those we interviewed, this does not mean, of course, that those who have not achieved a similar measure of employment success are not highly motivated. The most highly motivated individuals might be unable to overcome the barriers and disincentives to employment that are faced by many people with disabilities.
Section 209(b) of the Social Security Amendments of 1972 allows states to determine Medicaid eligibility separately from SSI eligibility, using income and resource standards that are no more restrictive than those in effect in 1972. There are eleven 209(b) states (Connecticut, Hawaii, Illinois, Indiana, Minnesota, Missouri, New Hampshire, North Dakota, Ohio, Oklahoma, and Virginia).
WIA replaces the Job Training Partnership Act (JTPA), passed in 1982, which authorized funding for programs to prepare youth (and adults) for entry into the labor force. Under JTPA, state programs were established and administered by Private Industry Councils comprising employers and education personnel. Services varied by state, but generally included job search, basic skills training, labor market information, occupational skills training, work experience, literacy training, job placement assistance, and summer youth employment.
Source: Federal Register (1999).
At each site, a number of individuals who were screened in as focus group participants but who could not attend a focus group were interviewed by phone.
Supports used in securing a first job refer to supports used during transition from school to work, or from disability onset to work.
It is possible that this interviewee confused Social Security survivor benefits with SSI.
In determining SGA, "countable" monthly earnings (i.e., gross earnings minus any subsidized earnings and impairment-related work expenses) are averaged over the period of time in which work was performed.
At the time this focus group was conducted, SGA was equivalent to $700 in monthly income. As of January 1, 2001, SGA has been increased to $740 a month.
While expectations and motivation played a critical role in the employment success of those we interviewed, this does not mean, of course, that those who have not achieved a similar measure of employment success are not highly motivated. The most highly motivated individuals might be unable to overcome the barriers and disincentives to employment that are faced by many people with disabilities.

REFERENCES

Brady, H.E., Meyers, M., and Luks, S. (1998). "The Impact of Child and Adult Disabilities on the Duration of Welfare Spells" (working paper). University of California, Berkley.

Brown, David E. (2000). The Role of Job Training Partnership Act Programs in School-to-Work Transition. Washington, DC: The National Governor's Association. http://old.nga.org/Pubs/OnlinePubs/STWOA.htm.

Committee on Ways and Means, and House of Representatives, U.S. (1998). 1998 Green Book. Washington, DC: U.S. Government Printing Office.

Federal Register (March 18, 1999). Volume 64, Number 52 (13428-13430). From the Federal Register Online via GPO Access [wais.access.gpo.gov] [DOCID:fr18mr99-84].

Johnson, A., and Meckstroth, A. (1998). Ancillary Services to Support Welfare to Work. Report prepared for the Office of the Assistance Secretary for Planning and Evaluation, U.S. Department of Health and Human Services. Princeton, NJ: Mathematica Policy Research, Inc.

Kregel, John (2001). Virginia Commonwealth University, personal communication. Richmond, VA: May 1.

Silverstein, Robert (2000). A Preliminary Analysis of the Relationship Between the Workforce Investment Act and the Federal Disability Policy Framework. http://www.comop.org/rrtc/rrtc/Workforce.htm.

Thompson, T., Holcomb, P., Loprest, P., and Brennan, K. (1998). State Welfare-to-Work Policies for People with Disabilities. Report prepared for the U.S. Department of Health and Human Services, Office of the Assistant Secretary for Planning and Evaluation. Washington, DC: Urban Institute. [Executive Summary, Full PDF Report]

Wolfe, B.L. and Hill, S.C. (1995). "The Effect of Health on the Work Effort of Single Mothers." Journal of Human Resources, 30(1), 42-62.

APPENDICES

APPENDIX A: Focus Group Methodology and Characteristics of Participants

This appendix is intended to provide more information about the methods used to conduct the focus groups for this study and the characteristics of those who participated in the focus groups. The first section addresses the focus group methodology, and the second section provides information on the focus group participants' characteristics.

FOCUS GROUP METHODOLOGY

The focus groups are the primary component of the study, and are designed to generate rich data about the employment experiences of working people with significant disabilities. The focus group protocol was designed to identify and recruit persons with disabilities that began early in life, who are successfully employed, and who represent persons with different types of impairments. The focus groups solicited qualitative information about the supports that contributed to work success utilized during three distinct periods: during childhood; at the time the individual was seeking his/her first post-school job; and at present. The effort is exploratory in nature, and intended to identify the range of supports that are most instrumental to participants' success, supports that would have been helpful had they been available, and difficulties individuals experienced accessing or utilizing specific supports. Below, we describe the methodology used to select the sites and conduct the focus groups.

Sites Selected for the Study

We conducted focus groups with people with disabilities at a single locality in each of three states. Because there is considerable variation across states in the nature and availability of policies and resources promoting the employment of people with disabilities, we focused the project's resources on only three sites so that they might be studied more in-depth.

Replication is another important reason to conduct the study in three sites, rather than one. While some findings will vary across the sites, we expect many findings to be similar and, therefore, more likely to be common to the experiences of workers with disabilities all over the country. Even though three sites cannot be nationally representative in a meaningful sense, the fact that some findings are replicated in the three diverse sites we have selected will give them more weight.

We selected three states with interesting features relevant to the purpose of our study. After selecting the states, our primary criteria for selecting the locality within each state was population size. We wanted to conduct the study in the localities with the largest populations, both to make it easier to recruit participants who meet the study criteria, and to broaden the potential range of supports that could be studied.

The criteria we considered in selecting the study states include:

states with relatively high rates of employment among SSI recipients and high rates of participation in SSI work incentive programs (Section 1619, Plan for Achieving Self Support (PASS), and Impairment-Related Work Expenses (IRWE));
states with an expressed interest in implementing the 1997 Balanced Budget Act provisions that allow Medicaid buy-in for people with disabilities with incomes up to 250% of the federal poverty level;¹
states with 1115 demonstrations that were likely to affect the employment of people with disabilities by making Medicaid coverage more accessible or providing specific services that might affect the ability of people with disabilities to work;
states with TANF policies that limit or do not allow exemptions from work requirements for people with disabilities;
states with special initiatives or particularly innovative programs designed to promote the employment of people with disabilities; and
states and localities not currently being studied for related purposes by other large-scale projects (e.g., the National Institute on Disability and Rehabilitation Research [NIDRR] Rehabilitation Research and Training Centers [RRTCs] on employment of people with disabilities, the Rehabilitation Services Administration [RSA] and SSA systems change demonstrations).

In considering which states to select, we also put some weight on the presence of contacts that Lewin/BPA have in specific states. This is important given the effort necessary to identify and recruit persons meeting our study criteria. If the information were available, we would have chosen states that have a high rate of employment among persons with significant disabilities. However, state-level estimates of employment rates among persons with disabilities were not available. We therefore relied on the criteria described above, which we believe to be indicators of supports and resources that promote employment among people with disabilities.

Based on the above criteria, we selected California, New Jersey, and Washington as the three states for the study. The characteristics of these states that led to their inclusion in the study are as follows (at the time of selection):

California: California is a large state with a wide range of disability and employment programs and supports, including an SSA systems change demonstration, and multiple RSA demonstrations, DOL initiatives, and Welfare-to-Work projects that address the issue of employment of people with disabilities. California also has: a relatively high percentage of residents participating in the SSI program, offers a generous state SSI supplement, and will implement a 4733 Medicaid waiver with its systems change project. California was selected primarily because of size, availability of resources, and the extensive contacts BPA has in the state, which facilitated the conduct of the study.
New Jersey: New Jersey has a Medicaid 1115 waiver (implemented in February 1998) that provides coverage to people with incomes up to 200 percent of the Federal Poverty Level (FPL), and up to 300 percent of FPL on a sliding-scale basis. The state also has a federal PAS demonstration that allows the use of PAS at work, and has DOL and Welfare-to-Work demonstrations. Use of Section 1619(b) among working SSI recipients is average, and individuals with disabilities are exempted from TANF work requirements only temporarily. The state has no RSA or SSA systems change demonstration.
Washington: Washington State has the second highest percentage of working SSI recipients using 1619(a), is among the highest for 1619(b) use, and has the second highest state SSI supplement. In addition, Washington has the following features: a DOL disability initiative; a Welfare-to-Work project; an RSA client choice demonstration; and no exemptions for people with disabilities from TANF work requirements. Washington was also recommended by several Technical Advisory Group (TAG) members because of the state's interest in disability and employment issues and the presence of private initiatives. Washington does not have an RSA or SSA systems change grant.

We conducted the focus group activities in the major metropolitan areas of each state. Most of the programs serving people with disabilities we identified are located in the major metropolitan areas of each state, and the greatest concentration of working persons with disabilities meeting our study guidelines were likely to be found in the major metropolitan areas. Of the states selected: Los Angeles represents the largest metropolitan area in California²; Newark is the largest metropolitan area in New Jersey; and Seattle represents the largest metropolitan area in Washington.

Participation Criteria

In recruiting individuals for participation in the focus groups, we attempted to select individuals who met the following criteria:

Age 18 or over;
Have a "significant" disability, where "significant," at a conceptual level, is defined as a level of disability that would, in the absence of work, qualify the individual for SSI or DI benefits;
Experienced the onset of their impairment or health condition prior to engaging in significant labor force participation; and
Are competitively employed and have worked for at least one year with earnings in excess of $8,240.³

We chose to focus on people with disabilities whose impairment began relatively early in life because current public policy attention has been captured by the rapid growth in the number of younger people coming on to the SSI and DI rolls, and to the issues faced by children with disabilities and their transitions from school to work. Public policy has also been focused on the work requirements of state TANF programs, which primarily serve relatively young adults with children, many of whom have significant impairments or health conditions.

We thought it important to reduce the breadth of issues addressed in this study in favor of greater depth. The range of issues affecting people who become disabled later in life, and who may have a long and established work history, are very different from the issues faced by people who develop disabilities either in childhood, or early in their adult life. Rather than attempt to address both types of individuals, we restricted our focus to the issues affecting those who develop disabilities early in life (i.e., before the first significant employment experience).

Participant Recruitment and Screening

Focus group participants were recruited through several means: local programs serving people with disabilities advertised the study and, in some cases, directly recruited individuals; solicitation letters were mailed to working DI and SSI recipients residing in the study sites and identified via Social Security administrative data; and general advertisements were placed in local newspapers, disability newsletters, and internet listserves. The solicitation materials requested that individuals call the study 800 number to be screened for participation in the study. The solicitation materials described the nature of the study and indicated that those selected to participate in a focus group would receive reimbursement for transportation expenses and a gift, equal to $25 in value, for their participation in the study.

Those who called the 800 number were administered a brief screening questionnaire (Attachment A-1) which probed on eligibility criteria, including age, age of onset, earnings, disability and health status, and employment history. Disability severity was evaluated via a two-step process.⁴

First, we collected information on the underlying condition(s) associated with the disability. We developed for the questionnaire a one-page listing of conditions, the presence of which would constitute a severe disability. This listing was based upon the list employed by the Social Security Administration for disability determination, and included the most common conditions across five domains: cognitive, communication, mental illness, mobility, and other chronic illnesses. Examples of these conditions include mental retardation; deafness and blindness; paralysis and osteomylitis; major depression and bipolar disorder; and HIV and kidney disease.

Second, for individuals with conditions not on the list, we assessed the extent to which the individual experienced one or more functional impairments in mobility (upper and lower body), social functioning and ability to care for self. Any individual reporting having "A lot" of difficulty performing two or more activities, or any individual reporting being "Unable to do" any one (or more) activity was considered to have a severe disability.⁵ Individuals who failed to meet any of the criteria were screened out. Those meeting the study participation criteria were scheduled for a focus group.

Conducting the Focus Groups

In forming focus groups, we made an effort to construct groups by impairment (i.e., cognitive, communication, mental illness, mobility and other chronic illness) on the assumption that variability in support use and other important characteristics would decrease with impairment homogeneity, and encourage in-depth discussions of shared experiences. Scheduling difficulties prevented us from achieving high rates of homogeneity among focus groups, although the groups were as homogenous as could be achieved under the circumstances. Because of the special communication limitations associated with individuals with cognitive disabilities, we did not form any mixed disability groups that included individuals with cognitive impairments. Each group was made up of six to ten participants.

At the beginning of each focus group, participants were asked to complete a registration form (Attachment A-2), which collected additional demographic and employment history information. Participants were asked about current employment (job title, industry, and schedule of employment), household income from all sources, number of adults and children in household, and reasons for employment interruptions. Participants were also asked to rank the importance of various supports in helping secure employment.

The focus groups sessions were approximately 2.5 hours in length. The discussion concentrated on the supports that members received and/or used that contributed to their ability to work in the competitive labor market. The moderator emphasized that supports could be defined very broadly, to include anything that has helped participants get and keep a job.

During each focus group session, we addressed three key topics:

Supports that participants used when their disabilities first occurred (or during childhood, if individuals became disabled at an early age). We were mainly interested in the supports that contributed to participants' ability to obtain competitive employment as an adult;
Supports that were instrumental in participants finding their first job and starting work; and
Supports that participants currently use to continue working.

The moderator encouraged participants to consider how the expectations of family, friends, and other key persons in their lives affected their employment choices. The moderator also reminded participants to consider which, of all types of supports they had used, are/were most important to their employment, including those not traditionally thought of as supports, and those not targeted toward individuals with disabilities. The focus group discussion guide is presented as Attachment A-3.

CHARACTERISTICS OF FOCUS GROUP PARTICIPANTS

Of the 575 individuals who responded to the study's solicitation efforts, 214 individuals were screened out of the study. The most prevalent reasons for screening out were unemployment, insufficient earnings, disability onset after first work experience, lack of a significant disability, or residence out of the catchment area. The majority of the Newark respondents who screened out were disqualified because they were not currently employed. In Seattle/Tacoma and Los Angeles, however, the majority of the respondents who screened out were disqualified because of insufficient earnings.

A total of 284 individuals participated in approximately 45 focus groups and about two dozen individual interviews across the three sites (104 in Los Angeles, 72 in Newark, and 108 in Seattle/Tacoma).⁶ Below we summarize the characteristics of focus group participants by site, and by impairment category. Cross-site variation in characteristics reflects variation in the populations living in the sites, but might also reflect variation in the recruitment process. We cannot assume that each sites sample is representative of the population in the site that meets the screening criteria.

We intended to construct focus group so that distribution by impairment within the focus groups reflected approximately the distribution of impairments of the underlying population. However, the distribution of impairments within the pool of eligible participants made this impossible. Exhibit 1 summarizes the distribution of impairments among focus group participants compared to the distribution of impairments in the underlying population.

Exhibit 1. Distribution of Impairments
Impairment	United States¹		Focus Groups
Impairment	Number	Percent	Number	Percent
Cognitive	449,000	2.4	49	17.3
Communication	508,000	2.7	60	21.1
Mental Illness	925,000	4.9	54	19.0
Mobility	8,269,000	44.2	91	32.0
Other Chronic Illness	8,577,000	45.8	23	8.1
Not Identified	0	0.0	7	2.5
All Conditions	18,728,000	100.0	284	100.0
Prevalence of chronic impairment causing work limitation, ages 18-69, 1992 NHIS. Source: LaPlante and Carlson (1996) Table 7a.

Participant Characteristics Overall and by Site

In Exhibit 2, we summarize the characteristics of participants overall, and by site (Los Angeles, Newark, and Seattle/Tacoma). Participants across the three sites were roughly the same age, with mean ages of 40 in Seattle/Tacoma, 37 in Newark, and 36 in Los Angeles. Sex distributions were similar between Los Angeles and Newark participants, (63 percent male in Los Angeles and 62 percent male in Newark), while Seattle/Tacoma participants were much less likely to be male (39 percent male). The distribution of participants by sex is likely an artifact of recruiting methods employed at each site, and does not reflect the distribution of the underlying population. According to 1990 Census data, across all sites, males with disabilities are more likely to be employed than comparable females. For example, in 1990, among males with mobility limitations in Washington State, 26 percent were employed compared to 20 percent of females. The figures for New Jersey were 30 versus 23 percent (respectively), and 28 versus 19 percent (respectively) in California (U.S. Census Bureau, 2000).

Mean age at first work for participants was quite similar across the sites (age 21 for Seattle/Tacoma and Newark, and age 19 for Los Angeles). Average hours worked per week were comparable in both Seattle/Tacoma and Newark (37 and 35 hours, respectively) versus 25 hours per week in Los Angeles.

The distribution of impairments varied across sites. Mental illness predominated among participants in Los Angeles and Newark (39 and 37 percent, respectively), while the largest share of Seattle/Tacoma participants experienced communication impairments (25 percent). About one quarter of participants in both Newark and Seattle/Tacoma had cognitive impairments, while only 10 percent of Los Angeles participants had this impairment. Mobility impairments were roughly equal across sites (17 percent in Los Angeles, 22 percent in Newark and 20 percent in Seattle/Tacoma). About 8 percent of all participants in each site had other chronic illnesses. Just over 50 percent of participants in each group experienced disability onset before age 13. Participants in Newark (65 percent) and Los Angeles (58 percent) were more likely to be single than Seattle/Tacoma participants (44 percent). Newark and Los Angeles participants (29 percent and 20 percent, respectively) were more likely to be black or African American than were Seattle/Tacoma participants (5 percent). Los Angeles participants were more likely to be Hispanic (29 percent) than either Seattle/Tacoma or Newark participants (three and four percent, respectively). Los Angeles participants (29 percent) were less likely to have completed college than either Newark (41 percent) or Seattle/Tacoma participants (47 percent). Newark participants (1.3 average employment interruptions) and Los Angeles participants (1.6 interruptions) also experienced fewer average employment interruptions since first significant employment compared to Seattle/Tacoma participants (1.8 average interruptions).

Exhibit 2. Participant Characteristics, Overall and by Site
Characteristic	Los Angeles		Newark		Seattle/Tacoma		All Sites
Sample Size	104		72		108		284
	Frequency	Percent	Frequency	Percent	Frequency	Percent	Frequency	Percent
SEX
Female	38	37.3	27	38.0	65	60.7	130	46.4
Male	64	62.7	44	62.0	42	39.3	150	53.6
Missing	2		1		1		4
MARITAL STATUS
Single, Never Married	59	57.8	44	64.7	47	43.9	150	54.2
Married	29	28.4	13	19.1	40	37.4	82	29.6
Divorced	12	11.8	8	11.8	17	15.9	37	13.4
Separated	2	2.0	2	2.9	3	2.8	7	2.5
Widowed	0	0.0	1	1.5	0	0.0	1	0.4
Missing	2		4		1		7
RACE
White	43	43.9	38	55.9	91	86.7	172	63.5
African-American	20	20.4	20	29.4	5	4.8	45	16.6
Asian	4	4.1	3	4.4	2	1.9	9	3.3
Other	28	28.6	6	8.8	5	4.8	39	14.4
Refused	3	3.1	1	1.5	2	1.9	6	2.2
Missing	6		4		3		13
ETHNICITY
Hispanic	30	28.8	3	4.2	3	2.8	36	12.7
Non-Hispanic*	74	71.2	69	95.8	105	97.2	248	87.3
PRIMARY IMPAIRMENT
Cognitive	10	9.6	15	23.1	24	22.2	49	17.7
Communication	26	25.0	7	10.8	27	25.0	60	21.7
Mobility	18	17.3	14	21.5	22	20.4	54	19.5
Mental Illness	41	39.4	24	36.9	26	24.1	91	32.9
Other Chronic Illness	9	8.7	5	7.7	9	8.3	23	8.3
Missing	0		7		0		7
EDUCATION
Less Than High School	8	7.9	9	12.7	13	12.6	30	10.9
High School Graduate	21	20.8	18	25.4	19	18.4	58	21.1
Some College	43	42.6	15	21.1	23	22.3	81	29.5
Four-Year College or More	29	28.7	29	40.8	48	46.6	106	38.5
Missing	3		1		5		9
PERSONAL EARNINGS
Less Than $10,000	19	18.3	15	21.4	30	27.8	64	22.7
$10,001-$20,000	35	33.7	23	32.9	28	25.9	86	30.5
$20,001-$35,000	28	26.9	16	22.9	23	21.3	67	23.8
$35,001-$50,000	9	8.7	14	20.0	19	17.6	42	14.9
$50,001-$75,000	10	9.6	2	2.9	5	4.6	17	6.0
More Than $75,000	3	2.9	0	0.0	3	2.8	6	2.1
Missing	0		2		0		2
HOUSEHOLD INCOME
Less Than $15,000	32	30.8	14	23.0	22	23.7	68	26.4
$15,001-$37,500	39	37.5	25	41.0	38	40.9	102	39.5
$37,501-$52,500	10	9.6	10	16.4	13	14.0	33	12.8
$52,501-$75,000	15	14.4	6	9.8	10	10.8	31	12.0
More Than $75,000	8	7.7	6	9.8	10	10.8	24	9.3
Missing	0		11		15		26
PARENTS' EDUCATION
Less than High School	21	21.0	11	16.2	15	14.7	47	17.4
High School Graduate	24	24.0	19	27.9	21	20.6	64	23.7
Some College	35	35.0	16	23.5	31	30.4	82	30.4
Four-Year College or More	20	20.0	22	32.4	35	34.3	77	28.5
Missing	4		4		6		14
CHILDREN IN HOUSEHOLD
0	73	70.2	50	78.1	81	76.4	204	74.5
1	15	14.4	7	10.9	12	11.3	34	12.4
2	10	9.6	5	7.8	11	10.4	26	9.5
3	2	1.9	2	3.1	1	0.9	5	1.8
4	4	3.8	0	0.0	1	0.9	5	1.8
Missing	0		8		2		10
AGE AT ONSET OF DISABILITY
0-12	55	52.9	37	56.1	62	57.4	154	55.4
13-18	24	23.1	10	15.2	15	13.9	49	17.6
19 and older	25	24.0	19	28.8	31	28.7	75	27.0
Missing	0		6		0		6
Characteristic	Los Angeles		Newark		Seattle/Tacoma		All Sites
Characteristic	Mean	Missing	Mean	Missing	Mean	Missing	Mean	Missing
Average Age	35.6	0	37.4	1	39.5	0	37.6	1
EMPLOYMENT
Age at First Work	19.4	2	21.3	6	20.7	4	20.4	12
Hours Worked per Week	35.3	0	34.9	0	37.0	1	35.8	1
Months Worked per Year	11.4	0	9.6	3	11.6	2	11.0	5
Number of Job Interruptions	1.6	0	1.3	0	1.8	0	1.6	0
* Includes both "No" responses and non-responses to "Do you consider yourself to be of Hispanic origin?"

Characteristics by Impairment

Participant characteristics by primary reason for impairment are shown in Exhibit 3. Of the five impairment categories, four were predominantly composed of men: cognitive (57 percent), mental illness (61 percent), mobility (52 percent), and other chronic impairments (52 percent). The percentage of participants who reported their race as white was very nearly the same (approximately 60 percent) across all impairment categories, except for the cognitive impairment category (81 percent).

Educational achievement varied substantially by impairment category. Approximately 17 to 19 percent of participants in the cognitive, mental illness, and other chronic illness categories had less than a high school education, while only six percent of participants with mobility impairments and zero percent of participants with communication impairments did not complete high school. Individuals with communication impairments were most highly educated, with 58 percent possessing a four-year degree or more. The figure for those with mobility impairments was nearly 50 percent, and about 40 percent for people with mental illness.

Individuals with cognitive and other chronic illnesses were most likely to live in low-income (less than $15,000 annually) households (50 and 47 percent, respectively). Individuals with mobility and communication and impairments were the most likely to live in higher-income households, with 32 and 47 percent, respectively, living in households with incomes above $37,500 annually.

The average age of participants by category was similar, ranging from 36 to 39 years. Mean age at first work was also similar (between 19 and 21 years old). While the large majority of participants worked 35 or more hours per week, individuals with cognitive impairments averaged only 31 hours per week. Individuals with cognitive impairments also worked fewer months a year (10 months) versus about 10 to 12 months per year for those in other impairment categories. The number of lifetime job interruptions was highest for those with mental illnesses (2.4), while average interruptions ranged from 1.5 to 1.8 lifetime for the remaining impairment categories. Most participants lived in childless households (from a low of 67 percent among participants with communication impairments to a high of 91 percent among participants with cognitive impairments). Between 10 percent (among participants with cognitive impairments) and 30 percent (among participant with other chronic illnesses) lived in households with one or two children.

Exhibit 3. Participant Characteristics by Impairment
Characteristic	Cognitive	Communication	Mental Illness	Mobility	Other Chronic	Not Identified	All
Sample Size	49	60	54	91	23	7	284
	Percent	Percent	Percent	Percent	Percent	Percent	Percent
SEX
Female	42.9	59.3	38.9	47.8	47.6	0.0	46.4
Male	57.1	40.7	61.1	52.2	52.4	100.0	53.6
Missing (N)	0	1	0	1	2	0	4
MARITAL STATUS
Single, Never Married	63.0	35.0	65.4	53.3	59.1	71.4	54.2
Married	23.9	45.0	17.3	34.4	9.1	28.6	29.6
Divorced	13.0	16.7	17.3	7.8	22.7	0.0	13.4
Separated	0.0	3.3	0.0	3.3	9.1	0.0	2.5
Widowed	0.0	0.0	0.0	1.1	0.0	0.0	0.4
Missing (N)	3	0	2	1	1	0	7
RACE
White	81.3	62.7	63.0	60.2	57.1	0.0	63.5
African-American	8.3	11.9	20.4	15.7	28.6	66.7	16.6
Asian	0.0	1.7	7.4	2.4	9.5	0.0	3.3
Other	10.4	20.3	7.4	18.1	4.8	33.3	14.4
Refused	0.0	3.4	1.9	3.6	0.0	0.0	2.2
Missing (N)	1	1	0	8	2	1	13
ETHNICITY
Hispanic	8.2	18.3	5.6	15.4	13.0	14.3	12.7
Non-Hispanic*	91.8	81.7	94.4	84.6	87.0	85.7	87.3
SITE
Los Angeles	20.4	43.3	33.3	45.1	39.1	0.0	36.6
Newark	30.6	11.7	25.9	26.4	21.7	100.0	25.4
Seattle/Tacoma	49.0	45.0	40.7	28.6	39.1		38.0
EDUCATION
Less Than High School	19.1	0.0	16.7	5.7	19.0	42.9	10.9
High School Graduate	55.3	6.8	16.7	13.8	14.3	57.1	21.1
Some College	17.0	35.6	25.9	33.3	42.9	0.0	29.5
Four-Year College or More	8.5	57.6	40.7	47.1	23.8	0.0	38.5
Missing (N)	2	1	0	4	2	0	9
PERSONAL EARNINGS
Less Than $10,000	43.8	6.7	37.0	12.1	30.4	16.7	22.7
$10,001-$20,000	41.7	21.7	29.6	26.4	39.1	66.7	30.5
$20,001-$35,000	10.4	33.3	14.8	29.7	26.1	16.7	23.8
$35,001-$50,000	4.2	20.0	16.7	19.8	4.3	0.0	14.9
$50,001-$75,000	0.0	13.3	0.0	9.9	0.0	0.0	6.0
More Than $75,000	0.0	5.0	1.9	2.2	0.0	0.0	2.1
Missing (N)	1	0	0	0	0	1	2
HOUSEHOLD INCOME
Less Than $15,000	50.0	7.0	29.2	19.3	47.4	66.7	26.4
$15,001-$37,500	35.0	45.6	47.9	33.0	42.1	33.3	39.5
$37,501-$52,500	5.0	24.6	8.3	13.6	5.3	0.0	12.8
$52,501-$75,000	2.5	17.5	8.3	18.2	0.0	0.0	12.0
More Than $75,000	7.5	5.3	6.3	15.9	5.3	0.0	9.3
Missing (N)	9	3	6	3	4	1	26
PARENTS' EDUCATION
Less than High School	15.6	18.6	26.5	13.3	10.0	28.6	17.4
High School Graduate	40.0	16.9	12.2	22.2	30.0	57.1	23.7
Some College	26.7	37.3	18.4	35.6	30.0	14.3	30.4
Four-Year College or More	17.8	27.1	42.9	28.9	30.0	0.0	28.5
Missing (N)	4	1	5	1	3	0	14
CHILDREN IN HOUSEHOLD
0	90.5	67.2	81.1	69.2	69.6	71.4	74.5
1	4.8	13.8	15.1	14.3	13.0	0.0	12.4
2	4.8	13.8	1.9	11.0	17.4	14.3	9.5
3	0.0	3.4	0.0	2.2	0.0	14.3	1.8
4	0.0	1.7	1.9	3.3	0.0	0.0	1.8
Missing (N)	7	2	4	0	0	0	10
AGE AT ONSET OF DISABILITY
0-12	87.8	78.3	20.4	40.0	69.6	50.0	55.4
13-18	2.0	10.0	31.5	22.2	17.4	50.0	17.6
19 and older	10.2	11.7	48.1	37.8	13.0	0.0	27.0
Missing (N)	0	0	0	1	0	5	6
Characteristic	Cognitive	Communication	Mental Illness	Mobility	Other Chronic	Not Identified	All
Characteristic	Mean	Mean	Mean	Mean	Mean	Mean	Mean
Average Age	36.2	39.4	38.6	36.7	37.7	34.0	37.6
Missing (N)	1	0	0	0	0	0	1
EMPLOYMENT
Age at First Work	21.3	21.2	20.1	20.1	18.8	16.6	20.4
Hours Worked per Week	30.5	38.8	34.9	37.2	37.7	30.7	36.0
Months Worked per Year	9.6	11.4	11.4	11.6	10.4	10.3	11.1
Number of Job Interruptions	1.5	1.4	2.4	1.4	1.8	0.7	1.6
Missing (N)	7	2	2	5	0	2	18
* Includes both "No" responses and non-responses to "Do you consider yourself to be of Hispanic origin?"

NOTES

State selection was performed prior to the passage to TWWIIA.
The Los Angeles metropolitan area is the second-largest metropolitan area in the country. (The New York City metropolitan area is largest.)
In order to recruit a sufficient number of participants in some locales, the minimum income was lowered slightly (to $7,500 per year) during some recruitment phases.
For individuals with communication impairments, we administered the screening questionnaire using a TTY.
Possible responses to the prompt "Please tell me how much difficulty you have doing each of the following" included "No difficulty," "Some" difficulty, "A lot" of difficulty, and "Unable to do."
At each site, a number of individuals who were screened in as focus group participants but who could not attend a focus group were interviewed by phone.

ATTACHMENTS

ATTACHMENT A-1. Participant Screening Questionnaire (Word file)
ATTACHMENT A-2. Focus Group Registration Form (Word file)
ATTACHMENT A-3. Focus Group Protocol (Word file)

APPENDIX B: Locality Profiles

OVERVIEW OF LOCALITIES

The availability of programs that provide income, in-kind, and other support to people with disabilities can play an important role in determining employment outcomes. Because employment outcomes are partly a function of access to various support programs, we collected information on the support programs available to people with disabilities in each of the three focus group localities (Los Angeles, California; Newark, New Jersey; and Seattle/Tacoma, Washington).

In this first section, we provide a brief overview of the characteristics of individuals with disabilities in California, New Jersey and Washington. In the three sections that follow we provide detailed descriptions of the programs in each of the states. The profiles include programs that are available at the federal, state and local levels. There is substantial overlap regarding the provisions of the federal programs that are available, although many federal programs contain state-specific provisions that vary across the states. In describing the federal programs, we describe both the federal and state features. While the federal descriptions are identical across profiles, descriptions of state-specific provisions are unique to each profile. This means that some information is repeated; however, it also means that each state's section can stand alone, as all the programs for each state are described in its section. Footnotes refer the reader to source material, or in some cases, provide additional information.

Locality Characteristics

Exhibit 1 provides an overview of key locality characteristics, including the population of each state and locality, and the poverty and unemployment rates of the states. The localities vary substantially in population size, both at the state and metropolitan-area level. Data from 1999 indicate that unemployment rates across the states are roughly comparable (approximately five percent). While poverty rates in New Jersey and Washington are similar (about nine percent), the rate in California is substantially higher (15 percent).

Exhibit 1. State and Metropolitan Area Characteristics
State and Metropolitan Area Characteristics	California	New Jersey	Washington
Population (2000)	33,871,648	8,414,350	5,894,121
Percent of Persons in Poverty*	15.3	8.5	9.2
Unemployment Rate (1999)	5.2	4.6	4.7
	Los Angeles	Newark	Seattle/Tacoma
Metropolitan Area Population (1999)	16,036,587	1,954,671	3,465,760
* Three-year moving average from the Current Population Survey, 1997-1999.

Exhibit 2 summarizes demographic characteristics by disability status for each of the three states in which focus groups were conducted. Disability prevalence across the states is similar, ranging from nine percent (with any disability) in New Jersey to 10 percent in California and Washington. Educational attainment is roughly equal across the states, with about 13 percent of individuals possessing a college degree. The percent with a high school degree in California and New Jersey are roughly equal (65 and 64 percent, respectively), while the figure is somewhat higher (75 percent) in Washington.

Exhibit 2. Population Characteristics by Disability Status, 1990¹
Characteristic	Any Disability			Work Disability (Any Severity)			Work Disability (Unable to Work)
Characteristic	CA	NJ	WA	CA	NJ	WA	CA	NJ	WA
Male	1,002,748	224,624	168,086	733,663	156,380	148,297	335,049	69,325	57,222
Female	946,237	226,524	151,479	687,552	154,458	131,408	382,270	83,887	62,814
Total	1,948,985	451,148	319,565	1,421,215	310,838	279,705	717,319	153,212	120,036
Percent of Population (Age 16-64)	10.2	9	10.4	7.4	6.2	9.1	3.7	3	3.9
Percentage of Individuals with Income:
Below 100% of poverty	18	15.4	21.8	18.1	16.4	22.8	22.6	22.9	32.3
Below 125% of poverty	26.2	19.3	27.4	27.1	20.6	28.6	35.4	28.5	39.6
Below 200% of poverty	42.5	30.6	42.3	43.4	32.3	43.7	54.6	42.7	56.3
Below 300% of poverty	59	46.4	59.8	59.4	47.9	61.1	70.4	72.6	72.3
Percent with High School Degree	65.2	64.2	74.7	66.4	63.2	74.5	56.2	53.2	63.8
Percent with College Degree	12.9	13.1	12.5	12.5	12	12.2	7.6	7.4	6.9
Employment
Percent in Labor Force	49.3	52.8	50.1	40.2	41.8	46.4	--	--	--
Percent Employed	43.5	47.1	44.2	34.8	36.9	40.5	--	--	--
Unemployment Rate	11.7	10.6	11.7	13.4	11.7	12.8	--	--	--

Exhibit 3 summarizes income and program participation across states.

Exhibit 3. Income and Program Participation by State
Characteristics	CA	NJ	WA
INCOME
Average Annual Pay by Metro Area (1998)*	$36,608	$40,413	$39,848
SOCIAL SERVICES
TANF
TANF families (monthly average), 1999	624.1	62.2	62.6
Percent change from 1995	-32.1	-47.6	-38.6
Average monthly benefit, 1997	$526	$332	$476
Maximum benefit for family of three (two children), 2000	$626	$424	$546
Percent real change in maximum benefit since July 1994 (2000)	-7.9	-10.7	-10.7
Maximum TANF plus Food Stamps benefit for family of three (two children), 2000	$813	$672	$757
Combined federal and state TANF expenditures (millions), 1999	$6,167	$423	$470
State percentage of expenditures	45.7	64.7	54.8
Change in state spending (millions), 1995-1999	-$880	-$114	-$107
Program expenditures per family, 1999	$9,881	$6,799	$7,502
Work participation rates of beneficiaries, 1998	36.6	26.5	48.5
Percentage of participants who are non-white	67.7	85.2	32.6
Medicaid
Number of recipients with disabilities, 1998	926,252	151,050	112,306
Average payments for individual with disabilities, 1998	$6,632	$14,063	$9,236
Food Stamps
Number of food stamp recipients, 1999	2,027,000	385,000	307,000
SSI
Percentage of general population enrolled, 1999	3.2	1.8	1.7
Number of individuals with disabilities receiving payments, 1999	714,117	110,657	83,503
LIHEAP
Number of households assisted, 1996	156,168	141,931	48,823
Average benefit, 1996	$61	$229	$325
CA = LA/Long Beach; NJ = Newark; WA = Seattle-Bellevue-Everett All data from Ways and Means Committee, 2000.

Program Profiles

In this section, we describe the types of supports that are available within each locality, and we briefly compare programs in each category across localities.

Public Income Support. Public income support programs supplement income through direct cash payments. These are primarily federal (and federal/state) programs, including Social Security Disability Income (DI), Supplemental Security Income (SSI), Department of Veterans Affairs (VA) programs, and Workers' Compensation (WC). DI and SSI are designed specifically for people with disabilities. Other programs, such as VA and WC programs are not designed specifically for people with disabilities; however, a large percentage of individuals who receive program benefits have disabilities or have a child with a disability, so we include them here.

All three states provide public income support programs through DI, SSI and Workers' Compensation, and the participation requirements and features of these programs vary somewhat by state. The rate of SSI participation is about twice as high in California (3.2 percent of the population) as in New Jersey or Washington (1.8 and 1.7 percent, respectively) (Committee on Ways and Means, 2000).

Transitional Income Support. Transitional income assistance programs are designed to provide temporary assistance to unemployed or otherwise disadvantaged individuals and families. Typically, these programs have restrictions on the receipt of such benefits, in terms of eligibility criteria and the amount of time an individual can receive payments. The major programs available under this category are Temporary Assistance for Needy Families (TANF), General Assistance (GA) and Unemployment Insurance (UI). The eligibility requirements, benefits and provisions of the programs vary by state.

All states also provide transitional income support services, primarily through the TANF block grant program and through unemployment insurance. The TANF program operated in California is called CalWORKS (California Work Opportunity and Responsibility to Kids). Persons receiving cash aid under the program are also automatically eligible for food stamps, Medi-Cal (the state Medicaid program), child care, and transportation subsidies. In both New Jersey and Washington, the TANF program is referred to as WorkFirst. In New Jersey, individuals eligible to receive cash assistance under WorkFirst are also eligible for child care, transportation services and health care services. Many participants who leave WorkFirst for employment may be eligible to receive extended child care and medical coverage for up to 24 months, as well as other temporary supports, such as transportation, housing assistance and food stamps. In Washington, WorkFirst recipients are eligible for cash assistance, and subsidies for child care and health care. Help with medical costs is available for up to one year after assistance ends due to employment.

Work activity requirements and time limits on benefit receipt vary by state. In California, TANF recipients with disabilities are exempt from work activity requirements. In New Jersey, people with disabilities may be exempt from work activity, depending upon the severity of the disability. In Washington, individuals with disabilities are not exempt from work activities. Case workers assist TANF recipients with disabilities in the development of individualized service plans that emphasize the capacities of the individual, and require participation in work, training or other activities designed to move the individual toward self-sufficiency. In California, TANF recipients with disabilities are exempt from the 60-month limit on lifetime benefits. In New Jersey, people with disabilities are exempt from time limits only if they are exempt from participating. In Washington, TANF recipients with disabilities are subject to time limits. The maximum benefit available to a family of three (with two children) in California is $626 a month. In Washington, the maximum benefit is $546, and it is $424 in New Jersey (Committee on Ways and Means, 2000).

Each state also provides GA, which typically serves as the program of last resort. In California and Washington, the program provides income support to low-income individuals or individuals with disabilities who are not eligible for any other state program. In California, the program is funded and maintained by the counties employing various standards. New Jersey's WorkFirst New Jersey General Assistance (WFNJ/GA) program provides temporary cash assistance and supports to single adults and couples without dependent children under uniform statewide rules similar to WFNJ/TANF. As of March 2001, approximately two-thirds of the 566 municipal welfare departments transferred administrative authority of GA to county welfare agencies. The remaining one-third of the municipal welfare departments continues to administer their GA programs. The Washington GA program employs uniform statewide rules, as well, and, unlike California and New Jersey, has restricted eligibility for people with disabilities (Gallagher, 1999).

Public In-kind Support. In-kind support consists of goods and services that are provided free of charge. The most prominent of these are Medicare, which provides health insurance to people over the age of 65 and people with disabilities who have received DI benefits for at least 24 months, and Medicaid, which provides health insurance for low-income individuals (including most SSI recipients and some others who have disabilities), respectively. Other programs include food stamps, housing and home heating subsidies. There is substantial variation among these programs across states.

The Medicaid program in California is known as Medi-Cal, and the program pays for hospital visits, physician visits and prescription drugs. A number of programs targeted specifically at people with disabilities and funded through Medi-Cal include the Aging with Dignity Initiative, which provides funding to improve the quality of long-term health facilities for elderly people and people with disabilities. The Child Health and Disability Prevention Program provides immunizations, and blood and urine tests to help prevent disabilities.

The New Jersey Care Program for the Aged, Blind and Disabled provides Medicaid coverage to people with disabilities, and includes early and periodic screening services to prevent disabilities. The Medically Needy component allows individuals to "spend down" the program's income limit to help those with high medical costs (and incomes that are too high to be eligible for the regular Medicaid program) to receive assistance. Washington provides a number of programs through Medicaid to assist people with disabilities, including spend down and prevention programs.

Average Medicaid payments for individuals with disabilities vary by state. In 1998, average payments in California were about $7,000 per person, compared with approximately $14,000 per person in New Jersey and $9,000 per person in Washington (Committee on Ways and Means, 2000). In general, California has the highest allowable income for Medicaid eligibility, followed by Washington and New Jersey (National Conference of State Legislatures, 1996).

All states provide food stamps and run a number of supportive housing and independent living programs, as well as a variety of access and assistive technology programs.

Education and Rehabilitation. Education and rehabilitation programs are designed to help individuals invest in developing their abilities and skills, often with the primary goal of helping individuals become employed and self-sufficient. The major programs and policies include the Individuals with Disabilities Education Act (IDEA), which mandates that states provide a free public education, in the least restrictive setting possible, to students with disabilities. The Workforce Investment Act governs federal job training programs, adult education and literacy programs, and VR programs, with the purpose of coordinating service delivery to needy individuals. A variety of state and local programs also provide education and rehabilitation services.

All states provide a variety of education and training programs, including vocational rehabilitation and other training services. In California, individuals can participate in Internet and other job search services, work activity program services (which include supportive habilitation services), and Head Start, which includes Family Resource Centers that link families with disabled children to support networks. In Fiscal Year 1998-1999, approximately 114,000 individuals with disabilities registered with the Department of Rehabilitation, and the state spent $4,019 per case (California Department of Finance, 1999). In addition to the federal/state vocational rehabilitation program, New Jersey residents have access to a technical assistance center funded by NIDDR that provides training, technical assistance and service referrals regarding the ADA to businesses and individuals. In addition to providing services to individuals, Washington emphasizes providing assistance to businesses in training and hiring individuals with disabilities through its Employment Services for Businesses program.

Each state is also developing a One Stop service delivery system, in accordance with the Workforce Investment Act of 1998 (WIA), to deliver integrated employment, rehabilitation, disability benefit and other services. Each state also provides a number of tax incentives to provide income assistance to people with disabilities and to promote the hiring of such individuals. Finally, a variety of non-profit and other private entities offer programs in each state, which we describe in some detail in the appendices.

Community-Based, Private and Non-Profit Programs and Policies. A variety of non-governmental organizations and programs are available to individuals with disabilities within each locality that provide day care services, medical care, housing subsidies, job search services and VR services. A number of national non-profits have a presence in all three localities, such as the ARC, which provides support and services for people with mental retardation and developmental disabilities. The National Federation for the Blind and the Lighthouse for the Blind have a presence in all locations, as well. In the Seattle/Tacoma area, the Tacoma Area Coalition of Individuals with Disabilities is very active, providing a wide array of services, including providing information on housing and employment, job referrals, access to volunteer opportunities, and access to support groups. Within Los Angeles, Tri-City Mental Health Services provides mental health services and independent living training. In Newark, the JESPY house provides independent living skills, vocational training and other services for people with developmental disabilities.

More detailed information regarding local programs in each of the states profiled is available in the sections that follow.

LOS ANGELES, CALIFORNIA

This section contains descriptions of the programs and policies for people with disabilities available in Los Angeles, California. The profile includes programs that are available at the federal, state and local levels. The programs and policies described are divided into the following categories:

Public Income Support
Transitional Income Support Programs
Public In-Kind Support
Education, Training and Rehabilitation
Community-Based Programs and Policies
Private and Non-Profit Programs
Tax Policies

Federal and state programs are described in narrative form. Local programs are summarized in table form at the end of the section.

Public Income Support

Public income support programs supplement income through direct cash payments. Several of the programs described below are designed to insure workers against a loss of income due to a disabling physical or mental health condition. Other programs are not designed specifically for people with disabilities; however, a large percentage of individuals who receive program benefits have disabilities or have a child with a disability so we include them here.

Supplemental Security Income (SSI). Under the Federal Supplemental Security Income (SSI) Program, persons age 65 years and older, or those who are blind or disabled (including children), receive maintenance payments and supportive services, including emergency assistance and payment for burial. The services are administered by county welfare agencies. For eligible individuals, a state supplement is provided, increasing the net countable income up to the state standard for the respective living arrangement. Recipients residing in Title XIX nursing home facilities receive a personal need allowance, as well.

The California Department Social Services administers the SSI program statewide. The Social Security Administration charges each state a fee for processing the state supplement to the SSI payment. The total caseload as of August 1997 was 1,015,751. Maximum SSI payments each month (for the calendar year 1997) were as follows: $640.40 for Disabled/aged living separately, and $695.40 for a blind individual living independently.²

Social Security Disability Insurance (DI). The DI program provides cash payments to individuals with work histories who have a medically determined disability expected to last at least 12 months or result in death, and who are unable to engage in substantial gainful activity (SGA). SGA is currently defined as the equivalent of working with earnings above $740 a month.³ The payment amount for a worker is based on his or her lifetime average earnings covered by Social Security. DI benefits replace a portion of the worker's prior earnings. DI beneficiaries with earnings above the SGA level are subject to a loss of their DI cash benefits, and after an extended period of work activity above the SGA level, a loss of the Medicare eligibility.⁴

California State Disability Insurance (SDI). This program is a partial wage replacement insurance plan for California workers administered by the Employment Development Department of California. SDI is state-mandated and is funded through employee payroll deductions. The program provides short-term benefits to eligible workers who suffer a loss of wages when they are unable to work due to a non work-related illness or injury, or a medically disabling condition from pregnancy or childbirth. Some employees are exempt from SDI: Railroad employees, some employees of non-profit agencies, employees claiming religious exemptions, and most government employees.

Coverage is not dependent on staying with one employer. SDI may pay up to 52 weeks of benefits with a seven-day waiting period. For disabilities beginning December 31, 1999 or before, weekly benefits range from $50 to $336. For disabilities beginning January 1, 2000 or after, weekly benefits range from $50 to $490.⁵

Workers' Compensation. Workers' Compensation is administered by the State of California's Division of Workers' Compensation. This program provides medical benefits, temporary total disability benefits, permanent partial benefits, VR services, and death benefits to workers injured on the job. The focus of this program is statewide, and it is available to employees or their dependents injured in the course of employment.⁶ The program provides the following benefits:

Medical Care: Injured workers are entitled to all medical care reasonably required to cure or relieve effects of the injury, with no deductible or co-payments by the injured worker.
Temporary Total Disability Benefits. Workers unable to return to work within three days are entitled to temporary disability benefits. These benefits are intended to partially replace wages lost due to the injury. The benefits are designed to replace two-thirds of lost wages, up to a maximum of $490 per week.
Permanent Partial Benefits. Permanently disabled workers (workers having a permanent labor market handicap) may receive permanent disability benefits. A permanently disabled worker receives the temporary disabled benefit for life. A worker determined to have a permanent partial disability receives weekly benefits for a period which increases with the percentage of disability (from four weeks for a one percent disability up to 694 weeks for a 100 percent disability).
Vocational Rehabilitation Services. Injured workers unable to return to their former type of work are entitled to VR services if these services may be expected to return the worker to gainful employment. These services may include the development of a suitable plan, cost of training, and a maintenance allowance while the worker participates in rehabilitation. The maintenance payment for an injured worker in rehabilitation is designed to replace two-thirds of lost earnings, but has a maximum weekly amount of $246 per week. Total costs for rehabilitation are limited to $16,000 for workers injured on or after January 1, 1994.⁷

Department of Veterans Affairs Programs. Disability compensation is available to veterans who are discharged honorably and who have experienced or aggravated a disabling injury or disease during active military service. Veterans who have non-service related disabilities, or who are age 65 or older, are also eligible to receive a veteran's pension. Veteran's disability compensation is paid regardless of work activity.⁸

Transitional Income Support Programs

Transitional income assistance programs are designed to provide temporary assistance to unemployed or otherwise disadvantaged individuals and families. Typically, these programs have restrictions on the receipt of such benefits, in terms of eligibility criteria and the amount of time an individual can receive payments.

Temporary Assistance for Needy Families (TANF).⁹ The California Department of Social Services oversees Temporary Assistance for Needy Families (TANF) program. TANF provides cash assistance and supportive services such as food stamps and child care to working individuals. The program is available statewide to families that qualify as needy. California operates two waiver programs under TANF: The AFDC and Food Stamp Compatibility Demonstration Project and the California Work Pays Demonstration Project:

AFDC and Food Stamp Compatibility Demonstration Project. The California Department of Social Services runs this program, as well. The program allows AFDC (now TANF) households to be categorically eligible for the Food Stamps program. Recipients are allowed to deduct 40 percent of self-employment income in reporting monthly income. This project also disregards $100 per quarter in non-recurring gifts and infrequent income. If undergraduate student assistance and work study income payments are based on need, then they are disregarded as well. Food Stamps benefits terminated for failure to file a monthly report are reinstated if a good cause is found for the failure to report. It also simplifies the process of vehicle valuation.¹⁰
California Work Pays Demonstration Project. This project increases the resource limit to $2,000 and increases the automobile exemption to $4,500. It allows savings of up to $5,000 in restricted accounts. The Work Pays project also creates an Alternative Assistance program that allows AFDC applicants and recipients with earned income to choose Medicaid and child care assistance in place of a cash grant. It provides transitional child care and Medicaid to families who become ineligible for AFDC due to increased assets or income resulting from marriage or the reuniting of spouses. No increase in AFDC benefits is granted to families for additional children conceived while receiving AFDC.

General Assistance. The California General Assistance program is the state's program of last resort, serving primarily unemployed single adults without children, as well as individuals who are engaged in the SSI application process (i.e., primarily the elderly and people with disabilities). California state law establishes minimum benefits levels, but actual grant levels and eligibility rules are established by each of California's 58 counties. In 1996, the average GA grant per recipient in California was $225.¹¹

Emergency Food Assistance Program (EFAP). The California Department of Social Services administers this program. It provides emergency food supplies to low-income and no-income households as well as soup kitchens and other congregate feeding sites. EFAP is available to low-income or no-income individuals as well as non-profit organizations whose main purpose is to provide meals to homeless people.¹²

California Work Opportunity and Responsibility to Kids (CalWORKS). California Department of Social Services runs this program. It gives cash aid and services to families with eligible needy children who are deprived due to absence of, death of, or disability of parent or legal guardian in home. Its focus is statewide, and is available to TANF recipients. Needy caretakers of children receiving either Foster Care or SSI/SSP may also be eligible. The maximum aid payment for a family of three is $565 per month in counties with high living costs and $538 per month in lower cost-of-living counties. Persons receiving this cash aid are automatically eligible for food stamps, Medi-Cal, and child care and transportation subsidies as needed. Adult applicants are limited to receiving aid for a cumulative period of no more than 18 months. There are a minimum number of hours that recipients are expected to work. The budget for CalWORKS during Fiscal Year 1997-1998 was $602.4 million.¹³

Welfare-To-Work. The California Department of Social Services administers Welfare-to-Work. This program is designed to assist individuals receiving assistance through CalWORKS to transition into unsubsidized employment and self-sufficiency. Under the CalWORKS program adult recipients are required to meet work requirements by participating in welfare-to-work activities. Services offered by Welfare-to-Work include:

Job search services: Supervised and unsupervised job searches, job placement, job development, job club, and employment counseling.
Subsidized employment: On-the-job training, transitional employment, or supported work. Welfare-to-Work participants are placed into jobs where they receive training, supervision and counseling to learn job duties. All or part of the recipients CalWORKS' cash is used to help pay for the participant's wages.
Vocational training: Includes specialized training services designed to prepare recipients for a variety of careers, including clerical, teaching, child care, computer support, and truck driving.
Self-initiated placement: If a CalWORKS recipient/applicant is already enrolled in an undergraduate degree or certificate training program that leads to employment before being required to participate in Welfare-to-Work, she may be allowed to remain in that program as her self-initiated placement.
Adult basic education: Reading, writing, arithmetic, and high school proficiency or General Education Development (GED) certificate instruction; or English-as-a-Second-Language instruction.
Work experience: Participants may be assigned to get work experience in public agencies as well as private sector jobs. This is a non-paid welfare-to-work activity providing basic job skills, enhancing existing job skills, or providing needed community service that may lead to unsubsidized employment.¹⁴

Unemployment Insurance. The California Employment Development Office holds authority over this program. Unemployment Insurance is an insurance benefit program paid to workers who are unemployed through no fault of their own, and who are actively seeking work. Weekly benefit amounts range from a minimum of $40 to a maximum of $230 depending on the claimant's quarterly earnings. To qualify for the maximum amount each week an individual must earn at least $7,633 in a calendar quarter during the base period.¹⁵

Public In-Kind Support

In-kind support consists of goods and services that are provided free of charge. Examples of public in-kind support include food stamps, housing subsidies, and health insurance.

Medi-Cal. The California Department of Health Services administers the Medicaid program in California, known as Medi-Cal. Medicaid pays for hospital, doctor, prescription drugs, nursing home and other health services for low-income children and pregnant women and people who are blind, elderly and disabled. In fiscal year 2000-2001, California intends to spend $23 billion on its Medi-Cal program. The following programs are included under Medi-Cal in Los Angeles County:

Public-Private Partnership. Through this program, which runs under a Section 1115 Medicaid waiver, Los Angeles County contracts with private community-based clinics to provide primary care.¹⁶
Aging With Dignity Initiative. The California Department of Health Services runs this program. The Aging With Dignity Initiative extends no-cost Medi-Cal to elderly and needy beneficiaries as well as beneficiaries with disabilities. It also works to improve the quality of long-term health care facilities. It is available to elderly, needy, and disabled beneficiaries of Medi-Cal who earn up to 100 percent of the federal poverty level. The budget for fiscal year 2000-2001 is $91.8 million.¹⁷
Comprehensive Perinatal Services Program. This is a Medi-Cal fee-for-services program for low-income pregnant women. It aims to lower health care costs by preventing catastrophic and chronic illness in infants and children. It is available to all pregnant women enrolled in Medi-Cal Managed Care in LA County. Services include client orientation, an initial assessment, an individualized care plan, reassessment and postpartum assessment and care plan. Other program goals are a decrease in the incidence of low birth weight in infants and improvement in pregnancy outcomes.¹⁸

Medicare. Medicare is a Health Insurance Program for individuals 65 years old and older; some people with disabilities, under 65 years of age; and people with End-Stage Renal Disease (permanent kidney failure requiring dialysis or a transplant). The Health Care Financing Administration (HCFA) administers Medicare, covering 39 million Americans. Medicare has two parts:

Part A subsidizes care in hospitals, skilled nursing facilities, hospice, and some home health care. Beneficiaries with a sufficient earnings history do not pay a premium for Part A.
Part B helps pay for doctors, outpatient hospital care, and some other medical services not covered under Part A, including services of physical and occupational therapists, and some health services. Part B helps pay for covered medically necessary doctor services. Consumers are responsible for the monthly Medicare premium of $45.50. The cost of Part B may increase 10 percent for each 12-month period that an individual has Part B but did not take it. Enrollment in Part B is optional; the premium is usually deducted from Social Security, Railroad Retirement, or Civil Service Retirement payment.

The original Medicare plan is available everywhere in the United States. It is the most common plan for receiving Medicare Part A and Part B benefits. An individual may go to any doctor, specialist, or hospital that accepts Medicare. Some people also have access to Medicare Managed Care Plans. Under the Managed Care Plan, an individual is restricted to doctors, specialists and hospitals that are part of the plan. Plans must cover all Medicare Part A and B benefits. Some plans cover extras, like prescription drugs. Private Fee-for-Service Plans is a new health care choice in some regions of the country. An individual may still see any doctor, specialist, or hospital. Plans must cover all Medicare Part A and B benefits. Some plans include extras, such as extra days in the hospital. The plan, not Medicare, determines the cost to the consumer.

Healthy Family Program. The California Department of Health Services runs the Healthy Family Program. It is a low-cost insurance plan providing health, dental and vision coverage for children who do not qualify for no-cost Medi-Cal. Families with incomes at or below 250 percent of the Federal Income guidelines, children who are 18 years of age or younger, and children without employer-sponsored health insurance in the last three months are also eligible for the Healthy Family Program. The budget for this program for fiscal year 2000-2001 is $336 million.¹⁹

Access for Infants and Mothers (AIM). AIM is administered by the California Department of Health Services. It provides health insurance for women during pregnancy, and for 60 days postpartum. It also provides health insurance to the child for up to two years of age. It is available to pregnant women without insurance as well as pregnant women with insurance, but who have maternity deductibles or co-payments greater than $500. The Fiscal Year 2000-2001 State budget allocated $44.9 million for this program.²⁰

Child Health and Disability Prevention Program (CHDP). This program is administered federally by the Department of Health and Human Services, and locally by the Los Angeles County Department of Health Services. CHDP provides low and moderate-income families complete access to preventive exams, including immunization, and blood and urine tests. The program is available to low/moderate income families with Medi-Cal. The annual budget for this plan is $85 million.²¹

Acquired Traumatic Brain Injury Project. The California Department of Mental Health administers this program. Services are targeted at persons 18 years of age or older who have sustained (after birth) an injury resulting from an external force to the brain or any of its parts, resulting in psychological, neurological, or anatomical changes in brain functions. The Acquired Traumatic Brain Injury Project provides individual case coordination, supported employment, intensive day treatment, and structured living arrangements. The budget for this program is $500,000 annually.²²

Caregiver Resource Centers. This program, run by the California Department of Mental Health Services, provides multiple services to the families and caretakers of persons with adult-onset brain disorders. Services offered include legal advice, information, long-term planning and consultation, support groups, education, and respite care services. The annual budget is $9,247,000.²³

Children's System of Care. The California Department of Mental Health administers the Children's System of Care. This system provides treatment to children with severe mental disabilities. The program integrates the various child-serving agencies and systems to collaboratively provide special education, child welfare, health, and increasingly, juvenile justice services. It redirects monies and resources from institutional care puts these funds into local levels of care, as well as improving service planning, delivery and evaluation across departments. The goal of these changes is an improvement of overall care to clients that have serious emotional disturbances by providing treatment in the child's home or community.²⁴

Early and Periodic Screening, Diagnosis and Treatment (EPSDT). Sponsored by the California Department of Mental Health, EPSDT is a comprehensive health program available to Medicaid-eligible beneficiaries under 21 years of age. It provides periodic health check-ups, developmental and nutritional appraisal, vision and hearing screening, health immunizations, and health education.²⁵

California Major Risk Medical Insurance Program. The California Major Risk Medical Insurance Program is overseen by the California Department of Health Services and administered by the Managed Risk Medical Insurance Board. This program provides health insurance to California residents who are ineligible for Medicare and can not get insurance on the open market. The budget for the Major Risk Medical Insurance Program is $40 million.²⁶

In-Home Supportive Services (IHSS). The California Department of Social Services manages IHSS. IHSS offers a wide range of services including housekeeping, shopping, cooking, laundry, and personal care. The services are available to persons with disabilities, persons aged 65 or older, or persons who are blind and unable to live safely at home without help. They are also available to persons who are financially unable to purchase these services. IHSS is available to legal residents of California only. The program is maintained with funds from the State General Fund, the County Services Block Grant, Federal Title XIX, and County matching funds.

Adult Protective Services (APS). APS is overseen by the California Department of Social Services and administered at the county level by county APS service. APS provides counseling, financial advice and advocacy for its clients. The program also works to spread information on adult abuse reporting laws. The service is available to any individual, regardless of income.²⁷

Integrated Care Management Project. The Integrated Care Management Project is a demonstration whose main goal is the ability to provide long-term services that allow a case manager to link a recipient with a wide range of services, while utilizing all informal supports and funding sources. In Los Angeles County, this project is administered by the Community and Senior Services Agency on Aging of Los Angeles County in partnership with the Adult Protective Services program, the Los Angeles County Department of Public Social Services, and the California Department of Social Services. The Integrated Care Management Project is available to individuals 18 years of age or older with one of the following: Impairment in one or more activities of daily living (e.g. eating, bathing, dressing); impairment in two or more instrumental activities of daily living (e.g. shopping, cleaning, meal preparation); or inability to manage daily affairs due to emotional or cognitive impairment. The budget for this program is approximately $5.5 million annually.²⁸

AIDS Drug Assistance Program (ADAP). This program provides drugs to HIV patients who could not otherwise afford them. It is run by the Professional Management Development Corporation (PMDC) under contract to the California Department of Health Services. ADAP is provided for residents of California aged 18 or older who are diagnosed with HIV, ineligible for Medi-Cal or other third-party payer, and who have a Federal Adjusted Gross Income of less than $50,000.²⁹

Comprehensive AIDS Resources Emergency Act 1990/ Health Insurance Premium Payment (CARE/HIPP). CARE/HIPP pays the health insurance premiums of individuals who are disabled and unable to work because of HIV/AIDS. The program is administered by the California Department of Health Services.³⁰

California Children Services. The Los Angeles County Department of Health Services directs this program in Los Angeles County. CCS provides medical therapy units (MTUs) to children with disabilities. Children ages birth to 21 years with neurological, neuromuscular and complex orthopedic conditions are eligible for this program.³¹

California Partnership for Long-Term Care. The California Partnership for Long-Term Care provides long-term care insurance protection in cooperation with private health insurance companies. The program is statewide, and targets elderly citizens.³²

Federal Food Stamp Program. California administers the federal Food Stamp program, through the Department of Social Services. The program is statewide, and is available to eligible participants in the CalWORKS (California's welfare-to-work project) program. This program provides cash benefits to aid in paying for food. The amount of food stamps a low-income person or family can receive is based on the United States Department of Agriculture's Thrifty Food Plan. The Plan estimates how much it costs to provide a household with nutritious low-cost meals. Estimates are revised yearly to keep pace with changing food prices. The United States Department of Agriculture funds 100 percent of the cash benefits, and administrative costs are broken down as follows: Federal--50 percent; State--35 percent; County--15 percent.³³

California Food Assistance Program (CFAP). CFAP stems from an agreement between the State of California and the United States Department of Agriculture that includes a coupon purchase plan for the purchase of federal Food Stamps. CFAP is a state-funded program providing federal food stamps for legal non-citizens legally present in the United States prior to August 22, 1996 and determined ineligible for federal food stamp benefits solely due to their immigration status.³⁴

Assistance Dog Special Allowance. This program provides a monthly allowance for the feeding, care, and maintenance of guide, signal or service dogs. This program is available to persons who are deaf or have hearing impairments, persons who are blind, and persons with disabilities. In order to be eligible, the candidate must be a recipient of SSI/SSP or In-Home Supportive Services. The California Department of Social Services administers this program.³⁵

Low-Income Home Energy Assistance Program. The Low Income Home Energy Assistance Program (LIHEAP) is a statewide program, funded by the federal Low-Income Home Energy Assistance Program Block Grant. The California Department of Community Services and Development administers the program. LIHEAP provides subsidies (average $300) to help low-income families pay the cost of home heating bills. The gross monthly income of a family determines the family's eligibility for this program.³⁶

Department of Energy Weatherization Assistance Program (DOE WAP). The California Department of Community Services and Development runs DOE WAP. This program reduces heating and cooling bills by improving the energy efficiency of homes. It is available statewide to low-income households, with a special focus on the elderly, persons with disabilities, and families with children.

Community Service Block Grants (CSBG). CSBG's provide low-income households with food, shelter and healthcare needs. The goal of the program is to provide assistance in attaining self-sufficiency. The program was created by the federal Omnibus Budget Reconciliation Acts of 1981 and administered by the California Department of Community Services and Development.³⁷

Homeowner and Renter's Assistance. This program offers payments based on the percentage of property taxes assessed and paid on the home, or taxes paid indirectly through rent. It is available to those who are blind, have disabilities, and/or are 62 years of age and older. The California Franchise Tax Board oversees this program.³⁸

Supportive Housing for Persons with Disabilities. This program provides interest-free capital advances to nonprofit organizations that build, rehabilitate, or purchase rental housing to be used as supportive housing. The Department of Housing and Urban Development administers this program.³⁹

Community Care Facilities. The California Department of Developmental Services oversees this program. These facilities provide 24-hour non-medical residential care to children and adults.⁴⁰

Family Home Agency. This program is maintained by a non-profit organization under contract to the California Department of Developmental Services. The agency approves homes offering space for up to two developmentally disabled adults to live in a family environment. This program is distributed throughout the state, and administered through 21 regional centers.⁴¹

Foster Family Agency. Foster families are residential options for children with developmental disabilities. Foster Family Agencies are responsible for the recruitment, training, and certification of foster homes. They must also provide continued support to certified parents and the children living with them. The California Department of Developmental Services administers this program statewide, but the actual services are provided through regional centers.⁴²

Independent Living Program. The California Department of Developmental Services oversees this program. The Independent Living Program provides and/or coordinates support services for individuals in independent living settings. The program's services focus on functional skills training for adults who have acquired basic self-help skills.⁴³

Supported Living Services. The California Department of Developmental Services oversees this program. These services offer support to adults with developmental disabilities that choose to live in homes they own or lease.⁴⁴

Cal-Mortgage Program. The Cal-Mortgage Program allows non-profit health facilities to borrow funds from long-term lenders for facility construction, improvement, and expansion. The 2000-2001 fiscal year budget allocated $1.8 million for this program, which is administered by the California Office of Statewide Health Planning and Development.⁴⁵

Education, Training and Rehabilitation

Education and Rehabilitation programs are designed to help individuals invest in developing their abilities and skills, often with the primary goal of helping individuals become employed and self-sufficient. Programs and policies related to education and rehabilitation for individuals with disabilities are described below.

Education Programs and Policies. Under the Individuals with Disabilities Education Act (IDEA), states are required to provide free appropriate public education for students with disabilities at the elementary and secondary level. Schools are required to create Individual Education Programs (IEPs) to help assist youth with disabilities obtain important services at no additional cost to their families. IEPs provide a central guide to available services as well as a plan for post-secondary transitions for school to work for all youth with disabilities during secondary school. Also, the US Department of Education, Office of Special Education (OSEP) provides grants to assist states in providing services.

Workforce Investment Act Implementation. The Workforce Investment Act of 1998 (WIA) rewrites federal statutes governing job training programs, adult education and literacy, and VR. It is intended to provide a more coordinated, customer-friendly, locally driven workforce development system supported by an enhanced statistics system. Under WIA, states have oversight of the statewide system of Workforce Investment Boards (WIBs), administer the Employment Service (labor exchange), administer job training programs, and build and manage a statewide employment statistics system. The challenge in implementing WIA is to coordinate and streamline all the partner agencies that provide the services and information critical for successfully matching workers with employers.⁴⁶

In California, the Governor of the state is responsible for the implementation of WIA. The Employment Development Department will administer WIA at the State level, and Local Workforce Investment Areas will administer programs locally. WIA will provide job training programs, adult education and literacy, and VR. Under WIA implementation, there will be statewide programs for adults and dislocated workers as well as work preparation programs and postsecondary education preparation for youth aged 14-21.⁴⁷

Workforce Investment Boards (WIBs). Executive Order No. 36 (1995) established county-based WIBs in recognition of county-level delivery of the majority of workforce development programs. The LA County WIB has set up WIA kiosks which offer services such as career counseling, job banks, and employment assistance. These kiosks are intended to better serve clients on the varying job markets within LA County. The Los Angeles County WIB intends to implement WIA as well as certifying One Stop Centers which will offer a variety of employment supports.⁴⁸

Veterans' Dependents Educational Assistance. The California Department of Veterans Affairs, Division of Veterans Services authorizes this program. This program provides tuition and fee waiver benefits at any campus of the California State University system, University of California system, or California Community College. This program is available to the dependent child, spouse, or unmarried, surviving spouse of a service-connected disabled or deceased veteran.⁴⁹

The Job Training Partnership Act. The Job Training Partnership Act (JTPA) is designed to assure that the skills of local workers match the skills that employers need. JTPA connects employers, educators and government representatives into a network that provides localized job training to workers who would otherwise have difficulty finding and keeping a job. Such individuals include dislocated workers who lost their jobs due to plant closings, welfare recipients, young people looking for their first job, and older unemployed men and women. JTPA emphasizes vocational instruction, yet many other services are available, including remedial class in many basic academic subjects, as well as classes to help workers earn a GED. The California Employment Development Department administers this program. There are 52 JTPA regional, or "Service Delivery Areas" (SDAs), located throughout California. A "Workforce Investment Board" of local business people, educators, government and labor representatives and community-based organizations governs each SDA.⁵⁰

Employment Development Department Job Service. Through internet-based CalJOBS, the California Employment Development Department (EDD) links employers with qualified job seekers. Through this program the EDD also provides employers with re-employment services for dislocated workers. The EDD Job Service is available statewide to Californian unemployed workers.⁵¹

Work Activity Program Services (WAP). Services provided by WAP include paid work, work adjustment, and supportive habilitation services in a workshop setting. Supportive habilitation services may include social skills and community resource training, if necessary to achieve vocational objectives. These services are available statewide to adults with developmental disabilities. The California Department of Rehabilitation administers this program.

Habilitation Services Program (HSP). This program addresses the vocational needs of persons with severe developmental disabilities. Services are directed at developing an individual's maximum potential for mainstreaming into VR. This program is administered statewide by the California Department of Rehabilitation. Services are provided through regional centers or local Department of Rehabilitation offices.⁵²

Early Start Program. Early Start provides early intervention services for infants and toddlers with disabilities ages 0-3, as well as services for their families. The target population is children with developmental disabilities or delay, or children who are at risk for delay or disability. The California Department of Developmental Services and the California Department of Education oversee this program statewide.⁵³

Family Resource Centers. These are a component of the Early Start program. Family Resource Centers provide the families of infants and toddlers with disabilities with access information, resources and support networks. It is available statewide through 53 community-based, family-focused agencies established under the Early Start Program. This program is jointly administered by the California Department of Developmental Services and the California Department of Education.⁵⁴

0-3 Early Head Start Training Project. This program is administered by the Los Angeles County Office of Education. It provides support services for pregnant women including parent education. It also serves as an inclusive environment for toddlers and children with disabilities. It is available to low-income pregnant women and low-income families with infants and toddlers. Families, even if not low-income, with infants and toddlers with disabilities also have access to services provided by the Early Head Start Training Project.⁵⁵

Instructional Program. This program is available to students with disabilities. The Los Angeles County Office of Education administers the Instructional Program. This program provides secondary classes for students with severe disabilities ranging from being deaf to specialized physical health care services for students with multiple or severe disabilities.⁵⁶

Family School Community Partnership. This is a program that promotes communication between home and school, as well as providing access to and coordinates community support services for children and families. It is administered by the Los Angeles County Office of Education, Special Education division.⁵⁷

Job Accommodation Network. The Job Accommodation Network (JAN), a service of the President's Committee on Employment of People with Disabilities, is a toll-free information and referral service providing information on job accommodation, employers' responsibilities under the ADA, and on technical assistance, funding, education, and services related to the employment of people with disabilities. JAN also analyzes trends and statistical data related to the technical assistance it provides.⁵⁸

Community-Based Programs and Policies

Day Program Services. These are community-based programs for individuals best served by a regional center. Services may include development of self-help skills and the development of social and recreational skills. These programs are available statewide, and are administered under the auspices of the California Department of Developmental Services.⁵⁹

Private and Non-Profit Programs

Project ABLE (Able Beneficiaries Link to Employers). Project ABLE is a national resume bank that provides employers an easily accessible applicant pool of qualified job-ready individuals who are interested in working. The resume bank operates through the joint efforts of the Office of Personnel Management (OPM), SSA, Rehabilitation Services Administration (RSA), the Department of Veterans Affairs (VA), and state VR agencies. The program is designed to provide employers access to quality human resources while providing training and employment services to eligible people with disabilities.⁶⁰

The Arc. The Arc is a private nonprofit advocacy organization designed to provide a better quality of life for people with mental retardation and their families. The Arc of Southeast Los Angeles County provides services for the majority of persons with mental retardation in the Los Angeles County area, but is only one among many chapters of the Arc.⁶¹

Project HIRE. Project HIRE is an employment placement and training program for adults with developmental disabilities. It takes an innovative approach towards assisting individuals in choosing a job and provides Employment Training Specialists (ETS). An ETS works with the employee at the job site and teaches job skills, assists with independently traveling to and from work, and facilitates socialization with co-workers. Project HIRE also offers Transition Services designed to assist schools in developing and implementing quality transition plans for students in special education programs. These services include community-based vocational assessments; job shadowing and sampling; job placement and coaching; and professional consultation. Additionally, project HIRE provides technical assistance on state-of-the-art supported employment to service provider agencies in New Jersey.⁶²

National Federation of the Blind of California. The National Federation of the Blind of California is a private, non-profit organization that works statewide for blind persons. It provides support for blind persons as well as information for employers.⁶³

Easter Seals Southern California. The Easter Seals Southern California is a non-profit organization that focuses on eliminating the physical, social and economic barriers so that people with disabilities may participate in their communities with equality, dignity and independence.⁶⁴

Protection and Advocacy, Inc. Protection and Advocacy, Inc. (PAI) is a non-profit agency that provides many services to persons with disabilities. PAI educates persons with disabilities on their legal, civil, and service rights. The organization provides training in peer- and self- advocacy. It refers persons to other sources of help. Additionally, PAI investigates complaints of abuse in institutions. It also attempts to bring forward impact legislation when a case affects the rights of persons with disabilities.⁶⁵

Community Rehabilitation Services. Community Rehabilitation Services is a private, nonprofit agency that assists persons with disabilities with the East and Northeast areas of LA County. Their end goal is to enhance these persons' options for independent living.⁶⁶

Tax Policies

Earned Income Tax Credit. This is a tax credit paid to a working family earning just the minimum wage. It is available statewide.⁶⁷

Low Income Housing Tax Credit. Congress created the Low Income Housing Tax Credit (LIHTC) to compensate for the high costs of constructing and rehabilitating apartments that lead to rent rates set higher than low income families can afford. Nationwide, the LIHTC leverages about $7 billion in investment each year to produce approximately 75,000 apartments that rent at prices affordable to low income families and the elderly. All apartments are dedicated at restricted rates for 30 years or more to families who earn 60 percent or less of area median income. Currently, 59 percent are dedicated for periods longer than 30 years, and one in six is permanently dedicated to low income use. Both federal and state programs are administered by the California Mortgage Bond and Tax Credit Allocation Commission.⁶⁸

Work Opportunity Tax Credit (WOTC) and Welfare-To-Work Credit. The Ticket To Work and Work Incentives Improvement Act of 1999 authorizes this tax credit, and the California Employment Development Department certifies employers for the same credit. This program offers and employer tax credit of up to $8,500 to employers who promote hiring for certain target groups (such as Food Stamp recipients aged 18-24, VR referrals, etc.). This program is available statewide, and benefits low-income individuals.⁶⁹

Policies and Programs Available in Los Angeles for People with Disabilities
Organization	Contact Information	Web Site	Program/Services	Target Group	Target Area
Private and Non-Profit Programs
American Civil Liberties Union	1616 Beverly Blvd. Los Angeles, 90026 PH: (213)977-9500	www.aclu-sc.org	Advocate for individual rights and equal justice and to extend constitutional rights to groups that have been traditionally denied to them. Also works for change through public education, community activism, public policy analysis, and governmental lobbying.	People with disabilities who require legal assistance in areas dealing with constitutional protections	Los Angeles area
Asthma Allergy Foundation of America, Southern California Chapter	5900 Wilshire Blvd. Suite 2330 Los Angeles, 90036 PH: (800)624-0044 (323)937-7859 FAX: (323)937-7815	www.aafasocal.com	Children suffer most from asthma. Our free camp, sport clinics and treatment programs in schools help these asthmatic children lead normal, active lives.	Individuals with asthma and allergic diseases	Southern California
California State University, NorthridgeCenter on Disabilities	1811 Nordhoff St. Northridge, 91330 Voice/TTY: (818)677-2578 FAX: (818)677-4929	www.csun.edu	Provides educational support services to students with disabilities; holds an annual conference, "Technology and Persons with Disabilities; directs an "Assistive Technology Applications Certificate Program," which teaches professionals in the field how to use technology on behalf of disabled people.	Students with disabilities	Not limited to a target area
Canine Companion Services	P.O. Box 446 Santa Rosa, 95402 PH: (800)CCI-DOGS	www.caninecompanions.org	Provides highly trained assistance dogs and ongoing support. CCI graduates pay only a $100 Team Training registration fee that is reimbursed in supplies. There is no charge for the dog. People with physical or developmental disabilities who can demonstrate that a Canine Companion will enhance their independence or their quality of life are eligible to apply. Also eligible are professionals working for organizations that provide physical or mental health care to clients who could benefit from interaction with a facility dog.	People with disabilities	Not limited to a target area
Casa Colina Rehabilitation Services	255 E. Bonita Ave. PO Box 6001 Pomona, 91769 PH: (909)506-7733 FAX: (909)596-7845	www.casacolina.org	Casa Colina Centers for Rehabilitation constitutes a health care network providing medical rehabilitation, residential, return to work and community services. Participants mentioned children programs and outdoor adventure activities Casa Colina offered.	People with disabilities	Southern California
Crohn's And Colitis Foundation Of America	3731 Wilshire Blvd. Suite 518 Los Angeles, 90010 PH: (213)380-3800 FAX: (213)380-6635	www.ccfa.org	Devotes contributions to scientific research, support services and education to benefit the thousands of California residents who suffer from Crohn's disease or ulcerative colitis.	Children and adults with Crohn's disease or colitis	Southern California
Disabled Student Center at Santa Monica College	1900 Pico Blvd. Santa Monica, 90405 PH: (310)434-4000	www.smc.edu	Accessibility; adaptive equipment services; accommodations; resource information; advocacy, counseling, referral for diagnostic testing for learning disabilities, note takers, readers, special testing accommodations, support groups, scribes, and taping of textbooks.	Students with disabilities	West Los Angeles area
Jewish Big Brothers Association of Los Angeles	22622 Vanowen St. West Hills, 91307 PH: (800)453-KIDS FAX: (323)761-8695	www.jbbla.org	Big Brother program, including disabled children/similarly disabled Big Brothers matching; mentoring programs; parent and child counseling; interracial; nonsectarian camping experience	Boys and girls 6-18	Los Angeles area
Juvenile Diabetes Foundation, Los Angeles Chapter	1020 S. Arroyo Pkwy Suite 200 Pasadena, 91105 PH: (626)403-1480 FAX: (626)403-1488	www.jdfcure.org	Research to save the lives of children and adults who suffer from diabetes and its devastating complications.	Individuals with diabetes	Los Angeles area
Los Angeles Child Guidance Clinic (multiple locations)	3787 S. Vermont Los Angeles, 90007 PH: (323)766-2360	www.lachild.org	Comprehensive treatment services for children with serious emotional and/or behavioral problems or who have been abused. Families/caregivers are integral part of treatment.	Children and their families	Los Angeles area
Lupus Foundation Of America, Southern California Chapter	17985 Sky Park Cir. Suite J Invine, 92614 PH: (888)532-2322	www.lupusca.org	Patient-oriented organization helping people with lupus and their families by providing information, referral education, crisis intervention and support for lupus research.	People with lupus	Los Angeles area
Lutheran Social Services of Southern California	2424 S. Fremont Ave. Alhambra, 91803 PH: (626)570-5200 FAX: (626)570-5210	www.lsssc.org	Multi-service agency providing counseling, emergency assistance, transitional housing, housing, brown bag programs and day programs for adults with development disabilities.	People with limited options	Southern California
March Of Dimes Birth Defects Foundation	3699 Wilshire Blvd. Suite 520 Los Angeles, 90010 PH: (213)637-5066 FAX: (213)637-5055	www.ocmodimes.org/scc	Improves the health of babies by preventing birth defects and infant mortality. This is accomplished through programs of research, community services, education and advocacy.	Infants with disabilities; general public	Southern California
Muscular Dystrophy Association (multiple locations)	University of California, Los Angeles 300 UCLA Medical Plaza	www.mdausa.org	Fighting 40 neuromuscular diseases through worldwide research, a nationwide network of clinics offering comprehensive medical services, and far-reaching professional and public health education.	All persons with muscular dystrophy and neuromuscular disorders, their families and their care/support providers	Southern California
Myasthenia Gravis Foundation	5675 Telegraph Rd. Suite 230 Los Angeles, 90040	www.myasthenia-ca.org	A voluntary health organization which informs patients about their neuromuscular disease, conducts medical education, provides clinic and drug bank services and supports medical research.	People with myesthenia gravis	Southern California
Southern California National Kidney Foundation of Southern California	5777 W. Century Blvd. Suite 1450 Los Angeles, 90045 PH: (310)641-8152 (800)747-5527 FAX: (310)641-5246	www.kidneysocal.org	Dedicated to the treatment, prevention and cure of kidney/urologic disease. Provides patient services (including camp); public/professional education; research; promotes organ donation and transplantation.	Individuals with kidney and urinary tract diseases	Southern California
Rancho Los Amigos Hospital	7601 E. Imperial Hwy Downey, 90242 PH: (800)426-4467 (562)401-7041	www.rancho.org	Licensed 436-bed facility which has achieved an international reputation over the last 40 years for its pioneering efforts in the rehabilitation of patients of all ages with severe disabilities, including victims of spinal cord injuries and strokes. The hospital maintains a close affiliation with the University of Southern California School of Medicine.	People with disabilities, especially people with spinal cord injury	Southern California
Western Law Center on Disability Rights (located on the campus of the Loyola Law School, Loyola Marymount University)	919 S. Albany St. P.O. Box 15019 Los Angeles, 90015 PH: (213)736-1194 FAX: (213)736-1428	www.wlcdr.org	Disability mediation; learning rights project; cancer legal resource center; train-the-trainers workshop for disability rights advocates; disability rights roundtables; self-advocacy training for people with disabilities; outreach and education	Persons with all types of disabilities who require legal assistance	Southern California
Education, Training, and Rehabilitation
AbilityFirst (formerly Crippled Children's Society of L.A.)	2555 E. Colorado Blvd. Second Floor Pasadena, 91107 PH: (626)396-1010	www.abilityfirst.org	Programs in day care, therapeutic recreation, vocational training, sheltered workshops, resident camps, independent living apartments and information/referral.	Children and adults with physical and developmental disabilities	Los Angeles area
Activities for Retarded Children	6456 Whitsett Dr. N. Hollywood, 91606 PH: (818)762-4365		Provides therapeutic recreation, socialization and adult education through Saturdays Camp, day care, residential camp, self advocacy, independent living and job skills training.	Children with mental retardation	Northern LA County, San Fernando Valley
Ahead With Horses Inc.	9311 Del Arroyo Dr. Sun Valley, 91352 PH: (818)767-6373		Develops therapy through horses, enabling children to lead more independent and productive lives.	Multi-handicapped children	Los Angeles area
Amyothrophic Lateral Sclerosis Association, Greater Los Angeles Chapter	P.O. Box 565 Agoura Hills, 91376 PH: (818)865-8067 FAX: (818)865-8066	www.alsa.org/serving/ la_chapter.cfm	The greater Los Angeles Chapter of the ALS Association is the only non-profit health organization fighting ALS through research, patient support, information and public awareness.	People with ALS and their families	Greater Los Angeles area
ARC Of Southeast Los Angeles County	12049 Woodruff Ave. Downey, 90241 PH: (562)803-4606 FAX: (562)803-6550	www.arcselac.org	Serves 350 people with mental retardation every day and is committed to provide the opportunity to form and work toward goals through training and education.	People with mental retardation	Southeast Los Angeles County
Arthritis Foundation	4311 Wilshire Blvd. Suite 530 Los Angeles, 90010 PH: (323)954-5750 FAX: (323)954-5790	www.arthritis.org	Employment and educational services, exercise and self-management programs, literature about living and coping with arthritis, and quality of life programs, including PACE (People with Arthritis Can Exercise), WET (Water Exercise Together), and self-management courses specific to arthritis, osteoporosis, fibromyalgia, and lupus.	Children and adults who have any form of arthritis	Los Angeles area
Boredom Is A Cop-Out (BIACO)	N. Garey Ave. Pomona		Clubhouse for people with mental illness. Support groups and other support services, job training, job search and job placement assistance, information and referral	People with mental illness	Pomona area
Braille Institute of America	741 N. Vermont Ave. Los Angeles PH: (323)663-1111 FAX: (323)663-0867		Provides educational and rehabilitation services, free of charge. Services include talking books and Braille library, with books and magazines on tape; Braille and large print books; closed circuit magnifier (CCTV) demonstrations; on-line access.	Legally blind persons of all ageas	Southern California
Breast Cancer Foundation, Susan G. Komen-Los Angeles Affiliate	3527A N. Verdugo Rd. Glendale, 91208 PH: (818)957-6006		Breast cancer education, screening and treatment. Help stop the devastation now. Also hosts Komen Race for the Cure.	People with breast cancer and their families	Southern California
Build Regional Center	1323 Truman Glendale, 91340 PH: (818)898-0020		Employment services; vocational rehabilitation services; on the job training services; job preparation and assessment services.	People with disabilities	San Fernando Valley
Center for Independent Living, Westside	1290 Venice Blvd Los Angeles, 90066 PH: (310)390-3611 FAX: (310)390-4906	www.wcil.org	Advocacy; public benefits counseling; peer counseling; housing referrals; information and referral	Persons with significant disabilities	West Los Angeles area
Computer Access Center	6234 W. 87th St. Los Angeles, 90045 PH: (310)338-1597 FAX: (310)338-9319	www.cac.org	CAC assists and supports people with disabilities to achieve productivity, success and independence by giving them easy access to information and experience about enabling technology.	Children and adults with disabilities	Los Angeles area
Epilepsy Foundation of Los Angeles, Orange, San Bernardino and Ventura Counties	3600 Wilshire Blvd. Suite 920 Los Angeles, 90036 PH: (800)564-0445 (213)382-8602 (714)898-5312 FAX: (213)382-8602	www.epilepsy-socalif.org	Information, education, referrals, camp, and support services for people affected by epilepsy, and epilepsy education for the general public.	Individuals affected by epilepsy	Los Angeles, Orange, San Bernardino, Ventura Counties
Goodwill Industries of Southern California	342 San Fernando Rd. Los Angeles, 90023 PH: (323)223-1211 FAX: (323)343-9927	www.lagoodwill.org	Helps to achieve self-sufficiency through employment, job training and placement, education, vocational rehabilitation, counseling, and other services	Disabled and disadvantaged people	Southern California
House Ear Institute	2100 W. Third St. Los Angeles, 90057 PH: (213)483-4431 FAX: (213)483-8789	www.hei.org	Helps deaf and hearing impaired people, train surgeons worldwide to save and restore hearing, and pursue groundbreaking hearing and balance research.	Deaf and hearing impaired people, surgeons around the world	NA
Minority Aids Project	5149 W. Jefferson Blvd. Los Angeles, 90016 PH: (213)936-4949 FAX: (213)936-4973	www.geocities.com/ Hollywood/9930/map.html	M.A.P. deals with the prevention of HIV through education, prevention, provides services to those affected, effected by HIV. Provides food pantry, clothing bank, section-8 vouchers.	Minority persons with AIDS	Los Angeles area
National Federation for the Blind	741 N. Vermont Ave. Los Angeles, 90029 PH: (213)663-1111 x358	www.nfb.org	Public education; information and referral; supplies, appliances and other adaptive equipment; job opportunities; scholarships; literature and publications about blindness; advocacy services; development and evaluation of technology. Support for blind persons.	Blind persons	In-person services provided at main office at Braille Institute
The Wellness Community	200 E. Del Mar Suite 118 Pasadena, 91105 PH: (626)796-1083 FAX: (626)796-0601	www.thewellnesscommunity.org	Enhances health and well being by providing a professional program of support, education and hope.	People with cancer and their families	Southern California
Public In-Kind Support Services
ACCESS Services	725 Figueroa Los Angeles, 90017 PH: (800)827-0829		Provides paratransit and transportation services for people with disabilities.	People with disabilities	Los Angeles area
AIDS Health Care Foundation (AHS)	6225 W. Sunset Blvd. 16th Floor Los Angeles, 90057 PH: (213)462-2273		Provides quality services and affordable healthcare services to all people who are HIV affected. Provides advocacy in support of people with HIV infection and all persons in need of healthcare.	People who are HIV affected	Los Angeles area
AIDS Project Los Angeles	1313 N. Vine St. Los Angeles, 90028 PH: (323)993-1600	www.apla.org	Provides over 30 AIDS related services: case management, dental clinic, food bank, housing, mental health, legal and insurance counseling, buddy program and education.	People with AIDS	Los Angeles area
American Lung Association of Los Angeles County	5858 Wilshire Blvd. Suite 300 Los Angeles, 90036 PH: (323)935-5864	www.lalung.org	Promotes community lung health through pediatric asthma services, adult respiratory support groups, smoking cessation, clean air education, tuberculosis testing/education. Provides literature/referrals; fund research.	People with lung disease	Los Angeles County
Asian American Drug Abuse Program	53181 S. Crenshaw Blvd. Los Angeles, 90043 PH: (323)293-6284 FAX: (323)295-4075	www.adpla.org	Provides substance abuse treatment through 24 hour residential program, day treatment program, outpatient counseling, and programs for youth and families.	Asian Americans with substance abuse problems	Los Angeles area
Burbank Center for the Retarded	230 Amherst Burbank PH: (818)843-4907		A day activity program and extended day care.	Developmentally disabled/mentally retarded adults and school age children	Burbank
Children Affected by AIDS Foundation	6033 W. Centry Blvd. Suite 260 Los Angeles, 90045 PH: (310)258-0850 FAX: (310)258-0851	www.caa4kids.com	Distributes funds for the provision of direct care/services.	Children infected with HIV or affected by AIDS due to illness/death of parent	Los Angeles area
Easter Seals of Southern California	2721 W. Valley Blvd. Alhambra, 91803 PH: (626)281-9404 FAX: (626)281-9464	www.essc.org	Education, employment, housing, home care, recreation and transportation.	People with disabilities	Southern California
Five Acres, The Boys' and Girls' Aid Society of Los Angeles	760 W. Mountain View St. Altadena, 91001 PH: (626)798-6793 FAX: (626)797-7722	www.5acres.org	A therapeutic center for prevention and treatment of child abuse/neglect; residential programs for youth, family-based services, foster care, deaf services, non public school and parent education.	Children who have been abused	San Gabriel Valley
Foundation for the Junior Blind	5300 Angeles Vista Blvd. Los Angeles, 90043 PH: (323)295-4555 FAX: (323)296-0424	www.fjb.org	Provides programs and services for children and families that enable blind and visually impaired young people, including the multi-handicapped blind, to achieve independence and self-esteem. Programs include: Infant Family Program, special education programs, recreational and social development, residential camp, residential living, vocational independence and library services.	Blind and visually-impaired young people	Los Angeles area
Greater Los Angeles Council on Deafness, Inc. (GLAD)	2222 Laverna Ave. Los Angeles, 90041 TDD/Voice: (323) 478-8000 FAX: (323)550-4205	www.gladinc.org	Operating on a $5.0 million budget, GLAD serves more than 60,000 people annually. Services include: family health services; community advocate (CA) services to assist deaf and HOH people related to education, independent living skills, and advocacy; employment services; interpreter referral program (LIFESIGNS); information and referral; and housing for senior citizens (Deaf and Hard of Hearing senior citizens live in GLAD's building on the third floor and are provided with services and affordable rates).	People who are Deaf or Hard-of-Hearing (HOH)	Southern California
L.A. Gay Lesbian Center	McDonald/Wright Bldg. 1625 N. Schrader Blvd. Los Angeles, 90028 PH: (323)993-7400	www.gay-lesbian-center.org	Serves 15,000 clients per month with primary and HIV medical and mental health services, youth services, education, legal and cultural programming.	People who are gay and lesbian	Los Angeles area
Little People of America, Inc.	no mailing address available PH: (818)501-3304	www.geocities.com/ lpa_la/	Assists dwarfs with their physical and developmental concerns resulting from short stature. Provides medical, environmental, educational, vocational, and parental guidance; peer support; personal example; and networking with national and international growth-related and genetic-support groups. Membership is also available to relatives and interested professionals who work with short statured individuals.	People of short stature and their families	Los Angeles area
Mental Health Association	1336 Wilshire Blvd. Second Floor Los Angeles, 90017 PH: (213)413-1130 FAX: (213)413-1114	www.mhala.org	Provides comprehensive mental health and rehabilitation services to mentally ill people; develops permanent, affordable housing; and helps individuals find mental health care.	People with mental illness	Los Angeles County
National Multiple Sclerosis Society, Southern California Chapter	2440 S. Sepulveda Blvd. Suite 115 Los Angeles, 90064 PH: (310)479-4456 FAX: (310)479-4436	www.cal.nmss.org	Provides services and programs for people who have MS and their families and supports research into the cause, treatment and cure of multiple sclerosis.	People who have M.S. and their families and supports	Southern California
Shriners Los Angeles Hospital	3160 Geneva St. Los Angeles, 90020 PH: (213)388-3151 FAX: (213)387-7528	www.shrinershq.org/ shc/losangeles/	Accepts and treats children with routine and complex orthopedic problems, utilizing the latest treatment and technology available in pediatric orthopedics. Treatment is provided at no cost to patients or their families.	Children with orthopedic disabilities	Southern California
Tri-City Mental Health Services, Pomona	2008 North Garey Ave. Pomona PH: (909)623-6131		Mental health services, parenting, domestic violence (victims), dual diagnosis, sexual perpetrators, adult depression, anxiety groups, social skills groups, anger management	People with mental illness	Pomona, Claremont, San Dimas, Covina, West Covina, La Verne
United Cerebral Palsy	7630 Gloria Ave. Van Nuys, 91406 PH: (818)782-2211 FAX: (818)909-9106	www.ucpla.com	Direct service provider to approximately 600 severely disabled children and adults. 33 locations offer programs including housing, adult day care, and family support services.	Individuals with Cerebral Palsy and other developmental disabilities	Los Angeles, Ventura, Santa Barbara Counties
United States Adaptive Recreation Center	43101 Goldmine Dr. Big Bear Lake, 92315 PH: (909)584-0269	www.usarc.org	Provides accessible outdoor recreation opportunities and the instruction and resources required to participate in outdoor recreation.	Adults and children with disabilities	Southern California
Verdugo Mental Health Center and Glendale Family Service	1540 East Colorado Glendale, 91205 PH: (818)244-7257 FAX: (818)243-5431	www.cwire.com/ orgs/Verdugo.Mental.Health.Center/	Comprehensive managed behavioral healthcare organization providing psychiatric outpatient care for children and adults, outpatient substance abuse counseling and individual, family and group psychotherapy.	People with mental illness	San Fernando Valley
Xtreme Medical	7860 E. Imperial Hwy Suite A Downey, 90242 PH: (562)622-9953 FAX: (562)622-9945	www.xtrememedical.com	Provider of medical supplies for people who use wheelchairs, including urological supplies, custom wheelchairs, bath equipment, and other rehab equipment. Also provides information on wheelchair sports.	People who use wheelchairs	Not limited to a target area

NEWARK, NEW JERSEY

This section contains descriptions of the programs and policies for people with disabilities available in Newark, New Jersey. The profile includes programs that are available at the federal, state and local levels. The programs and policies described are divided into the following categories:

Public Income Support
Transitional Income Support Programs
Public In-Kind Support
Education, Training and Rehabilitation
Community-Based Programs and Policies
Private and Non-Profit Programs
Tax Policies

Federal and state programs are described in narrative form. Local programs are summarized in table form at the end of the section.

Public Income Support

Supplemental Security Income (SSI). Under the Federal Supplemental Security Income (SSI) Program, persons age 65 years and older, or those who are blind or disabled (including children), receive maintenance payments and supportive services, including emergency assistance and payment for burial. The services are administered by county welfare agencies. For eligible individuals, a state supplement is provided, increasing the net countable income up to the state standard for the respective living arrangement.

The Department of Policy and Standards in the New Jersey Division of Family Development administers the SSI program statewide. The Social Security Administration charges each state a fee for processing the state supplement to the SSI payment. This charge has increased gradually over the past few years, and is expected to continue to rise annually. Therefore, the state is pursuing the possibility of direct administration of the supplement.⁷⁰

Social Security Disability Insurance (DI). The DI program provides cash payments to individuals with work histories who have a medically determined disability expected to last at least 12 months or result in death, and who are unable to engage in substantial gainful activity (SGA). SGA is currently defined as the equivalent of working with earnings above $740 a month.⁷¹ The payment amount for a worker is based on his or her lifetime average earnings covered by Social Security. DI benefits replace a portion of the worker's prior earnings. DI beneficiaries with earnings above the SGA level are subject to a loss of their DI cash benefits, and after an extended period of work activity above the SGA level, a loss of the Medicare eligibility.⁷²

Temporary Disability Insurance. The New Jersey Department of Labor's Temporary Disability Insurance Program provides cash benefits to almost all workers covered under the Unemployment Compensation Law to ensure against wage loss when an individual is unable to work because of sickness and injury not caused by his or her job. New Jersey is one of five states that provides compulsory temporary disability insurance for workers.

The following three programs are included in New Jersey's Temporary Disability Benefits Law:

The State Plan. An individual who becomes disabled while employed or within 14 days of the last day of work in covered employment may be entitled to benefits under the State Plan. The maximum amount of benefits payable for each period of disability is one-third of the total wages in New Jersey covered employment paid to the claimant during the base year, or 26 times the weekly benefit amount, whichever is less. An individual must file his or her claim for benefits within 30 days of the state of the disability or risk losing some or all of the benefits.
The Private Plan. The Temporary Disability Benefits Law also permits employers to provide coverage through an approved Private Plan. The Plan may be insured by an insurance company, by the employer, union welfare, or labor-management welfare fund. A Private Plan must be at least equal to the State Plan in benefit amounts, eligibility requirements and duration of payments. Some Plans are more liberal than others. All Private Plans must be approved by the Division of Temporary Disability Insurance. The Private Plan insurer determines eligibility.
Disability During Unemployment. The State Plan and Private Plan provide coverage for individuals who become disabled while employed or within two weeks of the last day of work in covered employment. Additionally, there is a third program for those whose disabilities begin more than 14 days after the last day of work. This program is called "Disability During Unemployment" and is administered under the provisions of the Unemployment Compensation Law and the Temporary Disability Benefits Law. Individuals who claim benefits under this program must meet all the eligibility requirement of the Unemployment Compensation Law, excluding the ability to work.⁷³

Workers' Compensation. The director of the Division of Worker's Compensation is responsible for the administration of worker's compensation. An employee or their dependents are eligible to receive workers' compensation benefits for an injury or death arising out of and in the course of employment. The employer or their insurance carrier pays for necessary and reasonable medical treatment, loss of wages during the period of rehabilitation and benefits for permanent disability. The Division of Workers' Compensation provides an impartial forum to mediate and adjudicate disputes when parties are unable to amiably resolve their differences over entitlement to workers' compensation benefits. The Division's judicial and administrative staff executes this function.⁷⁴

Medical Benefits. All necessary and reasonable medical treatment, including hospitalization services and prescriptions related to the work injury are paid by the employer's insurance carrier or directly by the employer if they are self-insured.
Temporary Total Disability Benefits. If an injured worker is disabled for longer than seven days, the individual will be eligible to receive temporary total benefits at the rate of 70 percent their average weekly wage, not to exceed 75 percent of the Statewide Average Weekly Wage (SAWW) or fall below the minimum rate of 20 percent of the SAWW. These benefits are provided during the period when the worker is unable to work and is receiving medical care.

Benefits are typically terminated when the worker is authorized the return to work or if the individual has reached maximum medical improvement (MMI). Once the worker has reached MMI, additional treatment will no longer improve the medical condition of the injured worker. In some cases, the worker may be left with either partial permanent injuries or total permanent injuries.

Permanent Partial Benefits. Injured workers who suffer a job-related injury or illness that results in a partial permanent disability are eligible to receive benefits, and the amount of the benefit payments are determined by the nature of the disability. Losses are identified as either "scheduled" (i.e., loss of arms, hands, fingers, legs, feet, toes, eyes, ears or teeth) or "non-scheduled" (i.e., any area or system of the body not specifically identified in the schedule, such as the back, the heart, the lungs). Scheduled and non-scheduled losses pay varying benefits.
Permanent Total Benefits. A worker may be entitled to permanent total benefits when a work injury or illness prevents the worker from returning to any type of gainful employment. These weekly benefits are provided initially for a period of 450 weeks. Provided the injured worker is able to show that he or she remains unable to earn wages, these benefits may continue beyond the initial 450 weeks. Wages earned after 450 weeks offset the weekly computation in proportion to the income at the time of the injury. Permanent Total benefits are paid weekly and are based upon 70 percent of the average weekly wage, not to exceed 75 percent of the Statewide Average Weekly Wage (SAWW) or fall below the minimum rate of 20 percent of the SAWW. Permanent Total Disability is considered presumptive when the worker has lost two major members or a combination of members of the body such as eyes, arms, hands, legs or feet. Permanent total disability can also be the result of a combination of injuries that render the worker unemployable.⁷⁵

Transitional Income Support Programs

Transitional income assistance programs are designed to provide temporary assistance to unemployed or otherwise disadvantaged individuals and families. Typically, these programs have restrictions on the receipt of such benefits, in terms of eligibility and the amount of time an individual can receive payments.

TANF (WorkFirst New Jersey). New Jersey's Temporary Assistance for Needy Families (TANF) program, Work First New Jersey (WFNJ), is administered by the State Department of Human Services. This program began in October 1996. Through WFNJ, the state provides case assistance benefits, supportive services, and emergency assistance to families, including food, shelter, and clothing assistance. Eligible one or two-parent families will have at least one child under age 18 who is a full-time student in secondary school or a vocational school equivalent. Eligible parents and caretakers must agree to an enforceable Individual Development Plan including work program participation goals.

Under WorkFirst New Jersey, the state also provides supportive services to participants engaging in allowable work activities.⁷⁷ Supportive services include transportation expenses, "employment-directed activities or allowances," automobile-related expenses, and child care necessary for the family member to accept employment and remain employed. Moreover, WorkFirst New Jersey covers transitional assistance; the state provides one year of post-TANF child care benefits to families that have become ineligible for TANF due to increased earnings. The state also has a 24-month transitional Medicaid benefit. Thus, families no longer eligible for TANF due to increased child support or spousal support will have a four-month post-TANF period of Medicaid coverage.⁷⁸

In order to be eligible for TANF cash assistance in New Jersey, individuals must have countable assets below $2,000. A recipient's benefit equals the difference between countable income (income after specified deductions) and the maximum benefit. If countable income exceeds the maximum benefit, the family is not eligible for assistance. As under AFDC, family members receiving SSI benefits are excluded from the assistance unit. However, the SSI recipient's income and resources are not considered when determining eligibility or benefits for the rest of the family. New Jersey enforces a 60-month lifetime limit on assistance and a limit of no more than 24 months before a recipient must engage in an allowable work activity.⁷⁹ The maximum benefit for a family of three is $488.⁸⁰ In 1999, WorkFirst New Jersey expenditures totaled $11,101,472.⁸¹

WorkFirst and Welfare-to-Work. The departments of Human Services and Labor have established a unique partnership designed to use the resources of both departments, along with their contracted vendors and agencies, to provide services to welfare recipients under the WorkFirst New Jersey program. WorkFirst New Jersey participants receive mainstream labor exchange services with a focus on job search assistance. The New Jersey Department of Labor Welfare-to-Work initiative includes basic skills evaluation, referral services to employers and employability development services such as job training.

WorkFirst General Assistance. New Jersey's WorkFirst New Jersey General Assistance (WFNJ/GA) program provides temporary cash assistance and supports to single adults and couples without dependent children under rules similar to WFNJ/TANF. As of March 2001, approximately two-thirds of the 566 municipal welfare departments transferred administrative authority of GA to county welfare agencies. The remaining one-third of the municipal welfare departments administers their own GA programs.⁸²

Unemployment Insurance. Unemployment Compensation is an insurance benefit paid to workers who meet all the requirements of the New Jersey Unemployment Compensation Law. This includes only individuals who are unemployed through no fault of their own. The money to pay these benefits comes from payroll tax paid by employers and workers. Effective January 1, 2000, the taxable wage base is $21,200, subject to a worker tax rate of 0.425 percent. The maximum worker contribution is $90.10. To be eligible to receive unemployment benefits, one of the following conditions must apply: an individual must have worked at least 20 base weeks or alternative base weeks during the base period; or an individual must have been paid a certain minimum amount of money in covered employment. The minimum amount changes every year. In 2000, the amount was $9,100.

Some claimants who file for unemployment benefits are directed to register for work with the Employment Service. Recent Federal legislation requires all states to implement a program providing reemployment assistance to those claimants who are permanently laid off and will most likely benefit from them. Once selected to participate in this mandatory program, an individual must report to an orientation session and participate, or jeopardize his or her eligibility for unemployment benefits.

If an individual is laid off or terminated from a job while collecting Temporary Disability Benefits or Workers' Compensation, he or she may file for unemployment benefits using wages earned in an alternate base year set by the disability date.

Public In-Kind Support

In-kind support consists of goods and services that are provided free of charge. Examples of public in-kind support include food stamps, housing subsidies, and health insurance. In-kind supports function as income, because absent the supports recipients would need to purchase the goods or services on their own.

Medicaid. In New Jersey, Medicaid pays for hospital, doctor, prescription drug, nursing home and other health services for approximately 600,000 low-income children and pregnant women and people who are blind, elderly and disabled. Medicaid includes the following programs:

The New Jersey Care Program includes a special Medicaid Program for pregnant women and infants and a program for people who are aged, blind or disabled. The New Jersey Care Program for the Aged, Blind and Disabled provides Medicaid coverage to eligible people 65 or older, or blind, or permanently and totally disabled persons. The income standard is set at 100 percent of the federal poverty level. In New Jersey, Qualified Medicare Beneficiaries (QMBs) are eligible for benefits.
The Medically Needy component of the New Jersey Care Programs enables individuals whose income is too high to qualify for the regular Medicaid program to apply their excessive medical bills to spend down to the program's income limit.
HealthStart provides expanded maternal and child health care coverage to pregnant women and children under age two in New Jersey who are eligible for Medicaid benefits. The program provides an enhanced set of Medicaid benefits to eligible pregnant women during their pregnancy and for 60 days following delivery or the date the pregnancy ends. Children up to the age of two years are also eligible for enhanced health care services.
Early and Periodic Screening, Diagnosis and Treatment (EPSDT) is a comprehensive health program for Medicaid-eligible beneficiaries under 21 years of age. The program encourages regular medical and dental check-ups in order to prevent or identify problems before they become more serious. The program's services include periodic health check-ups, developmental and nutritional appraisal, vision and hearing screening, immunizations, dental referral for children three years of age and older, laboratory tests, health education, guidance, and diagnosis and treatment.
New Jersey Care 2000 is New Jersey's mandatory managed care program, implemented September 1995. Under New Jersey Care 2000, the state contracts with HMOs to provide a comprehensive set of Medicaid health care services. The program is mandatory for TANF and TANF-related Medicaid populations. The program is voluntary for the Division of Youth and Family Services (DYFS) Medicaid population and the SSI Medicaid population. Currently, New Jersey Care 2000 is operational in all 21 counties and there are 387,954 Medicaid beneficiaries enrolled in the program.⁸³
New Jersey KidCare provides a comprehensive package of health care services through health maintenance organizations (HMOs) for children and teens in New Jersey who do not have health insurance coverage. The services include well child and other preventive services, hospitalization, physician care, lab and x-ray services, prescription drugs, mental health services, vision and other services. Uninsured children 18 years of age and under may be eligible. Eligibility for NJ KidCare is based on the number of people in the family and the family's total income. The maximum income for a family of two is $28,840; the maximum income for a family of four is $58,450.

Additionally, there are several waiver programs administered by the Bureau of Home and Community Services (BHCS). The Division of Medical Assistance and Health Services (DMAHS) implemented these waivers by utilizing opportunities available under Section 1915(c) of the Social Security Act. Case management is mandatory under all 1915(c) waivers.

Waiver programs include the following:

AIDS Community Care Alternatives Program (ACCAP): This program is designed to serve disabled children and adults who are diagnosed as having AIDS and are in need of institutional care at home. Children under 13 diagnosed as HIV positive are also eligible for this program. In addition to all State Plan services, these individuals can receive eight additional services not permitted under regular Medicaid.
Model Waivers I, II, III: These programs provide community-based services for disabled children and adults who meet nursing facility level of care criteria. The cost of these services must not exceed the cost of institutionalization of the beneficiary.
Home and Community-Based Services Waiver for the Developmentally Disabled: This program is administered by the Division of Developmental Disabilities (DDD) with DMAHS providing oversight. The program provides community-based services for developmentally disabled individuals who meet certain levels of care criteria.
Home and Community-Based Services Waiver for Medically Fragile Children: Known as the ABC Waiver, this program is administered by the Division of Youth and Family Services (DYFS) in cooperation with staff from BHCS. The ABC Waiver program is designed to assist eligible children who are in need of nursing facility or hospital setting services in receiving the medical care necessary to remain in the community or return to it.
Traumatic Brain Injury (TBI) Waiver: This program is designed to provide community alternatives for brain injured individuals using nursing facilities or who are in the community and at risk for placement in nursing facilities. The population served primarily consists of young adults who are ambulatory with cognitive, behavioral and physical problems requiring supervised and supported care. Most individuals involved have either completed or would no longer benefit from a course of intensive rehabilitation.

Medicare. Medicare is a Health Insurance Program for individuals 65 years old and older; some people with disabilities under 65 years of age; and people with End-Stage Renal Disease (permanent kidney failure requiring dialysis or a transplant). The Health Care Financing Administration (HCFA) administers Medicare, covering 39 million Americans. Medicare has two parts:

Part A subsidizes care in hospitals, skilled nursing facilities, hospice, and some home health care. Beneficiaries with a sufficient earnings history do not pay a premium for Part A.
Part B helps pay for doctors, outpatient hospital care, and some other medical services not covered under Part A, including services of physical and occupational therapists, and some health services. Part B helps pay for covered medically necessary doctor services. Consumers are responsible for the monthly Medicare premium of $45.50. The cost of Part B may increase 10 percent for each 12-month period that an individual has Part B but did not take it. Enrollment in Part B is optional; the premium is usually deducted from Social Security, Railroad Retirement, or Civil Service Retirement payment.

Federal Food Stamp Program. New Jersey administers the federal Food Stamp program, enabling eligible WorkFirst New Jersey participants to receive cash benefits to help pay for food. Other individuals who may also be eligible for the Food Stamp Program include low-income individuals and families who are not on welfare and those who move off public assistance. The County Welfare Agency determines eligibility.

Electronic Benefits Transfer (EBT) System. The Division has created a "Families First" debit card through the Electronic Benefits Transfer System, funded with federal dollars from the TANF Block Grant. EBT enables welfare recipients to purchase food and receive case benefits. The system is time- and cost-effective for merchants because it eliminates the use of food coupons. Currently, the card excludes Medicaid benefits. However, Medicaid is looking to have benefits accessible by card also.⁸⁴

Home Energy Assistance Program. The Low Income Home Energy Assistance Program (LIHEAP) is a statewide program, funded by the federal Low-Income Home Energy Assistance Program Block Grant. The program is jointly administered by the New Jersey Department of Human Services, The Division of Family Development and the Department of Community Affairs. LIHEAP provides subsidies to help low-income families pay the cost of home heating bills. The gross monthly income of a family determines the family's eligibility for this program. An individual is eligible if he or she has a gross monthly income less than $1,030. A family of four is eligible the household gross monthly income is less than $2,088. Families may also be eligible for assistance with expenses related to medically necessary cooling costs.

In fiscal year 2000 (October 1, 1999-September 30, 2000), the federal allocation for the LIHEAP program was $41 million. The state also received supplemental federal funding totaling $20 million from the Emergency Contingency Fund.⁸⁵

Supportive Housing for Persons with Disabilities. The Supportive Housing for Persons with Disabilities program, administered by the Department of Housing and Urban Development, provides interest-free capital advances to nonprofit organizations that build, rehabilitate, or purchase rental housing to be used as supportive housing for persons with disabilities. The advance is interest free and does not have to be repaid, as long as the housing remains available for very low-income persons with disabilities, for at least 40 years.

Special Needs Programs⁸⁶

The Scattered Site AIDS Permanent Housing Program: The New Jersey Housing and Mortgage Finance Agency (NJHMFA), four nonprofit care providers, the Department of Health and Senior Services, the New Jersey Department of Human Services and the New Jersey Department of Community Affairs (DCA) created the Scattered Site AIDS Permanent Housing Program. The program provides a total of 34 units of permanent housing for persons with HIV/AIDS and their families, or approximately 125 people in five municipalities.
The Transitional Housing Revolving Loan Program: In 1989, the NJHMFA authorized $4 million in Agency reserves for the implementation of this program. The program was part of an inter-agency initiative between NJHMFA, the New Jersey Department of Community Affairs and the New Jersey Department of Human Services. The program makes a "0" percent construction loan and/or a permanent loan with an interest rate not to exceed "5" percent for a term ranging from five (5) years to a maximum of thirty (30) years for eligible projects. The program is targeted to homeless families and their children, homeless individuals including victims of domestic violence, persons with HIV/AIDS and other persons with special needs. Since the program's inception and through September of 1998, it has financed thirteen (13) projects with 228 units by committing approximately $4.5 million and generating $17 million in additional local, State, Federal and private resources.
The New Jersey Supportive Housing Program: This program is a cooperation of the New Jersey Department of Community Affairs (DCA), the New Jersey Department of Human Services (DHS), Division of Mental Health Services, the NJHMFA and the Corporation for Supportive Housing (CSH). It has been established to encourage non-profit developers and sponsors to develop high quality and affordable housing for individuals or families in New Jersey who are homeless or at risk of homelessness. This program is specifically targeting individuals or families in New Jersey where at least one person is coping with mental illness, substance abuse problems, HIV/AIDS, or other chronic medical and mental disabilities. A CSH New Jersey State Advisory Committee, including representatives of NJHMFA, DCA and DHS, is providing CSH with guidance and counsel regarding the program including its annual budget and program actions.
The Shelter-Plus Care Initiatives: NJHMFA has collaborated with community groups to use State and private grants of $1.9 million to administer the acquisition and renovation of 16 units (49 beds) of previously abandoned properties in Camden County to house and provide care for homeless individuals with serious, persistent and chronic mental illness and substance abuse problems. A consortium of health care providers, UMDNJ, South Jersey Behavioral Health Resource Inc. and the Steininger Center, has committed funds for the outreach and supportive services for the residents. In addition, a federal grant of $1.8 million has been received by the project for rental assistance over ten years.

The most recent Shelter Plus Care Initiative is a 32-unit project in the City of Paterson which is currently serving homeless persons and families with mental health and/or substance abuse problems and persons with HIV/AIDS. NJHMFA has worked with the Paterson Coalition for Housing, Inc. to provide $5.2 million in State, Federal and private resources to administer the acquisition and rehabilitation of the project. A consortium of local non-profits, in coordination with the sponsoring Agency, is providing outreach and supportive services to the clients. The Federal government has provided a grant in the amount of $4 million for rental assistance over ten years.
The Home of Your Own Program: The NJHMFA and the New Jersey Developmental Disabilities Council are collaborating to provide an opportunity for individuals with developmental disabilities to achieve home ownership. Under a grant provided by the New Jersey Developmental Disabilities Council, the NJHMFA has employed a program coordinator to carry out the mission and goals of the program. The mission and goals include, but are not limited to, fulfilling the grant commitment of placing individuals into a home ownership opportunity, researching and identifying the needs of people with disabilities and barriers to securing housing opportunities, developing a public outreach campaign, and developing a home ownership counseling program to address the needs which are identified for people with disabilities.
Home Ownership for Permanency Project: The NJHMFA and the Division of Youth and Family Services (DYFS) are partners in a demonstration project to help abused, neglected, abandoned or orphaned children, including those defined by DYFS as "Child(ren) with Special Needs," to achieve a permanent placement with relative caregivers or adoptive families. To the extent practicable, NJHMFA will make loans to eligible borrowers through the Agency's Home Buyer Program. Additional financial products under this demonstration include loans made completely from the Agency's allocation of funds for families that do not meet standard Agency underwriting guidelines but who are creditworthy, rehabilitation loans for families who currently own their own home but need to make necessary improvements to accommodate the newly adopted children or combination refinance and rehabilitation loans. One of the goals of the project is to maintain flexible underwriting guidelines in order to maximize the number of families served by this demonstration program.

The New Jersey Technology Assistive Resource Program (TARP). TARP is New Jersey's Assistive Technology project under the Assistive Technology Act of 1988. The project's purpose is to overcome system barriers and make assistive technology (AT) more accessible to individuals with disabilities throughout the state. AT includes devices and services created and used to help people with disabilities live more independently and productively. New Jersey TARP operates as an integral part of New Jersey Protection and Advocacy, Inc. TARP services include information and referral, advocacy services, legal representation, supporting access to used AT devices, presentations and outreach, and interagency coordination.⁸⁷

TTY Distribution Program. The Division of the Deaf and Hard of Hearing (DDHH) distributes free Text Telephones to qualified indigent Deaf and hard of hearing New Jersey residents. In the last seven years, the Division distributed 1,233 free TTY's. The program has given Deaf and hard of hearing people access to any telephone number in the world now that telephone relay services are required to be provided by states by Title IV of the ADA and regulated by the Federal Communications Commission. This program affords many individuals a greater opportunity to seek employment and become more independent.

Statewide Communication Access Network. The Division of the Deaf and Hard of Hearing (DDHH) houses New Jersey's primary sign language interpreter referral service which also handles requests for assistive listening equipment and captioning services. Sign language interpreters facilitate communications between Deaf people and individuals not familiar with American Sign Language. Requests for sign language interpreters are received by the Coordinators of Interpreter Referral Service (IRS). The coordinators contact individual vendor interpreters in the DDHH directory.

Currently, there is a greater general awareness of the communication assistance required by Deaf people and a shortage of qualified sign language interpreters. Therefore, the workload has increased significantly; the IRS has handled 1,796 requests during the last fiscal year. It also provides assistive listening equipment and captioning services which permit those with hearing loss to participate in the dialogue around them.

Education, Training and Rehabilitation

Workforce Investment Act Implementation. The Workforce Investment Act of 1998 (WIA) rewrites federal statutes governing job training programs, adult education and literacy, and VR. It is intended to provide a more coordinated, customer-friendly, locally driven workforce development system supported by an enhanced statistics system. Under WIA, states have oversight of the statewide system of Workforce Investment Boards (WIBs), administer the Employment Service (labor exchange), administer job training programs, and build and manage a statewide employment statistics system. The WIA also establishes individual training accounts similar to the New Jersey Workforce Development Partnership (WDP) individual training grants (see subsequent description). The challenge in implementing WIA is to coordinate and streamline all the partner agencies that provide the services and information critical for successfully matching workers with employers.⁸⁸

One Stop Career System Development. The Department of Labor received its One Stop implementation grant in 1995. The basic intent of One Stop is to integrate services, provide for customer choice and universal access, and operate in a performance-driven manner. For many years, the role of the Employment Service in New Jersey has focused on direct placements, that is, giving a job seeker a referral to an available job. Under the One Stop Career Center System, the department is transforming the Employment Service into a broker of information, job candidates, and job opportunities. The common thread for job seekers and employers is America's Talent Bank (ATB). Through the Talent Bank, the New Jersey Department of Labor (NJDOL) has the most comprehensive information available in the state on people looking for employment in New Jersey.

Reemployment Call Center Statewide Implementation. The Reemployment Call Center (RCC) enables customers to file their initial claims for unemployment insurance benefits by telephone. It uses a combination of interactive voice response technology and trained customer service representatives to reduce filing time and more quickly initiate the reemployment process. The Department of Labor intends to extend this program throughout New Jersey. As the practice of filing claims over the phone is implemented statewide, NJDOL will focus its resources on ways to use the claim information as the basis for a resume on America's Talent Bank in order to accelerate the reemployment process. The possible use of Internet technology for claim filing is also being explored.

Workforce Development Partnership Program (WDP). The Workforce Investment Act focuses on placing individuals in jobs, and then providing the necessary training to enable them to retain those jobs. The WDP program offers an array of job skills training, education and support services both to unemployed individuals and to employers needing to upgrade the skills of their workers. Qualified individuals can receive individual training and education grants, additional unemployment benefits while in training, and tuition waivers at public institutions of higher education. Employers can receive matching funds, through the Office of Customized Training, to pay for training designed to improve worker productivity, occupational safety and health and the company's market position. Plans for this year are to increase the number of workers trained through customized training grants and to coordinate the development of the WIA individual training accounts with the WDP individual grants to maximize the use of these funds, subject to available funding.

Workforce New Jersey Public Information Network (WNJPIN). The Workforce New Jersey Public Information Network is an on-line resource that provides information about job training opportunities and job listings. It contains a listing of jobs, job fairs, job search tools, and resource guides for job seekers. Students can research career descriptions, colleges, graduate schools, vocational/technical schools and financial aid information. Additionally, employers can post job openings, read on-line resumes, learn about business associations as well as unemployment and disability information. The site provides links to the State Employment and Training Commission, Job Training Partnership Act (JTPA) Administrative Information, New Jersey Department of Labor homepage, One-Stop Career Sites, information on county programs, and labor market information.

Northeast Disability and Business Technical Assistance Center. The Northeast Disability and Business Technical Assistance Center (NeDBTAC) is a regional center serving New York, New Jersey, Puerto Rico and the Virgin Islands. The Center provides training, technical assistance, information and referral on the Americans with Disabilities Act (ADA). NeDBTAC is authorized by the National Institute on Disability and Rehabilitation Research (NIDDR) to provide information, materials, and technical assistance to individuals and entities covered by the ADA. The Center is funded by the US Department of Education's NIDRR.⁸⁹

Vocational Rehabilitation (for the Blind and Visually Impaired). This program assists individuals who are blind or visually impaired develop, acquire or update skills to assist them in securing and maintaining suitable employment. This may include working in the competitive labor force, operating their own business, supportive employment, or managing their own home. VR services include vocational evaluation, counseling, guidance and training; job placement; post-employment services; college counseling/support; vending facility and business enterprise programs; high school transitional services; special services for multi-handicapped persons; and training at the Joseph Kohn Rehabilitation Center in New Brunswick. Additionally, CBVI consumers can request the following services through their primary caseworker: issuance of theater passes; handicapped parking placards; income tax certification letters; Division Of Motor Vehicles identification card; self-help peer groups; community companions or volunteers; referral to community-based programs and services; reduced fare applications for public transportation; low and high technical aids and appliances; complaint resolution; and consumer advocacy.

Educational Services. The Commission for the Blind and Visually Impaired (CBVI) provides educational services to eligible individuals from birth through their high school years and their families. These services are designed to allow students who are visually impaired to participate fully with other students in regular classroom activities. Services include: Institutional and day training center programs; services to deaf-blind children; counseling and training for families of infants and preschool children; tutoring in special areas; instruction in independent travel and daily living skills; reader services; summer camp for children and teenagers; assistance with adaptive equipment; special books, materials and technical aids from CBVI's Meyer Instructional Resource Center; vision restoration and/or enhancement of the use of remaining vision.

Community-Based Programs and Policies

Independent Living. This program enables persons who are blind or visually impaired to lead a full and productive life and to aid them in adapting to their vision loss. Services of this program include: social casework; in-home nursing services training (e.g. self administering medications and insulin shots); in-home instruction in daily living skills; instruction for independent travel and orientation to the home community, work or school environment; child care training; instruction in communication methods; referral to community resources; and training at the Joseph Kohn Rehabilitation Center in New Brunswick.

Prevention Services. This program is designed to save sight and restore vision whenever medically possible. The Commission for the Blind and Visually Impaired conducts and sponsors a variety of educational programs and eye health screening throughout the State to detect vision problems. Services include mobile eye examination units; vision screening for preschool and school-age children; eye health nursing; on-site screening at institutions and in communities; special diabetic outreach program; and other specialized eye screening programs which target historically underserved populations (i.e. minorities, the elderly, migrant farm workers, etc.)

Community Services. The Division of Human Services purchases community mental health services through contracts with approximately 125 not-for-profit provider corporations. The Division's programs include the following programs:

Emergency Screening Services to provide crisis stabilization and to determine need for involuntary commitment.
Outpatient Services to provide ambulatory community mental health services such as periodic therapy and counseling, medication administration and monitoring.
Partial Hospitalization and Partial Care, the most intensive ambulatory community mental health service provides day treatment and psycho-social rehabilitation services.
Residential Services in community residences including group homes, supervised apartment and family care homes.
Integrated Case Management providing outreach services to engage, support, and integrate individuals with serious mental illness into their community and to facilitate their access to and use of available resources to maximize their independence.
Programs of Assertive Community Treatment (PACT) providing comprehensive, integrated rehabilitation, treatment and support services to those most challenged in coping with serious and persistent mental illness within a multi-disciplinary service delivery team approach.
Systems Advocacy to provide legal and companionship services and self-help centers.
Other services including supported employment, intensive family support services for families of persons with mental illness, services to the homeless mentally ill, and services to individuals with alcohol or drug abuse in addition to mental illness.

Through community-based programs, the Division of Human Services provided an estimated 257,600 episodes of care in FY 2000 at a cost of about $207 million.

The Family Support Act. Signed into law March 29, 1993, the Family Support Act made the Division of Developmental Disabilities responsible for creating a system of family support for people with developmental disabilities. This program includes cash subsidies; communication and interpreter services; counseling and crisis intervention; day care; equipment and supplies; home and vehicle modifications; homemaker assistance; medical and dental care; personal assistance services; respite care; self-advocacy training; therapeutic or nursing services; and voucher services.

Additionally, the Family Support law created Regional Family Support Planning Councils. The Councils make recommendations to a Family Support Coordinator, under the direction of the New Jersey Developmental Disabilities Council.

Private and Non-Profit Programs

Project ABLE (Able Beneficiaries Link to Employers). Project ABLE is a national resume bank that provides employers an easily accessible applicant pool of qualified job-ready individuals who are interested in working. The resume bank operates through the joint efforts of the Office of Personnel Management (OPM), SSA, RSA, the VA, and state VR agencies. The program is designed to provide employers access to quality human resources while providing training and employment services to eligible people with disabilities.⁹¹

The Arc of New Jersey. The Arc of New Jersey is a statewide, private nonprofit advocacy organization designed to provide a better quality of life for people with mental retardation and their families. The organization consists of a state office and nineteen local county chapters; it is affiliated with The Arc, a national organization on mental retardation with 1,200 chapters nationwide. The Arc's projects including Project HIRE.

Jewish Vocational Services (JVS). Jewish Vocational Services is a private, non-profit organization that provides VR services for persons with disabilities among its services. The Joseph L. Weinberg Vocational Rehabilitation Center, accredited by the Commission on Accreditation of Rehabilitation Facilities, provides comprehensive VR services to individuals with disabilities age 16 and older who, because of their disability, are unable to find or to sustain employment. Services include vocational evaluation, vocational counseling, work adjustment training, specialized skills training programs, office and computer skills training, home health aide training, comprehensive job placement program for integrated employment, and extended employment. Additionally, the School to Work Transition Program provides specialized services for students with disabilities and the Work Center on Aging offers services for older workers with disabilities.⁹²

Easter Seals New Jersey. The Easter Seals New Jersey is a non-profit organization that focuses on eliminating the physical, social and economic barriers so that people with disabilities may participate in their communities with equality, dignity and independence. The organization's programs include the following:

The Personal Assistant Services program serves individuals with physical disabilities between the ages of 19 and 65 living in New Jersey. By allowing consumers to function more independently within the community, the program enables individuals to remain in or move to the least restrictive living arrangement possible. The PAS program can provide assistance with household chores, errands, shopping and personal care. Thus, the program enables persons with disabilities to complete their education, to seek and maintain employment, and to conduct household activities.
Behavioral Health Services provides quality residential services, intensive case management, supportive services, and intensive family support services. Services focus on teaching life skills and encouraging independent living.
Social Services provide assistance to people with economic disadvantages. These services include linkages, a transitional housing service and intensive case management services for homeless families; and parent support services to families who have children residing in out-of-home placement and who have a plan for reunification.
The Equipment Loan Services provides medical equipment such as wheel chairs, canes, shower chairs, walkers and hospital beds to people with disabilities.

Tax Policies

Earned Income Tax Credit. New Jersey's Earned Income Tax Credit (EITC) was proposed in the fiscal year 2001 budget message. The proposed credit will be phased in over the next four years and will pay $823 to every working family earning just the minimum wage. The EITC is expected to serve more than 200,000 families.

Low-Income Housing Tax Credit. Congress created the Low-Income Housing Tax Credit (LIHTC) to compensate for the high costs of constructing and rehabilitating apartments that lead to rent rates set higher than low income families can afford. Nationwide, the LIHTC leverages about $7 billion in investment each year to produce approximately 75,000 apartments that rent at prices affordable to low income families and the elderly. All apartments are dedicated at restricted rates for 30 years or more to families who earn 60 percent or less of area median income. Currently, 59 percent are dedicated for periods longer than 30 years, and one in six is permanently dedicated to low-income use.

In 2000, the U.S. Treasury Department allocated $10,143,764 to New Jersey for the LIHTC program.

Policies and Programs Available in Newark for People with Disabilities
Organization	Contact Information	Web Site	Program/Services	Target Group	Target Area
Private and Non-Profit Programs
Alliance for Disabled in Action, Inc. (ADA UNION)	65 Jefferson Ave. Elizabeth, 07201 PH: (908)289-2551 FAX: (732)738-4416	www.adacil.org	Self help; advocacy; support services; information and referral; peer support; workshops and seminars; consumer action committees; assistive technology network; volunteer program; social/recreational activities; NJ Client Assistance Program (CAP).	Persons with disabilities	Union County
ARC of New Jersey	985 Livingston Ave. North Brunswick, 08902 PH: (732)246-2525 FAX: (732)214-1834		Advocacy & Referral Program (A&R); information resource and referral; direct advocacy	People with developmental disabilities and related neurological disorders	Statewide, Union County
ARC of Union County	1225 S. Ave. Plainfield, 07062 PH: (908)754-5323 FAX: (908)754-2330				Statewide, Union County
Catholic Charities, USA New Jersey Chapter	288 Rues Ln. East Brunswick, 08816 PH: (732)324-8200 FAX: (732)826-3549		Counseling, emergency financial assistance, job training, services to persons with HIV/AIDS, social policy advocacy, housing assistance.	People and families in need	Statewide Offices serving Newark and New Brunswick
Catholic Community Services	1160 Raymond Blvd. Newark, 07102 PH: (973)596-3971 FAX: (973)623-5473	www.ccsnewark.org	Addictions and mental health services; adoptions and pregnancy counseling; AIDS/HIV programs and services; children and family services; employee assistance; senior services; emergency food and nutrition.	New Jersey residents	Bergen, Essex, Hudson, and Union Counties
Community Access Unlimited	80 West Grand St. Elizabeth, 07202 PH: (908)354-3040 FAX: (908)354-2665	www.caunj.org	Community support; recreation and education; home share; transitional services; case management and employment; parent enrichment; supervised apartment; supported living apartment; transitional opportunities; information and referral.	People with disabilities, transitioning youth, and Union County residents with housing needs.	Union County
Community Health Law Project	185 Valley St. South Orange, 07079 PH: (973)680-5599 FAX: (973)275-1175	www.chlp.org	Serves legal needs of persons with disabilities and the elderly.	Individuals with disabilities and the elderly	Provides Regional services
Healthcare Foundation of New Jersey	75 Livingston Ave. Roseland, 07068 PH: (973)535-8200 FAX: (973)535-8393		Grant making priorities are to alleviate the suffering of the most vulnerable members of the community, improve the health and well-being of children and families, and address the unmet healthcare needs of vulnerable individuals, by encouraging clinical medical education and research especially as they relate to humanism and compassion in the delivery of medical care.	Individuals and families in Newark, Essex	Newark and Essex County
Heightened Independence and Progress (HIP)	131 Main St. Suite 120 Hackensack, 07601 PH: (201)996-9100 FAX: (201)996-9422		Advocacy; public benefits counseling; peer counseling; housing referrals; information and referral	Persons with significant disabilities	Bergen County
JESPY House	65 Academy St. South Orange, 07079 PH: (973)762-6909 x205	www.ujfmetrowest.org/ community/special.html	Independent living skills training; vocational assistance; housing assistance; recreational activities.	Young adults with developmental disabilities	South Orange
Monday Morning Project (NJ DD Council)	P.O.Box 700 20 W. State St. Trenton, 08625 PH: (609)292-3453 FAX: (609)292-7114		Self help; grassroots movement; advocacy networks throughout state, advocacy, works government officials on public policy issues of importance.	PWDs, families and friends.	Statewide Local groups in Newark, Orange, East Brunswick
New Jersey Association of the Deaf-Blind, Inc.	24 K Worlds Fair Dr. Somerset, 08873 FAX: (732)805-3088		Deaf-Blind, advocacy, case management, education, employment supports, training, family supports, information and referrals.	Deaf-Blind and families	Somerset
Somerset New Jersey Self-Help Clearinghouse, Saint Clare's Health Services	25 Pocono Rd. Denville, 07834 PH: (973)625-3037 FAX: (973)625-8848	www.njshc.org	The New Jersey Self-Help Clearinghouse maintains a database on over 4,000 no-fee mutual help group meetings within the State for different illnesses, disorders, disabilities, addictions, abuse histories, bereavement situations, family, caregiver concerns, emotional problems, parenting, unemployment, and many other stressful life problems. It has information on over 800 national self-help organizations and group models, and hundreds of toll-free telephone help lines. They also provide training workshops, fill speaking engagements, and provide guides and handouts on how to develop a group. The Web page Mental Health link provides information on self-help meetings held every day.	Persons who share common problems or life situations.	Statewide Offices based in northern NJ close to Elizabeth
Education, Training, and Rehabilitation
Arthritis Foundation, New Jersey Chapter	200 Middlesex Turnpike Iselin, 08830 PH: (732)283-4300; FAX: (732)282-4633	www.arthritis.org	Employment and educational services, exercise and self-management programs, literature about living and coping with arthritis, and quality of life programs, including PACE (People with Arthritis Can Exercise), WET (Water Exercise Together), and self-management courses specific to arthritis, osteoporosis, fibromyalgia, and lupus.	Children and adults who have any form of arthritis	Northern NJ Direct services provided in Newark and Elizabeth
Council for Airport Opportunity	972 Broad St. 7th Floor Newark, 07012 PH: (973)622-4537		The Port Authority along with the airlines and service companies operating at Kennedy, LaGuardia and Newark Airports supports this non-profit organization with offices in Queens and Newark. The purpose of the CAO is to provide recruitment and job placement services in the aviation industry for local New York and New Jersey residents. The CAO also performs job readiness training and operates summer internship programs.	Residents of Newark and surrounding areas	Newark
Cystic Fibrosis Foundation	1719 Rte 10 Suite 225 Parsippany, 07054 PH: (973)605-2525 FAX: (973)605-2929	www.cff.org	Speakers bureau available to the general public, referrals to local hospitals, location of rehabilitation equipment for young adults, support groups, patient services, fund raising for research and support.	Persons with cystic fibrosis, their families and support providers.	Bergen, Essex, Union, other Northern NJ Counties; Cystic Fibrosis Centers at University Hospital, Newark and Monmouth Medical Center, Long Branch
Disability Information Awareness & Living (DIAL)	56 Mount Prospect Ave. Bldg. C Clifton, 07013 PH: (973)470-8090 FAX: (973)470-8171		Information and referral, peer counseling, support groups, friendship hotline, deaf outreach program, advocacy, independent living skills training, community education/minority outreach, recreation and social activities.	Persons with disabilities	Essex County and City of Newark
Epilepsy Foundation of New Jersey	429 River View Plaza Trenton, 08611 PH: (609)392-4900 FAX: (609)392-5621	www.efnj.com	Information and referral, counseling, support groups, individual and legislative advocacy, case management, employment services, emergency medication program, respite care, parent to parent telephone linkage, family stipends, social security linkage, newsletters, Kids-on-the-Block puppets, professional education and college scholarships.	Persons with epilepsy or other developmental disabilities	Statewide Livingston office provides direct services in Newark area
Essex County College, Work First Program	303 University Ave. Newark, 07102 PH: (973)877-3592 FAX: (973)877-3591	www.essex.edu	Educational and career counseling, academic preparation for college credit courses, special services to persons with disabilities, public access to the computerized One-Stop self-help, Work First New Jersey program to assist welfare recipients in obtaining employment.	New Jersey employers and job seekers	Statewide, Essex
First Occupational Center	7 Gleenwood Ave. East Orange, 07017 PH: (732)477-7603 FAX: (732)477-7603		Employment training and placement disabled and welfare-to-work, home health aid, janitorial services.	People with disabilities and individuals in Welfare-to-Work programs	Elizabeth and Newark
La Casa de Don Pedro	86 Broadway Newark, 07104 PH: (973)485-0701 FAX: (973)483-5284	http://buscapique.com/ latinusa/buscafile/este/lcasapedro.htm	Access to computers for conducting job searches and for posting resumes; network of social services.	Participants in WorkFirst NJ and other employment training programs; NJ residents seeking social services	Newark
Mayor's Office on Employment & Training	55 Liberty St. Newark, 07104 PH: (973)733-4820	www.ci.newark.nj.us	Access to One-Stop computers for posting resumes and searching for jobs; employment counseling; job readiness preparation; programs for workers who have been laid off.	Newark
New Jersey Brain Injury Association	1090 King George Post Rd. Suite 708 Edison, 08837 PH: (732)738-1002 FAX: (732)738-1132	www.bianj.org	Information, advocacy and support; chartered association of National Brain Injury Association. Services: clearinghouse of resources and information; network of peer support groups; specialized brain injury rehabilitation programs.		Edison
Urban League of Essex County	504 Central Ave. Newark, 07107 PH: (973)624-9535 x105 FAX: (973)624-9597	www.nul.org/newark.htm	Career counseling, job readiness, employment advocacy and referrals, job discrimination referrals, educational referrals and agency advocacy
In-Kind Support Services
Community Options, Inc. of Northern New Jersey	56 Fanny Rd. Suite C Boonton, 07005 PH: (973)257-1222 FAX: (973)257-1223	www.comop.org	Community-based options for residential and employment support services; services offered include: housing, in-home support, employment services, volunteer opportunities, and advocacy. Employment programs focus on individual competitive jobs, community volunteer placements and employment opportunities in a variety of entrepreneurial businesses.	Individuals with disabilities living in service area	Passaic, Bergen, Morris, and Warren Counties
Private and Non-Profit Programs
COPE Center, Inc.	104 Bloomfield Ave. Montclair, 07042 PH: (973)783-6655 FAX: (973)783-1658		Provides individual, group and family counseling, HIV testing, alcohol and substance abuse treatment and counseling.	People with alcohol and substance abuse disabilities	Essex County and City of Newark
Disabled Information Awareness & Living (DIAL), Newark Community Outreach Program	193-211 Hunterdon St. Newark, 07103 PH: (973)242-0637 FAX: (973)242-8990		Information and referral, peer counseling, support groups, friendship hotline, deaf outreach program, advocacy, independent living skills training, community education/minority outreach, recreation and social activities.	Persons with disabilities	Newark
Easter Seals Society of NJ, Inc.	1 Kimberly Rd. East Brunswick, 08816 PH: (732)257-6662 FAX: (732)257-7373	www.eastersealsnj.org	Education, employment, housing, home care, recreation and transportation.	NJ residents with all types of disabilities	Statewide, East Brunswick
Eastern Paralyzed Veterans of America	500 Morris Ave. Springfield, 07081 PH: (800)795-3617	www.apacure.com	Public education; information and referral; job opportunities; advocacy services.	Paralyzed veterans
Friends of the Deaf and Hard of Hearing	563 Riverside Dr. Elizabeth, 07208 PH: (908)351-3036 FAX: (908)289-3316		Provides packaged food to the deaf and hard of hearing and their families.	Deaf and hard of hearing individuals	Statewide Based in/serves Elizabeth and Newark areas
Hyacinth AIDS Foundation	78 New St. 2nd Floor New Brunswick, 08901 PH: (732)246-0204 FAX: (732)246-4137	www.hyacinth.org	HIV testing and counseling; support groups; housing services; emergency financial services; buddy services; legal; case management; advocacy.	Persons living with HIV/AIDS	Home office is in New Brunswick; regional office in Newark
Kessler Institute for Rehabilitation	1199 Pleasant Valley West Orange, 07052 PH: (973)731-3600 FAX: (973)243-6994	www.kessler-rehab.com	Medical rehabilitation services, physical and occupational therapy, career guidance; placement services, case management, psychological services.	Individuals with physical disabilities	Open to anyone. Institute is part of Kessler Rehabilitation Corporation, headquartered in West Orange
Muscular Dystrophy Association	1030 St. Georges Ave. Avenel, 07001 PH: (732)750-2333		Provides a range of individually designed support services, including therapy, information, equipment loans and counseling. Initial diagnostic testing whether or not a positive diagnosis is made and follow-up care at MDA clinic; home physical and occupational therapy, orthopedic equipment wheelchairs, a summer camp program and transportation to clinic and brace fittings.	All persons with muscular dystrophy and neuromuscular disorders, their families and their care/support providers	Northern and Central New Jersey
National Multiple Sclerosis Society	14 Ridgedale Ave. Suite 101 Cedar Knolls, 07927 PH: (973)984-6667		Short term counseling for M.S. clients and their families. Medical equipment loans, information and referral services, support groups, educational and recreational activities. Support groups are offered in each county with various emphases. Respite Program, Getaway Weekend, campership grants, air conditioner exchange program and a swim program. Union County has support groups for persons with M.S. and for caregivers.	People with M.S. and their families	Warren, Sussex, Morris, Hudson, Union and Essex Counties
New Community Corporation	201 Bergen St. Newark, 07103 PH: (973)824-7994 FAX: (973)824-6545	www.newcommunity.org	NCC seeks to fulfill its mission by providing dignified and affordable housing; a safe, secure neighborhood; creative education programs; quality health care; social services; community arts; and neighborhood economic opportunities.	Residents of Newark	City of Newark
New Jersey State Commission for the Blind & Visually Impaired	153 Halsey St. 5th Floor Newark, 07101 PH: (973)648-2324 FAX: (973)648-7364	www.humanservices/ dhsbvil.html	Social casework, in-home instruction in daily living skills, instruction for independent travel and orientation to the home community, work or school environment, child care training, instruction in communication methods, referral to community resources and training at the Joseph Kohn Rehabilitation Center in New Brunswick.	Individuals with severely restricted vision	Statewide Direct services provided at offices in Newark and New Brunswick
New Jersey Transit Access Link	1 Penn Plaza E. Newark, 07105		ADA Paratransit service providing curb to curb service for eligible people with disabilities. Service is provided during the same hours and days and at the same fares as the local bus network. A trip qualifies for Access Link Service if the pick-up and drop-off points fall within ¾ of a mile on either side of an eligible local fixed bus route. Access Link "shadows" local fixed route buses.In addition, each of the 21 counties in New Jersey provide county-based paratransit service for senior citizens and people with disabilities. NJ TRANSIT assists in the provision of accessible services by the counties and non-profit agencies through the administration of state and federal funds.	Eligible people with disabilities	Statewide County
Union County Paratransit Unit	79 W. Grand St. Elizabeth, 07202 PH: (908)659-5000 FAX: (908)659-7444		Provides specialized curb to curb transportation, Monday through Friday between the hours of 7:00 am to 5:30 pm to medical, mental health, dental, hospitals and clinic appointments, nutrition sites, employment, educational sites, recreation and shopping activities. Evening and Saturday transportation is available by appointment.	Age 60 and over, permanently or temporarily disabled or economically disadvantaged county residents	Union County

SEATTLE/TACOMA, WASHINGTON

This section contains descriptions of the programs and policies for people with disabilities available in Seattle/Tacoma, Washington. The profile includes programs that are available at the federal, state and local levels. The programs and policies described are divided into the following categories:

Public Income Support
Transitional Income Support Programs
Public In-Kind Support
Education, Training and Rehabilitation
Community-Based Programs and Policies
Private and Non-Profit Programs
Tax Policies

Federal and state programs are described in narrative form. Local programs are summarized in table form at the end of the section.

Public Income Support

The state of Washington supplements the federal benefit level with state funds, known as the SSI state supplement. Persons deemed eligible for SSI receive cash assistance based on the combined federal and state supplement benefit levels, minus countable income. Exhibit 4 shows the federal, state and combined benefit levels for King and Pierce County, the locations of Seattle and Tacoma, respectively.⁹³

Exhibit 4. SSI Benefit Levels, King and Pierce Counties
	Federal Benefit Level	State Supplemental Benefit Level	Combined Federal/ State Benefit Level
Individual	$500.00	$26.00	$526.00
Individual + One	$750.00	$21.00	$771.00
Couple, both Eligible	$751.00	$21.00	$772.00
Couple w/One Essential Person	$751.00	$21.00	$772.00
Couple + One	$751.00	$21.00	$772.00
Coupling including Ineligible Spouse	$500.00	$167.20	$667.20

During fiscal year 1998, the SSI program served 109,321 individuals⁹⁴ in the state of Washington. The state's fiscal year 1998 grant total was $397,385,000.

Social Security Disability Insurance (DI). The DI program provides cash payments to individuals with work histories who have a medically determined disability expected to last at least 12 months or result in death, and who are unable to engage in substantial gainful activity (SGA). SGA is currently defined as the equivalent of working with earnings above $740 a month.⁹⁵ The payment amount for a worker is based on his or her lifetime average earnings covered by Social Security. DI benefits replace a portion of the worker's prior earnings. DI beneficiaries with earnings above the SGA level are subject to a loss of their DI cash benefits, and after an extended period of work activity above the SGA level, a loss of the Medicare eligibility.⁹⁶

Temporary Disability Insurance.⁹⁷ Under the state's Industrial Insurance Act, the Washington State Fund provides no-fault accident and disability coverage for nearly all workers. This insurance is designed to cover medical expenses and to partially compensate for lost wages while a worker recovers from his or her injuries. Industrial insurance benefits are provided by the Washington State Fund, administered by the Department of Labor and Industries. Coverage by the Washington State Fund includes an entitlement to medical coverage and other services necessary for the treatment of workplace injuries or occupational diseases. If the claim is accepted by the Department of Labor and Industries, all doctor, hospital, surgical, and related costs for treatment will be paid.

Permanent Partial Disability.⁹⁸ If an injury or occupational disease causes permanent loss of bodily function, the claimant is paid a permanent disability award. The amount received for any physical loss is established by the Legislature and does not include compensation for pain and suffering.

Workers' Compensation. The director of the Division of Worker's Compensation is responsible for the administration of worker's compensation. An employee or their dependents are eligible to receive workers' compensation benefits for an injury or death arising out of and in the course of employment. The employer or their insurance carrier pays for necessary and reasonable medical treatment, loss of wages during the period of rehabilitation and benefits for permanent disability. The Division of Workers' Compensation provides an impartial forum to mediate and adjudicate disputes when parties are unable to amiably resolve their differences over entitlement to workers' compensation benefits. Division's judicial and administrative staff executes this function.⁹⁹

Service connected disability
Compensation and pension.
Educational Benefits
Insurance
Vocational Rehabilitation
VA Home Loans
Death Compensation
Insurance
Transition to Civilian Life

Transitional Income Support Programs

Transitional income assistance programs are designed to provide temporary assistance to unemployed or otherwise disadvantaged individuals and families. Typically, these programs have restrictions on the receipt of such benefits, in terms of eligibility and the amount of time an individual can receive payments.

Temporary Assistance for Needy Families (TANF) (Welfare to Work). Temporary Assistance for Needy Families (TANF) is a federal program that replaced the Aid for Dependent Children (AFDC) program under federal welfare reform legislation. TANF provides block grants to states that are used to provide assistance and work programs for needy families. Washington enacted the Washington Temporary Assistance for Needy Families Act (ESHB 3901), creating the WorkFirst program in order to complete implementation of the federal welfare reform legislation. It uses federal TANF funds and state funds to develop and deliver services to needy families. The state's welfare caseload was 56,255 in May 2000.¹⁰¹

WorkFirst. WorkFirst is Washington State's welfare reform program that helps people in low-income families find jobs, keep their jobs, find better jobs and become self-sufficient. Four state agencies jointly carry out the program: Department of Social and Health Services; the Employment Security Department; State Board for Community and Technical Colleges; and the Department of Community, Trade and Economic Development. In addition, local employers, tribal governments, Private Industry Councils, transportation entities and community-based, nonprofit organizations are key partners in planning and providing services to WorkFirst participants.

WorkFirst is the major cash assistance program providing cash benefits and services for low-income families with (or expecting) children in the state of Washington. There is no legal entitlement to WorkFirst benefits. Effective July 1, 1999, The WorkFirst exemption for parents of infants was changed from 12 months to three months. Additionally, pregnant women in their first two trimesters now receive TANF benefits instead of state-funded General Assistance. Pregnant women and parents of infants older than three months are now required to participate in WorkFirst activities. Based on the needs of the individual family and the results an assessment, families' activities can range from medical treatment to parenting classes to job search and employment. Furthermore, major features of WorkFirst include childcare subsidies, job readiness skill and job search workshops, pre-employment training and on-the-job training.

Additionally, Washington State makes available a diversion program to families who are otherwise eligible for TANF assistance. The Diversion Cash Assistance (DCA) program is designed to provide brief, emergency assistance and prevent some families in crisis from developing a dependency on WorkFirst assistance. Diversion assistance is available once in each 12-month period for each adult applicant, and may not exceed $1,500 for each instance.

DCA may include cash or vouchers in payment for child care, housing, transportation-related expenses, food, medical costs for the recipient's immediate family, and employment-related expenses which are necessary to keep or obtain paid unsubsidized employment.

On-Going Additional Requirements (AR). WorkFirst families containing an aged, blind, or disabled member, may qualify for special need items or additional requirements under WorkFirst program rules. On-going additional needs are added to the monthly TANF cash grant.

Consolidated Emergency Assistance Program (CEAP). Low-income families, with monthly income below 90 percent of the WorkFirst payment standard with a child under 18 years old, may qualify for emergency cash aid to help meet their basic living needs. Basic needs include, but are not limited to, food, shelter, clothing, minor medical expenses, utilities, and household maintenance supplies. Assistance is limited to 30 consecutive days within any 12-consecutive-month period.

Additional Requirements - Emergent Need (AREN). WorkFirst families who experience a short-term expense caused by an emergency may qualify for additional cash assistance (e.g. to prevent eviction, obtain housing, or prevent a utility shut-off). Payment is limited to the least amount necessary to get the family through the emergency and is usually paid directly to a third party, such as the utility company.

State Family Assistance (SFA).¹⁰² This program is available to clients who are ineligible for TANF for specific reasons. Individuals not eligible for TANF under the following conditions are eligible for SFA.

An individual is a qualified alien and has been in the United States for less than five years.
An individual is an alien permanently residing in the United States.
An individual is a nineteen or twenty-year-old student that meets certain education requirements under the Washington Administrative Code.
An individual is a caretaker relative of a nineteen or twenty-year-old students who meets certain educational requirements of WAC.
A pregnant women who has been convicted of misrepresenting residence in order to receive benefits from two or more states at the same time, or a drug-related felony.

Unemployment Insurance.¹⁰³ Unemployment Insurance (UI) is designed and intended to provide partial wage replacement for workers who are unemployed through no fault of their own. In Washington, UI is administered by the Employment Security Department. UI results from a partnership between states and the federal government. Federal law dictates the administration of the basic program and state law governs individual eligibility. The money to pay UI benefits comes from a state payroll tax levied on employers. The amount employers pay depends on the number of their employees who receive benefits from the program. The money to pay for the administration of national and state UI programs comes from a federal tax under the Federal Unemployment Tax Act (FUTA). Neither of these taxes is deducted from the payroll checks of employees in the state of Washington.

General Assistance--Unemployable (GA-U) Program. This program serves individuals who are unable to work due to incapacity and who are not eligible for or receiving benefits from other programs.¹⁰⁴

Public In-Kind Support

Medical Assistance: The Medical Assistance Administration (MAA) provides a wide range of medical services based on clients needs and circumstances. The MAA administers the following programs:¹⁰⁵

Medicaid: Categorically Needy (CN) Coverage. These federally matched Medicaid programs provide the broadest scope of medical coverage. Individuals may be eligible for CN coverage only, or they may be eligible for cash benefits under the SSI or TANF programs. CN includes a full scope of coverage for pregnant women and children.
Medicaid: Medically Needy (MN) Coverage. This program is both a federally and state- funded Medicaid program for aged, blind or disabled individuals. Pregnant women, children, and refugees with income and/or resources above CN limits are also eligible. It provides slightly less medical coverage than CN.

In 1998, there were 699,000 individuals enrolled in Medicaid Managed Care. This is 99.9 percent of the individuals enrolled in Medicaid. Total Washington Medicaid spending in 1997 was $3.2 billion.¹⁰⁶

Children's Medical Program. The CN medical program for children has two categories. Newborns are eligible for CN for 12 months if their month received medical benefits at the time of the child's birth. There are no income or resource limits. For children under 19 years old, this CN program has no resource limits; income limits are based on 200 percent of the Federal Poverty Level (FPL). Children need not live with a parent or guardian to be eligible for this program. They remain eligible for 12 months regardless of changes of circumstances.
Pregnant Women Program. The CN medical program for low-income pregnant women has no resource limits. Income limits are based on 185 percent of the Federal Poverty Level (FPL).
Spenddown. Through the spenddown process, excess income for MN and excess income and/or resources for MI are assigned to the client's cost of medical care. The client incurs medical expenses equal to the excess amount (spenddown) before medical benefits can be authorized. Spenddown can be thought of like an insurance deductible. The amount of the client's spenddown is computed using a base period consisting of three consecutive calendar months. The client may get medical benefits for all or part of the base period, depending on when spenddown is met.
Medical Care Services (MCS). This program is part of general assistance. It is the state-funded medical program, providing limited medical benefits to individuals eligible for the Alcoholism and Drug Addition and Treatment and Support Act (ADATSA) program and General Assistance Unemployable (GA-U). Income resource limits are the same as for CN medical programs.
Aged, Blind, or Disabled (ABD). This is a program for individuals with income and resources below federal SSI limits. These individuals may receive both SSI cash benefits and CN medical, or they may receive CN medical only. CN income and resource standards are the same as for SSI cash benefits.
Medically Indigent (MI). This state-funded program provides very limited medical coverage for persons, with an emergency medical condition requiring hospital services, who are not eligible for any other medical program. Resource and income limits for the MI program are the same as for MN. Clients with excess income and/or resources above MI limits are not eligible for MI until they spend down the excess income.

Medicare. Medicare is a Health Insurance Program for individuals 65 years old and older; some people with disabilities, under 65 years of age; and people with End-Stage Renal Disease (permanent kidney failure requiring dialysis or a transplant). The Health Care Financing Administration (HCFA) administers Medicare, covering 39 million Americans. Medicare has two parts:

Part A subsidizes care in hospitals, skilled nursing facilities, hospice, and some home health care. Beneficiaries with a sufficient earnings history do not pay a premium for Part A.
Part B helps pay for doctors, outpatient hospital care, and some other medical services not covered under Part A, including services of physical and occupational therapists, and some health services. Part B helps pay for covered medically necessary doctor services. Consumers are responsible for the monthly Medicare premium of $45.50. The cost of Part B may increase 10 percent for each 12-month period that an individual has Part B but did not take it. Enrollment in Part B is optional; the premium is usually deducted from Social Security, Railroad Retirement, or Civil Service Retirement payment.

Food Stamp Program. The Economic Services Administration (ESA) in the Department of Social and Health Services administers the general eligibility requirements for the federal food assistance program. The federal Food Assistance Program helps low-income individuals and families, people with disabilities, the elderly, and refugees and immigrants obtain a more nutritious diet by supplementing their income with food stamp benefits. During Fiscal Year 1998, ESA provided monthly Food Stamp benefits to 370,234 persons.

Additionally, a household is categorically eligible to receive food benefits when all members are eligible to receive a cash benefit under any of the following cash assistance programs:

Temporary Assistance for Needy Families (TANF);
State Family Assistance (SFA);
Supplemental Security Income (SSI); or
General Assistance Cash Programs.

Persons with disabilities may have special eligibility when the individual receives SSI, receives disability payments, receives disability-related medical assistance under Title XIX of the Social Security Act, is a veteran and receives disability payments, or is a spouse of a veteran and has a disability.

Food Assistance Program for Legal Immigrants (FAP). The 1996 Personal Responsibility and Work Opportunity Reconciliation Act, or welfare reform, restricted certain aliens lawfully admitted entry to the United States from receiving food stamp benefits. In response to the federal welfare reform, the Washington State legislature authorized a state funded food assistance program to provide benefits to those aliens who were no longer eligible for federal benefits solely due to new alien requirements. The Food Assistance Program for Legal Immigrants was implemented on September 1, 1997.¹⁰⁷

Project Access. Project Access is a one-year pilot program in the Seattle/Tacoma area. It extends telephone service to people with no phones. The program offers free community service voice mail to Department of Social and Health Services (DSHS) clients and free local telephone service in community sites that have volunteered to host Project Access telephones. Project Access is funded from unclaimed refund money resulting from a court settlement. The money was granted to DSHS from the Washington Utilities and Transportation Commission for the project.

Washington Telephone Assistance Program (WTAP). Adults receiving DSHS benefits in a program such as Food Stamps or TANF probably qualify for WTAP benefits too. WTAP offers a monthly discount on basic local telephone service. Currently, WTAP customers pay $4 monthly plus taxes. This is a $12 discount from the typical US West bill. WTAP may pay up to 100 percent of the connection fee for a new telephone service. With a valid Department of Social and Health Services Client ID number, individuals can register for WTAP by contacting their local telephone company.

Services for the Blind.¹⁰⁸ The Washington State Department of Services for the Blind (DSB) provides a variety of programs to blind and visually impaired persons of all ages. This includes individuals whose vision is not correctable by ordinary eye care. DSB seeks to promote the economic and social independence of people who are blind or visually impaired through employment, training and other opportunities. Through a VR program, a counselor can assist persons in developing an individualized written rehabilitation plan, to identify the job the person wants and all of the necessary steps achieve it. The program also provides a job training program, assisting individuals in developing skills and a job placement program.

Assistive Technology. This is a program that provides technical assistance and support for employers of blind or visually impaired employees. Assistive technology works cooperatively with the business and the employee to assess the work site and job duties and make recommendations to enable job success. Examples of recommendations include assistive technology devices, job modification or restructuring, skills such as Braille and keyboarding, and other tools. Additionally, assistive technology can train and support the employee in the use of assistive technology devices. DSB also provides information to employers about hiring and retaining individuals with disabilities.

Education, Training and Rehabilitation

WorkFirst Program--Employment Support.¹⁰⁹ The WorkFirst program offers services and activities to help people in low-income families find jobs, keep their jobs, search for better jobs, and become self-sufficient. Low-income families refer are those people with income before 175 percent of the Federal Poverty Level (FPL). This program links families to a variety of state, federal, and community resources to meet this goal. Examples of services include the following.

The Re-Employ Washington Workers program which helps low income workers applying for Unemployment Insurance (UI) benefits return to work and avoid applying for TANF assistance;
Child support allotment;
Food Stamps;
Job search and retention services;
Working Connections Child Care;
Medical Assistance;
Tuition assistance from the community and technical colleges; and
WorkFirst support services.

WorkFirst--Training Services.¹¹⁰ TANF recipients and other parents with income up to 175 percent of FPL are eligible for the following training programs.

Pre-Employment Training: Customized training by the community or technical college to meet the needs of a particular employer or group of employers. This service enables TANF and other low-income parents to develop the skills needed to get a better first job and gives them priority in hiring.
Workplace Basic Skills: Training at a work site, customized to meet the employer needs. It is designed to help less job-ready workers retain their present job and develop long-term attachment to the workforce.
Work-Based Learning Tuition Assistance: This benefit makes employment-oriented training opportunities at community and technical colleges available to working parents who are not eligible for other forms of financial aid.
Families That Work: This service is a college program that helps develop literacy, parenting and workplace skills. It is targeted at pregnant women, parents of infants, teen parents, and others who are in earliest stages of focusing on work.
Community Jobs: This is a benefit that provides subsidized public and non-profit sector employment for hard-to-employ TANF recipients, who concurrently receive training to develop work skills.
Re-Employ Washington Workers. Unemployment claimants with dependent children with income below 175 percent of FPL are eligible for this benefit. This program provides subsidized childcare and other support services while a client is in intensive job search activities. Clients who become employed within six weeks and are still employed after twelve weeks, in a job at the same or higher wage than their previous employment, will receive a cash bonus.

Vocational Rehabilitation. The Washington State Department of Vocational Rehabilitation (DVR) assists people with disabilities to prepare for, obtain and retain employment. The Department of Vocational Rehabilitation is a state and federal-sponsored program. DVR works in partnership with the community and business to develop employment opportunities for people with disabilities. VR programs are custom-designed for each individual. DVR serves anyone who has a physical or mental impairment that results in a substantial impediment to employment; and requires VR services to prepare for, obtain, or retain employment. DVR services include the following:

Medical Evaluation to determine a person's strengths and vocational limitations through expert medical, psychiatric, social and psychological evaluations.
Vocational Assessment to identify a person's interests, readiness for employment, work and job opportunities in the community.
Counseling and Guidance to establish an on-going relationship between the counselor and the individual in which they explore the evaluation results and job opportunities and develop a realistic plan to enter the labor market.
Restoration to increase work potential and ability to retain a job through use of medical and assistive technologies.
Job Preparation to build work skills needed to enable a person to obtain employment. These services may include volunteer experience, on-the-job training, vocational education or classroom training.
Support Services to support an individual in completing the rehabilitation plan and becoming employed. Services include transportation assistance, the purchase of tools, equipment, books or work clothes, and support for independent living.
Job Match/Placement to assist in developing work opportunities and in obtaining and maintaining a job suited to the person's interests and capabilities.
Follow-up to follow a person's progress on the job for at least 90 days to ensure the employment is satisfactory.
Post-Employment to provide short-term services to foster job retention.
Independent Living to provide evaluations and services to assist persons in dealing with life issues that impede rehabilitation and employment goals. These services include accessing community resources, self-advocacy skills, money management and personal organization skills.
Assistive Technology Services to assist a person in the evaluation, selection, acquisition, or use of an assistive technology device to increase, maintain, or improve their functional capabilities.

Windmills. Windmills is a complimentary employer training program of the Department of Vocational Rehabilitation designed to further understanding and knowledge about employment opportunities for people with disabilities. The program aims to help people examine their own perceptions of persons with disabilities, is individually tailored to meet each company's needs, and is based on everyday work situations. It assists employers in hiring qualified applicants; informs employers about inexpensive, simple accommodations which enable a person who is disabled to perform effectively; and it furthers understanding about workers who have become disabled.¹¹¹

On-line Resume System. All Department of Vocational Rehabilitation participants may submit their resumes through the DVR website to present abilities with prospective employers. Businesses wishing to recruit applicants with disabilities can search for resumes through the on-line database. Individuals not involved with DVR may still enter their resume on-line at the Washington Online Reemployment Kiosk (WORK), which has a link on the DVR page.¹¹²

Job Search Handbook. The Job Search Handbook is a DVR publication that contains information, techniques and tips on finding the right job. Free print copies of this publication are available through a DVR counselor or at a DVR Job Resource Center. The handbook contains information on organizing a job search, assessing skills, preparing for work, job listings, tips on interviews, disability disclosure information, ADA and other programs and policies for people with disabilities.¹¹³

Job Resource Centers. Many DVR offices are equipped with Job Resource Centers to provide individuals necessary resources for job searching. Some DVR offices also have workshops to assist in career planning and job searching. Resources available include computers and laser printers, telephones, books on resume and cover letter writing, job postings, newspapers and business journals, employer contacts resources, fax and copy machine, career exploration resources, resume paper, information on the Americans with Disabilities Act, labor market information.

Employment Services for Businesses.¹¹⁴ The Washington State Department of Vocational Rehabilitation provides free services to businesses to assist in hiring and retaining employees with disabilities. The following types of services are offered to businesses:

Employment Services. These services include pre-screening applicants based on essential job requirements; computerized skill assessment and job match; referral of qualified workers; job-related training of applicants; On-the-Job-Training (OJT): an individualized worksite program; on-site job trainer and support services; follow-up services.
Personnel Assistance. DVR assists businesses in the implementation of the Americans with Disability Act (ADA) in the areas of recruiting, affirmative action planning, workforce diversity consultation, and reasonable accommodation support in Employee Assistance and/or advisory program.
Staff Development. The DVR provides custom designed training programs for management, staff and co-workers including, "Windmills," (see above), as well as training and technical assistance regarding "AIDS in the Workplace," and "The Americans with Disability Act (ADA)."
Technical Assistance. These services include job/task analysis to determine essential job requirements, job site assessment in job restructuring/work site adjustment, accessibility/barrier removal, and assistive technology including devices and specialized equipment for workplace accommodation.
Financial Incentives. The DVR also providers financial incentives to employers related to the hiring of individuals with disabilities. These incentives include reimbursement for the cost of on-the-job training expenses, business tax incentives for hiring workers with disabilities including:
- Work Opportunity Tax Credit (WOTC). See description under Tax Policies.
- Employee Accessibility Deduction. See description under Tax Policies.
- Accessibility Credit (IRS Code Section 44). See description under Tax Policies.

Workforce Investment Boards (WIBs). Development and Designation of Local WIB Areas and Regionalization: Executive Order No. 36 (1995) established county-based WIBs in recognition of county-level delivery of the majority of workforce development programs. This emphasis will not change with the advent of WIA. Key activities for this year are to support the identification of One Stop Career Centers by Workforce Investment Boards, provide true integration of services, identify a defined level of service at all One Stop system locations, increase employer participation in the public labor exchange, and participate in the national-state linkage to the electronic labor exchange by being part of the nationally sponsored One Stop Operating System.

Job Accommodation Network. The Job Accommodation Network (JAN), a service of the President's Committee on Employment of People with Disabilities, is a toll-free information and referral service providing information on job accommodation, employers' responsibilities under the ADA, and on technical assistance, funding, education, and services related to the employment of people with disabilities. JAN also analyzes trends and statistical data related to the technical assistance it provides.¹¹⁵

Community-Based Programs and Policies

The community health clinics in Washington State comprise a network of community and migrant health centers, public hospital-affiliated clinics, and local public health jurisdictions. These entities arrange and provide services to low-income and special populations. Special target populations eligible to receive clinic services include migrant farm workers, minority populations, people with HIV/AIDS, people with developmental disabilities, substance abusers, mental health consumers, homeless and the elderly.

The majority of patients using the clinics are recipients of public health insurance; most pay for it using the sliding scale. Physicians, physicians' assistants, advanced registered nurse practitioners, and dentists provide direct clinical services such as periodic screenings, well child care, family planning, high risk obstetrical deliveries, acute-episodic medical care, emergency/after hours medical services, and management of chronic medical problems.

Community health clinics are funded from primarily from Medicare, Medicaid and private insurance. Federal, state, and local governmental agency grants also contributes to the clinics' funding stream. The Community Health Services, housed in the Washington State Health Care Authority, provides over $6 million annually to fund 31 clinics throughout the state. The agency also provides technical assistance, consultation, education and training to the clinics. Moreover, it aims to serve as a liaison between the clinics and other state agencies.¹¹⁶

Private and Non-Profit Programs

Project ABLE (Able Beneficiaries Link to Employers). Project ABLE is a national resume bank that provides employers an easily accessible applicant pool of qualified job-ready individuals who are interested in working. The resume bank operates through the joint efforts of the Office of Personnel Management (OPM), SSA, RSA, the VA, and state VR agencies. The program is designed to provide employers access to quality human resources while providing training and employment services to eligible people with disabilities.¹¹⁷

The Arc of Washington State. Since 1936, The Arc of Washington State has been a leader in the development of services and programs for people with developmental disabilities, such as, autism, cerebral palsy, mental retardation, epilepsy and related neurological disorders which occur before age 18. The Arc of Washington State, a non-profit organization, is affiliated with the Arc of the United States and eleven local ARC chapters throughout the state. The mission of The Arc of Washington State is to promote the education, health, self-sufficiency, self-advocacy, inclusion and choices of individuals with developmental disabilities and their families.

Easter Seals Washington.¹¹⁸ The Easter Seals Washington is a direct service organization that is committed to providing high quality programs and services to enable people with disabilities and their families to live with equality, dignity and independence. The organization has a statewide network of services and facilities governed by a volunteer Board of Directors, professional staff and volunteers. The organization's services include the following services:

Assistive Technology. This program utilizes an Eastern Washington demonstration referral, education and training center, in collaboration with the Washington Assistive Technology Alliance (WATA) (See Public In-Kind Supports). Services are provided to all persons with disabilities, community service providers, teachers and trainers.
Housing Assistance Program. This program identifies accessible housing and refers housing to persons who are living with a permanent mobility or sensory limitation and are residing in housing that does not meet their access needs. The program promotes increased independence, community integration and health and safety for persons with disabilities. The goal of the program is to promote self-sufficiency and to ensure personal dignity.
Child Development Centers. The Easter Seals approach to childcare is based on a mission to support childhood care and education to children of all levels of ability. Easter Seals promotes the young child's development in all areas with positive, supportive and individualized relationships with professional, attentive, caring adults, as well as meaningful peer interactions. Easter Seals provides an environment where activities are based on developmentally appropriate practices and an applied anti-bias curriculum. The curriculum values and solicits diversity of ability and culture in its families and staff.

Tax Policies

Work Opportunity Tax Credit (WOTC).¹¹⁹ Through this program, an employer may qualify for a tax credit for a portion of wages that they pay to workers with disabilities referred by the Department of Vocational Rehabilitation. The program provides special tax credits to employers that hire people with disabilities.

Deduction for Removal of Barriers (IRS Code Section 190). Taxpayers may deduct expenses for making a facility or vehicle used in their business more accessible to persons with disabilities.

Accessibility Credit (IRS Code Section 44). An eligible small business that pays or incurs expenses for providing access to persons with disabilities is allowed a tax credit.

Earned Income Tax Credit.¹²⁰ The Earned Income Tax Credit (EITC) is a tax credit that can reduce the amount of income tax owed and can give taxpayers a large refund. Even if a taxpayer does not owe money in taxes, they can often receive money back from the EITC. Eligibility for the EITC is based on employment in the previous year, income and the number of qualifying children in the household. For instance, an individual may be able to claim EITC if he or she was employed in 1999 and he or she:

Earned less than $30,580, and has two or more qualifying children; or
Earned less than $26,928, and has one qualifying child; or
Earned less than $10,200, and has no qualifying children, and are between the ages of 25 and 64.

Policies and Programs Available in Seattle/Tacoma for People with Disabilities
Organization	Contact Information	Web Site	Program/Services	Target Group	Target Area
Private and Non-Profit Programs
Center for Independence	407 14th Ave., S.E. Puyallup, 98371 PH: (253)845-5187 FAX: (253)848-0798	www.olyweb.com/ci	Community activities that address civil and equal rights issues at all levels; peer support and role modeling; individual advocacy and independent living skills development; information and referral to community resources.	All people with disabilities	Seattle/Puyallup
Learning Disabilities Association of Washington	7819-159 Pl., N.E. Redmond, 98052 PH: (425)882-0792		Information and referral network; international conference; technical assistance to schools for planning and implementing programs for students with learning disabilities; congressional testimony and forums on legal rights.	Individuals with learning disabilities and their families	Home office in Redmond Local services are provided in the Seattle and Tacoma school systems
Lifetime Advocacy Plus	11000 Lake City Way, N.E. Suite 401 Seattle, 98125 PH: (206)367-8055 FAX: (206)367-8353	www.laplus.org	Estate and/or personal guardianship; trusteeship; attorney in fact; representative payee; standby (peace of mind) services; individual consultation; executor/personal representative.	Persons with disabilities	Statewide Home office is in Seattle
Education, Training, and Rehabilitation
ARC of King County	10550 Lake City Way, N.E. Seattle, 98125 PH: (206)364-1613 FAX: (206)364-1840	www.arcoofkingcounty.org	Advocacy & Referral Program (A&R); information resource and referral; direct advocacy.	People with developmental disabilities and related neurological disorders	King County Statewide
ARC of Washington State	1703 State Ave., N.E. Olympia, 98506 PH: (360)357-5596 FAX: (360)357-3279	www.arcoofkingcounty.org			King County Statewide
Client Assistance Program	P.O. Box 22510 Seattle, 98144 PH: (206)721-5999 FAX: (206)721-4537	www.wa.gov/dshs/ dvr/aboutdvr/cap.htm	Due process program for clients of DVR: advocacy, mediation, assistance with legal process.	DVR clients	Statewide Focus group participants mentioned local representatives as supports
Community Service Center for the Deaf and Hard of Hearing	1609 19th Ave. Seattle, 98122 PH: (206)322-4996 TTY: (206)322-4996 FAX: (206)720-3251	www.sccd.edu	Peer counseling; workshops; advocacy for removal of social/ language/attitudinal barriers for deaf, hard of hearing and deaf-blind people.	Deaf, hard of hearing and deaf-blind people	Greater Seattle Area
Computers for Handicapped Independence	914 E. Spruce St. Suite 32 Yakima, 98901 PH: (509)457-4506	www.polio.dyndns.org/chip	Program provides information on software and hardware for persons with limitations; information service is provided via the Internet and phone; free usage to those requesting the service.	Persons with varied limitations either in motor, vision, learning, hearing, or cognitive skills.	Based in Yakima Information services provided nationwide
Division of Vocational Rehabilitation	3600 South Graham St. Seattle, 98118 Voice/TTY: (206)720-3200 FAX: (206)720-3222	www.wa.gov/dshs/dvr	Vocational assessment, counseling and guidance, physical restoration, job preparation, job match/placement, support services, post-employment.	Persons with physical or mental impairments	Statewide Local field offices in: Bellevue, Kent, Burien, Everett Federal Way, North Seattle Renton, Tacoma, Puyallup
Easter Seals Washington	521 2nd Ave., W. Seattle, 98119 PH: (206)281-5700 FAX: (206)284-0938	www.seals.org	Accessibility design; vocational rehabilitation camping and respite care; housing assistance inclusive childcare; computer loan program; computer-assistive technology	Men, women and children with disabilities and their families	In-person services provided at main office in Seattle
Eastside Employment Services	1601 116th Ave., N.E. Bellevue, 98004 PH: (425)453-0676 FAX: (425)453-0338		Individual Employment Placement: placement into a job, training at the job site and/or of the individual, and follow-along services to help maintain the individual in the job.	Persons with developmental disabilities	King County
Epilepsy Foundation	3800 Aurora Ave. N. Suite 370 Seattle 98103 PH: (206)547-4551	www.efa.org	Work for people affected by seizures through research, education, advocacy and service.	People with epilepsy	In-person services provided at main office in Seattle
Governor's Committee on Disability Issues and Employment	P.O. Box 9046 Olympia, 98507 PH: (360)438-3168 TTY: (360)438-3167	www.wata.org/nwd	Governor's Advisory Council	Individuals with disabilities	Statewide Focus group participants mentioned local representatives as supports
HEALTHSOUTH Rehabilitation Center	multiple sites throughout Washington	www.healthsouth.com/ facility/us/washington.html	Sports medicine, occupational rehabilitation.	People with physical disabilities	Multiple locations in Seattle and Tacoma
Hearing, Speech and Deafness Center	1620 18th Ave. Seattle, 98122 PH: (425)776-1915 TTY: (206)328-6871 FAX: (206)323-5770	www.hsdc.org	Training, Assessment & Placement Program (TAPP); vocational counseling & assessment, job search training, employer information and referral, job placement	Persons who are deaf, hard of hearing, or have other physical and mental disabilities	Seattle/Tacoma
International Association of Machinists Center for Administering Rehabilitation and Employment Services(IAM CARES)	9125 15th Pl., S. Seattle, 98108 PH: (206)323-5770 TTY: (206)764-0452	www.iamaw.org	Assessment of abilities and interests, job readiness, job development, job modification, job training, industrial evaluation, job placement, follow-up and support services.	Persons with disabilities	National organization with offices in WIA One-Stops in Seattle, Tacoma, Snohomish
National Federation of the Blind	P.O. Box 2516 Seattle, 98111 PH: (425)823-6380	www.nbf.org	Public education; information and referral; supplies, appliances and other adaptive equipment; job opportunities; scholarships; literature and publications about blindness; advocacy services; development and evaluation of technology. Support for blind persons.	Blind persons	In-person services provided at main office in Seattle
Northwest Center	1600 West Armory Way Seattle, 98119 PH: (206)285-5441 FAX: (206)286-2304	www.nwcenter.org	Vocational and Employment Services: vocational evaluation, prevocational training, comprehensive employment support, job placement.	Children and adults with disabilities	Seattle
Paralyzed Veterans (PVA)	616 S.W. 152nd St. Suite B Burien, 98166 PH: (206)241-1843 FAX: (206)433-0749	www.pva.org	Public education; information and referral; job opportunities; advocacy services	Paralyzed veterans	Statewide Most services provided at home office in Seattle
Private Industry Council of Seattle-King County	2003 Western Ave. Suite 250 Seattle, 98121 PH: (206)448-0474 FAX: (206)448-0484	www.skcpic.org	Services designed to provide skills and training needed to acquire and retain employment; provides Learning Disabilities Project.	Unemployed, underemployed and economically disadvantaged residents	Seattle & King County
Seattle Central Community College Academic Advising Center, Mainstay Program	1701 Broadway Seattle, 98122 PH: (206)587-4068 FAX: (206)587-6321	seattlecentral.org/ career	Assists and supports people with disabilities in reaching financial and personal independence by gaining employment in the competitive workplace; provides training based on work experience settings, both on campus and in the community; provides job placement, arranging transportation, integration with co-workers. Assists with resume development, interviewing, counseling, skills development.	Students with disabilities	Seattle area
Seattle Central Community College Differently Abled Student Services Program	1701 Broadway Room 1147 Seattle, 98122 PH: (206)587-4169 FAX: (206)344-4390	www.sccd.ctc.edu/ catalog/central/academ.html	Accessibility; adaptive equipment services; accommodations; personal and rehabilitation counseling; Ddsability evaluation referral; resource information. Students with special needs are encouraged to contact this office prior to registration to help determine what services are needed and available. Support services can include advocacy, counseling, referral for diagnostic testing for learning disabilities, note takers, readers, special testing accommodations, support groups, scribes, and taping of textbooks.	Students with disabilities	Seattle area
Tacoma Goodwill Industries	714 S. 27th St. Tacoma, 98409 PH: (253)272-5166	www.tacomagoodwill.org	Vocational evaluation, work experience, on-the-job-training, job placement, job seeking skills.	Visual, hearing, orthopedic, heart/lung, cerebral palsy, MR, LD, epilepsy, MD, substance abuse	Tacoma Branches and stores in Yakima, Longview, Olympia, Port Angeles
TRAC Associates	2601 Elliott Ave. Suite 4160 Seattle, 98121 PH: (206)443-9999 FAX: (206)443-9079		Job Readiness Workshop: Five hrs/day, one week session; "return to work experts"	Low income, veterans, immigrants, disabilities, workers' comp, homeless, welfare recipients	Seattle, Tacoma, Everett, Tukwila
University of Washington (Seattle campus) Center for Career Services	301 Loew Hall Seattle, 98195 PH: (206)543-9102 FAX: (206)616-4863	www.depts.washington.edu/ careers	Career and job search services.	University of Washington students, alumni; disability accommodations promoted	Seattle area
University of Washington (Seattle campus) DO-IT CAREERS	4518 University Way Suite 200 Seattle, 98105 PH: (206)685-3648 FAX: (206)221-4171	www.washington.edu/doit	Technological support for students' academic and employment pursuits; guidance in developing self-advocacy and job-search strategies; facilitation of students' access to professional role models and internships. Disability awareness training; distribution ofprogram information.	People with disabilities (e.g., high school students, 2-yr college students, etc.) pursuing academics and careers.	Seattle area
Washington Council of the Blind	1503 5th Ave.,W. Seattle, 98119 PH: (800)255-1147 FAX: (206)545-7059		Toll-free information and referral; scholarship assistance; public education and awareness training; support to consumer advocates and legal assistance; leadership and legislative training; consulting with industry regarding employment of the blind and visually impaired; governmental monitoring, consultation and advocacy.	Blind or visually impaired individuals, but sighted individuals may also join	Statewide Direct services provided at home office in Seattle
Washington Protection and Advocacy	180 West Dayton Suite 102 Edmonds, 98020 PH: (425)776-1199 FAX: (425)776-0601	www.wpas-rights.org	Direct representation, information and referral, systems advocacy, training and publications.	Persons with disabilities	Statewide In-person services provided at main office in King County
Washington State Business Leadership Network	P.O. Box 77048 Seattle, 98177 PH: (206)826-1018 TTY: (206)361-5628 FAX: (206)440-2206	www.wsbin.org/ contact/index.htm	Educate and support businesses to hire, retain and improve customer service toward persons with disabilities.	Businesses in WA state	Statewide Services provided primarily in Seattle area
Washington State Developmental Disabilities Council	906 Columbia St., S.W. P.O. Box 48314 Olympia, 98504 PH: (360)753-3908 FAX: (360)586-2424	www.wa.gov.ddc www.governor.wa.gov/ boards/boards2000.pdf	Plans comprehensive services. Educate, advise local, state and federal policy makers on disability systems issues.	WA state residents with developmental disabilities	Statewide Focus group participants mentioned local representatives as supports
Washington Talking Book and Braille Library	2021 9th Ave. Seattle, 98121 PH: (206)615-0400	www.spl.org	Summer Reading Program books and magazines on tape; braille and large print books; Evergreen radio reading service; closed circuit magnifiers (CCTV) demonstrations; on-line access	WA state residents who are legally blind, deaf-blind, visually impaired, physically disabled or learning disabled	Statewide Direct services provided at home office in Seattle
Washington Vocational Services	3600 S. Graham Seattle, 98118 PH: (206)720-3200	www.wvs.org	Collocated with DVR. Provides: Vocational training; career counseling; case management; internship placement; supported employment services for severely disabled persons; specialized services for deaf and hard-of-hearing persons.	WA job seekers	Snohomish and King County
In-Kind Support Services
Brain Injury Association of Washington	16315 N.E. 87th Suite B4 Redmond, 98052 PH: (425)895-0047 FAX: (425)895-0458	www.biawa.org	Information, advocacy and support; chartered association of National Brain Injury Association. Services: clearinghouse of resources and information; network of peer support groups; specialized brain injury rehabilitation programs.	Persons with a brain injury, family members, friends, and professionals	In-person services and peer support groups provided in Seattle (at Group Health Central), Tacoma (at TACID), and Snohomish (at Christ the King Lutheran Church and Mountlake Terrace)
Pierce County Transit	P.O. Box 99070 Tacoma, 98499 PH: (253)581-8100 FAX: (253)581-8075	www.piercetransit.org	Public Transportation Bus Services, Rideshare Shuttle.	Shuttle service for people unable to ride regular Pierce County Transit; wheelchair-accessible bus stops	Puget Sound Region
PROVAIL	P.O. Box 77048 Seattle, 98177 PH: (206)363-7303	www.ucpks.org	State's largest private, multi-service agency that provides services such as: Community Living Program (CLP); employment and community services; therapeutic and assistive technology services; dental clinic.	Children and adults with all types of disabilities	Statewide Most services provided at home office in Seattle
Regional Epilepsy Center at Harborview Medical Center (University of Washington)	325 9th Ave. P.O. Box 959745 Seattle, 98104 PH: (800)374-3627 FAX: (206)731-4409	www.elliott.hmc.washington.edu	Discussion board; quarterly newsletter; job club; "Ask the Doctor"; in-patient and out-patient treatment; support groups.	Persons with epilepsy	Seattle area
Seattle Central Community College Center for Deaf Students	1701 Broadway Seattle, 98122 Voice/TTY: (206)587-4183	www.sccd.ctc.edu/~ccdeafst	Provides interpreters and support services which allow equal access to educational opportunities at the college.	Deaf students	Seattle area
Tacoma Area Coalition of Individuals with Disabilities (TACID)	6315 S. 19th St. Tacoma, 98466 PH: (253)565-9000 FAX: (253)565-5578	www.tacid.org	Interpreter referral services; assistive technology resources; information and referral; job-seeking skills training; job placement assistance.	Persons with disabilities	Tacoma
Washington Assistive Technology Alliance (WATA)	2366 E. Lake Seattle, 98102 PH: (206)726-8580 FAX: (425)861-4642	www.wata.org	Information and referral consultation legal advice and advocacy policy development; and legislative action technical training publications online resources.	People with disabilities, their families, caregivers, employers, teachers, health care and social service providers	Statewide In-person services provided at office in Seattle (University of Washington)
Washington Coalition of Citizens with Disabilities	4649 Sunnyside Ave., N. Suite100 Seattle, 98103 PH: (206)545-7055	www.wccd.org	Information and assistance, peer support, independent living skills training, and advocacy services. The Coalition's services are delivered through three Independent Living Centers in King and Snohomish Counties.	People with disabilities, including those with multiple, complex human and economic service needs	King and Snohomish Counties
Washington Initiative for Supported Employment	83 South King St. Suite 603 Seattle, 98104 PH: (206)343-0881 FAX: (206)323-2078	www.wise.nu	Training and technical assistance.	Individuals with significant disabilities	Nationwide

NOTES

Figures in this table are from model-based estimates by the U.S. Census Bureau using data from the 1990 Census, which are the latest data available (U.S. Census Bureau, 2000).
Website: http://www.dss.cahwnet.gov/getser/ssissp.html
As of January 2001, this amount applies to non-blind individuals. The SGA level is adjusted annually based on increases in the national average wage index.
Livermore, Gina A., David C. Stapleton, Mark W. Nowak, David C. Wittenburg, Elizabeth D. Eiseman, The Economics of Policies and Programs Affecting the Employment of People with Disabilities. Washington, DC: a report prepared for the U.S. Department of Education, National Institute on Disability and Rehabilitation Research, March 2000.
Website: http://www.edd.cahwnet.gov/diind.htm
Website: http://www.dir.ca.gov/DWC/basics.htm
Website: http://www.dir.ca.gov/DWC/basics.htm
Livermore, et al., 2000.
TANF replaces the Aid to Families with Dependent Children (AFDC) program.
Website: http://www.welfarereformer.org/states/cal-tanf.htm
Website: http://www.lao.ca.gov/ga_hearing.html
Website: http://www.dss.cahwnet.gov/getser/efap.html
Website: http://www.dss.cahwnet.gov/calworks.caworks.htm
Website: http://www.ds.cahwnet.gov/getinfo/faq/faqsprogram.htm
Website: http://www.edd.cahwnet.gov/uifaq.htm
An "1115 Waiver" refers to Section 1115 of the federal Social Security Act, which allows the Secretary of Health and Human Services to waive any provision of Medicaid law for demonstration projects that test a program improvement of innovate a new idea of interest to the Health Care Financing Administration (HCFA). (See http://phps.dhs.co.la.ca.us/waiver/faq/faq2.htm.)
Website: http://www.dof.ca.gov/html/BUDGT00-01/Health&HumanSrv-T.htm
Website: http://www.lapublichealth.org/mch/cpsp/cpspdes.htm
Website: http://healthyfamilies.ca.gov/Handbook/HBpg6.htm
Website: http://www.dof.ca.gov/html/BUDGT00-01/Health&HumanSrv-T.htm
Website: http://phps.dhs.co.la.ca.us/chdp/chdpserv.htm
Website: http://www.dmh.cahwnet.gov/braindamaged.htm
Website: http://www.dmh.cahwnet.gov/caregiver.htm
Website: http://www.dmh.cahwnet.gov/child_sysofcare.htm#1
Website: http://dmh.ca.la.ca.us/scripts/overview.htm
Website: http://www.mrmib.ca.gov/MRMIB/MRMIP/MRMIP.htm
Website: http://www.dss.cahwnet.gov/getser/adpscvs.html
Website: http://dcss.co.la.ca.us/AAA/Icdp.htm
Websites: http://www.pmdc.org/English/Eng_navframe.htm; http://www.dhs.cahwnet.gov/ps/ooa/care/adap.htm
Website: http://www.dhs.cahwnet.gov/ps/ooa/carehipp.htm
Website: http://phps/dhs.co.la.ca.us/phcommon/public
Website: http://www.dhs.cahwnet.gov/mcs/cpltc/html/consumer.htm
Website: http://www.dss.cahwnet.gov/getser/foodsta.html
Website: http://www.dss.cahwnet.gov/getser/foodsta.html
Website: http://www.dss.cahwnet.gov/getser/dogprog.html
Website: http://www.csd.ca.gov/LIHEAP.htm
Website: http://www.csd.ca.gov/CSBG.htm
Livermore et al., 2000.
Website: http://www.hud.gov/progdesc/811main.cfm
Website: http://www.dds.ca.gov/LivingArrang/main/res001.cfm
Website: http://www.dds.ca.gov/LivingArrang/main/fha001.cfm
Website: http://www.dds.ca.gov/LivingArrang/main/ffa001.cfm
Website: http://www.dds.ca.gov/LivingArrang/main/indiv001.cfm
Website: http://www.dds.ca.gov/LivingArrang/main/sls001.cfm
Website: http://www.dof.ca.gov/html/BUDGT00-01/Health&HumanSrv-T.htm
Website: http://www.state.nj.us/labor/pdf/annual.pdf
Website: http://www.edd/cahwnet.gov/wiaind.htm
Website: http://wib.co.la.ca.us
Website: http://www.ns.net/cadva/service/morecdwa.html
Website: http://www.edd.ca.gov/jtpaind.htm
Website: http://www.edd.ca.gov/jsind.htm
Website: http://www.dds.ca.gov/DayProgram/main/day001.cfm
Website: http://www.dds.ca.gov/earlyStart/main/prev004.htm
Website: http://www.dds.ca.gov/earlyStart/main/prev004.htm
Website: http://www.lacoe.edu/head_start/hdst_prog1.html
Website: http://www.lacoe.edu
Website: http://www.lacoe.edu
Livermore et al., 2000
Website: http://www.dds.cahwnet.gov/DayProgram/main/day001.cfm
Livermore et al., 2000
Website: http://www.thearc.org
Website: http://www.arcnj.org/html/hire.html
Website: http://www.nfbcal.org
Website: http://www/essc/org/AboutEasterSeals/FAQs.html
Website: http://www.ns.net/OAB/briefing.htm
Website: http://www.cfilc.org/about/background.html
Website: http://www.irs.gov
Website: http://www.abag.ca.gov/planning/housingneeds/.../TqaxCreditsForLow-Inco…
Website: http://edd.cahwnet.gov/sotcintr.htm
Website: http://www.state.nj.us./humanservices/ssi.html
As of January 2001, this amount applies to non-blind individuals. The SGA level is adjusted annually based on increases in the national average wage index.
Livermore, Gina A., David C. Stapleton, Mark W. Nowak, David C. Wittenburg, Elizabeth D. Eiseman, The Economics of Policies and Programs Affecting the Employment of People with Disabilities. Washington, DC: a report prepared for the U.S. Department of Education, National Institute on Disability and Rehabilitation Research, March 2000.
Website: http://www.wnjpin.state.nj.us/OneStopCareerCenter/OtherInformation/DivV…
Website: http://www.state.nj.us/labor/wc/wc-info.htm
Website: http://www.state.nj.us/labor/wc/benefit.htm
Livermore et al., 2000
New Jersey defines allowable work activities as: unsubsidized employment, subsidized private or public sector employment, work experience, alternative work experience, on-the-job training, job search and job readiness assistance, community service programs, vocational educational training, job skills training directly related to employment, education directly related to employment, work related educational enhancement, and provision of child care services.
Websites: http://www.hudson.org/wpc/states/nj-tanf.htm; http://www.ctaa.org/ntrc/atj/pubs/states-move/welfare-nj.shtml
Hudson Institute, Welfare Policy Center
Website: http://www.state.nj.us/humanservices/tanf3.html#t36
Website: http://www.familiesusa.org/pubs/tanfup.htm
Website: http://www.state.nj.us/humanservices/DFD/wfnj.html
Website: http://www.state.nj.us/humanservices/dhsmed/html
Website: http://www.state.nj.us/humanservices/ebt.html
Website: http://www.state.nj.us/humanservices/henas/html
Website: http://www.state.nj.us/dca/hmfa/specneed
Website: http://www.njpanda.org/tarp/index.html
Website: http://www.state.nj.us/labor/pdf/annual.pdf
Website: http://www.ilr.cornell.edu/PED/dbtac.html
Livermore et al., 2000
Livermore et al., 2000
Website: http://www.jvsnj.org/workfirst.html
Website: http://www.wa.gov/dshs/dockets/99aug24_2598.html
This represents 1.98 percent of 1996 population estimates.
As of January 2001, this amount applies to non-blind individuals. The SGA level is adjusted annually based on increases in the national average wage index.
Livermore, Gina A., David C. Stapleton, Mark W. Nowak, David C. Wittenburg, Elizabeth D. Eiseman, The Economics of Policies and Programs Affecting the Employment of People with Disabilities. Washington, DC: a report prepared for the U.S. Department of Education, National Institute on Disability and Rehabilitation Research, March 2000.
"Workers' Guide to Industrial Insurance Benefits," State of Washington Department of Labor. July 17, 2000.
Ibid.
Website: http://www.state.nj.us/labor/wc/wc-info.htm
Livermore et al., 2000
The current caseload figure represents a decrease of 1,080 cases from the previous month and a reduction of 5,713 from the year before. Since January 1997, the overall reduction was 39,745 (41 percent).
Website: http://www.wa.gov/dshs/EAZManual/Sections/PS_SFA.htm
Employment Security Department, http://www.wa.gov/esd/ui.htm
Website: http://www.wa.gov/dshs/EAZManual/Sections/PS_GAU.htm
Website: http://maa.dshs.wa.gov/Eligibility/Overview.htm
Website: http://www.kff.org/docs/state/states/wa/html
Website: http://www.wa/gov/dshs/EAZManual/Sections/PS_FAP.htm
Website: http://www.wa.gov/dsb
Washington State's Temporary Assistance for Needy Families (TANF) State Plan (Amended May 22, 2000). pp.1-1 to 1-3.
Washington State's Temporary Assistance for Needy Families (TANF) State Plan (Amended May 22, 2000). pp.II-8 to II-9.
Website: http://www.wa.gov/dshs/dvr/employers/windmills.htm
Website: http://www.wa.gov/dshs/dvr/jobseekers/jobseekers.htm
Ibid.
Website: http://www.wa.gov/dshs/dvr/employers/employmentservices.htm
Livermore et al., 2000
Website: http://www.wa.gov/hca/chs
Livermore et al., 2000
"Easter Seals Washington," http://www.seals.org
Employment Services. http://www.wa.gov/dshs/dvr/employers/emplymentaservices.htm
Website: http://www.wa.gov/WORKFIRST/eitc/worker.htm

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Topics

Disability

Populations

People with Disabilities

Research on Employment Supports for People with Disabilities: Summary of the Focus Group Findings

ACKNOWLEDGMENTS

I. INTRODUCTION

A. Purpose and Organization of the Report

B. Study Background

C. Evolution of Disability Policy

II. FOCUS GROUP FINDINGS

A. Introduction

B. Supports Used During Childhood/at Onset of Disability

Special Education

Health Insurance

Supplemental Security Income

Parental Expectations and Teacher, Mentor and Peer Support

C. Supports Used in Securing First Job and in Maintaining Current Employment

Ranking of the Importance of Selected Supports

Health Insurance

Social Security Disability Programs

Vocational Rehabilitation

Employers

Individual Motivation

Other Supports

NOTES

REFERENCES

APPENDICES

APPENDIX A: Focus Group Methodology and Characteristics of Participants

FOCUS GROUP METHODOLOGY

Sites Selected for the Study

Participation Criteria

Participant Recruitment and Screening

Conducting the Focus Groups

CHARACTERISTICS OF FOCUS GROUP PARTICIPANTS

Participant Characteristics Overall and by Site

Characteristics by Impairment

NOTES

ATTACHMENTS

APPENDIX B: Locality Profiles

OVERVIEW OF LOCALITIES

Locality Characteristics

Program Profiles

LOS ANGELES, CALIFORNIA

Public Income Support

Transitional Income Support Programs

Public In-Kind Support

Education, Training and Rehabilitation

Community-Based Programs and Policies

Private and Non-Profit Programs

Tax Policies

NEWARK, NEW JERSEY

Public Income Support

Transitional Income Support Programs

Public In-Kind Support

Education, Training and Rehabilitation

Community-Based Programs and Policies

Private and Non-Profit Programs

Tax Policies

SEATTLE/TACOMA, WASHINGTON

Public Income Support

Transitional Income Support Programs

Public In-Kind Support

Education, Training and Rehabilitation

Community-Based Programs and Policies

Private and Non-Profit Programs

Tax Policies

NOTES

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