Vocational Rehabilitation, Independent Living, and Consumerism
Debra Homa
David DeLambo
INTRODUCTION
According to the latest Harris poll of Americans with disabilities in 2004, approximately two thirds of working-age people with disabilities are unemployed (1). Other survey data indicate that, of those individuals who are unemployed, the vast majority (two out of three) wanted to work (2). Work plays a central role in life and is a common source of self-identify and financial independence in American society (3). Since its beginning, a major goal of rehabilitation in the United States has been to help people with disabilities become productive members of society through the activity of holding a job. Vocational rehabilitation (VR) programs have been specifically designed to promote work opportunities for people with disabilities. Historically, the focus of VR services has been to assist persons with disabilities who have vocational potential. It was not until 1978 that legislation defining VR services also included provision of services for individuals without clear vocational goals (4). Title VII, Comprehensive Services for Independent Living (IL), an amendment to the Rehabilitation Act of 1973 (PL 93-112), authorizes services for people with severe disabilities, those who require multiple services over an extended period of time and persons whose disability prevents them from working or participating in other major life activities (5).
Although VR and IL are comprised in the same legislation, they have not always worked in tandem, as VR professionals have tended to view consumers of IL services as being unable to achieve gainful employment and therefore not likely to benefit from the VR program (4). In recent years, however, the goals and principles of VR and IL have begun to converge and are likely to continue to do so, especially as newer understandings of rehabilitation and disability become more widely accepted with the growing international impact of the International Classification of Functioning, Disability and Health (ICF). The ICF, which is described more fully in Chapter 19 of this volume, was endorsed by the World Health Organization (WHO) in 2001 and provides a new framework for understanding health and health-related conditions (6). The ICF conceptual model provides a holistic perspective of health that is consistent with contemporary rehabilitation philosophy, in which disability is seen as a consequence of the interaction of the person with the environment (7). In a further development of the ICF, the Physical and Rehabilitation Medicine section of the European Union of Medical Specialists has recently adopted the ICF conceptual model, in which rehabilitation is understood as a health strategy to help people attain optimal functioning in their interaction with the environment (8, 9). Within this model, individuals do not “have” disabilities; rather, they are “people with health conditions experiencing or likely to experience disability” (8). The United Nations Convention on the Rights of Persons with Disabilities has also endorsed an understanding of disability consistent with the ICF model, stating, “disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others,” including maximum independence and the right to work (10).
For the sake of clarity, terminology such as “persons with disability” is used in this chapter to refer to individuals with a health condition who are experiencing or likely to experience disability. This usage is in no way intended to imply that disability is an attribute of the person; rather, it is understood that disability is a consequence of the interaction between the person with the health condition and the environment.
This chapter provides an overview of both the VR and IL programs in the United States, including the legislative history and purpose of VR and IL services and the differences between these two service paradigms. The authors describe VR program settings and staff, as well as the services that help individuals with disabilities achieve their goals. This chapter also provides a brief review of key research findings that document the effectiveness of VR services and implications for practice.
PURPOSE AND CHARACTERISTICS OF VR AND IL SERVICES
Vocational Rehabilitation
The primary purpose of VR has been to help people with disabilities prepare for and obtain gainful employment, usually through competitive employment (e.g., paid work). VR programs provide rehabilitation services designed to maximize independence and employment and to promote full integration and participation in society (11). Rehabilitation
counselors work with individuals who have a wide range of disabilities. These include physical disabilities, such as spinal cord injury, stroke, arthritis, multiple sclerosis, congenital or orthopedic difficulties, chronic pain, or amputations; cognitive disabilities, such as traumatic brain injury (TBI), organic brain syndromes, developmental and learning disabilities; and psychiatric disorders, including major depression, bipolar disorder, and schizophrenia (5).
counselors work with individuals who have a wide range of disabilities. These include physical disabilities, such as spinal cord injury, stroke, arthritis, multiple sclerosis, congenital or orthopedic difficulties, chronic pain, or amputations; cognitive disabilities, such as traumatic brain injury (TBI), organic brain syndromes, developmental and learning disabilities; and psychiatric disorders, including major depression, bipolar disorder, and schizophrenia (5).
VR services may be provided in a variety of settings, including the state-federal VR program (a public agency under the U.S. Department of Education), private, nonprofit community-based programs (e.g., Goodwill Industries, Easter Seals), rehabilitation hospitals, Veterans Administration system, for-profit rehabilitation firms, psychiatric rehabilitation programs, insurance companies, and employer disability management programs (12). Within the state-federal system, the VR process involves a collaborative relationship in which the rehabilitation counselor and individual with a disability work together to identify a feasible vocational goal and the services needed to achieve employment. This process generally involves: (a) individual assessment and planning, which may include interviewing, paper-and-pencil tests, and performance evaluation in real or simulated work situations; (b) comprehensive services, which may include counseling, education, vocational training, physical therapy, speech therapy, and assistive technology (AT); and (c) job placement, which may include on-the-job training or job trials, job development, job search training, supported employment, placement in permanent employment, and postemployment services. Private rehabilitation companies that work with individuals who have work-related disabilities provide or plan services such as vocational assessment, work capacity evaluation, job analysis, work hardening and reconditioning, vocational training, job accommodations, job-seeking skills, job placement, and employer development.
In the state-federal VR program, the service provision plan is formalized with an Individualized Plan for Employment (IPE), which is jointly developed by the individual and counselor. Once job placement has been achieved, follow-up services are continued for a minimum of 90 days to provide support and consultation to the new employee and to his or her employer. This helps to ensure that the employment situation is working out satisfactorily for all parties (5).
Independent Living
Living independently with a severe disability in a physical and social world that is often less than accommodating presents a lifetime of challenges. Attention to individual needs also is critical, as the impact of a severe disability may change at different life stages or in varying situations. For example, an individual who is relatively unhampered by disability in one area of life, or during one stage of development, may at another time or under different circumstances be completely overwhelmed by any one of the myriad challenges presented by a severe disability (5). The overriding goal of IL is the full inclusion and participation of individuals with disability in society.
IL programs are designed “to maximize the leadership, empowerment, independence, and productivity of individuals with disabilities and to integrate these individuals into the mainstream of American society” (13). IL services are most often provided by a national network of approximately 500 Independent Living Centers (ILCs, also known as Centers for Independent Living) across the country (14). In contrast to the public state-federal VR program, ILCs are private, nonprofit, community-based organizations that are controlled by consumers to provide services and advocacy by and for persons with all types of disabilities. ILCs are not residential programs per se; rather, they help individuals identify and achieve IL goals. In recent years, IL services have been increasingly recognized as being complementary to traditional VR (4). Due to medical advances, many persons with severe disabilities in the 1960s who only had hope for IL, now are very employable. Thus, IL and VR are continuous elements of the larger rehabilitation process. While VR programs focus specifically on achieving employment-related goals, IL programs provide services that enable persons with severe disabilities to gain more autonomy in their lives, such as IL skills training, peer counseling (e.g., assistance with coping techniques), advocacy, and information and referral services. Their goal is to help individuals with disabilities to achieve their maximum potential within their communities and family units.
ILCs serve as strong advocates for people with disabilities and address an array of national, state, and local issues. They strive to increase both physical and programmatic access to housing, employment, transportation, communities, recreational facilities, and social and health services. An IL program is a community-based program with substantial consumer involvement that provides direct or indirect services (through referral) for people with severe disabilities. Services are often provided by individuals with disabilities. In fact, the majority of ILC personnel must have disabilities to ensure that the rights and needs of persons with disabilities are being addressed appropriately. For example, a consumer with a recent spinal cord injury may be counseled by a seasoned one. Services typically include housing information, attendant care, reading or interpreting, and information about other goods and services necessary for IL. They may also include transportation, peer counseling, advocacy or political action, training in IL skills, equipment maintenance and repair such as wheelchair, and social and recreational services. VR programs may provide these services, but on a limited basis as a secondary or supplementary means of achieving the primary vocational objective. Rather, VR programs refer consumers for these services to the ILCs, as stipulated in Title VII of the 1998 Amendments to the Rehabilitation Act (4).
The VR and the IL paradigm share a consumer-centered approach, but they have different goals. In the VR process, client characteristics, the nature and extent of functional limitations, socioeconomic factors, and other factors are carefully assessed. This information is then reviewed by the counselor and consumer to develop a vocational goal and plan for employment. VR has been criticized by many in the disability rights movement as being disempowering to people with disabilities due to
its focus on providing services designed to “fix” the individual, rather than eliminate societal and environmental barriers that magnify or even create disability (15). The IL movement, in contrast, played a significant role in recognizing disability as being the consequence of external barriers, rather than a “problem” within the individual (16). In the IL process, the concept of independence is subject to various definitions, depending on the unique need and desires of the individual. Success is defined through maximizing self-sufficiency to the greatest extent possible for as long as possible, with an emphasis on consumer self-direction (17). The individual may be independent in some life situations but relatively “dependent” in other life situations in terms of the level of services needed. Within IL, self-determination is the guiding principle; autonomy and level of independence may vary, depending on one’s needs, but the individual maintains as much control as possible in decision making (18). For example, a person with quadriplegia may be able to independently perform tasks at work (e.g., by using a voice recognition program on a computer to compensate for upper mobility limitations) but need more extensive assistance from a personal attendant in performing activities of daily living (ADL) at home. Though dependent in ADL, the person maintains self-determination.
its focus on providing services designed to “fix” the individual, rather than eliminate societal and environmental barriers that magnify or even create disability (15). The IL movement, in contrast, played a significant role in recognizing disability as being the consequence of external barriers, rather than a “problem” within the individual (16). In the IL process, the concept of independence is subject to various definitions, depending on the unique need and desires of the individual. Success is defined through maximizing self-sufficiency to the greatest extent possible for as long as possible, with an emphasis on consumer self-direction (17). The individual may be independent in some life situations but relatively “dependent” in other life situations in terms of the level of services needed. Within IL, self-determination is the guiding principle; autonomy and level of independence may vary, depending on one’s needs, but the individual maintains as much control as possible in decision making (18). For example, a person with quadriplegia may be able to independently perform tasks at work (e.g., by using a voice recognition program on a computer to compensate for upper mobility limitations) but need more extensive assistance from a personal attendant in performing activities of daily living (ADL) at home. Though dependent in ADL, the person maintains self-determination.
In order to be considered eligible for VR services, the consumer must have a disability that presents a significant barrier to employment and have a feasible vocational goal (4, 11). Assessment is an important part of the VR process and is a required initial step to determine if the individual is eligible for services. Once eligibility is determined, assessment is essential to understanding the functional impact of disability on the consumer. Based on results of the assessment, the rehabilitation counselor and consumer identify a vocational objective and begin planning services needed to attain that objective.
IL services, on the other hand, acknowledge the effect of disability on the client, but do not require a thorough analysis of the client, nor the disability, as a prerequisite to the provision of services. In addition, IL services are totally separate from a consumer’s eligibility for VR services. For example, a consumer may not desire to seek employment or VR services but be able to access IL services. The success of IL programs depends on the people and resources in the community for direction and support. Consumer involvement is key and is assured through the governance structure of ILCs, which must be managed by persons with disabilities; in addition, the ILCs must ensure that a majority of the staff, including those responsible for decision making, as well as the governing Board, are persons with disabilities (19). IL services are aimed at addressing personal and environmental difficulties. In general, research has outlined the following areas for IL programs to address: self-image, well-being, functional limitations, health behaviors, interpersonal skills, and environmental barriers the system level (e.g., regulations, physical access) and within community (e.g., medical providers, social and family support). The appropriateness of IL services is based on the rights of people with disabilities for dignity, freedom, and control of their destiny. A major emphasis is that services assist with modifying the environment, not the person (4). Table 17-1 highlights some of the differences between VR services in the state-federal system and IL services provided by ILCs.
TABLE 17.1 VR and IL Services | ||||||||||||||||||||||||
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Consumer sovereignty and empowerment have always been the underpinnings of the IL movement. Persons with disabilities encounter an array of both physical and social discrimination. Empowerment is needed to battle discrimination in housing, employment, education, poverty, and social isolation (15). Empowerment is a form of self-determination where people with disabilities, via advocacy (self or institutional) have a right to determine their destiny. The Rehabilitation Act Amendments of 1998 also formalized consumer choice in the VR process and planning. Consumer sovereignty, sometimes referred as consumer involvement, asserts that people with disabilities can best judge their own interests and should ultimately determine what services are provided to them (16). This
current rise of consumerism directly challenges the traditional service delivery system. There has been a gradual de-emphasis on professional decision making with respect to case planning; accordingly, service provision plans are now drawn up jointly by the individual with the disability along with his or her counselor. Because of the increased awareness created by advocacy skills training at ILCs, many people with disabilities are better informed about their benefits and the regulations of the agencies with which they must deal (20).
current rise of consumerism directly challenges the traditional service delivery system. There has been a gradual de-emphasis on professional decision making with respect to case planning; accordingly, service provision plans are now drawn up jointly by the individual with the disability along with his or her counselor. Because of the increased awareness created by advocacy skills training at ILCs, many people with disabilities are better informed about their benefits and the regulations of the agencies with which they must deal (20).
LEGISLATIVE HISTORY
World Wars I and II as well as an array of legislation since the early 20th century have had a significant impact on VR programs and the IL movement (4). Refer to Table 17-2 for a summary of VR’s legislative history. The United State’s VR program began in 1918 with the passage of the Soldiers’ Rehabilitation Act. The Federal Board for Vocational Education, established in 1917 by the Smith-Hughes Act (PL 65-178), was authorized to create VR programs for veterans with disabilities and the U.S. Department of Labor’s task was to locate employment for these individuals (11). The Smith-Fess Act of 1920, vocational rehabilitation legislation, was then passed to serve civilians with physical disabilities who were either totally or partially incapable of remunerative employment. State-federal fund matching was used for services, which included vocational guidance, vocational education, occupational adjustment, and placement. Although physical restoration was not emphasized, a prosthetic device would be provided if it was necessary for the person with a disability to complete vocational training (4). The 1920 bill had to be reauthorized every few years and
consequently was frequently in jeopardy of being discontinued. Fortunately, the groundbreaking Social Security Act of 1935 included unemployment compensation, old age insurance, aid to dependent children, maternal and child health services, as well as other important programs. In addition, the VR program was made permanent so that an act of Congress would be required to dismantle the VR system. Similar to the veterans’ rehabilitation program, federal monitoring of civilian rehabilitation had become the duty of the Federal Board for Vocational Education. The Randolph-Sheppard Act of 1936 and WagnerO’Day Act of 1938 provided opportunities for individuals with visual impairment to operate vending stands on federal property and required the federal government to purchase certain products from workshops for the blind, respectively (4).
consequently was frequently in jeopardy of being discontinued. Fortunately, the groundbreaking Social Security Act of 1935 included unemployment compensation, old age insurance, aid to dependent children, maternal and child health services, as well as other important programs. In addition, the VR program was made permanent so that an act of Congress would be required to dismantle the VR system. Similar to the veterans’ rehabilitation program, federal monitoring of civilian rehabilitation had become the duty of the Federal Board for Vocational Education. The Randolph-Sheppard Act of 1936 and WagnerO’Day Act of 1938 provided opportunities for individuals with visual impairment to operate vending stands on federal property and required the federal government to purchase certain products from workshops for the blind, respectively (4).
TABLE 17.2 Legislative Highlights of VR and IL Programs | ||||||||||||||||||||||||||||||||||||||||||||
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Between 1920 and 1943, VR provided services to only those with physical disabilities. The Barden-Lafollette Act of 1943 expanded services to individuals with mental retardation, mental illness, and blindness. World War II was monumental in changing the civilians’ and veteran rehabilitation systems. During the wartime industrial labor shortage, persons with disabilities demonstrated their ability to work. Furthermore, medical advances, such as the development of antibiotic medications, meant that many more military persons were able to survive. In fact, the board of physical medicine was established within the AMA at this time. The New York University medical school, under the leadership of Dr. Howard Rusk, established the first department of physical medicine (4). The Servicemen’s Readjustment Act (PL 73-346) of 1944, known as the “GI Bill of Rights,” guaranteed up to 4 years of tuition and a stipend for living expenses for returning veterans, whether disabled or not. Between 1943 and 1953, over 600,000 World War II veterans obtained VR services while another 8 million took advantage of the GI Bill.
The Vocational Rehabilitation Act Amendment of 1954 (PL 83-565) laid the groundwork for a tremendous expansion of the rehabilitation programs. Important facets of this legislation included authorization for the use of federal funds to build and expand rehabilitation facilities, authorization of training grants to institutions for the education of new rehabilitation professionals, and extensive funding for research and demonstration projects to improve and disseminate knowledge of rehabilitation treatment. This legislation promoted the professionalization of VR by establishing graduate-level training programs throughout the United States. However, this increasing professionalism led to the alienation of many people who became part of the disability rights movement of the 1970s and 1980s. The ratio of federal to state matching funds changed from 50-50 to $3 for every $2 of state funds. The legislators also authorized 30 million dollars to the States for rehabilitation purposes and expanded annual funding. Research demonstration grants allowed state rehabilitation agencies or nonprofit agencies to conduct projects directed specifically at VR (4). Now, disability arenas such as the psychological, social, and behavioral components of disabilities were studied in a systematic manner. Results were then applied in training programs, policy and rehabilitation service mandates (15).
The Vocational Rehabilitation Act Amendments of 1965 expanded the federal state funding ratio to 75% to 25% and addressed extended evaluation for individuals with severe disabilities to determine if VR services would be beneficial. The Amendments also extended eligibility to include “behavior disorders,” which made it possible for those with substance abuse problems, public offenders, and those who were socially disadvantaged to obtain VR services. However, this provision was removed in the 1973 Rehabilitation Act due to financial as well as time constraints.
In 1961, legislation was introduced requesting that Vocational Rehabilitation Agencies provide IL services; however, it failed to pass. In 1972, a new bill (HR 8395) was written and passed to replace existing VR legislation by including comprehensive rehabilitation services and IL provisions. This legislation was vetoed by President Nixon, who believed that IL would dilute the resources of the VR program. The bill was resubmitted in 1973 and once again vetoed, as the President’s advisors felt that the rehabilitation of people without vocational potential was too expensive. In 1973, a compromise was reached and the Rehabilitation Act was made into law. Although the IL provisions were eliminated, an emphasis was placed on the delivery of VR services to individuals with severe disabilities.
The Rehabilitation Act of 1973 was a powerful piece of legislation and had a major impact on VR programs. Additional important features of the Act were the creation of the Individualized Written Rehabilitation Plans (now called the Individualized Plan for Employment or IPE) and consumer grievance procedures. These two innovative measures emphasized for the first time the notion of consumer empowerment, with simultaneous changes in language from “client” to “consumer.” Now, clients were seen as consumers, and this change acknowledged that the traditional “paternalistic” attitude of the service provider was a barrier to rehabilitation. Consumers became more assertive than in the past and were empowered to make autonomous decisions with the assistance of trained VR professionals. In this paradigm, people with disabilities work as a team with the rehabilitation counselor, occupational therapist, physical theraphist, physiatrist, and other medical professionals, signaling a change from the past, when they were expected to be compliant recipients of care (4, 15, 21, 22).
Consumer advocacy was a powerful driving force on the tenets of the Rehabilitation Act of 1973. The act included a number of provisions to address discrimination and environmental barriers, as follows: (a) Section 501, mandating that the federal government itself practices nondiscrimination in its hiring practice; (b) Section 502, establishing the Architectural and Transportation Compliance Board to enforce accessibility standards for persons with disabilities; (c) Section 503, prohibiting discrimination in the hiring process based on disability status (which applied only to federal contract recipients or subcontractors); and (d) Section 504, in which participation from any federally sponsored program was prohibited for any qualified person with a disability. These programs included schools (elementary, secondary, postsecondary), hospitals, clinics, and welfare agencies. Accessibility of programs was
emphasized. This legislation mandated that employers or institutions receiving federal funds were required to make “reasonable accommodations” for otherwise qualified people with disabilities. For employers, this meant job restructuring, workplace modifications, provision of specialized training, or ongoing support (4).
emphasized. This legislation mandated that employers or institutions receiving federal funds were required to make “reasonable accommodations” for otherwise qualified people with disabilities. For employers, this meant job restructuring, workplace modifications, provision of specialized training, or ongoing support (4).
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