The purpose of this paper is to examine the history, current status, and future of the relationship between the State/Federal Vocational Rehabilitation (VR) program and Independent Living (IL) centers. It is not intended as an exhaustive study of relationships between all VR programs and IL centers, but rather an effort to examine trends, generalities, and future possibilities in the relationship between these two entities. IL and VR have provided services to people with disabilities for many years, using different techniques and philosophies. Yet despite their differences, IL and VR continue to find common ground in their on-going collaborative efforts.

Historical Issues

Examination of the current and future relationship between the VR program and IL centers must begin with an understanding of the history and evolution of the two movements. Factors in their respective histories continue to influence the present and future of this relationship.

Vocational Rehabilitation

The VR program was initiated in 1920 with the passage of the Smith-Fess Act (P.L.66-236). It was modeled after a program established in Massachusetts in 1918 and, for the most part, borrowed strategies used by existing programs for World War I veterans. Passage of this law reflected a growing national awareness that federal funds should be directed toward assisting persons with disabilities in achieving employment goals. Initially, the program was restricted to persons with physical disabilities. During the ensuing years, however, the scope of the program was expanded to include a much wider range of disabilities. In 1943, persons with mental retardation and mental health disabilities were added to the scope of disabilities served and physical restoration services were added to the repertoire of services. In the 1960's, major expansion of the program included persons with alcohol and chemical addictions and personality disorders. Major priorities were placed on persons receiving public assistance benefits, adult and juvenile public offenders, and public school students with disabilities. Migrant workers with disabilities were subsequently added as a priority group. All the while, employment remained the sole focus of the program.

In 1973, substantial changes were made to the legislation that authorizes the program. The name of the legislation was changed from the Vocational Rehabilitation Act to the Rehabilitation Act of 1973. This is important in that it acknowledged that the legislation contained more than just vocational rehabilitation issues. Moreover, for the first time, priority was given to persons with severe disabilities. Title V was also added which contained important civil rights issues. These included affirmative action programs for employment of the handicapped with the federal government, barrier-free work areas in such places, the creation of the Architectural and Transportation Barriers Compliance Board, and nondiscrimination on the basis of handicap for programs and activities receiving or benefiting from federal financial assistance.

Subsequent amendments to the Rehabilitation Act have continued the trend of broadening the scope of vocational rehabilitation services and adding new initiatives. Consumer choice in the provision of services has been significantly increased; however, services continue to be managed primarily by rehabilitation professionals. The focus of the VR program has been and remains upon employment.

Independent Living

The 1978 Amendments to the Rehabilitation Act were extremely important in that they included Title VII, which created a national program for independent living services. While this was indeed landmark legislation, it did not come easy. In fact, it came about as a result of many years of intense effort by advocates for independent living services.

Understanding of the IL movement must begin with the fact that it grew out of a disability rights movement with origins as far back as the 1950's. Some leaders in the rehabilitation profession, such as E. B. Whitten, began proposing a comprehensive services system as an alternative to the existent vocational system. This included the concept that persons with disabilities "too severe for vocational potential" should have alternatives to living in institutions or being dependent on the family.

In the 1960's and early 1970's, several groups of persons with severe disabilities in such divergent parts of the country as Berkley, California; Boston, Massachusetts; and Houston, Texas, began advocating for more self-determination in their life styles. Most notable of these leaders in the emerging disability rights movement were Ed Roberts and Judy Heumann in Berkley, California. They proposed such revolutionary concepts for the time as considering persons with severe disabilities as "consumers" rather than "patients." They also proposed that persons with severe disabilities should have the same options as everyone else, e.g., they should be able to determine where they lived, worked, traveled, and played (Thayer and Rice, 1990).

It is also important to note that many of the early leaders of the IL movement had experienced what they perceived as negative relationships with both the medical rehabilitation system and the VR system. In the case of the latter, this often involved being denied services because their disabilities were judged too severe or they lacked vocational potential. In some instances, they perceived that they were channeled toward "feasible" vocational goals instead of being allowed to pursue their expressed goals. These experiences impacted the development of the disability rights and independent living philosophies and, to some degree, the vestiges of those feelings still exist today. Moreover, the fact that the early leaders in the movement felt that they had to fight for their rights against a system that they felt allowed them little control over their lives and little power in the decision-making process led to a strong advocacy commitment. From these early experiences, the VR program was often viewed as an adversary instead of a partner in achieving consumer goals (Thayer and Rice, 1990).

The disability rights movement came to fruition at a time when other minority groups were also advocating for and making progress toward achieving equal rights. There can be little doubt that the civil rights movement and the resulting gains made by other groups such as racial minorities and women had an impact on the emerging disability rights and independent living movements.

Philosophical Differences

From its inception, the VR program has focused its priorities and services upon the person with the disability. The program attempts to improve the person's employability through a wide array of services provided primarily by vocational rehabilitation counselors. These include evaluation, physical restoration, skills development, various adjustment services, rehabilitation technology, medical equipment, vocational tools and supplies, counseling, job placement, and related measures. The goal has always been an employment outcome.

The independent living philosophy, on the other hand, has always viewed the barriers to independence as being primarily the environment in which persons with disabilities live. Architectural barriers, transportation barriers, attitudinal barriers, and lack of community-based services are viewed as the primary obstacles to be overcome. Moreover, the goals of independent living (IL) movement are much broader than the VR program. Advocacy (both for individuals and changes in systems) is viewed as a major priority, and employment is seen as one of many goals that a person with a disability might seek. Service delivery is primarily through persons with disabilities, and the major focus is upon the right of self-determination and self-control of the person's life style.

Current State of the Relationship

More than twenty years have passed since passage of the 1978 Amendments to the Rehabilitation Act and while many positive activities have occurred between VR agencies and IL centers, there is still much to be desired and accomplished. The relationship varies greatly from state to state and from locality to locality. In California and Nevada, collaborative efforts have included such activities as shared location of staff. In Texas, the VR agency has sought and acquired state funding that has been used to enhance and expand the scope and activities of IL centers. In Kansas, the VR agency has developed fee-for-service relationships with IL centers to provide job-coaching services. In other instances, VR agencies and IL centers have worked together for passage of legislation that both agree would be beneficial to persons with disabilities.

Recently, in order to obtain detailed information about exemplary collaborations, InfoUse distributed "best practice" nomination forms to a wide variety of organizations. These included all state VR agencies, Statewide Independent Living Councils (SILC's), the governing bodies of American Indian tribes located on federal and state reservations, several National Institute on Disability and Rehabilitation Research (NIDRR) funded Rehabilitation Research and Training Centers, and more than 350 IL centers (Hanson and Temkin, 1999). The preliminary results indicated the following characteristics of existing collaborations:

• Current projects are found in all regions of the United States and include two tribal VR agenies.
• Half of the projects serve rural areas. This perhaps suggests that in areas where services are scarce, VR agencies and IL centers perceive a need to share resources despite ideological differences.
• Most collaborations are structured around formal agreements; however, some collaborations are based on informal working agreements between local VR and IL center staff. Both formal and informal collaborations typically involve cross-referrals, fee-for-service arrangements linked to consumer-written vocational plans, and VR-subsidized payments for IL center-provided services such as job coaching.
• Most collaborations are cross-disability oriented, but some target specific disabilities such as deaf or deaf-blind.
• Many of the collaborations involve employment-related activities such as training in job preparation skills, skills training, transportation services, preparation of self-employment, return to work case management, accommodation and assistive technology evaluation, employability assessment, and job coaching.

ILRU Project

The Independent Living Research Utilization (ILRU) Program in Houston has recently attempted to improve the relationship through a five-year NIDRR-funded grant project focused upon that objective. The project proposed to gather information on collaborative efforts, survey a wide range of individuals and organizations involved in one or both of these entities, identify demonstration sites, evaluate data collected from these efforts, and develop and disseminate recommendations for enhancement of the relationship.

One important aspect of this project involved establishing a task force of leaders in these fields to attempt to develop an agreement regarding "Common Ground." This effort was initiated through a meeting on April 9, 1997, in Bethesda, Maryland. The meeting was attended by representatives from state VR agencies, IL centers, statewide independent living councils (SILC's), the Rehabilitation Services Administration (RSA), the National Institute on Disability and Rehabilitation Research (NIDRR), the National Council on Disability (NCD), and the National Council on Independent Living (NCIL). RSA and NIDRR provided funding for the meeting.

The goals of this meeting were the following:

• Identify issues, which may be contributing factors in barriers to effective collaboration.
• Explore ways in which to deal constructively with issues, which may pose barriers to effective collaboration.
• Examine the role of various agencies (e.g., SILC's, Rehabilitation Advisory Councils (RAC's), and RSA regional offices) in promoting coordination of services through organizational collaboration.
• Establish an agenda for the task force in furthering efforts to promote effective collaboration.

All task force members were asked to discuss issues rather than personalities and to develop a collective product that could assist in developing greater collaboration. The task force was told that all members were to be considered equal participants and that their contributions would be considered equally.

Participants were asked to cite examples of effective collaboration in their respective areas. Examples included the following:

• Collaboration is substantially reducing regulatory policies and procedures.
• VR funds (Title I) are being used to purchase IL products and services that are specified in Individualized Written Rehabilitation Programs (IWRP's) for consumers.
• In some instances, SILC's and RAC's are effectively guiding service development and implementation for both IL and VR programs.
• Some states are developing common agendas at both the "macro" and "micro" levels.

Task force members were also asked to cite examples of barriers to effective collaboration. Examples included the following:

• There are differences in "culture" between IL and VR programs. IL focuses primarily upon disability rights and integration, and VR focuses primarily upon employment (a focus mandated by the legislation supporting the VR program).
• The two programs often do not have common goals, possibly attributable in part to the lack of common training experiences.
• There is an absence of an "equal" partnership as viewed by some IL representatives, primarily attributed to control of IL funding by VR agencies in some states.
• There is a difference in "view" between the two entities. IL people tend to take a long-term view associated with achievement of full rights and equal opportunity. VR people tend to take a shorter-term view associated with employment outcomes and quarterly measurable outcomes, as mandated by law.
• During re-authorization of the Rehabilitation Act, conflicts sometimes occur over allocation of available funding.

Considerable dialogue revolved around these issues including the dilemmas faced by the VR program as they attempt to carry out their mandate to serve persons with more severe disabilities. These included higher service costs, increased staff time requirements, and reduced numbers of persons successfully closed in employment. The latter can be particularly problematic when the program is evaluated by legislators and policy makers who may not have a full understanding of the impact of this mandate. Reduction in successful closures can be interpreted as poor performance by the agency instead of the result of changes in the consumer population served.

Perhaps the most significant result of this meeting was the development of the draft letter identifying "Common Ground" issues that are of interest to both entities (See Appendix). The three issues identified were the following:

It was anticipated that these issues would serve as a beginning point for development of future "common ground" issues and ultimately greater collaboration between the two programs. Feedback from participants reviewing the "Common Ground" letter indicated they still had areas of concern. The collaborative atmosphere created by the task force could not be sustained when the attendees returned to their prospective roles. While some of the attendees were unwilling to sign the "Common Ground" letter, to this day positive collaborations continue to occur between IL and VR in various locations.

Another part of the ILRU initiative included a survey of the perceived relationship between IL centers, SILC's, and VR agencies. Survey forms were sent to representatives of these three entities in six states-California, Kentucky, Louisiana, Missouri, North Carolina, and Pennsylvania. A total of 51 completed survey forms were returned for analysis. The following preliminary results give an interesting picture of the current status of the relationships:

Independent Living Centers and Vocational Rehabilitation

• The average rating of the effectiveness of the relationship between IL center personnel and VR personnel in the respondents' states was 6 on a scale from 1 to 10.
• Eighty-eight (88) percent of the respondents perceived barriers to effective collaboration between IL center personnel and VR personnel.
• The four major barriers identified were "turf" issues (who provides what services), lack of understanding, different philosophies, and funding issues.
• Eighty-eight (88) percent of the respondents stated that events in recent years had affected the working relationship between IL centers and VR agencies.
• Twenty-eight (28) percent said the results of these events had been positive; fourteen (14) percent said the results had been negative; and forty-nine (49) percent said the results had been mixed.
• The events cited included general lack of support, personnel changes, funding of grants, and support from the VR state director.

Vocation Rehabilitation and Statewide Independent Living Councils

• The average rating of the effectiveness of the relationship between VR agencies and SILC's was 6 on a scale from 1 to 10.
• Sixty-five (65) percent of the respondents perceived barriers to effective collaboration between the state VR agency and the SILC.
• The four major barriers cited were bureaucracy (politics), lack of communication, funding issues, and the fact that the SILC is not treated as an equal partner.

Independent Living Centers and Statewide Independent Living Councils
 

• The average rating of the effectiveness of the relationship between IL centers and SILC's in the respondents' states was 5 on a scale from 1 to 10.
• Eighty-eight (88) percent of the respondents perceived barriers to effective collaboration between IL center personnel and SILC personnel.
• The five major barriers noted were the need to work together more, lack of understanding, power struggles, distrust, and the fact that the SILC lacks knowledge of IL philosophy.

Recommended Steps for Improvement

The respondents provided the following suggestions as to steps that might be taken at the individual, community, state, and national levels to enhance working relationships between personnel of IL centers, VR agencies, and SILC's:

1.    Training for each of the groups to enhance understanding of their respective roles
2.    Training for IL centers and their boards regarding administrative issues
3.    Joint meetings between IL center personnel and VR personnel to improve communication
4.    Replacement of personnel that hinder collaborative efforts
5.    Identification of state and local issues that IL centers and VR agencies can address jointly

From these efforts it is clear that although progress has been made, there is still much to be done in the area of collaboration.

"If these steps are taken, substantial improvement could occur and persons with disabilities would be the beneficiaries."

What the Future Holds

If all parties involved do not focus efforts on improving collaboration, the future will likely look very much like the present. There will be areas where working relationships between IL centers and VR are excellent and joint programming and resources are directed toward meeting consumer needs. There will be other areas where the relationship has some positive and some negative aspects.

If the relationship improves significantly, several steps are needed; most of which depend upon changes in attitude:

• Both need to recognize that they have the same broad mission-improving the quality of life for persons with disabilities. Their differences are basically in the way they go about accomplishing that mission.
• Both entities need to look past their perceived differences and focus on the fact that both provide valuable services to persons with disabilities, some of which are largely available only through one or the other service programs. This needs to develop into mutual respect.
• Both entities need to recognize that their approach is not the only viable way of addressing the needs of persons with disabilities.
• Both entities need to adopt the attitude that the needs of persons with disabilities are many, complex, and varied. Although the two entities are different in their philosophies and service strategies, that diversity should be celebrated in that it adds to the possible strategies and resources that may be used in meeting the needs of the consumers that they are both charged with serving.
• Both need to recognize that by collaboration each entity can expand its available resources to meet the needs of persons with disabilities.
• Both entities need to actively look for "win / win" activities that benefit both parties. Conversely, they need to avoid promoting activities that would benefit one at the expense of the other. For example, they need to promote increased funding for all programs that benefit persons with disabilities and avoid adversarial relationships focused upon getting their share of funding at the expense of other programs.
• Exposure and communication tend to enhance understanding and appreciation of other's views and perspectives. Both entities need to look for, promote, and organize joint training and other networking activities.
• Organizations in leadership capacities for both entities need to actively promote collaboration while recognizing the right of both entities to exist as viable components of the service delivery system for persons with disabilities. These include the Council of State Administrators of Vocational Rehabilitation (CSAVR), the National Independent Living Council (NCIL), the Rehabilitation Services Administration (RSA), the National Rehabilitation Association NRA), Rehabilitation Advisory Councils (RAC's), and Statewide Independent Living Councils (SILC's).
• Although leadership from the national and state organizations is very important in the effort to improve collaboration, it is equally important not to depend solely on leadership organizations to accomplish the goal. It is important that all persons in both movements examine their relationships and look for ways to enhance services through collaboration at the "grass roots" level.

If these steps are taken, substantial improvement could occur and persons with disabilities would be the beneficiaries. In the meantime, worthwhile collaborations between IL and VR continue to take place.

References

Hanson, S., and Temkin, T. (1999). "Collaboration Between Publicly-Funded Rehabilitation Programs and Community-Based Independent Living Centers," RRTC Issue Brief, Volume 1, Issue 1.

Means, B., and Bolton, B. (1992). "A National Survey of Employment Services Provided by Independent Living Programs," Journal of Rehabilitation, 58 (4, Oct/Nov), 22-26.

"Minutes of April 9, 1997, Meeting of the Task Force on Collaboration Involving Representatives of Vocational Rehabilitation and Independent Living at Bethesda, Maryland," ILRU.

Thayer, T., and Rice, B. (1990). "Vocational Rehabilitation Services in Independent Living Centers," Seventeenth Annual Institute on Rehabilitation Issues. University of Arkansas, Arkansas Research & Training Center in Vocational Rehabilitation.

Unpublished "Common Ground" feedback forms (1997), ILRU.

Unpublished draft letter establishing "Common Ground" (1997), ILRU.

Unpublished preliminary results of a survey concerning collaboration between VR, ILC's, and SILC's (1997), ILRU.

APPENDIX
 

Draft Letter Establishing "Common Ground"

The purpose of this letter is to establish issues of concern to both the vocational rehabilitation community and independent living community that may serve as "common ground" in developing working relationships that address more effectively the needs of persons with disabilities who are struggling for equality in our communities. This letter grew out of a meeting held in Bethesda, Maryland on April 9, 1997, involving people from state vocational rehabilitation (VR) agencies, centers for independent living (CIL's), and statewide independent living councils (SILC's). Representatives of the Rehabilitation Services Administration (RSA), the National Institute on Disability and Rehabilitation Research (NIDRR), the National Council on Disability (NCD), and National Council on Independent Living (NCIL) also participated.

The meeting involved a great deal of constructive discussion around key issues related to IL and VR collaboration and barriers to effective collaboration. It also involved some healthy disagreement on issues that need to be brought forward and dealt with constructively if progress is to be made toward more effective collaboration. Key points of the meeting were summarized in minutes which are available to interested parties.

Identification of a few points of common concern to persons in both the VR and IL arenas is intended to provide a focus for continuing dialogue intended to bring these two critical components of the disability service system together in a manner which results in greater opportunities for people with disabilities around the country. The three issues identified in this letter were ones which clearly emerged from the April 9 meeting as ones on which IL and VR personnel could find some common ground in proposing legislative, regulatory, and operational strategies which benefit not only affected agencies and community organizations, but more importantly people with disabilities whom we serve.

Three issues emerged as ones in which common ground can be identified and which can provide a focus for efforts to enhance collaboration between IL and VR. These are:

Funding: Efforts must be made to expand the funding base so that the needs of people with disabilities can be addressed more effectively through enhancement of both service systems rather than at the expense of one component of the service system in order to benefit the other.

Accountability: Strategies must be developed that provide a means for recognition of long-term gain, rather than simply short-term outcomes, and that recognize differential resource commitments that are required in order to address effectively the needs of persons who have varying levels of disability and access to different levels of community support.

Training: Training initiatives should be developed and implemented which bring IL and VR people together in shared learning experiences which foster understanding of each other's views and perspectives and which heighten awareness of the demands made on personnel in job roles different from those with which we are familiar.

These three sets of issues provide "jumping off" points from which to begin developing a more comprehensive agenda for fostering IL-VR collaboration. As efforts progress, additional issues will be identified around which activity toward mutual benefit may be mounted.

ILRU will continue to provide support for activities targeting these issues, as well as others that may be identified by the leaders of the IL and VR communities. ILRU's role in this initiative will be one of facilitation and support, with responsibility for directing the efforts resting with IL and VR leaders who are designated to represent their respective agencies and organizations.

By signing this letter, the representatives of IL and VR agree to commit their support to continued effort to pursue these issues. Furthermore, by signing this letter, the representatives of IL and VR commit themselves and their organizations to act in a manner that puts the needs of people with disabilities ahead of the agendas or preferences of individuals or organizations whose primary interests may be related to financial gain or other benefit derived from service planning, delivery, or evaluation.

We that undersigned agree to move forward toward greater collaboration and service efforts designed to enhance the quality of life for people with disabilities.

The RRTC on Management of Centers for Independent Living primary objective is to enhance the scope and quality of independent living services provided through consumer-controlled, community-based independent living centers located throughout the country.

Since 1977, ILRU has served as a national center for information, training, technical assistance, and research on independent living. ILRU is affiliated with TIRR Systems, a corporation providing a continuum of services to people with disabilities.

Author

Ted Thayer has worked in the fields of vocational rehabilitation and independent living for more than thirty years. He has served as a Vocational Rehabilitation Counselor, Program Specialist for Neuromuscular Disabilities, and Director of Independent Living Services during a twenty-five year career with the Texas Rehabilitation Commission. For most of that time, his vocational rehabilitation responsibilities focused upon program development, consultation, staff training, and evaluation of statewide programs and services for persons with severe physical disabilities.

In 1972, he helped establish a collaborative effort between the Texas Rehabilitation Commission, The Institute for Rehabilitation and Research, the Rehabilitation Services Administration, and a group of young adults with severe physical disabilities to create one of the early independent living models in the United States-the shared attendant services project in Houston. That project was focused upon consumer control in the management of attendant and transportation services. He subsequently wrote and managed the grants to establish the first five consumer-controlled, cross-disability, community-based independent living centers in Texas. His responsibilities also included providing technical assistance to those centers.

In recent years, he has served as Executive Director of the Brain Injury Association of Texas and is currently self-employed as a rehabilitation consultant in the forensic rehabilitation field. He has authored several publications and made numerous presentations in the fields of vocational rehabilitation and independent living.

This research is made possible through the support of the Rehabilitation Research and Training Center on Management of Centers for Independent Living funded by the National Institute on Disability and Rehabilitation Research.  (Grant #133B950003) Copyright (c) 1999 ILRU

Staff

Pamela Dautel, M.P.H.
Research Coordinator
Lex Frieden
Executive Director
Margaret Nosek, Ph.D.
Director of Research
Laurie Redd
Administrative Coordinator
Laurel Richards
Director of Training