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The whole is greater than the sum of it's parts (at least, now it can be).

The disability movement has traveled far - from an early belief that disability was punishment for committing a sin to the current broadbased drive for self-determination, independence, and community integration. The current national rehabilitation system began with a narrow focus on employment, which in response to the disability movement has been gradually broadened to include a wide range of rights and services for people with disabilities. Passage of the Rehabilitation Act Amendments of 1992 established policies and opportunities that now promise to make the rehabilitation system far more than the sum of its parts.

Since the initial Vocational Rehabilitation Act of 1920 (Smith-Fess Act, P.L. 66-236), rehabilitation agencies have provided independent living services of varying degrees to people with severe disabilities when these services were considered to be directly related to achievement of the vocational goal. Yet, for the most part, the vocational rehabilitation (VR) system did not address all the needs of most persons with severe disabilities and their aspirations to achieve greater economic and social independence.

The civil rights movement helped launch the independent living (IL) movement as a recognized social initiative during the early 1970's. The independent living movement was developed as part of the civil rights movement by people with disabilities who realized their issues were the same as other oppressed groups. The philosophy underlying the movement holds that people with disabilities have the same right to control their own fives and have access to the same opportunities as people without disabilities. The movement seeks to empower people with disabilities to participate fully in the affairs and benefits of society through provision of a broad range of information, advocacy, community development, and skills training services.

The independent living movement was the catalyst that brought about significant changes to the original purpose and scope of the national rehabilitation system. Through the movement's involvement, the statutory name was changed to the "Rehabilitation Act" in 1973, amendments added independent living centers and services via the addition of Title VII in 1978, and the broadened statutory purpose was strengthened in the 1986 amendments. Following passage of the Americans with Disabilities Act (ADA) in 1990, the 1992 Amendments to the Rehabilitation Act integrated consumer control and the independent living philosophy throughout the Act. The 1992 amendments not only require better linkages of independent living centers and their services with VR programs, but calls for broad-based collaboration and partnerships. The independent living movement and the independent living centers and their holistic, empowerment approach are now defined as integral parts of the nation's rehabilitation system.

The philosophy of the disability movement is strongly reflected in the findings and policy of both ADA and The Rehabilitation Act amendments of 1992. These findings of Congress reflect the disability movement and the continuing evolution of the nation's rehabilitation system, including both vocational rehabilitation and independent living services. Both acts highlight the independent living movement's push to establish the principle of civil rights for persons with disabilities by reflecting the disability movement's contentions regarding discrimination. Perhaps the most telling of all the statements in Section 2 of the Rehabilitation Act findings is the statement that:

"Congress finds that ... individuals with disabilities continually encounter various forms of discrimination in such critical areas as employment, housing, public accommodations, education, transportation, communication, recreation, institutionalization, health services, voting, and public services ... the goals of the Nation properly include providing individuals with disabilities with the tools necessary to make informed choices and decisions; and achieve equality of opportunity, full inclusion and integration in society, employment, independent living, and economic and social self-sufficiency, for such individuals (Section 2(a)(6)).

These findings support the following statement of policy from the Rehabilitation Act Amendments:

"It is the policy of the United States that all programs, projects, and activities receiving assistance under this Act shall be carried out in a manner consistent with the principles of (1) respect for individual dignity, personal responsibility, self-determination, and pursuit of meaningful careers, based on informed choice, of individuals with disabilities; (2) respect for the privacy, rights, and equal access (including the use of accessible formats), of the individuals; (3) inclusion, integration, and full participation of the individuals; (4) support for the involvement of a parent, a family member, a guardian, an advocate, or an authorized representative if an individual with a disability requests, desires, or needs such support; and (5) support for individual and systemic advocacy and community involvement" (Section 2(c)).

These statements legitimize the drive of the disability community to press for equal opportunity for persons with disabilities in all areas of life. They also clearly call for a more integrated approach to providing the necessary services and advocacy to ensure that maximum self-sufficiency is possible. The findings and policy provide a mandate for "all programs, projects, and activities" under the Rehabilitation Act to become more reflective of the issues inherent in the disability rights movement. This includes: recognition that persons with disabilities can participate in developing a vocational goal and going to work, regardless of the level of disability; support for consumer choice in developing such career choices; emphasis on a system of rehabilitation that "assists States and providers of services in fulfilling the aspirations of such individuals with disabilities for meaningful and gainful employment and independent living."

These national findings and policies provide a basis for moving towards a more direct connection between the VR system and the expanding independent living center service delivery system and for developing a methodology to integrate the disability rights philosophy of consumer involvement into all parts of the systems.

The challenge is to identify ways in which independent living centers and vocational rehabilitation programs can collaboratively build upon the individual strengths of each program and constructively and appropriately play a more empowering role for consumers. This collaborative approach should develop ways of integrating independent living services and independent living centers and vocational rehabilitation into a collaborative system that reflects the comprehensive and unified approach to rehabilitation services that is embedded in the 1992 amendments to the Rehabilitation Act. The impact of these changes are people with disabilities, taking control and responsibility for their own lives, living more independently in the community or with their families, and increasing their success in obtaining and, most importantly, maintaining employment.

Models for the integrated VR

and IL Service System

There is much debate about the structure of an integrated system and what it would look like. In accord with the "independent living paradigm," many in the independent movement consider VR as but one part of the field of independent living. Accordingly, they suggest that the independent living movement and the independent living centers and programs can contribute to successful VR outcomes. Likewise, in accord with the "traditional rehabilitation paradigm," VR practitioners consider independent living to be but one part of the field of rehabilitation and vocational rehabilitation. Accordingly, they suggest that the rehabilitation profession and process can contribute to successful independent living outcomes.

In fact, both are right. In an independent living center, the process of assisting a consumer in selecting and successfully achieving independent living goals many times involves choosing and completing a goal of going to work. Many independent living centers are now assisting consumers in working towards that goal. Likewise, a consumer in the VR system must work on many other issues besides the work goal. Issues such as housing and transportation ultimately impact on achievement of the vocational goal and going to work. Therefore, the VR counselor assists the consumer with these and many other similar issues along the path of going to work.

The problem has been that for the most part the two systems have been working in isolation and have not been sharing each other's resources, which, if combined, would ultimately benefit the consumer in many additional ways. The 1992 Amendments require a consumer directed approach which is more reflective of the holistic independent living model. It also supports the need for a rehabilitation counselor to assist the individual with disabilities towards achievement of going to work. A more consumer-oriented approach that includes the resources of both systems is the "new rehabilitation paradigm."

When both systems are combined "the whole is greater than the sum of the parts." Each system profits from the other, and the consumer is the ultimate beneficiary. Exploring these advantages - starting with ways in which the VR system itself is enhanced by collaboration with independent living centers - Wemonstrates how the whole is greater than the sum of the parts. The following list extracted from the most recent Institute on Rehabilitation Issues (IRI) on independent living and vocational rehabilitation gives 14 such examples of the benefits of independent living services for VR:

1. Positive peer modeling and support provided through independent living centers and programs can be an important factor in identifying vocational possibilities and facilitating development of an individual's motivation and vocational capacities.

2. Independent living centers provide an important information and referral resource for VR programs.

3. Independent living skills training programs can help develop a number of skills which are needed for successful job performance.

4. Independent living services provide a counseling resource which can be used by VR providers.

5. Independent living services can help coordinate the resources needed by a person for development and maintenance of vocational performance.

6. Independent living services can provide advocacy that is often essential in removing barriers and obtaining resources needed by a person for vocational performance.

7. Independent living services can help to enhance consumer self-direction, which is often a crucial factor in successful job performance.

8. Independent living centers can assist a person in developing an enhanced self-concept, which is an essential factor in successfully getting and maintaining a job.

9. Independent living services can help identify and address independent living needs which must be met as an important precondition to obtaining and maintaining employment.

10. The effectiveness of VR services can be enhanced through networking with other human service delivery systems, which can be facilitated through collaboration with independent living centers.

11. Independent living services can assist VR systems in accessing more severely disabled populations.

12. Independent living services can help with VR outreach and casefinding in rural and urban areas.

13. The consumer involvement principle of the independent living movement can help guide consumer input into VR programs.

14. Independent living centers can help develop enhanced consumer support for increased funding, legislative initiatives, and support for VR services. [Rice, B.D. (1990), Vocational Rehabilitation Services in Independent Living Centers. Arkansas Research & Training Center in Vocational Rehabilitation, University of Arkansas, Fayetteville, Arkansas.1

In similar manner, independent living centers can benefit from a collaborative relationship with vocational rehabilitation agencies. The Institute on Rehabilitation Issues on vocational rehabilitation and independent living suggested 12 ways in which independent living centers gain from this type of collaboration:

1. VR services can assist consumers in achieving increased independence through evaluation and preparation for, and participation in, employment.

2. VR services can assist the individual in exploring vocational options and making choices. This includes counseling and guidance as well as formal evaluation of employment aptitudes and preferences.

3. VR services can assist consumers in setting workable plans for developing vocational capacities and obtaining jobs.

4. VR services can assist in obtaining needed physical and mental restoration.

5. VR services can help a person gain skills that contribute to increased independent functioning as well as employment readiness.

6. VR services can assist in identifying available employment opportunities and in training individuals for them.

7. VR services can assist a consumer in obtaining other goods and services that contribute to enhanced independent functioning.

8. The VR delivery system can assist in dealing with the strong financial disincentives which often discourage employment.

9. VR, services can help place an individual in appropriate employment.

11. Providing services that can be purchased by the VR system can result in increased resources for the independent living center or program.

12. The effectiveness of independent living services can be enhanced through networking with other human service delivery systems, including the VR system.

Further explanation of these benefits is provided in the referenced Institute on Rehabilitation Issues, which is a good source of ideas for those working to improve the linkages between independent living centers and VR programs. These lists are by no means exhaustive but they are representative of the benefits to each component of a collaborative system. Responding to the mandates and opportunities presented by the Rehabilitation Act Amendments of 1992, some states have already begun to initiate closer collaboration between their independent living centers and the state agency for vocational rehabilitation.

The Massachusetts Experience

In Massachusetts each independent living center has a contract with their corresponding regional office (of a total of five regional offices in the state) to provide independent living services to active VR clients and to assist in their achieving their Individualized Written Rehabilitation Plan (IWRP) and vocational goals. Certain times during the week a staff person from the local independent living center (Massachusetts has a network of 10 centers) will meet in the area office(s) in their territory. The center staff person meets with VR counselors to discuss active clients and to discuss the particular independent living needs of that particular consumer. The staff person also meets on a regular basis with the consumers that he/she is assisting. Peer counseling, information and referral, and skills training are some of the services provided under the VRIL contract. Although the practice has only been formalized a few years, the level of referrals from the local VR office have increased so significantly that some of the larger centers have expanded their contracts so that additional staff may work with more than one local VR office at a time.

The most important aspect of this ralationship has been the development of mutual respect between IL center and VR office staff, which ultimately provides the consumer with a better opportunity to achieve his/her vocational goal, to go to work, and to live more independently. This sounds simplistic, nevertheless, it took many months to achieve this strategy. Before contracts could be developed, a certain level of trust had to be established between the IL center directors and the VR agency's regional directors.

Of the many meetings held, perhaps the most important was the first, because it was this meeting that set the tone of future negotiations. Commissioner Elmer Bartels made it clear to all parties that he was dedicated to the process of developing a closer working association that would ultimately lead to a more effective rehabilitation system for people with disabilities in Massachusetts. However, he also made it clear that it fell upon the two groups to decide upon a strategy which would best achieve this goal. He obligated the agency's fiscal resources with the understanding that the way in which the relationship developed would be up to the independent living center directors and the agency's regional directors. This has led to a collaborative relationship that is being built on the needs of consumers of services. The initial meetings were held 2 years ago. Today, many new service ideas are being discussed. For example, local offices are now receiving technical assistance requests concerning ADA from employers and other service providers. Because IL centers have significant experience in this area, VR offices are asking to expand the contracts so that the centers can assist in providing this service.

In addition to furthering the relationship between the VR systems and the IL centers, Massachusetts has worked to assure that the present Statewide Independent Living Council meets the mandates of the 1992 Amendments. The council produced a collaborative strategy that was used to develop the "Interim State Plan for Independent Living" for FY 1994. Through the use of this year's Title VII Part B dollars for the Massachusetts General State Agency, the council hired a consultant to assist in developing the attachments and other portions of the plan. The council's executive committee, in conjunction with the consultant and with participation by agency staff, developed a draft of the plan that was distributed to the council for final disposition at a meeting in June 1993. Because the council and the state agency worked collaboratively, the plan was co-signed by Commissioner Bartels and Council Chairperson Lorelee Stewart, with no changes after final approval by the council. This type of collaborative policy development - a give-and-take that ultimately led to an Independent Living State Plan reflective of the needs of consumers of the Commonwealth of Massachusetts-is indicative of what writers envisioned in the drafting of the 1992 Amendments to the Rehabilitation Act.

The Michigan Experience

Michigan has also developed strategies that will lead to a closer relationship between the independent living center network and the vocational rehabilitation system. The experience of Michigan's Independent Living Program illustrates how the Rehabilitation Act Amendments of 1992 provided both the opportunity and the need to develop and expand collaboration among state rehabilitation agencies and other community partners. The Michigan experiences, described by Ted Haworth, gives one model of how a collaborative strategy can be of great benefit to all concerned.

The primary participants in Michigan have been Michigan Rehabilitation Services (MRS) under the direction of Peter Griswold, the Michigan Commission for the Blind (MCB) under the direction of Philip Peterson, the existing State Independent Living Council (SILC), the Michigan Association of Centers for Independent Living (MACIL), and the Michigan Council for Independent Living (MCIL). MACIL is the professional organization of centers for independent living (CIL's) directors and staff, while MCIL is a statewide, cross-disability consumer-driven advocacy organization.

During the last year, these IL partners have been challenged by the requirements of the Rehabilitation Act Amendments of 1992 to deal simultaneously with five major interrelated long-term issues, including:

* distribution of Title VII Part C

funding to the CILs;

* use of Title VII Part B funding;

* use of state appropriations for CILs;

* development and submission of

the Title VII state plan; and

* establishment of the new Statewide

Independent Living Council.

The prevailing strategy has been to find or create "win/win" courses of action that benefit all participants.

The first major issue was distribution of Title VII Part C funding to the CIL's. For several years, MRS, SILC, and MACIL had negotiated the distribution of any available added Title VII CIL funding. Part of any added funding was used to give all CIL's a cost-of-living increase; another part used to increase funding for CIL's receiving the smallest grants. The long-term objectives were to move all CIL's toward a minimum level of federal and state "core funding," while at the same time reducing the historic inequity of funding among the CIL's.

Opportunity was provided under the Rehabilitation Act Amendments of 1992 for a major change in the funding distribution. The CIL's operated by MCB were no longer to be eligible under the new Title VII Part C, and the funds they had been receiving would be made available to the private, cross-disability CIL's. However, MRS would no longer be administering the CIL grants and could therefore not effect any changed funding distribution.

The Michigan partners came to agreement that an unmoderated bidding war among CIL's for the added funds was not desirable and, therefore, proceeded to develop a recommended distribution of Michigan's expected 1994 Title VII Part C funding. This recommendation was separately submitted to regional and federal RSA offices by SILC, MACIL, and MRS. In their federal grant application, each CIL submitted a budget in accord with the joint recommendation. The result is that all nine Michigan CIL's will be receiving the same level of Title VII Part C core funding, approximately $141,000 each. Equity in the distribution of core funding has been achieved and, even though the goal of $250,000 for each CIL has not yet been achieved, each CIL will be receiving a workable level of funding.

The second major issue was use of Title VII Part B funds (previously designated as Title VII Part A funds). Approximately 20 percent of the MRS Title VII Part A funds had been provided in planning grants to CIL's, with the remaining funds used by MRS for direct agency provision and purchase of IL rehabilitation services. MACIL, SILC, and MCIL members had long called for more, if not all, of these funds to be provided to the CIL's.

The Rehabilitation Act Amendments of 1992 established a changed situation in which use of the now designated Title VII Part B funds was to be determined jointly by MRS and the SILC and in which the costs for SILC had to be considered. As discussions and negotiations among the Michigan IL partners proceeded, there was agreement that, although a broad range of uses were authorized for funds under the new Title VII Part B the level of funding was totally inadequate to support a separate, statewide service delivery capacity. Further, the changed Title I requirements - especially the presumption of benefit in terms of an employment outcome - greatly expanded the ability of the Title I VR program to address peoples' independent living needs.

The IL partners finally negotiated multiple uses of Title VII Part B funding to be specified in the Title VII State Plan. These included meeting costs of the SILC, providing a grant for establishment of a new CIL, maintaining a small direct IL service capacity in MCB, providing small operational grants to each of the CIL's, and providing a small grant to help establish a staffed office for MACIL. The agreement also provided that MRS and MCB would share SILC costs based upon their respective allocations of Title VII Part B funds. Within context of the many issues addressed during development of the Title VII State Plan, these multiple uses of Title VII Part B funds reflected progressive fine-tuning of the collaborative plans to address specific needs of all partners.

The third major issue, use of state appropriations for the CIL's, grew directly from the first two. Michigan had (and still has) only a very small appropriation of state funds for CIL's, providing less than $10,000 for each of the nine CIL's. Under previous federal funding levels, most of the CIL's reported they needed these unrestricted funds to meet specific operational costs and were not willing to support any proposal that would add restrictions to the use of these funds.

The funding agreements described above changed this situation. With more federal core funding, the CIL's were now in a position to negotiate on use of the state funds. For several years, Michigan has had insufficient match to use all of its federal Title I allotment. This changed with the Rehabilitation Act Amendments of 1992, which provide increased flexibility to use Title I funds for services of community rehabilitation programs that facilitate the provision of vocational rehabilitation services to individuals or that contribute substantially to the vocational rehabilitation of a group of individuals. Michigan's IL partners thus had opportunity to develop a range of collaborative and group services which could be funded under the federal Title 1, matched by the state CIL appropriation.

Agreements finally negotiated for inclusion in the Title VII State Plan provide for each CIL to receive funds for services in support of the MRS VR program, with specific group, consultative, and individual services to be identified collaboratively between the CIL's and the local MRS offices in accord with the definitions of Title I. In addition, the agreements provide for special outreach and support services to underserved and minority populations, with the metropolitan Detroit CIL leading that effort. In this way, MRS will be enabled to use more of the available federal Title I funds, collaboration will be facilitated between MRS offices and CIL's, and increased efforts will be put into reaching and serving minority and underserved populations (including some of those who were previously served by the MCB CIL's).

Joint agency/SILC development and submittal of the Title VII State Plan was the fourth major issue. This requirement of the Rehabilitation Act Amendments of 1992 empowers the SILC with shared decision making authority, something far different from its previous advisory role. This represents a straightforward effort to force collaboration. If the agencies and SILC do not come to agreement on the State Plan, no one in the state can receive funding under Title VII. Looked at from a negative perspective, each participant has the power to deny Title VII funds to the other.

The foundation for constructively dealing with this change was already in place in Michigan. The existing SILC had been jointly convened and staffed by MRS and MCB, and it had developed a 5-Year Plan for IL program and VR services in Michigan. An operational set of goals and objectives had also been progressively developed on an annual, collaborative basis for inclusion in the MRS IL State Plan and grant applications. MRS and MCB had, however, continued to submit separate Title VII State Plans. As planning progressed under the changed requirements of the Rehabilitation Act Amendments of 1992, MCB determined that its best interests would be served by working with MRS and SILC in jointly developing and submitting the Interim State IL Plan for fiscal year 1994. This now provides a single, comprehensive Michigan State Plan for Independent Living.

Development and establishment of the new Statewide Independent Living Council was the fifth major issue. The Rehabilitation Act Amendments of 1992 require that members of the new SILC be appointed by the governor and include a majority of persons with disabilities who are not employed by the state agencies or CIL's. It must be established independent of any other state agency, have its own budget, and supervise and evaluate staff assigned to it.

A meeting held with major consumer and advocacy organizations to determine an effective strategy resulted in a decision to convene a consumer-directed steering committee that would develop a pool of applicants for SILC and MRS Rehabilitation Advisory Council membership, assemble resource materials for the councils, and provide an initial orientation for council members. The Michigan Council for Independent Living - a statewide, cross-disability, consumer-directed organization - was selected to coordinate the steering committee activities.

The focus of steering committee activities has been to establish consumer-directed councils with appropriately diverse membership prepared to quickly assume specified duties. The governor has now appointed members to the councils and their initial orientation is scheduled. The steering committee and the existing SILC and MACIL have recommended that MCIL be contracted to provide administrative support to the new SILC on an interim basis during the coming year while the members consider options and make decisions concerning permanent placement and support. This will be one of the first issues the new SILC must address.

The opportunities and needs created by the Rehabilitation Act Amendments of 1992 have resulted in many dramatic collaborative advances in Michigan's IL program during the last year. They are not, however, complete or secure. Many decisions have developed so quickly among the parties most directly involved that other potential partners and stakeholders have not been included in the communications or decision making. Negotiated compromises upon which agreements are based may be fragile, with the support of some parties likely to erode if there are unexpected problems or the anticipated benefits do not quickly materialize.

The expressed commitment of Michigan's IL partners is to persist in dealing collaboratively with whatever problems or barriers arise. Each success in resolving such setbacks results in increased commitment to and confidence in the collaborative process. The final results will, of course, ultimately be evaluated against the responsiveness and success of Michigan's IL programs and services in achieving the goals of the Rehabilitation Act - that is, in empowering "individuals with disabilities to maximize employment, economic self-sufficiency, independence, and inclusion and integration into society."

What Next?

These examples from Massachusetts and Michigan demonstrate that there has been some progress towards building a more collaborative approach. Much still has to be done, however, to build bridges between the two systems. Some of the independent living movement leaders are now in, positions of responsibility in the present national administration. Though their leadership and example these bridges can be built. Open dialog, honest communication, and the recognition of the benefits and limits of both systems can lead the national rehabilitation system towards this "new rehabilitation paradigm." It cannot be overly emphasized that the ultimate beneficiary is the consumer: the individual who needs access to advocacy and services that will lead to a more independent and productive lifestyle and the rewards of work. The nation, of course, also stands to gain from any progress towards decreasing the unacceptable unemployment rate among persons with disabilities.

For decades we have talked about the need for cooperation among rehabilitation providers. For years we have talked about the need for closer coordination between IL and VR programs and services. With the needs and opportunities provided by ADA and the Rehabilitation Act Amendments of 1992, we are now being called to collaboration, to the building of true partnerships. We are empowered to go beyond long-standing traditions of programmatic self-interest to join in service partnerships that assist and support people with disabilities in fulfilling their "aspirations ... for meaningful and gainful employment and independent living." When we do, the whole of the national rehabilitation system will indeed be more than the sum of its parts.

Mr. Chappell is Deputy Director of Independent Living and Consumer Involvement, Massachusetts Rehabilitation Commission.
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Title Annotation:accomplishments of disability activists
Author:Chappell, John A., Jr.
Publication:American Rehabilitation
Date:Mar 22, 1994
Previous Article:Independent living centers: moving into the 21st century.
Next Article:Independent living services for older individuals who are blind: issues and practices.

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