The greater vision: an advocate's reflections on the Rehabilitation Act Amendments of 1992.

The U.S. Congress instituted some rather remarkable changes to the rehabilitation system in America with the Rehabilitation Act Amendments of 1992. From this author's perspective, these changes were long overdue and did not go far enough, but they are a beginning.

I want to share my perspective as one who has been a strong advocate for these changes and one who has had many experiences with the Rehabilitation Act in a wide variety of settings. I am most concerned about how the "traditional system" reacts and responds to these changes. From the consulting and training work I do - particularly in centers for independent living and with statewide independent living councils-I am seeing tremendous to the emerging power that people with disabilities are exerting over their own lives and the services, programs, and laws which affect them. This takes many forms - subtle and overt - in service delivery, in funding and management of programs, and in levels of support and leadership.

The Rehabilitation Act changes we implement now are true stepping stones to a revolution in the way America thinks about disability. I want to see the traditional system laying these stepping stones in support of the individuals with disabilities who are deciding where and how they should be placed.

In 1992, as the Rehabilitation Act was undergoing review and reauthorization, people with disabilities and their organizations were pursuing greater goals and a larger, more complete and more meaningful picture of what life with a disability can mean in America. In some cases, people with disabilities and advocates argued that the entire rehabilitation system should be discarded in favor of a completely new and different model. In other cases, people with disabilities and leading advocates pushed for reform of the Act, expecting greater and greater reforms over a longer period of time. And in the case of the traditional "order," e.g., federal and state agency personnel and many facility-based professionals, there was no need for major change of any kind - only some fine tuning and, as always, more money.

The wide variance of opinions among all of these groups points out how differently individual leaders see the big picture. Those who have been "outside" or on the "bottom of the pole" want radical and dramatic change, while those who have been in the "inside" or on the "top of the pole" want the status quo. There are no surprises here. The same can be said for any organizational or social change movement, in any culture, in any place around the world.

What is different about the 1992 amendments is the fact that a small, yet vocal and articulate group of people - primarily all of whom have disabilities - were able to convince the power brokers of our nation that substantial change was necessary. Passage of the Americans with Disabilities Act of 1990 - another extraordinary achievement - helped this effort to a large degree. Without the ADA clearly establishing a new framework, defining and prohibiting the discrimination facing people with disabilities, changes to the Rehabilitation Act probably would not have occurred.

But the ADA alone could not have produced what we now have in the Rehabilitation Act. When push came to to get ADA passed, all groups concerned about and supportive of people with disabilities were there-people with disabilities who were leaders and those who were primary consumers of services, parents, professionals, elected officials, and other minority groups concerned about civil rights. When it came time to renew the Rehabilitation Act, these same groups immediately split over their own, often separate and segregated, priorities for funding. There was competition for both power and control over funding resources. Pulling some of these segments back together for reforms in 1992 was difficult, but an adequate unification effort made a substantial difference in the final version of the Act.

This article is a reflection on the importance of these changes. Let me share my observations about how and why they occurred by starting with elements of the independent living movement's history. I will close with the greater vision I have, based upon the Rehabilitation Act Amendment's possibilities.

The independent living movement began long before there was federal funding for centers or services. However, the ideals and principles embodied in the movement in the early seventies were difficult to translate into a federal law which promised funding for operational realities at the local level. The early leaders in the disability rights and independent living movement were experimenting with new concepts and ideas, most of which were radical departures from what had been occurring within medicine, rehabilitation, and social services for hundreds - sometimes thousands - of years.

Despite how radical they may have seemed, these concepts were rooted in simple, democratic principles which still form the foundation of the independent living movement today:

* Consumer control. People with disabilities should lead, manage, and operate the programs which are of benefit to them, particularly centers for independent living; and people with disabilities should control the services, programs, and activities they need or wish to pursue, even if such pursuit leads to failure as defined by the individual with the disability or the social service delivery system.

* Cross disability. The goals of the movement are applicable to all individuals with disabilities, regardless of type or degree. Thus, advocacy and services must include people with all types of disabling conditions. No independent living advocacy or service can be set aside, restricted to, or promoted for one specific disability group.

* Civil rights and full integration. The movement is based upon the principles of law, standards in ethics, and values in celebrating diversity which demand that people, no matter what their minority status, have access and an equal opportunity to participate freely in society - to be employed, live where and with whom they choose, and to socialize in any way they want.

* Deinstitutionalization. People with disabilities should not be warehoused or placed in residential settings where others supervise their activities simply because they have disabilities. Consumer-controlled support services must be accessible, tailored to meet individual need rather than institutional need, available and affordable (or covered by some funding entity), and allow people with disabilities to live where and with whom they choose.

* Self-help. People with disabilities often are better teachers, mentors, and peer supporters for others with disabilities than are professionally trained or licensed personnel.

* Demedicalization. People with disabilities should develop and operate their own system of support services that are pertinent to their abilities to live independently in the community and not based upon "medical model" diagnostics and treatments. It makes no sense, for example, to require a doctor's statement of a person who uses a wheelchair to be eligible for a transit pass to use the local accessible bus. Consumer-controlled or self-directed personal assistance service is probably the best example of how the movement advocates for demedicalization and systems change. If the current Medicaid program or the proposed models of national healthcare reform support an individual with a disability who wants to live in the community, the provision of funding for personal assistance service could demedicalize what had been an automatic institutionalization based upon level of daily needs.

Gerben Dejong has been writing about the sociology of the movement since 1978 (The Movement for Independent Living: Origins, Ideology, and Implications for Disability Research, 1978). His paradigms comparing the independent living approach to the rehabilitation or medical model approach to problems associated with disability is still the best explanation of the independent living philosophy. Some of us have modified and added to the paradigms as our experience has demonstrated new needs, but the differences articulated by Dejong are still the core of independent living thinking today.

The beauty of Dejong's structure is that it clearly points out the differences in approach while it strengthens the argument for both. If there is high quality job training, rehabilitation, and medical service available and individuals with disabilities understand their roles and responsibilities as customers of service in control of their own lives, we will have the fully integrated model of independent living we want.

But, due to the limited experience of both Congress and the Rehabilitation Services Administration in the late seventies with this philosophy and model centers for independent living, this vision of independent living was lost. The initial version of Title VII of the Rehabilitation Act was poorly conceived. In fact, the independent living program model built into the old Title VII was the same model used to develop and construct rehabilitation facilities. It was doomed to fail from the very beginning; and, from my point of view, it did.

Starting with the Center for Independent Living in Berkeley and several other centers which were truly "consumer controlled," practical methods for putting independent living philosophy into daily practice were developed. These practices made centers look, feel, sound, and act differently than agencies and traditional service providers concerned with disability. Although the differences in how centers behaved were not codified into an academic program focused on mastery of certain professional skills, they were clearly present in the seventies and early eighties.

Title VII, however, did not include adequate information about how federally funded centers could or should adopt these behaviors. Title VII did not require that applicants for Part B discretionary grants be or become truly independent private nonprofit organizations managed and operated by people with all types of different disabilities. There was no common vision or definition of independent living.

When Title VII became an appropriated reality in 1978 and grants began to be made in 1979, there were few people in the country who could articulate these differences. There was no training on independent living available, except from those centers which existed prior to federal funding, and this was extremely limited. Many professionals in the rehabilitation and disability service fields began adopting the language of the movement, particularly the phrases "independent living" and "consumer control," but not the philosophy, principles, and values associated with the movement's definitions. "They picked up our words but dropped the music; divorced our values while marrying our techniques" (adapted from Marvin Weisbord, Productive Workplaces).

Because the federal law set no standards and gave no specific criteria for who was eligible to receive a Title VII grant, the national independent living program got off to a muddled start. That start turned into a more perilous path as years of federal funding continued with no clear direction, definitions, or standards.

Some of us, and I include myself, saw this critical problem as early as 1980. Entities such as hospitals, sheltered workshops, group home operators, institutions of public education, and state and local government agencies were receiving Title VII Part B grants to establish and operate "independent living centers." As long as they continued to receive the Title VII Part B funding, who could question their validity and commitment to the independent living philosophy? Some of us did, actually, but with no avenue or recourse for resolution of the problem. In fact, I can recall some lively discussions on these very issues in 1982 at the founding meeting of the National Council on Independent Living (or NCIL, then called the National Coalition for Independent Living Programs) in Kansas City, Missouri.

NCIL has, in fact, been the only national organization to continuously pursue a return to the principles and values of the movement in its earliest years. NCIL's membership requirements reflect the same basic concepts described above, including one other criteria - that centers be nonresidential.

The reasoning behind the nonresidential requirement is similar to the reasoning behind why centers do not or should not become the direct service providers for many needs of individuals with disabilities in their community. If a center truly believes in civil rights and full integration for all persons with disabilities, then some existing entity within the community should be providing the same service to people with disabilities that is provided to people without disabilities. Using the nonresidential criteria as one example, centers may be creating new patronizing bureaucracies or falling into the rehabilitation and medical model paradigm if they become the providers of housing. Our experience with the U.S. Department of Housing and Urban Development's 202 program, which grants funds for construction of segregated residential facilities, has proven this over and over again.

Rather, center staff time should be spent in demonstrating ways to increase the accessible, affordable housing stock in a community to those currently in the business of providing housing. At the same time, center staff and peers can work with people who have disabilities to facilitate or assist them in finding adequate housing or how to advocate for their rights, under the Fair Housing Amendments Act or local fair housing laws. Centers take a long-term view of how to solve disability-related problems while promoting - in fact, inciting - self-advocacy activities among individuals with disabilities in their own communities.

This description of how a center for independent living approaches a specific problem related to disability is key to understanding why centers define independent living services so differently from rehabilitation as well. Independent living services are not "rehabilitation" oriented - they are not going to "fix the individual" or change the way an individual physically or mentally functions, at least not intentionally. They are not, therefore, equivalent to vocational rehabilitation services described in Title I of the Rehabilitation Act.

Independent living services from a center are advocacy (both for an individual with a disability and for broad systems change where everyone benefits), information and referral, peer counseling, and skills training. This last service - skills training - seems to cause more confusion among and between rehabilitation and independent living professionals than any other. When I describe skills training as a service, I am talking about converting an individual with a disability to believing in the independent living philosophy of consumer control and civil rights. I am concerned about increasing an individual's capacity to assert him or herself in any situation, make decisions, and control day-to-day living. I am not concerned with physical and mental skill development which I think is appropriately delivered by vocational skills instructors, occupational therapists, physical therapists, and mental health professionals such as psychologists, counselors, and psychiatrists. These are medical model professionals and they provide a valuable, much needed service within the context of rehabilitation.

Let's go back for a moment to the revised Dejong paradigm. The reader will note that "desired outcomes" on both sides of the chart are not unrelated. This is because we all want all individuals with disabilities to function to their maximum capacities and desires. People with disabilities need skilled, high quality medical and rehabilitation services to live and thrive - just like people without disabilities. The differences between rehabilitation and independent living lie totally in approach. Where medical services and rehabilitation presume that the professional knows what to do with someone to eliminate the disability or the effects of the disability, center for independent living personnel presume that each person coming for service wants to live more independently and will support any activity that individual undertakes to reach independent living status, even if it means risk or failure.

Going a step further, center staff are not "case managers." People with disabilities are their own case managers. This is one key reason why the new Title VII of the Rehabilitation Act includes an assurance that centers will not develop an independent living plan if the consumer or customer does not want or need one. To presume that a person with a disability needs a written plan to discuss life goals and aspirations denies the potential consumer's dignity and control. Centers do not evaluate individuals with disabilities based upon a medical model of functional assessment. They offer to support and facilitate achievement of independent living goals based upon what the consumer wants to do. Centers do not need to maintain written plans resembling those in case management systems. They do, of course, document their work with people and ensure a sound and effective evaluation system, but that is not case management. It is customer satisfaction.

The intervening years - from initial grants under Title VII Part B in 1979 until the Rehabilitation Act Amendments of 1992 - demonstrated how the lack of a clear vision and sense of commitment to independent living philosophy, values, and principles affected centers. With no standards and little attention to training and development needs of the field, Title VII Part B grantees quickly became typical social service or traditional rehabilitation agencies. Centers sought funding wherever and whenever available, regardless of the funding source's requirements or approach to problems related to disability. Centers adopted case management systems based upon intakes, assessments, gathering of case and medical records from other service providers, independent living plans, and case closures. Centers did not resist paternalistic or unnecessary grant monitoring activities from state or federal agencies. Centers developed or bought "bean counting" evaluation systems based upon the case management approach. And, centers lost their focus and their commitment to systems change advocacy.

Many of us working in the field of independent living, especially NCIL's leadership, bemoaned this development as we watched it unfold through the eighties. We knew that something dramatic had to happen with the next reauthorization of the Rehabilitation Act or centers would never live up to the ideals we carried so proudly in the seventies. So, with NCIL taking a strong lead, we mapped out a different Rehabilitation Act and did so early in the reauthorization process.

We met with Congressional staff more than 1 year before the Rehabilitation Act was due for reauthorization. A position paper was developed and disseminated to all centers for independent living in the nation in 1991. NCIL leaders met with leaders from other national groups concerned with the movement, such as the Association of Programs for Rural Independent Living and the National Association for Independent Living. NCIL worked with various committees of the Consortium for Citizens with Disabilities, which is headquartered in Washington, DC, and is made up of all the major single disability groups in the country. NCIL representatives testified at all major hearings conducted by the House of Representatives and the Senate. NCIL volunteers drafted more position papers and analytical reports of how key language in the Act would affect people with disabilities, centers, and the entire movement. NCIL made sure that its core constituency - centers for independent living - knew what was at stake if major changes to the Act did not occur by the end of 1992.

This activity generated most of the reforms that we have now seen in Title VII of the Act and in some places within Titles I and III. Ultimately, centers will receive, and continue to receive, federal Title VII grant funds (under the new Part C) as long as they meet a clear set of standards and assurances. Centers are required to be private, nonprofit, consumer-controlled, cross-disability, nonresidential organizations. Boards of directors of centers must have a majority of individuals with significant disabilities. The majority of center staff, including those in decision making positions must be persons with disabilities.

Most centers will be directly funded by the federal government rather than through state vocational rehabilitation agencies. All centers are obligated to analyze and conduct outreach activities to include people with all types of disabilities and from all minority groups within their areas. People who receive services from a center need not develop a written plan, which means that the relationships between centers and their customers will be more relaxed and directly tied to peer support and self-help models. And, two out of seven standards require centers to spend energy, time, and resources on developing community options and accessibility - goals which translate into systems advocacy activities on any number of local, state, and federal levels.

New statewide independent living councils (SILC's) are established with appointments directly from governors' offices or other powers within a state which have equal or greater appointment authority. These SILC's have joint authority with the state designated unit (vocational rehabilitation and/or blind service agencies) over the development of state plans and for how Title VII funds will be used within their states, including operating support for themselves as independent and autonomous agencies.

The resistance to these changes to Title VII and others NCIL recommended to Titles I and III has been evident since the summer of 1992, before the Act passed and was signed into law. Interpretations of the changes, including where they came from and what they mean in specific instances, have ranged from misleading to downright dishonest. In many of the states where I have worked for specific centers or SILC's as a consultant or trainer, state vocational rehabilitation and blind service agencies have blocked attempts to implement these changes - using tactics of withholding critical information to giving out wrong information, intimidation, and, sometimes, even veiled threats. Some state agencies, on the other hand, have demonstrated initial concerns but have been supportive and have shown what a good working relationship can be in the long term.

Perhaps we should have anticipated this resistance. No change is easy. Most people say they want change, but perhaps they really do not - or at least not when they realize how it might affect them personally. But I still believe that the traditional system can and will benefit from these changes if it ponders them carefully. The traditional system can welcome these changes as another form of reinventing government and a breath of fresh air.

After all, what we independent living advocates have been saying all along is that people with disabilities must have control over their own lives. If people with disabilities under stand their rights and responsibilities under law and if they know what they want before they seek help or assistance from the myriad of service providers funded by the Rehabilitation Act, it should make work in these fields that much easier. And isn't this what we all said we want? Isn't this what both the rehabilitation and independent living paradigms are designed to produce?

There is nothing simpler than consumer control. But the mere mention of the words, if they are clearly understood, is threatening to many. It is time for all of us committed to solving the problems related to disability in this nation to realize that power must be vested in the hands of people with disabilities - just like it must be in the hands of people of color, women, and other minorities - if this nation is to be truly democratic. The old system of service delivery was built upon the honest and positive motivations of all who were involved. But the old system is based upon the patronizing, paternalistic medical model and charitable approaches which simply are not enough and do not make sense in a post-ADA environment. The old system must change. The independent living philosophy, if understood and practiced by people working in the traditional system, can eliminate the negative effects of the old ways of doing things.

The full impact of ADA will never be realized if the supporting human service delivery system does not comply with the principles of ADA and the independent living philosophy. Now is the time for the traditional rehabilitation community to join in the effort. Let's make these reforms in the law a real opportunity - the beginning to a new and revitalized strategy for ensuring that people with disabilities in America have full and equal access to every opportunity this nation has to offer.

               Rehabilitation/        Independent, Living
               Medical Mode           Paradigm
               Paradigm

Definition     physical or mental    dependence upon
of problem     impairment (lack of   professionals, family
               vocational skill in   members and others;
               the VR system)        stereotypes; hostile
                                     attitudes and environments;
                                     lack of legal redress

Locus of       in the individual     in the environment-social,
problem        (individual needs     legal, architectural; in
               to be "fixed" to      the medical and/or
               "fit" into society)   rehabilitation process
                                     itself

Solution       professional          * barrier removal
to problem     intervention;         * advocacy
               treatment             * self-help
                                     * peer role models
                                     * consumer control over
                                       options and services

Social role   individual with a      individual with a
              disability is a        disability is a "consumer,"
              "patient" or           "customer," or "user" of
              "client"               services and products when
                                     actively receiving such,
person" or "citizen" most
                                     but simply a "person" or
                                     "citizen" most of the time

Who controls   professional          the person with the
                                     disability

Desired        maximum self-care     independence through
outcomes       (or "ADL") and        control over acceptable
               gainful employment    options for everyday living
               (as within the VR     in an integrated,
               system)               accessible community
                                     environment

Ms. Shreve is an organization development consultant for centers for independent living, statewide independent living councils, state agencies, nonprofit organizations, and employee owned companies. While she lives in Chicago, her work is nationwide.