Policy Issues in Independent Living Rehabilitation

by Donald E. Galvin, Ph.D., Director,

University Center for International Rehabilitation (UCIR), June 1980

This paper was presented at the 1980 World Congress of Rehabilitation International held in Winnipeg, Manitoba, Canada, June 22-27, 1980.

In 1978 the Congress of the United States amended the Rehabilitation Act in a remarkable, if not revolutionary fashion. The objective of the U.S. federal-state rehabilitation program was extended to include "independent living" as well as vocational rehabilitation. For the first time a disabled person's entitlement to rehabilitation services was not predicated upon his/her feasibility for gainful employment and contribution to the GNP. This new vision began under the leadership of Mary Switzer almost 25 years before it was finally realized.

However, while the law is "on the hooks" and a modest amount of funds have been appropriated to support independent living centers, there are many policy issues and concerns that require careful deliberation. For example, the very definition of independent living and independent living services, as well as the relationship between independent living and vocational rehabilitation are basic issues that have yet to he clarified.

The purpose of this paper is to comment briefly upon five prevalent policy concerns that confront the U.S. rehabilitation community as we develop and implement, what is for us, a new dimension in rehabilitation. These concerns have been consistently identified and pondered during national and state-level meetings and conferences. I have had the opportunity to discuss these issues in national independent living conferences held at Berkeley, California, and Houston, Texas; I chaired the Client Services Committee of the Council of State Administrators of Vocational Rehabilitation when that group first considered independent living; I have had an opportunity to meet with rehabilitation counselors from 40 states in a national training conference during which we discussed the new program; and lastly, we at Michigan State recently conducted a policy study seminar for rehabilitation administrators from the six states in the Great Lakes Region, These conferences and meetings provided valuable perspectives and affirmed the validity of the policy issues I will discuss.

The Historical Context

First, however, I would like to put our independent living movement into perspective by relating it to other social movements that interface with and support independent living. I should mention that I am indebted to Gerben DeJong of the Tufts Medical Rehabilitation Research and Training Center for this analysis.

The Civil Rights Movement. Many of our early independent living advocates were active participants in the civil rights movement in the 1960's. That movement made many disadvantaged groups aware of their rights and had an impact far beyond the movement for racial equality. Civil rights were soon extended to benefit rights, that is insistence upon one's entitlement to income and medical assistance, educational benefits, the right to treatment, and so forth. These benefit rights are often prerequisites for living in the community. For example, many disabled persons will be involuntarily confined to long-term care facilities if they do not have access to income assistance, barrier free housing and attendant care benefits.

The Consumer Movement. This movement is personified by Ralph Nader, and has resulted in the emergence of public interest law and the enactment of several consumer protection laws. Basic to consumerism is a distrust of sellers or service providers. In theory, the hallmark of the free market economy is consumer sovereignty; however, many feel the professional provider in rehabilitation has been sovereign. With the rise of consumer sovereignty, professional dominance in disability policy and rehabilitation is being challenged.

The Self-Help Movement. The self-help movement embraces a large variety of groups. Self-help groups have emerged for almost every conceivable human condition or problem: alcoholism, drug abuse, death and mourning, homosexuality, child abuse, old age, neighborhood crime, cigarette smoking, child birth, and - of prime interest here - disability. Self-help organizations view themselves as mutual aid groups that serve as supports, adjuncts or as valid alternatives to established human service agencies. Self-help organizations are intended to give people the opportunity to exercise control over their own lives and the services they use. They are information giving, consciousness-raising organizations that also help to confer sovereignty on the consumer.

The Demedicalization/Self-Care Movement. Over the last few decades, an increasing number of behaviors once considered sinful or criminal have come to he considered illnesses. They have become "medicalized."

Implicit in the argument for demedicalization is the assumption that individuals can and should take greater responsibility for their own health and medical care. At issue for independent living is the extent to which the management of disability should remain under the dominance of the medical care system once medical stability has been obtained. Disabled persons are insisting that the management of their disabilities is primarily a personal matter and only secondarily a medical matter. A constant medical presence in the lives of disabled persons is said to induce dependency and conflict with the true goal of rehabilitation.

I think you'll find that several of the themes embodied in these four movements play themselves out within the following independent living policy issues and concerns.

Policy Issues and Concerns

Our first policy concern is to grasp what is meant by "independent living." Unfortunately federal law, as is often the case, only implies a definition. Let me illustrate this policy issue by contrasting the views of two prominent representatives of different views.

In a journal article on the subject, former U.S. Commissioner of Rehabilitation, Robert Humphreys, described independent living in terms of services that might not have an immediate employment objective, and he spoke of services over and above those traditionally provided. His view represents a provider's view, a fairly typical service orientation.

On the other hand, Lex Frieden of the Texas Institute for Rehabilitation Research and a national consumer leader, speaks about independent living from a more philosophical and political perspective in terms of exercising control over one's life based upon having options that minimize dependence upon agencies, institutions, one's family, and, to some degree, the very services that the professionals are eager to provide.

Thus there are different ideas, views and values being expressed. However, It is possible to envision a successful scenario that combines these views, i.e., the provision of appropriate and needed rehabilitation services that in time enable a person with a severe disability to achieve greater control over his/her life.

That "happy ending" notwithstanding, it is still fair to say that the consumer view of independent living is the broader view, for independent living is not seen as a competing or subsidiary goal to employment. Gainful employment may be viewed as a very authentic way, but not the only way, to achieve independence.

Federal officials and rehabilitation professionals in our country sometimes use the term "independent living rehabilitation." I have heard several consumers challenge this term both on the basis that it tends to be a narrow view of independent living, and because it tends to assume "independent living" within "rehabilitation." Patient consumers have observed that rehabilitation should he thought of as only one element or stage of independent living. Less patient consumers have asked the rhetorical question, "When are we ever free of rehabilitation; when are we independent of professionals and their agencies?"

Obviously, the stage is set for another policy issue or concern, namely, consumer control and consumer participation in policy development, program management and evaluation. While the 1973 law required that states "take into account the views of consumers," states were not required to actually share their policy making power with consumers. Consumers, at best, operated in an advisory capacity. The language that appears in Title VII of the 1978 Act is considerably stronger in this regard, for now consumers must be given a place in policy decision making. They are to be "substantially represented" on the boards and among the management and staff of independent living centers created and supported by funds appropriated by the Congress.

One must keep in mind that our recent legislative success in terms of architectural barrier laws, mandated special education, nondiscrimination requirements and independent living were in large measure the direct result of the politics of confrontation and activism on the part of organized consumer groups. These groups and individuals are not now likely to passively relinquish all policy authority to professionals and their agencies.

In every meeting I have attended with national consumer lenders, participation and control have been a prominent, if not the most important concern. Most consumer leaders feel that their participation in decision making and their control of independent living centers is fundamental and basic to the very definition of independent living; i.e., it is by, about, and for handicapped people themselves. Professional providers and administrators need to he aware that consumers regard our willingness to share power and authority as the "litmus test" in terms of our genuine belief in independent living. A period of conflict, accommodation, negotiation, and compromise may be anticipated as the major actors go about the business of translating law into workable policies and procedures.

Third, there is legitimate policy concern regarding the degree to which a multitude of human service agencies and organizations will suddenly discover that they are engaged in "independent living" and will thus make claims upon the funds now appropriated and those to come. For example, there is a strong push toward deinstitutlonalization of our mentally ill and mentally retarded. Could not a state department of mental health mount a campaign to compete for independent living funds? Typically this department is a huge and powerful bureaucracy in state government, many times larger and more influential than state rehabilitation agencies. The same could be said for the public schools that receive many of the deinstitutionalized youngsters, agencies working on behalf of the aged, sheltered workshops, nursing homes, generic family sere vise agencies, etc. All these are worthy programs in need of additional financial support, but is this what was in the minds of the consumers, their advocates, professional groups and Congress when "independent living" became a reality?

A very thoughtful and experienced RSA official put forth an argument for retaining the "independent living rehabilitation" nomenclature. In his view, this bureaucratic device, that is, using the word "rehabilitation" in the program title, would serve to protect these funds so that they would indeed be invested on behalf of those people for whom they were originally and primarily intended.

Notwithstanding the validity of the third point, that these new services should be provided to those for whom they were originally intended, there is a fourth related policy issue. Namely, almost every thoughtful observer and analyst agrees that there is a powerful physical disability orientation, if not bias in the new legislation. The services to be rendered, i.e., mobility aids, daily living aids, technical devices, peer counseling, attendant care and health maintenance, reflect this orientation.

The Rehabilitation Services Administration reminds us that the mentally retarded and mentally ill are by law also entitled to independent living services. Indeed, no person can be excluded from any rights or services under the Rehabilitation Act on the basis of disability classification or type.

My fifth policy issue involves accountability measurement and evaluation as applied to independent living. As long as the federal-state rehabilitation program had only one objective - gainful employment - they enjoyed relative ease in terms of measuring program success, for they simply counted the number of people who achieved that objective. This criterion served to measure program effectiveness and signaled the termination of services. As inadequate as that singular measure may be, it possessed the values of tradition, specificity and clarity.

With independent living we are confronted by a substantially more complex evaluation problem. How are we now to measure the impact of services and how are we to know when our objective has been achieved and services should be terminated. In a perverse way independent living may suggest an open-ended service responsibility with vague objectives. Thus, we may unwittingly foster the very dependence we and consumers deplore.

There are several other strategic policy concerns that I will comment upon briefly:

Disincentives to employment. This is already a substantial issue confronting many severely handicapped people. Professor Jochheim of Cologne University has written, in a powerful understatement, "Indeed it is difficult to rehabilitate people to their economic disadvantage." Will independent living services compound the problem and further discourage people from pursuing economic independence?

Independent living as a deadend. Consumers have expressed the concern that independent living programs may become an all too convenient "placement" for the severely disabled. That is, rehabilitation counselors may be tempted to place severely handicapped clients in this program rather than to pursue the more difficult objective of gainful employment.

Housing. There is a policy debate regarding the degree to which independent living centers should provide housing programs as opposed to simply being a housing information and referral resource. Appropriate housing has been noted as one of the most pressing needs by severely handicapped people, yet the provision and management of such programs can consume vast resources and may tend to segregate the handicapped.

Funding. While authorizing this new entitlement, Congress has appropriated only fifteen million dollars to be used to establish independent living centers. No monies have been awarded to the state rehabilitation agencies so that they might provide and purchase such services.

In view of this reality, rehabilitation administrators and consumers should unite in common mission to secure health care service, social services and educational benefits from established private and public sources. Billions of dollars are allotted to these programs, and the disabled clearly do not receive their entitled share.

Summary

In this paper I have addressed policy questions that now confront rehabilitation officials, consumers, and the general public in the United States as we attempt to assure the reality of independent living for and by handicapped persons. I commented upon four related social. movements to which independent living owes some heritage and support. Lastly, I briefly reviewed some strategic and very real policy issues. Let us hope that we might he guided by judicious wisdom and a thoughtful humane concern in resolving these issues.

...about UCIR

Rehabilitation professionals around the world increasingly express a need to exchange information with colleagues in other countries. In the U.S., these professionals recognize the potential domestic benefit of programs, policies, methods and technological devices developed in other regions of the world, yet they often have little time to look internationally for information related to these concerns.

The Research, Information and Education/Training Divisions of UCIR work together to make international information available and useful to domestic rehabilitation. Information which is assessed as highly relevant, accurate and applicable to the field is disseminated through media, formal training of graduate students, and nonformal training such as workshops and seminars.

UCIR is especially interested in exchanging information with other countries regarding:

• Programs and services that help disabled people to live more independently
• Implementation of the new functional assessment scale of disability measurement developed by the World Health Organization
• Various roles for the participation of handicapped people in the rehabilitation process
• Behavioral characteristics and environments associated with individuals who successfully cope with disability
• Methods for overcoming the disincentives to employment which often result from benefit programs
• Barriers to the importation of technological devices
• International information exchange via computer conferencing
• Educational resources for the development of rehabilitation and special education curricula

Other aspects of the UCIR program include the award of graduate assistantships to U.S. and foreign students pursuing degrees in rehabilitation and related studies at Michigan State University, a course series with internships in international aspects of rehabilitation, a study/travel program with the University of Education, Heidelberg, and technical assistance to foreign universities in program development and faculty training.

UCIR is located at Michigan State University and is funded by the National Institute of Handicapped Research, U.S. Department of Education, Washington, D.C. The center welcomes comments and inquiries.

Donald E. Galvin, Ph.D., Director
University Center for International Rehabilitation (UCIR)
Michigan State University
East Lansing, Michigan 48824