IL NET an ILRU/NCIL National Training and Technical Assistance Project Expanding the Power of the Independent Living Movement HOW IL HISTORY AND PHILOSOPHY SHAPE OUR FUTURE A National Teleconference Participant's Manual August 22, 2001 Contributors to the training materials: Carri George Richard Petty Dawn Heinsohn Anne-Marie Hughey Kristy Langbehn Darrell Lynn Jones Raweewan Buppapong Maggie Shreve Steve Brown John McKnight (c) 2001 IL NET, an ILRU/NCIL Training and Technical Assistance Project ILRU Program NCIL 2323 S. Shepherd Street 1916 Wilson Boulevard Suite 1000 Suite 209 Houston, Texas 77019 Arlington, Virginia 22201 713-520-0232 (V) 703-525-3406 (V) 713-520-5136 (TTY) 703-525-4153 (TTY) 713-520-5785 (FAX) 703-525-3409 (FAX) ilru@ilru.org 1-877-525-3400 (V/TTY - toll free) http://www.ilru.org ncil@ncil.org http://www.ncil.org Permission is granted for duplication of any portion of this manual, providing that the following credit is given to the project: Developed as part of the IL NET: an ILRU/NCIL National Training and Technical Assistance Project. IL NET is funded through a special provisions cooperative agreement with the U.S. Department of Education, Rehabilitation Services Administration, Agreement No. H132B99002. How IL History & Philosophy Shape Our Future A National Teleconference Participant's Manual Table of Contents Agenda i About the Trainers ii List of Trainers and IL NET Staff iii About ILRU v About NCIL v About IL NET vi Independent Living Movement: History and Philosophy to Implementation and Practice 2 The Professional Problem 146 Freedom of Movement 157 History of Independent Living 203 The New Paradigm of Disability A Bibliography 212 HOW INDEPENDENT LIVING HISTORY AND PHILOSOPHY SHAPE OUR FUTURE A Teleconference August 22, 2001 AGENDA Welcome and Introductions Materials Galore but Not Enough Stories Who Are We? Is a Common Philosophy Possible? A History Worth Knowing, and Telling, and Re-Telling, and.... A Vision for the Future Wrap-up About the Trainer Darrell Lynn Jones is Training Specialist for the IL NET Project at the National Council on Independent Living and has been involved in the IL movement for 24 years. She was founding Executive Director of the Rochester Center for Independent Living in Rochester, New York, and subsequently became the first director of the Association of Independent Living Centers in New York. In both positions she was a principle player in the creation of IL as a statutory program in New York State, expanding CILs from an initial nine to 34 by 1987. In various capacities Darrell has provided technical assistance to CILs for over 14 years in the areas of board training, management, resource development and strategic planning. She is also co-author with June Isaacson Kailes of A Guide to Planning Accessible Meetings. Trainer Darrell Lynn Jones Training Specialist National Council on Independent Living 1916 Wilson Boulevard - Suite 209 Arlington, Virginia 22201 877-525-3400 (V/TTY - Toll-Free) 703-525-3406 (V) 703-525-4153 (TTY) 703-525-3409 (FAX) IL NET STAFF ILRU Lex Frieden Laurie Gerken Redd Executive Director Administrative Coordinator lfrieden@ilru.org lredd@ilru.org Richard Petty Carri George Program Director Publications Coordinator richard.petty@bcm.tmc.edu cgeorge@ilru.org Laurel Richards Dawn Heinsohn Training Director Materials Production Specialist lrichards@ilru.org heinsohn@ilru.org ILRU Program 2323 S. Shepherd Suite 1000 Houston, TX 77019 713-520-0232 (V) 713-520-5136 (TTY) 713-520-5785 (FAX) ilru@ilru.org http://www.ilru.org NCIL Anne-Marie Hughey Executive Director hughey@ncil.org NCIL 1916 Wilson Boulevard Suite 209 Arlington, VA 22201 703-525-3406 (V) 703-525-4153 (TTY) 703-525-3409 (FAX) 1-877-525-3400 (V/TTY - toll free) ncil@ncil.org http://www.ncil.org Kristy Langbehn Project Logistics Coordinator kristy@ncil.org Darrell Lynn Jones Training Specialist darrell@ncil.org Raweewan Buppapong Project Assistant toony@ncil.org ABOUT ILRU The Independent Living Research Utilization (ILRU) Program was established in 1977 to serve as a national center for information, training, research, and technical assistance for independent living. In the mid-1980's, it began conducting management training programs for executive directors and middle managers of independent living centers in the U.S. ILRU has developed an extensive set of resource materials on various aspects of independent living, including a comprehensive directory of programs providing independent living services in the U.S. and Canada. ILRU is a program of TIRR, a nationally recognized, free-standing rehabilitation facility for persons with physical disabilities. TIRR is part of TIRR Systems, a not-for-profit corporation dedicated to providing a continuum of services to individuals with disabilities. Since 1959, TIRR has provided patient care, education, and research to promote the integration of people with physical and cognitive disabilities into all aspects of community living. ABOUT NCIL Founded in 1982, the National Council on Independent Living is a membership organization representing independent living centers and individuals with disabilities. NCIL has been instrumental in efforts to standardize requirements for consumer control in management and delivery of services provided through federally-funded independent living centers. Until 1992, NCIL's efforts to foster consumer control and direction in independent living services through changes in federal legislation and regulations were coordinated through an extensive network and involvement of volunteers from independent living centers and other organizations around the country. Since 1992, NCIL has had a national office in Arlington, Virginia, just minutes by subway or car from the major centers of government in Washington, D.C. While NCIL continues to rely on the commitment and dedication of volunteers from around the country, the establishment of a national office with staff and other resources has strengthened its capacity to serve as the voice for independent living in matters of critical importance in eliminating discrimination and unequal treatment based on disability. Today, NCIL is a strong voice for independent living in our nation's capital. With your participation, NCIL can deliver the message of independent living to even more people who are charged with the important responsibility of making laws and creating programs designed to assure equal rights for all. ABOUT THE IL NET This training program is sponsored by the IL NET, a collaborative project of the Independent Living Research Utilization (ILRU) of Houston and the National Council on Independent Living (NCIL). The IL NET is a national training and technical assistance project working to strengthen the independent living movement by supporting Centers for Independent Living (CILs) and Statewide Independent Living Councils (SILCs). IL NET activities include workshops, national teleconferences, technical assistance, on-line information, training materials, fact sheets, and other resource materials on operating, managing, and evaluating centers and SILCs. The mission of the IL NET is to assist in building strong and effective CILs and SILCs which are led and staffed by people who practice the independent living philosophy. The IL NET operates with these objectives: * Assist CILs and SILCs in managing effective organizations by providing a continuum of information, training, and technical assistance. * Assist CILs and SILCs to become strong community advocates/change agents by providing a continuum of information, training, and technical assistance. * Assist CILs and SILCs to develop strong, consumer-responsive services by providing a continuum of information, training, and technical assistance. I have the right to believe freely, to be a slave to no man's authority. If this be heresy so be it. It is still the truth. To go against conscience is neither right nor safe. I cannot...will not... recant. Here I stand. No man can command my conscience. --Martin Luther in defense of his beliefs at the Diet of Worms 1521 The Independent Living Movement: History and Philosophy to Implementation and Practice Social Change for the Integration and Inclusion of All People with Disabilities Into Society A Workshop Manual by Maggie Shreve, Organization Development Consultant 5537 S. Kimbark Avenue, #2E Chicago, IL 60637-1618 773/947-1314 (V/FAX-call ahead for FAX) 312/952-7540 (Cell) 773/947-1315 (TTY) TABLE OF CONTENTS Outline I....................................................................European Cultural Heritage II............................................................Attitudes and Behaviors Inherited III..........................................The Start of the Independent Living Movement # The Medical Model # The Sick Role # The Impaired Role # Other Social Movements # DeJong's Paradigms IV...........................Federal Laws Supporting the Independent Living Paradigm V.....................Title VII of the Rehabilitation Act -- 1986 and 1992 Amendments VI..................................................Standards for Independent Living Centers VII..........................................................Transitions Continuum or Spectrum VIII..................................................................The Importance of Language X.....................................What Next? Passing the "reality versus rhetoric" test XI..........................................................................................Bibliography Training Tools: Attitudes About and Values Toward Disability: A Self-Assessment Myths and Misconceptions about Independent Living Philosophy Myths and Misconceptions: Maggie Shreve's Opinions Independent Living Philosophy: Stop Action Skit Independent Living Philosophy: Reality Versus Rhetoric Test Case Studies in Philosophy and Standards Organizational Blasphemies Creating Organizing Principles Around Independent Living Philosophy Appendices #........................."A Little History Worth Knowing," by Timothy M. Cook #......."The Movement for Independent Living: A Brief History," by Shreve #.........................."Language is More Than a Trivial Concern!" by Kailes THE INDEPENDENT LIVING MOVEMENT: History and Philosophy to Practice and Implementation I. European Cultural Heritage (Judaic-Christian Tradition) A. Most nomadic tribes considered people with disabilities useless because they could not contribute to the wealth of the tribe. Nomads often left people with disabilities to die whenever the tribe moved to a new location. B. The Greeks sought rational reasons for disability. They reached such conclusions as: epilepsy was a disturbance of the mind; and people who were deaf could not learn because communication was essential to learning. C. Early Christianity brought a period of sympathy and pity toward people with disabilities. Churches organized services for people with disabilities within their congregations and homes. Many Christians held superior attitudes towards people with disabilities which resulted in a general loss of autonomy. To many, disability represented impurity of some kind. This impurity could be purged through worship and forgiveness of sins, including the belief that with enough prayer and rituals the disability could be eliminated. D. During the Middle Ages, Christians became fearful of people with disabilities as their attraction to supernaturalism increased. People with disabilities were ridiculed, such as court jester who was actually someone with a humped back. People with disabilities were not only ridiculed but persecuted as well. Disability became a manifestation of evil. E. The Renaissance brought the initiation of medical care and treatment for people with disabilities. The Renaissance is where the so-called "charity model" and "medical model" began. Education was available to people with disabilities for the first time in Western recorded history. An enlightened approach to social norms and dreams for a better future seemed to encourage active participation of people with disabilities in their respective communities. The "charity" model is based upon a benevolent society which provides services based upon a presumption of "what is best" for those served. This is not to say that people with disabilities were not often institutionalized. The charity model during the Renaissance promoted institutionalization as doing what was best for people with disabilities. Periods from the Renaissance through World War II indicated that society believed people with disabilities might be educated but in "special" segregated programs or schools, often far from urban or heavily populated areas. F. This institutionalization led to the ultimate in abuse during the 1930s in Hitler's Germany. People with disabilities, most notably those with mental retardation and mental illness, became the Gestapo's first guinea pigs in medical experimentation and mass execution. Before Hitler's SS began mass extermination of Jews, Gays and Lesbians and other minorities and their supporters, people with disabilities were all put to death by Hitler's concentration camp staff. G. Early in the formation of the United States, the first settlers of the American colonies would not admit people with disabilities because they believed such individuals would require financial support. Colonists enacted settlement laws to restrict immigration of many people, including those with disabilities. This did not, of course, prohibit people with disabilities from being born in the colonies or acquiring disabilities after they were already settled here. H. But by 1880, after the development of almshouses for people who were poor or in need of basic support, most states and territories had programs for people with specific types of disabilities. Most of these programs were large institutions where people who were blind, deaf, mentally retarded or otherwise physically disabled were sent for treatment, education or to spend their entire lives. I. The movement west, otherwise known as the American Frontier Movement, inspired a peculiarly American belief that social ills could be eradicated by local initiatives. The concept of "rugged individualism" was born in the American Frontier and still maintains a powerful hold over political debate today. In fact, the desire for independent living today carries with it the seed of many "rugged individualist" ideals. For some people with disabilities, this meant they need not be condemned because they could not earn their own living. Some community-based services began to emerge but people with disabilities were still usually segregated from society as a whole. Rural areas were the only places where people with disabilities tended to live with their families in integrated settings. J. Rehabilitation services on a broad scale were introduced as a federal program following World War I. The emphasis for these first rehabilitation programs was on the veteran with a disability who was returning home to the United States. The need for training or re-training created the first federally funded program for people with disabilities -- a program now known as the federal-state vocational rehabilitation system. K. During the 1940s, the blind community argued for separate services for people who were blind based upon the belief that people who were blind did not need rehabilitation but education. Advocates who were blind argued that rehabilitation is based upon a "medical model" where the person who is blind needs to be treated and cured rather than educated to live with blindness. The debate over what approach to use resulted in a "split" within the vocational rehabilitation program, allowing state vocational rehabilitation agencies and agencies serving the blind to become separate entities within a state. L. Not until the social change movements during the 1960s were other major services for people with disabilities seriously considered by federal legislation. Although the Social Security system provided benefits to those who had earned sufficient income over a long enough time period and had become disabled (i.e., unable to work), there was no attempt to broaden the base of services for people with disabilities beyond the vocational rehabilitation approach. For the first time in U.S. history, consumers, advocates and service professionals began an intensive examination of the human service delivery system to decide what was missing. Community-based programs for people with disabilities began growing all over the nation in an attempt to fill the gaps left by these missing services. New concepts, new technology and new attitudes were beginning to make a difference in the lives of people with disabilities. II. Attitudes and Behaviors Inherited A. The history of how people treated those with disabilities gives us the attitudes and behaviors of today. B. Attitudes of non-disabled people toward people with disabilities (and people with disabilities to people with different disabilities than their own) are generally based upon the following: 1. Projection - imagine having the disability (barrier awareness days) 2. Ideal Body - belief that a perfect body is the norm (Playboy and Playgirl magazines) 3. Generalization - assumption that the achievements and/or failures of one person should apply to others with the same or similar disability (super crips and TV shows with angry or self-pitying people with disabilities) 4. Atonement - belief that disability is punishment for sin (healings) 5. Spread - assumption that one disability includes others (waiter in restaurant speaks to non-disabled person rather than person with disability) C. Negative behaviors resulting from these attitudes are: 1. Abuse - verbal, visual, emotional or physical 2. Avoidance - institutionalization, isolation, no communication or eye contact 3. Patronization - talking down to, taking care of, assuming incapacities III. The Start of the Independent Living Movement A. Beginning of IL Movement: Much of the movement results from reactions to the above attitudes and behaviors, i.e., our history. IL represents rebellion against the traditional system. B. First CIL in Berkeley, CA. This is the model that most generic CILs follow today. C. Boston, CILs in California, Massachusetts, Michigan, and Texas centers started around the same time. IL is a reaction to the traditional service delivery system and particularly the "medical model." Many early CILs had a mix of "IL philosophy" and "medical model" because of funding patterns. D. The "Medical Model" assumptions: 1. Physician is technically competent expert. 2. Medical care should be administered through a chain of authority wherein the physician is the principal decision-maker. 3. The "patient" is expected to assume the "sick" role. 4. The main purpose of medicine is the provision of acute/restorative care. 5. Illness is muted primarily through the use of clinical procedures such as surgery, drug therapy and the "laying on of hands." 6. Illness can only be diagnosed, certified, and treated by trained practitioners. D. The Sick Role - People with disabilities are expected to play this or the "impaired role." The sick role consists of two interrelated sets of exemptions and obligations: 1. A sick person is exempted from "normal" social activities and responsibilities depending on the nature and severity of the illness. 2. A sick person is exempted from any responsibility for his/her illness. He/she is not morally accountable for his/her condition and is not expected to become better by sheer will. In exchange: 3. A sick person is obligated to define the state of being sick as aberrant and undesirable, and to do everything possible to facilitate his or her recovery. 4. A sick person is obligated to seek technically competent help and to cooperate with the physician in getting well. Because disability is often an irrevocable part of a person's existence, the person with the disability begins to accept not only the condition but also the belief that his or her very own personhood is aberrant and undesirable. Moreover, he or she begins to accept the dependency prescribed under the sick role as normative for the duration of the disability. E. The Impaired Role - The impaired role is ascribed to an individual whose condition is not likely to improve and who is unable to meet the first requirement of the sick role, i.e., the duty to get well as soon as possible. Occupants of the impaired role have abandoned the idea of recovery altogether and have come to accept their condition and dependency as permanent. The impaired role is not a normative one or one prescribed by the medical model, but is a role a disabled person is allowed to slip into as the passage of time weakens the assumptions of the sick role. The dependency creating features of the medical model and the impaired role are most pronounced in institutional settings. Quote: Patients are encouraged to follow instructions, rules and regulations. Compliance is highly valued, and individualistic behavior is discouraged. The "good" patient is the individual who respectfully follows instructions and does not disagree with the staff. On the other hand, the patient who constantly asks for a dime for the pay phone, a postage stamp, or a pass to leave the institution on personal business, tends to be treated as a nuisance or labeled "manipulative." Patients do not make their own appointments, keep their own medical charts, or take their own medications. Responsibility for these things is legally vested in the institution. Yet on the day of discharge, the patient is expected to suddenly assume control of his own health care and life decision-making. Corcoran, 1978. Does this quote bring to mind other service providers (besides institutions) which create the same role for the person with the disability? F. Rehabilitation originates in the medical model and flows from "medical" practice. This is one reason why a medical evaluation or diagnostic is necessary for service delivery. G. Independent Living originates in reactions to the dehumanizing process inherent in the medical model and to the need for civil rights, equal access and equal opportunity. H. Centers for Independent Living represent the reality of this reaction. They also represent the convergence of five other social movements of the 1960s -- the period of U.S. history which saw great social change as mentioned above. According to Gerben DeJong in his paper, "The Movement for Independent Living: Origins, Ideology and Implications for Disability Research," these five social movements created the necessary atmosphere for the current activities of both the disability rights movement and the development of centers for independent living. Centers still emphasize the primary principles of these other five movements in their services and advocacy approach. Starting with the Center for Independent Living (CIL) in Berkeley, California in the late 1960s, disability rights and independent living concepts merged into one operational organization. Essentially individuals with disabilities joined together to protest their exclusion from society's mainstream and to demand more humane, non-medical attention from the nation's service delivery system. By 1972, there were at least five states where CILs similar to the Berkeley model had been established. These new organizations, run by people with disabilities for people with disabilities, were trying to respond to a rising demand from the disabled community for control over their own services. 1. Much of this demand sounds like the civil rights movement led by African-Americans during the 1950s and 1960s. People with disabilities pointed out that -- just like other minorities -- they were being denied access to basic services and opportunities such as employment, housing, transportation, education and the like. Like Rosa Parks, people with disabilities want and need to be able to ride the bus. The only difference is that Rosa Parks as an African-American woman was not permitted to sit in the front of the bus while people with disabilities just want to get on the bus. 2. Consumerism, a movement led by well-known national figures such as Ralph Nader, contributed another element to the growing disability rights and independent living movement. People with disabilities were, for the first time, stressing their role as consumers first and "patients" last. In other words, individuals with disabilities wanted the right to educate themselves and decide for themselves what services and products they wished to purchase (even if a third party was paying for the service or product). As "clients" or "patients," people with disabilities were rarely given any autonomy or power over the services and products they would use. 3. Self-help is nothing new in the United States, but organized self-help programs are relatively new. The original non-professional, self-help program which is best known in the U.S. is Alcoholics Anonymous. Having a severe disability may not be exactly the same as having a problem with alcohol, but a strong parallel remains. Leaders of the disability rights and independent living movement believe that only persons with disabilities know best how to serve others who have the same or similar disabilities. The concept of "peer" counseling and self-help groups are the most common methods of self-help. 4. De-medicalization and de-institutionalization share certain common characteristics. De-medicalization for people with disabilities means removing the involvement of medical professionals from the daily lives of individuals with disabilities. People with disabilities are not "sick." They are disabled and not dependent upon medical professionals for every day needs. The perfect example of a "de-medicalized" service for persons with severe mobility disabilities is that of "personal assistance." Personal assistance is a consumer-directed service whereby the person with the disability recruits, hires, trains, manages and fires his or her own personal assistants. When consumers with disabilities are allowed to buy the services they need for daily survival from whomever they choose, they have "de-medicalized" the service. Unfortunately, the vast majority of services provided to people with disabilities are still rooted in the "medical model," regardless of the individual's needs and desires. 5. De-institutionalization, which began in response to large mental health facilities for those who are mentally ill or mentally retarded, follows the principles of de-medicalization. Most institutions are staffed by medical personnel, even if residents are not ill. Since many such individuals are only disabled by some permanent type of condition, placement in institutions is inappropriate and far more costly than providing those same residents with the support services they need to live in their chosen communities. The disability rights and independent living movement is working towards the development of those other non-medical and community-based services which would assist institutionalized persons to move back to their home towns or areas. The disability rights and independent living movement are a compilation of all five social movements as they pertain to and are defined by people who have disabilities. Since most traditional rehabilitation programs are built upon the "medical model" of service delivery, the disability rights and independent living movement promotes a completely different approach to service delivery. Independent living as a movement is quite unique compared to existing programs and facilities serving people with disabilities. Centers for independent living across the nation are working toward changing their communities rather than "fixing" the person with a disability. CILs were originally defined by the first CIL in Berkeley and now are commonly referred to as consumer-controlled, community-based, non-residential not-for-profit organizations providing both individualized services and systems advocacy. See the paradigms chart on the next page. The "Independent Living Paradigm" MEDICAL MODEL, REHABILITATION, COMMUNITY ASSISTANCE (service delivery system), CHARITY PARADIGM INDEPENDENT LIVING, DISABILITY RIGHTS, DISABILITY CULTURE, DISABILITY PRIDE PARADIGM Definition of the problem physical or mental impairment; lack of vocational skill, lack of education, lack of socio-economic status, lack of political and cultural skills dependence upon professionals, family members and others; hostile attitudes and environments; lack of legal protection; lack of recognition of inherent worth of people with disabilities (stereotypes). Locus of the problem in the individual (individual is "broken" or "sick" and needs to "fixed" or "cured" to "fit" into society) in the socio-economic, political, and cultural environment; in the physical environment; in the medical, rehabilitation, service delivery or charity processes themselves (dependency-creating). Solution to the problem professional interventions; treatment; "case management" or volunteer work based on pity and related attitudes 1) advocacy; 2) barrier removal; 3) consumer-control over options and services; 4) peer role models and leaders; 5) self-help -- all leading to equitable socio-economic, cultural and political options. Social role of person individual with a disability is a "patient," "client," or recipient of charity; in many situations, the social role is non-existent family and community members; "consumers" or "customers," "users" of services and products -- just like anyone else. Who controls professional person with the disability or his/her choice of another individual or group. Desired outcomes maximum self-care (or "ADL" -- activities of daily living as used in occupational therapeutic sense); gainful employment in the vocational rehabilitation system; no "social misfits" or no "manipulative clients" independence through control over ACCEPTABLE options for living in an integrated community of choice; pride in unique talents and attributes of each individual; positive disability identity. This paradigm was originally developed in 1978 by Gerben DeJong, now with the National Rehabilitation Hospital in Washington, D.C. It has been modified since then by Maggie Shreve, an organization development consultant working in the field of disability rights out of Chicago, and Steve Brown, a disability policy consultant and principle co-owner of the Institute for Disability Culture in Santa Fe, New Mexico. IV. Federal Laws Supporting the Independent Living Paradigm 1968 Architectural Barriers Act (designed to eliminate architectural barriers in all federally owned or leased buildings) 1970 Urban Mass Transit Act (required that all new purchases of mass transit vehicles be lift equipped; APTA sought and won a court injunction barring implementation of the proposed regulations) 1973 Rehabilitation Act (Section 504 and related non-discrimination provisions in programs receiving federal funds) 1975 Developmental Disabilities Bill of Rights Act (Protection & Advocacy or P&A agencies in each state established) 1975 P.L. 94-142, Education of All Handicapped Children Act, now titled Individuals with Disabilities Education Act or IDEA (written to require a free, appropriate, integrated public education for children with disabilities; "mainstreaming" children with disabilities into regular classrooms) 1978 Rehabilitation Act Amendments (Title VII, Comprehensive Services for Independent Living, was created; Part B funded creation and operation of "centers") 1983 Rehabilitation Act Amendments (mandated that each state operate a Client Assistance Project or CAP; Title VII Part A funded to buy services for IL clients - a concept parallel to the basic VR program) 1984 Voting Accessibility for the Elderly and Handicapped Act (provides that all polling places must be accessible) 1985 Mental Illness Bill of Rights Act (expanded P&As to cover mental illness) 1986 Rehabilitation Act Amendments (advocates fought for and won "consumer control" for Title VII Part B center boards; supported work programs created and funded) 1988 Air Carrier Access Act (designed to provide for equal access on private airlines) 1988 Civil Rights Restoration Act (clarified that any organization or corporation receiving federal funds may not discriminate in any of their programs) 1988 Fair Housing Act Amendments (prohibits discrimination against people with disabilities in housing and creates universal design in new construction provisions) 1990 Americans with Disabilities Act (creates broad civil rights protections for people with disabilities modeled after the Civil Rights Act of 1964) 1991 Civil Rights Act (allows for punitive damages in a civil suit for discrimination on the basis of disability in employment; strengthens Title I of the ADA) 1992 Rehabilitation Act amendments (dramatically restructures Title VII to set standards for centers for independent living, to create an independent statewide independent living council responsible for statewide planning of center networks and independent living services, and establishes direct funding for centers in states where state funding for center operations is less than the federal allotment) V. Title VII of the Rehabilitation Act A. The Rehabilitation Act of 1973, as Amended in 1986, included the following parts: 1. Title VII Part A funds services for independent living rehabilitation (oxymoron) to individuals determined "eligible" for such services; parallels Title I (vocational rehabilitation program); based upon the medical/rehabilitation paradigm. 2. Title VII Part B was written to establish centers which operate with the IL philosophy, basing programs on the independent living paradigm; however, Part B grants have gone to single disability organizations, state agency operated centers, rehabilitation hospitals, and developmental disability group home operators -- none of which operate under the IL philosophy or paradigm. 3. Title VII Part C funds programs of service for older blind adults -- a contradiction of the cross disability focus of the movement. 4. Title VII Part D (un-funded until 1990) provides funds for "protection and advocacy of individual rights," but denies CILs access to these funds because they are recipients of Title VII funds -- even though consumers of CIL services are already "protected" by the mandated client assistance project (CAP) for any grievances against a specific center or center service. These funds could have been used by centers to buy "protection and advocacy" (or legal) services for CIL consumers by allowing the CIL to hire an attorney on staff or to contract with a local law firm. B. The Rehabilitation Act of 1992 dramatically changed the structure and flow of Title VII money to the states for centers and for services. (See chart on next page for comparison of the "old Title VII" and the new.) Included in the current draft are the following critical changes: 1. Statewide Independent Living Councils (SILC) -- There will be new statewide independent living councils which will have broader responsibilities and "real" authority, such as: a. co-sign off authority for the state plan; b. members will be appointed by the governor; COMPARISON OF OLD AND NEW TITLE VII OF REHAB ACT OLD NEW A - Independent living rehabilitation services for individuals B - 3 year grants to establish and operate CILs C - Services for older, blind adults D - Protection and advocacy for individual rights (PAIR) Chapter 1 A - Purpose, philosophy, definitions, structure, establishes SILCs B - Formula funding to states based upon state plan C - Ongoing funding to CILs meeting standards Chapter 2 Services for older, blind adults c. one member must be the executive director of a CIL who is selected by other center directors within the state; d. others on the council will include representatives of appropriate state agencies, including vocational rehabilitation and blind agencies, but they will be non-voting members; e. it will be consumer controlled, with at least 51 percent of the members being people with disabilities (not counting people who work for centers or state agency representatives, even if they have disabilities); and, f. at last, but my no means least, it will have staff to supervise, evaluate and assist in carrying out the SILC's duties. 2. Systems Change -- The new Act contains a section that is considerably different than the past Title VII Part A. It is a new Part B and will be used to demonstrate new ways to expand and improve independent living services. Money to support new and innovative approaches to service delivery may be drawn from either Title VII Part B or the new Part C under Title I ("Strategic Planning: Innovation and Expansion Grants"). The state vocational rehabilitation agency and the statewide independent living council will jointly develop a plan for such projects. For example, these projects could include demonstrations on how independent living services can be delivered in an underserved portion of the state. 3. Centers for Independent Living -- One significant change in the new amendments is that organizations receiving CIL funds must meet National Council on Disability (NCD) standards, slightly revised from earlier versions. Key definitions, standards and assurances are all spelled out in the new Title VII and have been altered to fit the philosophical and experiential base the movement now has. Funding for CILs comes from the Senate version's new Title VII Part C (replacing the old Part B). Centers currently receiving Title VII Part B funds who can meet the NCD standards will continue to receive funds under the new law. As long as the centers meet standards, they will continue to receive funds. If a center does not meet standards after the first year, the Feds or states can pull their funds with only 90 days notice! 4. Methods of Funding -- How a center gets its money depends upon the level of state funding going into center operations. If a state contributes an amount equal to or greater than its current Title VII Part B allotment, then the state could continue to receive the federal dollars for distribution to centers. If the state is not contributing an equal amount, then funding goes directly from RSA, through regional offices, to the centers in that state. Even if a state is contributing more than the Feds, it could elect to allow the CIL funding to go directly from RSA to the CILs by not applying for the money itself. 5. Oversight of Title VII -- Oversight responsibility for Title VII Part B activities resides with the designated state agency and the statewide independent living council (SILC) as described in the state's plan for Title VII. Oversight for the CILs under Title VII Part C is tricky: either it will belong to the designated state agency or it will belong to RSA, depending upon which entity contributes the most to CIL operations. In states like California, Illinois, Massachusetts and New York, the state contributes more funds to CILs than does RSA. In other states, RSA contributes more. So, whichever entity contributes more to CIL operations has oversight responsibility, including compliance reviews to ensure that CILs meet standards. Once a decision about the funding flow has been made by a state contributing more funding to center operations than the federal government, the state is expected to continue its involvement at that level. This is to protect CILs from being administered one year by their states and the next by RSA, and so on. 6. Employability -- Many independent living advocates wanted employment feasibility criteria removed from the Act altogether, but recognized that this could set up the rehabilitation system as a funding source for individuals who have no intent of pursuing a vocational goal. This could have meant that people could use its funds inconsistent with the Act's basic purpose. For example, someone with a terminal illness could apply for funds to cover surgical expenses. But significant changes were made to the "employment feasibility" issue in other ways. One significant change involves who is responsible for proving that an individual with a disability is employable or can benefit from vocational rehabilitation services. Generally referred to as "presumption of benefit," the new law places the burden to prove that an individual cannot benefit from VR services on the VR counselor. The counselor must have "clear and convincing evidence" that a person cannot benefit -- this is the highest civil standard in law. If there is confusion or doubt about eligibility because of the severity of an individual's disability, then the consumer can receive services through an extended evaluation period for up to 18 months, with an evaluation every three months to determine progress. Also, a counselor must determine eligibility in a "reasonable amount of time" but no longer than 60 days. 7. IWRP -- The new law requires that the "individualized written rehabilitation plan" (IWRP) be "jointly developed, agreed upon and signed" by the counselor and the consumer. An innovation here -- the IWRP must include a statement by the consumer, in his or her own words (or the words of a legal parent or guardian), describing how he or she was informed of options and how goals and objectives for the plan were selected. And there must be "consumer choice" over vocational rehabilitation options and services, including the use of vendors not previously authorized or used by the state vocational rehabilitation agency. 8. State Rehabilitation Advisory Councils -- This is new. A consumer advisory council is established to be involved in the decision-making process, including helping to select impartial hearing officers. The council will be appointed by the governor and composed of a designated representative of the statewide independent living council (SILC) as well as others from public and private organizations involved in rehabilitation. C. The Rehabilitation Act needs radical reform if the IL paradigm is to be retained and reinforced in pursuit of equal access and equal opportunity. The Act of 1992 is a major beginning. It says, in law, that CILs must: 1. Establish themselves as private, not-for-profit organizations governed by an independent board of directors; 2. Be community-based and community responsive; 3. Maintain a majority of people with disabilities on their boards of directors and on their staff; 4. Truly represent different disability groups; be cross-disability in approach and composition; 5. Provide services, including the "core services" of I&R, advocacy, independent living skills training, and peer counseling, which are directed by "consumers" themselves; and 6. Advocate for systems change, laws, regulations, policies and procedures which create and maintain equal access for people with disabilities who want to live independently in the communities of their choice. VI. Standards for Independent Living Centers -- The following is the current language of the standards which CILs will have to meet to continue to receive Title VII funding under the Rehabilitation Act Amendments of 1992: SEC. 725. STANDARDS AND ASSURANCES FOR CENTERS FOR INDEPENDENT LIVING. (a) In General. Each center for independent living that receives assistance under this part shall comply with the standards set out in subsection (b) and provide and comply with the assurances set out in subsection (c) in order to ensure that all programs and activities under this part are planned, conducted, administered, and evaluated in a manner consistent with the purposes of this chapter and the objective of providing assistance effectively and efficiently. (b) Standards. (1) Philosophy. The center shall promote and practice the independent living philosophy of (A) consumer control of the center regarding decisionmaking, service delivery, management, and establishment of the policy and direction of the center; (B) self-help and self-advocacy; (C) development of peer relationships and peer role models; and (D) equal access of individuals with severe disabilities to society and to all services, programs, activities, resources, and facilities, whether public or private and regardless of the funding source. (2) Provision of services. The center shall provide services to individuals with a range of severe disabilities. The center shall provide services on a cross-disability basis (for individuals with all different types of severe disabilities, including individuals with disabilities who are members of populations that are unserved or underserved by programs under this Act). Eligibility for services at any center for independent living shall not be based on the presence of any one or more specific severe disabilities. (3) Independent living goals. The center shall facilitate the development and achievement of independent living goals selected by individuals with severe disabilities who seek such assistance by the center. (4) Community options. The center shall work to increase the availability and improve the quality of community options for independent living in order to facilitate the development and achievement of independent living goals by individuals with severe disabilities. (5) Independent living core services. The center shall provide independent living core services and, as appropriate, a combination of any other independent living services specified in section 7(30)(B). (6) Activities to increase community capacity. The center shall conduct activities to increase the capacity of communities within the service area of the center to meet the needs of individuals with severe disabilities. (7) Resource development activities. The center shall conduct resource development activities to obtain funding from sources other than this chapter. (c) Assurances. The eligible agency shall provide at such time and in such manner as the Commissioner may require, such satisfactory assurances as the Commissioner may require, including satisfactory assurances that (1) the applicant is an eligible agency; (2) the center will be designed and operated within local communities by individuals with disabilities, including an assurance that the center will have a Board that is the principal governing body of the center and a majority of which shall be composed of individuals with severe disabilities; (3) the applicant will comply with the standards set forth in subsection (b); (4) the applicant will establish clear priorities through annual and 3-year program and financial planning objectives for the center, including overall goals or a mission for the center, a work plan for achieving the goals or mission, specific objectives, service priorities, and types of services to be provided, and a description that shall demonstrate how the proposed activities of the applicant are consistent with the most recent 3-year State plan under section 704; (5) the applicant will use sound organizational and personnel assignment practices, including taking affirmative action to employ and advance in employment qualified individuals with severe disabilities on the same terms and conditions required with respect to the employment of individuals with disabilities under section 503; (6) the applicant will ensure that the majority of the staff, and individuals in decisionmaking positions, of the applicant are individuals with disabilities; (7) the applicant will practice sound fiscal management, including making arrangements for an annual independent fiscal audit; (8) the applicant will conduct annual self-evaluations, prepare an annual report, and maintain records adequate to measure performance with respect to the standards, containing information regarding, at a minimum (A) the extent to which the center is in compliance with the standards; (B) the number and types of individuals with severe disabilities receiving services through the center; (C) the types of services provided through the center and the number of individuals with severe disabilities receiving each type of service; (D) the sources and amounts of funding for the operation of the center; (E) the number of individuals with severe disabilities who are employed by, and the number who are in management and decision-making positions in, the center; and (F) a comparison, when appropriate, of the activities of the center in prior years with the activities of the center in the most recent year; (9) individuals with severe disabilities who are seeking or receiving services at the center will be notified by the center of the existence of, the availability of, and how to contact, the client assistance program; (10) aggressive outreach regarding services provided through the center will be conducted in an effort to reach populations of individuals with severe disabilities that are unserved or underserved by programs under this title, especially minority groups and urban and rural populations; (11) staff at centers for independent living will receive training on how to serve such unserved and underserved populations, including minority groups and urban and rural populations; (12) the center will submit to the Statewide Independent Living Council a copy of its approved grant application and the annual report required under paragraph (8); (13) the center will prepare and submit a report to the designated State unit or the Commissioner, as the case may be, at the end of each fiscal year that contains the information described in paragraph (8) and information regarding the extent to which the center is in compliance with the standards set forth in subsection (b); and (14) an independent living plan described in section 704(e) will be developed unless the individual who would receive services under the plan signs a waiver stating that such a plan is unnecessary. A complete copy of Title VII of the Rehabilitation Act Amendments of 1992 is included in the appendices of this workbook. [Editor's Note: these are not included here because of space considerations.] VII. Transitions Continuum or Spectrum Some of us who were involved with centers in the late 1970s and early 1980s struggled to explain exactly what "independent living" meant in the context of a service delivery system. I came up with this spectrum to show various stages of independence based upon where one lives. It is a simple tool, really, demonstrating various residential settings a person with a disability face. Total Economic Independence Total Subsidized Independence Semi-Supervised Living Community- Based Transitional Living Supervised Living (Institutional-ization) Assumptions made about this spectrum include: A. Most models of service delivery continue to be based on what is convenient for the system rather than appropriate to the individual. B. Institutional biases continue to dominate in terms of cost and attitude. Remember how "patients" in institutions behave and think; people living in group homes are pressured to conform to the wishes of the professional staff; or those who have "case managers" with primary responsibility for the consumer's services and, usually, the direction of the consumer's life. C. Cost is key. As consumers assume more responsibility and control, costs go down. This is not necessarily true for the most severely disabled individual, but on average, costs of community-based services are much less than those of institutionalized or highly supervised services. VIII. The Problems and Importance of Language (see also "Language is More Than a Trivial Concern" by Kailes)1 A. Language paints visual portraits for everyone -- people with disabilities must be in control of what the public knows, sees, hears and understands B. Kailes has written that language is more than a trivial concern: she's right, but for more reasons than her current paper discusses. The movement itself is sloppy about language -- even about word choices in service delivery and advocacy. C. Feelings and thinking about language must be tied to our fight for equality and our identity. D. IL views disability as something to be proud of ... not ashamed of -- we must promote positive self-images, disability identification and disability pride. E. Disability is not the problem -- environment and attitudes are. F. Words like "case" "frail" "crippled" "patient" "wheelchair-bound" "deaf and dumb" and "retarded" paint the wrong picture of who we are. G. Differences with traditional rehabilitation: 1. Medical model services place responsibility for service delivery on the professional while the person with a disability is treated like a "patient" or uneducated "client." 2. Independent living services place responsibility for service delivery on the person with the disability as the "consumer" and coordinator of service delivery. 3. This marks a shift in mentality from one of dependence upon professionals to dependence upon self. H. A few of the words to avoid: 1. "Case" comes from both legal and service delivery systems. The typical understanding of the word case comes from "case worker," a social work term for the professional manager of service for clients. It is distancing and carries authoritarian overtones. 2. "Client" has the same overtones because of its heavy use within the traditional rehabilitation and medical model service delivery system. We understand that client comes from ancient Greek or Latin, meaning "to be controlled." In Webster's Seventh Collegiate Dictionary, its primary meaning is "a person under the protection of another; vassal, dependent." 3. "Intake" means "a taking in." In social and human service terms, it generally means that someone is taken into a program, determined eligible or "admitted." Many CIL services do not require nor should they need to "take people in." 4. "Frail" means "easily led into evil" or "easily broken or destroyed," "physically weak, slight, unsubstantial" -- does this word describe someone in control of his or her own destiny? 5. "Wheelchair bound" or "confined to a wheelchair" implies less value, less potency and less activity than "wheelchair user" does; also conveys a stereotype that people using wheelchairs never get up, never go anywhere, are literally tied to their chairs or their beds (as in "bed-ridden"). People use wheelchairs to increase their mobility. Some people who walk still use wheelchairs because they are faster, easier, and less tiring than walking. For many, wheelchairs mean mobility and freedom -- not imprisonment and segregation! 6. "The disabled," "the handicapped," "cripple," "invalid" (not valid????), etc. are all stereotypical and limiting in a wide variety of ways. A woman who has a disability is also a mother, wife, student, citizen, board member, gifted public speaker, etc. A man who is quadriplegic may have a severe physical disability, but he is not a "vegetable." He may be an executive director of an agency or a marketing specialist with a major corporation. We can choose to emphasize people's similarities or differences in numerous ways. What is most important about the person you are trying to describe? The phrase, "disabled person" is just a sloppy short-cut to the sometimes more awkward, but psychologically sounder expression, "person with a disability" because the latter connotes that a person with a disability is first and foremost a person! 7. "Patient" means "an individual awaiting or under medical care and treatment." Since most people with disabilities are not actively "sick" or under constant medical care, the word patient is inappropriate when applied to someone who simply has a disability. For example, a friend's father was talking about the people he sees as a "mall walker" and he described young people, old people, a grand mother with her grand children, a child with a disability and a stroke patient. My friend said, "Oh! You mean the man who had the stroke was there with his doctor examining him? Isn't it kind of hard to walk and use a stethoscope at the same time?" "Patient" is only correct when a person is being actively treated by medical personnel -- just like people without disabilities describing them-selves when they talk to their doctor's office but not when mall walking! I. The problems with these words: 1. These words set up "superior/inferior" relationships which embody strong value systems, expectations and key activities. Once established, these superior to inferior roles and relationships often are self-fulfilling prophecies throughout the term of the service being provided. 2. Deficiency-oriented language used by service providers obscures the true role of a "consumer" of service -- it inevitably harms people by undermining their sense of capacity and self-worth. Service providers must realize that their use of such words places people at risk of a reduced sense of well-being, including discrimination on the basis of social status (such as being poor) or disability or both, being segregated from community life and being generally powerless. Such language is insensitive and judgmental, implying deep-seeded attitudes towards the people being served. QUOTE: All service providers have been exposed to discussions related to labels that generally carry heavy negative social consequences. Many people who are labeled developmentally disabled or physically disabled are never going to be "fixed" by the service professions. Nevertheless, they are frequently subjected to years of "training" to write their name or tie their shoes when these tasks will never really be accomplished in any useful, functional way. Many of the same people have many capacities that are unused and unshared while their life is surrounded by special services that will demonstrably fail to fix the deficiency, so the denial of opportunity to express capacities is a mind set that is often reflected in service providers' language. John McKnight EXAMPLE: People magazine (December, 1988) article about Stephen Hawkings, internationally known physicist at Cambridge University, "Wrecked by Lou Gehrig's Disease, the body of the greatest cosmic thinker since Einstein huddles helplessly in a wheelchair....What's left of Stephen Hawkings, the physical man, is a benign head ripped by a drooling grin and a body collapsed into a pile of wasted limbs, ravaged by ALS...." 3. At the first encounter with a person who has a disability, a service provider may find the disability the most prominent fact in his or her awareness. But its prominence in the provider's mind set may not represent any importance to the matter at hand. People need to carefully avoid giving disability more prominence than it deserves. 4. CILs can help service providers recognize this flaw by focusing on the need at hand and not on the disability itself. CILs must make a commitment to not allow service providers to hide behind the jargon and quasi-scientific vocabulary of human service that is not the precise shorthand that people espouse it to be, but a device to disguise service provider policy confusion and ignorance. This commitment allows people with disabilities who are requesting services to understand what is available almost immediately and to relate to it personally, to own it and to advocate for it. See chart of example on next page. 5. The Americans with Disabilities Act of 1990 is radically changing the way in which employers, government and places of public accommodation CAN treat people with disabilities -- since they cannot ask questions about disability, stereotype or make false assumptions about negative characteristics, why should the service delivery system???? We must be the best at putting forth the right vocabulary. We must be the role model! EXAMPLES OF MODEL LANGUAGE FROM THE INDEPENDENT LIVING MOVEMENT (from a draft by June Isaacson Kailes) Traditional Services CIL Services (Dehumanizing, offensive, paternalistic, unacceptable) (Acceptable) CLIENT Person with a disability, "consumer," "citizen," (colleague, brother, sister, husband, wife, friend) CASE Individual with a disability, "consumer" CASE MANAGEMENT Service coordination, getting the right people and the right services to show up at the right time TERMINATED CLIENT Inactive consumer MENTAL STATUS Judgment CLIENT NEEDS ASSESSMENT Understanding the needs of the individual INFORMAL SUPPORT NETWORKS Friends and relatives QUALITY ASSURANCE Making sure the people helping the individual know what they are doing HOME MAKER, HOME HEALTH NURSE, CARE-GIVER Personal assistant FRAIL; DISABLED PERSON Elderly; a person with a disability J. Euphemisms 1. Some people with disabilities -- frustrated and dissatisfied with the common negative terms used to describe disability -- have coined such new terms as: a. Able-disabled b. Differently-abled c. Handicapper d. Handi-capable and handi-capper e. Inconvenienced f. Physically challenged (or mentally challenged) g. Exceptionality or "special" (used mainly in special education) 2. "Consumer," a word which has substantial power within the "consumer movement" defined by Ralph Nader and other consumer advocates, has become euphemistic within the disability service delivery system. "Consumer" means "one who consumes." But within the disability service system, many people with disabilities are not free to decide what they will and will not "consume." Therefore, the word consumer presents new problems. Many rehabilitation agencies and service providers are using the word consumer but not changing their attitudes or behaviors toward their "clients." McKnight likes the word "citizen." Code-switching may be the answer to this current dilemma. 3. Euphemisms simply lessen the impact of what we truly want: power! Power over our daily lives and power within the democratic system of government and society as a whole. K. Code-switching 1. Just as Negro became African American and Indian became Native American (depending on what tribe you encounter -- some tribes prefer American Indian), so must people with disabilities speak in unison about what we choose to call ourselves. We need a vision of who we are. People with disabilities must stop thinking of them-selves in an apologetic way and be proud that they are strong enough to demand their rights instead of begging for whatever they need to live independently and with dignity. 2. Code-switching means that we use correct terminology, i.e., "people with disabilities" when speaking outside our culture, but we can use our own labels within our culture, i.e., "consumers." 3. African Americans are most adept at code-switching. On the job, they use English. Back home, they use black English or "street language" which has its own idioms and syntax. 4. People who are deaf do the same thing, using signed English in the college classroom but switching back to ASL in the dorm with other students who are deaf. 5. People with disabilities may use "gimp" or "crip" when and where it is safe to do so -- among ourselves -- but not when we are presenting ourselves to others outside the culture. Right now the disability rights movement has rooted its culture in CILs and a few other disability-specific and grass-roots organizations. L. As a movement, we haven't been able to agree on what to call ourselves. Some people who are blind use "blink" in a joking way, others do not. Some people who are deaf are using a capital D in deaf as a matter of pride, such as culturally Deaf. M. Terms used to describe us have been imposed from the outside for the most part. We are still struggling to choose our words ourselves, but consensus seems to be developing. 1. Social services have called us handicapped. 2. Medical models and insurance companies call us disabled. 3. There was even a contest sponsored by the Cristina Foundation to come up with a positive word or phrase to describe people with disabilities. The winner, a special education teacher who has a disability but who does not identify himself as an individual with a disability, received $50,000 for his suggestion of "differently able." Do you think any other minority group would tolerate a contest with a cash prize for the best name for themselves? Why do we as people with disabilities tolerate this type of activity? N. Culture and language 1. Generally, language is the root of a culture. ASL is the root of deaf culture; Spanish is the root of Hispanic cultures; Russian is the root of Russian culture, various languages distinguish one Indian tribe from another, etc. 2. Every major ethnic, racial or religious minority group in the United States has some language or "code" at the core of its cultural identity. People with disabilities do not have this cultural tie, except for people who are deaf. O. We are creating language to reflect the culture we are trying to create -- once we have language and reach consensus on the value of that language, disability pride, disability rights, and the movement for independent living will blossom. IX. What Next? How can you put the principles of the independent living movement into practice? A. CILs must meet federal definitions, assurances and standards 1. "Consumer controlled", meaning run by people with disabilities (not parents or professionals); 2. "Market-driven" where the primary market is people with disabilities; 3. Community based, meaning located in the community it serves and non-institutional; 4. Non-residential, meaning the center does not provide residential programming unless it is of 8 weeks or less and only for the sole purpose of independent living skills training such as many rural areas use; 5. Cross-disability in governance, approach, marketing and promotional efforts, advocacy and service delivery, ensuring that no one disability group is heavily favored over another and that all center services are accessible to all persons, regardless of disability type; 6. Combining service delivery ("converting" or persuading those with disabilities to the independent living philosophy) and systems advocacy (using service information and community feedback to organize for community and social change); 7. Resisting evaluation systems which are heavily bureaucratic, viewed as "paternalistic" or "product-driven" (i.e., bean-counting); 8. Viewing disability issues in terms of "civil rights" rather than "special services." B. The Americans with Disabilities Act (ADA) is key to the future. Work on its implementation through technical assistance and education as well as through alternative dispute resolution or the filing of complaints. C. How organizations can pass the "reality versus rhetoric" test: 1. Is the person with the disability in charge of service selection and direction? Is the person with the disability expected to accept responsibility for selecting or directing support services? 2. Are people with disabilities the majority of the decision making body (board, staff, volunteers)? 3. Is advocacy to change society (i.e., eliminate architectural, communication, social and related barriers) a top priority? Are services to individuals tied to this same advocacy thrust? 4. Is non-discriminatory language used daily? Are people with disabilities referred to as "they" or "them?" If the words "person with a disability" are exchanged with "person who is African American," do the words become racist or patronizing? D. To test your "reality," ask your trainer to take the full 76 item "reality versus rhetoric" test. XI. Bibliography about the Independent Living and Disability Rights Movement Books No Pity, Joe Shapiro, 1993 Monographs and Articles "Challenges of Emerging Leadership: Community Based Independent Living Programs and The Disability Rights Movement," The Institute for Educational Leadership, publisher, funded by a grant from the Mott Foundation (#81-332), a report of a "leadership conference" held in August, 1982. Addresses unavailable, but suggests contacting Mott Foundation in Lansing, Michigan. "Consumer Control in Independent Living," M. Shreve, P. Spiller, E. Griffin, N. Waldron and L. Stolzman, Center for Resource Management, Route 150 at Highland Road, South Hampton, NH 03847. The monograph, "The Independent Living Service Model" is also available from CRM. "Independent Living: Preparing for the 21st Century," report of a national conference held in Oakland, CA, October, 1991; published by CIL, Berkeley, 2539 Telegraph Avenue, Berkeley, CA 94704, 1992. "A People's History of Independent Living," Chava Willig Levy, Research & Training Center on Independent Living, University of Kansas, 66045 "Toward Independence: An Assessment of Federal Laws and Program Affecting Persons with Disabilities - With Legislative Recommendations," February, 1986, National Council on the Handicapped [now the National Council on Disability]. Can be obtained through the Superintendent of Documents, U.S. Government Printing Office, Washington, D.C. 20402, Stock Number 052-003-01022-4. AND "On the Threshold of Independence: A Report to the President and the Congress of the United States," January, 1988, National Council on the Handicapped [now the National Council on Disability]. Can be obtained from NCD, 800 Independence Avenue, S.W., Suite 814, Washington, D.C. 20591 (202/267-3846). "Environmental Accessibility and Independent Living Outcomes: Directions for Disability Policy and Research," Gerben DeJong, June, 1981, published in collaboration with the University Center for International Rehabilitation, Michigan State University, East Lansing, MI "Physical Disability and Public Policy," Gerben DeJong, Scientific American, June, 1983, Vol. 248, No. 6, pp. 40 - 49 "The Movement for Independent Living: Origins, Ideology and Implications for Disability Research" Gerben DeJong, March, 1979, may be available from the University Center for International Rehabilitation cited above. Periodicals The Disability Rag, a bi-monthly publication reflecting ideas and discussions in the disability rights movement, available at $12 for a one year subscription. Write to: Subscriptions, The Disability Rag, Box 6453, Syracuse, NY 13217 This Brain Has a Mouth, another bi-monthly publication started by a head injury survivors group and published out of Rochester, NY. Write to: This Brain Has A Mouth, Inc., 61 Brighton Street, Rochester, NY 14607 Attitudes About and Values Toward Disability: A Self-Assessment Each statement below makes an assumption or assumptions about people with a wide variety of disabilities. You are asked if you agree or disagree with the assumptions implied by each statement. After you have completed this tool, you will be discussing your responses with others in a small group. Your small group discussion will analyze the assumptions made by each statement and whether or not these assumptions are valid or have been proven in fact. Assess your attitudes and values about disability by circling the number in each scale that reflects your feelings and thinking. Small group results will help us decide which values are critical to developing an independent living philosophy statement. BE HONEST! Make notes or write your questions on the right hand side of each page. Notes for Discussion 1. Most people with significant disabilities cannot live independently. 1------------ 2 ---------- 3 ---------- 4 ---------- 5 ---------- 6 ----------- 7 Strongly Strongly disagree agree 2. Most people with disabilities have low self-esteem. 1------------ 2 ---------- 3 ---------- 4 ---------- 5 ---------- 6 ----------- 7 Strongly Strongly disagree agree 3. People with disabilities are a blessing or a gift from God who show us how to cope with life's difficulties here on earth. 1------------ 2 ---------- 3 ---------- 4 ---------- 5 ---------- 6 ----------- 7 Strongly Strongly disagree agree 4. People with disabilities deserve as much sympathy, empathy and support as society can give. 1------------ 2 ---------- 3 ---------- 4 ---------- 5 ---------- 6 ----------- 7 Strongly Strongly disagree agree 5. If someone with a significant disability chooses suicide because he/she has no autonomy and cannot live a quality life, we should support him or her. 1------------ 2 ---------- 3 ---------- 4 ---------- 5 ---------- 6 ----------- 7 Strongly Strongly disagree agree 6. Families with disabled members face far more physical, mental, emotional, and financial strains than families without disabled members. 1------------ 2 ---------- 3 ---------- 4 ---------- 5 ---------- 6 ----------- 7 Strongly Strongly disagree agree 7. Parents of newborn babies with significant medical problems or disabilities have the right to withhold medical treatment from their infants, letting nature take its course. 1------------ 2 ---------- 3 ---------- 4 ---------- 5 ---------- 6 ----------- 7 Strongly Strongly disagree agree 8. People with disabilities have the same aspirations, dreams, desires and needs as anyone else. 1------------ 2 ---------- 3 ---------- 4 ---------- 5 ---------- 6 ----------- 7 Strongly Strongly disagree agree 9. One of the worst problems facing people with disabilities is the attitudes of others about disability. 1------------ 2 ---------- 3 ---------- 4 ---------- 5 ---------- 6 ----------- 7 Strongly Strongly disagree agree 10. People with disabilities deserve support, but not at the expense of the American taxpayer. 1------------ 2 ---------- 3 ---------- 4 ---------- 5 ---------- 6 ----------- 7 Strongly Strongly disagree agree 11. Compliance with the Americans with Disabilities Act is costly and generally unreasonable, given the few people with disabilities in the total population. 1------------ 2 ---------- 3 ---------- 4 ---------- 5 ---------- 6 ----------- 7 Strongly Strongly disagree agree 12. Most people with disabilities get their specific disability-related needs met through medically-oriented services and programs. 1------------ 2 ---------- 3 ---------- 4 ---------- 5 ---------- 6 ----------- 7 Strongly Strongly disagree agree 13. Being 75% or more disabled means that you cannot work. 1------------ 2 ---------- 3 ---------- 4 ---------- 5 ---------- 6 ----------- 7 Strongly Strongly disagree agree 14. Sheltered workshops are necessary because they help people with very severe disabilities learn about work. 1------------ 2 ---------- 3 ---------- 4 ---------- 5 ---------- 6 ----------- 7 Strongly Strongly disagree agree 15. Supported employment programs are great because they provide people with disabilities with special job coaches; without job coaches, these individuals would not be able to work in a competitive setting. 1------------ 2 ---------- 3 ---------- 4 ---------- 5 ---------- 6 ----------- 7 Strongly Strongly disagree agree 16. People with disabilities should be expected to take risks, make mistakes, and compete with others...just like everyone else. 1------------ 2 ---------- 3 ---------- 4 ---------- 5 ---------- 6 ----------- 7 Strongly Strongly disagree agree 17. Reasonable accommodations for a qualified employee with a disability are generally a minor expense in relation to the quality and productivity received from the worker. 1------------ 2 ---------- 3 ---------- 4 ---------- 5 ---------- 6 ----------- 7 Strongly Strongly disagree agree 18. I would hire someone with a disability who was qualified for a job, even if I had to make reasonable accommodations for the individual. 1------------ 2 ---------- 3 ---------- 4 ---------- 5 ---------- 6 ----------- 7 Strongly Strongly disagree agree 19. It would be difficult to fire someone with a disability from a job. 1------------ 2 ---------- 3 ---------- 4 ---------- 5 ---------- 6 ----------- 7 Strongly Strongly disagree agree 20. People with disabilities should not have sex or procreate (have children); they could have children with disabilities or, at the very least, their children with have a difficult childhood. 1------------ 2 ---------- 3 ---------- 4 ---------- 5 ---------- 6 ----------- 7 Strongly Strongly disagree agree 21. It is truly inspiring to see how some people with disabilities overcome their disabilities to achieve major goals. 1------------ 2 ---------- 3 ---------- 4 ---------- 5 ---------- 6 ----------- 7 Strongly Strongly disagree agree 22. People with disabilities need love and attention from family members and others. 1------------ 2 ---------- 3 ---------- 4 ---------- 5 ---------- 6 ----------- 7 Strongly Strongly disagree agree 23. Some people with disabilities get awards, recognition, or jobs only because they have disabilities. 1------------ 2 ---------- 3 ---------- 4 ---------- 5 ---------- 6 ----------- 7 Strongly Strongly disagree agree 24. People with disabilities have been treated like second class citizens for too long now. 1------------ 2 ---------- 3 ---------- 4 ---------- 5 ---------- 6 ----------- 7 Strongly Strongly disagree agree 25. All social service and advocacy programs, including social security and related benefits, should focus their attention on making this an accessible society in which to live, work, and play. 1------------ 2 ---------- 3 ---------- 4 ---------- 5 ---------- 6 ----------- 7 Strongly Strongly disagree agree 26. People with disabilities are a distinct and diverse minority group which are creating a disability culture and politic. 1------------ 2 ---------- 3 ---------- 4 ---------- 5 ---------- 6 ----------- 7 Strongly Strongly disagree agree 27. People with disabilities can do almost anything that non-disabled people do (unless it is a specific task specifically related to their disability such as, blind people cannot drive) -- they just do it differently. 1------------ 2 ---------- 3 ---------- 4 ---------- 5 ---------- 6 ----------- 7 Strongly Strongly disagree agree 28. People with disabilities often need the advice and guidance of specialized professionals to help them live a quality life. 1------------ 2 ---------- 3 ---------- 4 ---------- 5 ---------- 6 ----------- 7 Strongly Strongly disagree agree 29. People with disabilities are more comfortable around their own kind. 1------------ 2 ---------- 3 ---------- 4 ---------- 5 ---------- 6 ----------- 7 Strongly Strongly disagree agree 30. Housing which is a affordable and accessible to people with disabilities is best located in one building where all necessary non-medical services and personal needs can be met easily and cost-efficiently. 1------------ 2 ---------- 3 ---------- 4 ---------- 5 ---------- 6 ----------- 7 Strongly Strongly disagree agree 31. Special education helps children with disabilities learn along side non-disabled children in public education settings. 1------------ 2 ---------- 3 ---------- 4 ---------- 5 ---------- 6 ----------- 7 Strongly Strongly disagree agree 32. People with disabilities face enormous personal struggles to overcome negative attitudes and compete with others for work. 1------------ 2 ---------- 3 ---------- 4 ---------- 5 ---------- 6 ----------- 7 Strongly Strongly disagree agree 33. Most people with disabilities who are filing suit under the Americans with Disabilities Act (ADA) are people with back injuries who are trying to get more than their fair share of workers' compensation benefits. 1------------ 2 ---------- 3 ---------- 4 ---------- 5 ---------- 6 ----------- 7 Strongly Strongly disagree agree 34. People who are blind have nothing in common with people who are deaf, physically or cognitively disabled. 1------------ 2 ---------- 3 ---------- 4 ---------- 5 ---------- 6 ----------- 7 Strongly Strongly disagree agree 35. If people with disabilities could gain access to assistive technology, they would live higher quality lives. 1------------ 2 ---------- 3 ---------- 4 ---------- 5 ---------- 6 ----------- 7 Strongly Strongly disagree agree 36. People with disabilities generally are not skilled enough to work competitively. 1------------ 2 ---------- 3 ---------- 4 ---------- 5 ---------- 6 ----------- 7 Strongly Strongly disagree agree 37. If we allow people with disabilities full access to health care and medical insurance, especially long-term care, our nation's medical costs will greatly increase. 1------------ 2 ---------- 3 ---------- 4 ---------- 5 ---------- 6 ----------- 7 Strongly Strongly disagree agree 38. Many people with disabilities abuse accessible parking laws by allowing non-disabled people to drive their vehicles or use their placards to park in reserved, accessible spaces. 1------------ 2 ---------- 3 ---------- 4 ---------- 5 ---------- 6 ----------- 7 Strongly Strongly disagree agree 39. People with disabilities are always asking for more and more special favors. 1------------ 2 ---------- 3 ---------- 4 ---------- 5 ---------- 6 ----------- 7 Strongly Strongly disagree agree 40. If a person with a disability needed help with anything, he or she should be able to get what they need from a special organization set up to help people with his or her specific type of disability. 1------------ 2 ---------- 3 ---------- 4 ---------- 5 ---------- 6 ----------- 7 Strongly Strongly disagree agree Myths and Misconceptions About Independent Living Philosophy Mark each statement with a T for true if you think the statement is true or a F for false if you think the statement is false. If you cannot decide whether the statement is true or false OR if you think it is both true and false, then mark the statement with an *. Think carefully and deeply about each statement before you respond. Make any notes or questions you have about a statement on the right hand side of each page. Your Notes: _____ 1. Independent living is a service delivery system designed to enable someone with a severe disability to live as independently as possible. _____ 2. The independent living philosophy is a collection of key values, principles, attitudes and behaviors related to how services should be provided so that people with disabilities live independent, integrated, and full lives. _____ 3. One of the primary principles of the independent living philosophy is "consumer control." _____ 4. Independent living would not be possible without federal funding support from Title VII of the Rehabilitation Act. _____ 5. In order to be eligible for independent living services, a person must be able to prove that s/he has a severe disability which limits her/his ability to function independently in the family or community or to gain, maintain or advance in employment. _____ 6. Independent living services were created by the Rehabilitation Act of 1973, as amended in 1978, to help people whose disabilities are so severe that they could not benefit from the basic vocational rehabilitation program. _____ 7. If an organization is "consumer-controlled," a majority of its board of directors and a majority of its staff are people with disabilities. _____ 8. Centers for independent living were created with funds from the federal Rehabilitation Act for the sole purpose of providing services to people with severe disabilities. _____ 9. Centers for independent living develop policies and procedures based upon the ideals of the independent living philosophy which was built upon the principles of the civil rights movement, self-help, and peer role models, "consumerism" (as practiced by consumer advocates like Ralph Nader), deinstitutionalization and de-medicalization. _____ 10. Centers do not use medical model, social work or professional service provider practices in their work with people who have disabilities. _____ 11. The primary activity and focus of a center practicing independent living philosophy is systems or social change. _____ 12. The mission and purpose of a center practicing independent living philosophy is to eliminate attitudinal, architectural and communication barriers to full integration of people with disabilities. _____ 13. The independent living philosophy is rooted in "consumer choice" which means that centers and service providers must assist and support the choices individuals with disabilities -- even if it means moving into a nursing home. _____ 14. Independent living means having control over your own life and being able to make decisions about life, work and play in the same ways that people without disabilities do. _____ 15. As funded by the Rehabilitation Act, one of the most important features of independent living services is the development of an individual's independent living plan. _____ 16. According to the Rehab Act, Independent living services always include an intake, assessment, determine of eligibility, independent living plan, maintenance of the consumer's service record, and evaluation based upon goals set and goals achieved. _____ 17. If a center receives Title VII Part C funding through the Rehab Act and center staff are unsure about a particular individual's disability and its effects on daily living, they secure a release of information from the consumer and obtains copies of medical records, diagnostics, and/or social history files from agencies serving that consumer. _____ 18. If an individual with a disability doesn't cooperate with center or service provider staff on a signed independent living plan, then services may be discontinued and that consumer's case may be closed as "uncooperative." _____ 19. Center and service provider staff must document their work in consumer case files in the event that a federal or state program audit is conducted. _____ 20. In keeping with independent living philosophy and according to the Rehab Act, consumers of independent living services must be notified of and told how they may contact the state's client assistance program (CAP) if they are dissatisfied with services, service decisions, or policies of providers. _____ 21. The independent living philosophy is built upon commonly understood definitions of civil rights, social justice and equality of opportunity and participation in society. _____ 22. Independent living philosophy is difficult to practice because of traditional and long-held views and attitudes towards people with disabilities. _____ 23. A "systems or social change" approach means that the problems associated with disabilities are presumed to be located in the environments, systems or society that already exist...not in the person with a disability. _____ 24. To be true to the independent living philosophy in practice, one would never treat a person with a disability any differently than someone without a disability. _____ 25. If the independent living movement has struggled or failed to make its philosophy known and understood, it may be because centers, leaders and advocates have not known how to educate others about it. _____ 26. Independent living services are different from traditional medical, rehabilitation, or charitable social services only because they are provided by people with disabilities. _____ 27. The truest measure of success for people with disabilities living independently is how much control they have over their lives and how satisfied they are with the quality of their lives. _____ 28. If all centers and service providers practiced the independent living philosophy, people with disabilities would have more control over their lives and over the organizations, programs, and services in which they have a stake. _____ 29. On a personal level, practicing the independent living philosophy means being assertive about what you want and advocating for systems and social change so that negative, medical model, and charitable attitudes about disabilities are eliminated. _____ 30. Consumer control means that you, the "consumer" of services or products, have complete freedom and control over living in the community and style of your choice. Myths and Misconceptions About Independent Living Philosophy Maggie Shreve's Opinions and Answers F 1. Independent living is a service delivery system designed to enable someone with a severe disability to live as independently as possible. Independent living is a way of thinking about life which may involve services but which may not. It is being able to control your life, advocating for yourself, or knowing how to get support from others to do what you want and/or need to do. Many people with significant disabilities live independently without on-going support services. T 2. The independent living philosophy is a collection of key values, principles, attitudes and behaviors necessary for people with disabilities to live independent, integrated, and full lives. Any philosophy is a collection of key values, principles, attitudes and behaviors, including the independent living philosophy. The problem associated with independent living philosophy across centers and the nation's human service delivery system is that it is not understood and, therefore, is not practiced. T 3. One of the primary principles of the independent living philosophy is "consumer control." "Consumer control" is at the heart of independent living in every way. The individual with a disability MUST have control over his or her life and all decision-making. F 4. Independent living would not be possible without federal funding support under Title VII of the Rehabilitation Act. Independent living is a way of life. When considering funding for "independent living" concepts, there were several centers for independent living before federal funds were funneled into Title VII of the Rehabilitation Act. There have been people with significant disabilities living independently long before there were centers. Federal funds were designed to make living independently easier through better support mechanisms, but even this is questionable given the practice of many centers and service providers across the nation today. F 5. In order to be eligible for independent living services, a person must be able to prove that s/he has a severe disability which limits her/his ability to function independently in the family or community or to gain, maintain or advance in employment. When talking about programs and services under Title VII of the Rehabilitation Act Amendments of 1992, many believe that people with disabilities must prove they are eligible. Yet, centers are expected to serve anyone and everyone with information and referral services (I&R). The other three core services (advocacy -- both individual and systems, independent living skills training, and peer counseling) may be provided to individuals who meet the federal definition of someone with a "significant disability." But this too, can be easily handled by asking the individual with the disability to make a determination of whether or not they meet the federal definition. F 6. Independent living services were created by the Rehabilitation Act of 1973, as amended in 1978, to help people whose disabilities are so severe that they could not benefit from the basic vocational rehabilitation program. The original intent of the Title VII amendments to the Rehabilitation Act in 1978 were to initiate centers and to provide services. Regulation and practice created the notion that a person determined "too severely disabled" for the vocational rehabilitation program under Title I would be eligible for services under Title VII. As of the amendments made in 1992, these distinctions have been totally removed from the Rehab Act. T 7. If an organization is "consumer-controlled," a majority of its board of directors and a majority of its staff are people with disabilities. The above is true, but consumer control should go beyond mere numbers. Consumer control should be a way of working, a way of thinking, a way of advocating for broad community and systems change. There are many organizations which have a majority of people with disabilities on their board of directors and hired as staff who do not practice consumer control in their programs or services. F 8. Centers for independent living were created with funds from the federal Rehabilitation Act for the sole purpose of providing services to people with severe disabilities. Like number 6 above, the 1978 amendments to the Rehabilitation Act were written to fund the establishment and operation of centers for independent living, but not for the sole purpose of providing services to individuals with disabilities. They were also created to act as catalysts for social and systems change. T 9. Centers for independent living develop policies and procedures based upon the ideals of the independent living philosophy which was built upon the principles of the civil rights movement, self-help, and peer role models, "consumerism" (as practiced by consumer advocates like Ralph Nader), deinstitutionalization and demedicalization. If centers are practicing the independent living philosophy, they have policies and procedures which support the principles of these five earlier social movements. The independent living movement is patterned after civil rights, self-help, consumerism, deinstitutionalization and demedicalization movements of the 1960s and 1970s. F 10. Centers do not use medical model, social work or professional service provider practices in their work with people who have disabilities. Centers often fall into the trap of "professionalizing" their staff, copying medical model, social work or charitable role models. While having degrees in medical fields, social work or other specialties are not, in and of themselves, barriers to working for a center for independent living, they should NOT be criteria FOR working at a center. T 11. The primary activity and focus of a center practicing independent living philosophy is systems or social change. An exemplary center -- one that practices the independent living philosophy daily and is known within the disability communities it serves as a leader in practicing the independent living philosophy -- would have systems and social change as its primary focus. Providing services to individuals with disabilities is simply a method for spreading the word about what this philosophy means and how it can change attitudes and values about living with disability. T 12. The mission and purpose of a center practicing independent living philosophy is to eliminate attitudinal, architectural and communication barriers to full integration of people with disabilities. These should be the foundations of a center for independent living. Like number 11 above, centers which practice the independent living philosophy and root their work in civil rights, consumerism, self-help, demedicalization and deinstitutionalization are working on the removal of barriers and promotion of full integration. F 13. The independent living philosophy is rooted in "consumer choice" which means that centers and service providers must assist and support the choices individuals with disabilities make -- even if it means moving into a nursing home. Centers advocate choice for individuals with disabilities OVER ACCEPTABLE OPTIONS. The problem with living with a disability in America today is that the options available are not acceptable. Whenever a person with a disability "chooses" to live in an environment where s/he has LESS CONTROL, this is not independent living. Centers should be highly visible agents of social change which do not accept institutionalization based upon the presence of a disability. If someone chooses to live in a nursing home, that may be fine for him or her but it is not appropriate for a center to help in making that move. There are hundreds, possibly thousands, of social service agencies which help people move to more dependent living arrangements. T 14. Independent living means having control over your own life and being able to make decisions about life, work and play in the same ways that people without disabilities do. This is exactly what "independent living" means. F 15. As funded by the Rehabilitation Act, one of the most important features of independent living services is the development of an individual's indepen-dent living plan. The 1992 amendments to the Rehabilitation Act make it perfectly clear that an indepen-dent living plan is not necessary if the individual with a disability believes it to be unnecessary. The independent living plan is not pivotal to the provision of independent living services. F 16. According to the Rehab Act, Independent living services always include an intake, assessment, determination of eligibility, independent living plan, maintenance of the consumer's service record, and evaluation based upon goals set and goals achieved. Completing "intakes," "assessments," "determinations of eligibility," "independent living plans," and the like are copies of the traditional medical model or social work method of case management. These are inappropriate for centers for independent living because they do not vest control in the individual with the disability. The center is responsible for documenting work done with individuals, but it is not responsible for using the same methods as all the service providers use. Centers were created to be different from service providers -- not the same. F 17. If a center receives Title VII Part C funding through the Rehab Act and center staff are unsure about a particular individual's disability and its effects on daily living, they secure a release of information from the consumer and obtains copies of medical records, diagnostics, and/or social history files from agencies serving that consumer. If someone with a disability comes to a center, declares that s/he meets the federal definition of someone with a significant disability and wants independent living services, this should be sufficient for center staff. Only if the person will not identify what her/his disability is should any additional information be needed. In the event that the person will not reveal this information or does not know this information, the center staff can assist the person to get information from other providers...but the information should go back to the consumer, not to the center. Centers have no need for such material in a consumer's service record, but perhaps the consumer her/himself would benefit from knowing what exists elsewhere. F 18. If an individual with a disability doesn't cooperate with center or service provider staff on a signed independent living plan, then services may be discontinued and that consumer's case may be closed as "uncooperative." Center staff should seriously question why any individual consumer is not involved in following through with a plan s/he developed for her/himself. It makes me wonder if, in fact, the plan was the consumer's in the first place -- perhaps it was the staff member's? But if a consumer is no longer interested in pursing her/his own plan, then the center can simply move that person's name from one statistical list to another. Centers do not need to "close" files at all. F 19. Center and service provider staff must document their work in consumer case files in the event that a federal or state program audit is conducted. Centers do not maintain "case files." They keep consumer service records to prove that they provided services to specific individuals. A federal or state audit would examine these records, so they must be kept. Centers should not, however, think of them as "case files" or staff may fall into the trap of thinking of themselves as "case managers." T 20. In keeping with independent living philosophy and according to the Rehab Act, consumers of independent living services must be notified of and told how they may contact the state's client assistance program (CAP) if they are dissatisfied with services, service decisions, or policies of providers. Anyone receiving services from funding through the Rehabilitation Act must be informed about and how to contact their state's client assistance program. This is in keeping with the "consumer control" principle of independent living philosophy. An informed "con-sumer" makes the best choices for him/herself. An informed "consumer" should be involved in a center's operations, plans, and structure in capacities other than that of "a consumer." T 21. The independent living philosophy is built upon commonly understood definitions of civil rights, social justice, personal responsibility, and equality of opportunity and participation in society. Like earlier statements on philosophy, independent living is a campaign cry for equal rights and integration. Combined with the group call for justice is a demand for personal responsibility on the part of individuals with disabilities. After all, it is individuals with disabilities and their advocates who are responsible for enforcement of all federal civil rights laws providing protection from discrimination. While these principles are commonly understood in racial, minority, gender and age discrimination cases, they are not well understood among people with disabilities. One of the most critical roles of a center is to promote that understanding among people with disabilities and the public. T 22. Independent living philosophy is difficult to practice because of traditional and long-held views and attitudes towards people with disabilities. Attitudes about and values toward people with disabilities have developed over thousands of years of recorded history. Changing the negative ones is the principle job of the independent living movement. This will not happen overnight, but it will happen more quickly if centers practice independent living philosophy well. T 23. A "systems or social change" approach means that the problems associated with disabilities are presumed to be located in the environments, systems or society that already exist...not in the person with a disability. True. Centers should take a "systems-wide" approach to resolving disability-related problems rather than a "fix the person" approach. The "fix the person approach" stems from the medical model and is pervasive within the entire field of human services for people with disabilities. Centers should be different. T 24. To be true to the independent living philosophy in practice, "customer satisfaction" behavior has to be understood and practiced (i.e. one would never treat a "customer" with a disability any differently than a "customer" without a disability or any differently than you personally would want to be treated). Most people who work in centers would never complete all the paperwork required if their own lives were in question. Centers must examine everything they do -- from how the telephone is answered to how people are treated when the necessary paperwork is being done -- to determine if they are treating people with dignity, honor, and respect. Centers which think of themselves as professional service providers are generally not treating people with disabilities the way non-disabled people would be treated. T 25. If the independent living movement has struggled or failed to make its philosophy known and understood, it may be because centers, leaders and advocates have not known how to educate others about it. My own personal observation about the lack of understanding of philosophy is rooted in the problem of how to educate and train others in something which is just evolving now. Frankly, many people may have some good ideas but they may not be able to effectively educate others about them because they do not yet have these educational skills. This should be a primary task of our movement's leaders -- learn how to train others effectively, train your own staff and board members, train people with disabilities, and then work on how to educate the rest of the community. F 26. Independent living services are different from traditional medical, rehabilitation, or charitable social services only because they are provided by people with disabilities. Unfortunately, too many centers are providing traditional medical model, rehabilitation or charitable social services -- even though the staff are people with disabilities. When I ask center staff "How are you different?," this is the most typical answer I receive. Just having people with disabilities in staff and board positions is no guarantee that independent living philosophy will be believed or practiced. Centers must go further. They must provide their services differently, act differently, be different in attitude and approach. Only then, will people with disabilities who are still oppressed and living in dependent situations begin to understand their personal and collective power to change. T 27. The truest measure of success for people with disabilities living independently is how much control they have over their lives and how satisfied they are with the quality of their lives. If centers are truly making a difference in their communities and in the lives of the people they serve, then success would be that people with disabilities have control over their lives and are happy with the way they are living those lives. So far, I have not seen one center which measures its own success based upon these criteria. I think it is because we don't know how -- which is fine -- but the time has come to work on figuring that out and putting it in place in all of our centers. T 28. If all centers and service providers practiced the independent living philosophy, people with disabilities would have more control over their lives and over the organizations, programs, and services in which they have a stake. If everyone understood independent living philosophy, then people with disabilities would be taking on stronger and stronger roles. They would be on boards of directors, running for public office, joining the PTA, advocating for accessible polling places, becoming staff or directors of programs and services, etc. Too many people are afraid of what consumer control means. Too many "professionals" think that people with disabilities do not know what is really best "for them." When people with disabilities assume the role of assertive consumer and ask professionals or specialists for the information or help they need when they decide they need it, they still run into defensive and hostile attitudes from many professionals. Only through self-help and peer support will people with disabilities be able to change this reaction and, ultimately, change the very nature of the organizations established to serve people with disabilities. T 29. On a personal level, practicing the independent living philosophy means being assertive about what you want and advocating for systems and social change so that negative, medical model, and charitable attitudes about disabilities are eliminated. As friend and fellow disability rights advocate/consultant June Isaacson Kailes puts it, an assertive person who seeks systems and social change is the real "disability hero." If each of us worried less about controlling others and worried only about being assertive in our own lives, the world would be a saner place. People with disabilities have been told what to do, how to do it, when to do it and where to do it for so long that becoming assertive seems next to impossible. Center staff should be totally supportive of all assertive behavior, encouraging its expression at all times. Being assertive and not caring about what others think is what will eventually change the negative attitudes and values we have inherited. T 30. Consumer control means that you, the "consumer" of services or products, have complete freedom and control over living in the community and style of your choice. True again. If people with disabilities have true control over their lives, then they can go where they want, when they want and with whom they want at any time. The world would be an accessible place for everyone. Anyone who can breathe and move one digit, as Lou Brown (academic advocate for people with developmental disabilities at the University of Wisconsin-Madison) would say, would be working at competitive wage jobs. And there would be adequate support services, such as personal assistance and assistive technology, available at low cost or no cost depending upon the income level of the individual with the disability. If these things were in place, everyone would have freedom to live where they want and in the lifestyle they want...the ultimate goal of the independent living movement. Independent Living Philosophy: Stop Action Skit This skit requires three different actors. The skit can be stopped at the end of each scene OR at any time by any member of the audience who thinks that an issue related to the practice of independent living philosophy has been demonstrated. When the skit is stopped, the facilitator asks any of a series of questions to generate discussion about that portion of the skit witnessed so far. The roles required are: LEE A staff member of a center for independent living who provides services to individuals with significant disabilities. KIM A person with a significant disability who is seeking some assistance from the center to move from parents' home to own home. SAL Lee's supervisor at the center for independent living. Setting: The entire skit takes place within a center for independent living's offices over a two month period. Some scenes are in Lee's office and some are in Sal's office. The time period will be marked each time the skit moves forward in time. -------------------------------------------------------------------------------------------- Scene 1 Facilitator: It is a nice day in March, 1993. We are watching Lee and Kim meeting each other for the first time in Lee's office. Lee Hello, Kim. It is nice to meet you. I'm glad that you could come to the office today to complete this intake I have to do. Please ... make yourself comfortable. Kim I'm not really sure what you mean by an intake. I hope I have all the information you need. Lee Well, don't worry. Any information we don't gather today, I'm sure we can get it soon. Let me explain our intake process to you, OK? Kim OK. Lee When you come to a center for independent living -- which is what we are here -- you must be determined eligible for the services we provide according to federal law. We receive funding from the federal government and it has strict requirements for who can be served. So, to make sure that you are eligible for what we offer, we complete an "intake" form. It's sort of like an application. It answers all the questions we need to have on file in case a federal employee comes to audit our program. Is that clear? Kim Sure, I guess. Lee OK. Let's get started. What is your full name? Kim Kim H. Wallace. I have no middle name, just an initial. Lee And where do you live? Kim [Give your own address...or] 1523 West Edgewater, here in Chicago. The zipcode is 60660. Lee What is your telephone number? Kim 312/989-4385 [or give your own]. Lee Now I need your social security number and Medicaid or Medicare numbers if you have them. Kim 123-45-6789 [or give your own]. I don't know my Medicaid number off the top of my head. Why do you need these numbers? Lee The federal government requires that we get these numbers. I'm not sure why. Kim Well, maybe we ought to talk a little bit more about what kind of service you provide before we go any further. This is getting a little too personal for me. Lee Oh, I'm sorry. I usually explain our services before I do the intake. Sure. Let me explain how we work. We are a center for independent living, which means we help people with disabilities become independent. When you come to us for service, we find out what you want to do with your life -- what your goals for independence are -- and then we help you achieve them. The paperwork we have to do is really just to support the nature of our service relationship. After the intake is complete, then you and I will talk about your independent living goals. When we think we have established reasonable goals for you, then I write them up into an "independent living plan." If you are satisfied with this plan, then it becomes the basis for our work together. Is that clear? Kim I guess so. But what do you do, exactly? I mean I want to move out of my parents' home and I need help to do that. Do you help me find a place and get enough money to live on my own? A vocational rehabilitation counselor told me that you provide rehabilitation services for people who don't have vocational goals. Is that right? Lee Well, sort of. Many people with severe disabilities haven't been eligible for the vocational rehabilitation program because their disabilities were so severe. But the independent living program helps them through centers like ours, whether they have a vocational goal or not. Some of the people who come here have vocational goals and some don't. Many of our clients are pretty severely disabled and probably would have a difficult time getting a job in the competitive world. So, in some ways, your voc. rehab. counselor is right. Are you getting services from the state voc. rehab. agency now? Kim I'm not sure. I have seen this one counselor, but only once. He did an "intake" too and said he wasn't sure they could help me. I thought that is why he referred me to you. Lee That's OK. We can check on that later. What's important is that you have an independent living goal. It sounds like you do if you want to move out of your parents' home, right? Kim Yes. But what do YOU do for me? Lee What I do is show you how to do things for yourself. We have independent living skills training classes here at the center where you can learn to do many things for yourself. We also have peer counselors who can work with you when you want to discuss emotional issues like coping with your disability and stuff like that. You can call here at any time during our business hours for what we call information and referral. That means that you call with a question and we answer the question with information from our library or we refer you to someone else who may be able to answer the question. And we do advocacy, meaning that if you need our help as an organization to resolve a problem -- like let's say a landlord refuses to rent you an apartment that you can afford and you think it is because you have a disability -- then we would help you file a complaint with the U.S. Department of Housing and Urban Development ... if you wanted to do that. Kim Well, it all sounds good, but I'm still confused about how you do things. Lee Maybe it would be easier if you just thought of me as your case manager. You have had a case manager before, haven't you? Kim Yes, I had one when I was in school and I have one at the recreation program I attend. Lee OK...just think of me like you think of them. I help you find the resources you need to do the things you want to do. Sometimes I will make calls for you and sometimes I will simply show you how to make a call for yourself. We can meet whenever and wherever you want ... within reason of course! Kim OK. I think I get it now. Lee Good. Now, let's get back to that intake. -------------------------------------------------------------------------------------------- Scene 2 Facilitator: It is now a week later and Lee is meeting with Sal in Sal's office. Sal So let's go over your intakes from last month. Anything interesting or unusual? Lee Well, I had a few referrals from VR who didn't know why they were coming to see us -- AGAIN! You know, I'm getting really tired of this. The VR staff knows what we do, don't they? I feel like I waste a lot of time just explaining what our services are to new clients when I think they should already know what we do if they were referred by another professional. Sal Hmmmm. Maybe we need to increase our outreach efforts. Let's be sure and talk about this at the next full services staff meeting. So how many ILPs did you complete? Lee For the whole month, I had 40 ILPs. Of course, I haven't seen many of them but once or twice. You know I'm up to 100 on my caseload now and it's getting tougher and tougher to write out those plans. Isn't there some way we could ease up on some of the paperwork? Sal Not that I can see. Even with the new Rehab Act, the feds seem to want a lot and so does the state. I think the Executive Director is working on that through the state association. But I'm glad you brought that up. I'll talk with the Executive Director about it shortly and get back to you when there is some news. So, anything else on your mind these days? Lee Actually, yes. I had new client last week, Kim Wallace. Kim seemed pretty naive -- like a lot of those VR referrals. What struck me about Kim that was kind of different from most others I see is that she/he was reluctant to give out personal information like social security number and stuff like that. She/he didn't want to sign the independent living plan either until I told her/him that we couldn't provide services until that was done. Sal It could be that Kim has had some problems elsewhere. Did you explain how we were different from other service agencies because of the independent living philosophy? Lee I tried to, but I don't think she/he got it. Maybe Kim is retarded too and we just don't know it. Sal Well, then why don't you ask for her/his records from some other agencies. You did get information about where else Kim has been, didn't you? Lee Sure. I simply forgot to ask Kim for a release. I'll do it when I see her/him next time. Thanks. I really don't have any other news. Anything new on the salary increases? Sal Nope. I guess the Finance Committee is still working on the budget with the Executive Director. Believe me, if anything changes, I'll let you know. --------------------------------------------------------------------------------------------Scene 3 Facilitator: We are back in Lee's office now. Lee is asking Kim to sign a release of information so that the center can gain copies of Kim's files from other agencies. Kim I just don't understand why you need this information. I signed the independent living plan. We have agreed on the goals I'm trying to achieve. What does other agency information matter? Lee It's a matter of professional protocol, if nothing else. How can I help you if I don't know what you've been through with other agencies? Maybe you have disabilities we haven't discussed and those will affect how successful you can be. I know that additional information will help me work with you more effectively. Kim I can tell you right now that I didn't like those other agencies. I always felt like I was being patronized. Lee Patronized? That's a mighty accusation. You think the staff of these agencies were treating you like a child? Is that what you mean? Kim Yes. That is exactly what I mean. [Getting more emotional...] I may be disabled, but I'm not stupid. I want to live my life like other people do, but if I have to keep going to these "special" agencies, I don't think I'll ever get there. Lee Whoa, now! Don't get all worked up about this. We can work something out. Let me think for a moment. [Pausing, thinking] How about if YOU request a copy of your records and then we can go over them together here in the office? Kim [Pausing, thinking this offer over first...] Ummm. Maybe I would like to see what those records say. Yes, maybe that will be all right. Lee You know some case file information may be too confidential for you to see. I know there are certain service agencies who withhold information from their clients because the information can be harmful to the client or the client's progress. So, don't assume we will get everything we want. Kim What could possibly be harmful to me? Lee Oh, you know. Stuff like psychological exam results or diagnostic reports. Sometimes they are hard to read if they are about you. Kim But shouldn't I know what's in those files about me. It's my life, isn't it? Lee Sure it is. Let's just complete this release form and have them send what they will to you, care of the center's address. Then I'll call you when they come in and we can go over them together. OK? Kim I guess. -------------------------------------------------------------------------------------------- Scene 4 Facilitator: It is now six weeks later. Certain file contents about Kim have come into the office and Lee is reviewing them with Sal. Lee Look here. It says that Kim is unmanageable and manipulative. The psychologist thinks there may even be some pathology to Kim's behavior but the family wouldn't let him do any more testing. What do you suppose that means? Sal It could mean lots of things. It's hard to say without more detailed notes. But you can confirm the unmanageable description, can't you? Maybe Kim isn't ready for independent living. It almost sounds like she/he has a big chip on the shoulder. Maybe moving to an apartment is biting off more than Kim can chew right now. How well do you think Kim gets along with other people? Have you watched her/him interact in a skills training class or in a support group? Lee Kim does seem awfully defensive with other people. Kind of angry all the time. I'm not sure where it is coming from, but Kim is not real friendly. Sal Well, then, maybe you should look at some social skills development. Maybe you should meet with the voc rehab counselor to see what the status is there and talk with him or her about the skills training Kim needs. You know ... as of April 1st, VR is paying us $60 per hour for skills training if it is written into the client's IWRP. Kim might be a likely candidate for such fees if you can convince the VR counselor that Kim needs it. Lee Good idea. I think I'll call Alex over at the local VR office. What should I do with the rest of these copies from Kim's files? Sal Well, I'm not sure Kim needs to see most of this. Why don't you simply remove those pages which seem to indicate problem areas and leave in the information which is pretty neutral. Share the neutral information with Kim and file away the rest of it. Lee OK. I hope Kim doesn't ask about it, though. I will feel pretty badly if I'm forced to lie about what came in to us. Sal Don't worry about it. Kim will be anxious to read the stuff you do share. Lee OK, Sal, thanks. -------------------------------------------------------------------------------------------- Scene 5 Facilitator: We are back in Lee's office again. Kim has just reviewed the copied material that had been sent to the center and that Lee has decided to share. Kim is looking upset. Lee You don't look happy, Kim. What is it? Kim There's not much here, is there? And why was this opened? Wasn't it addressed to me in care of the center? Lee Oh, I think it came to the center in both our names. That probably was a clerical screw up. I'm sorry. Did you want to see it first? Kim Well, I would have thought that something addressed to me should be opened by me, wouldn't you? Lee Yeah. I guess you're right. I'm sorry. Kim That's really not what's bothering me, though. I got a call from Alex Conrad, my VR counselor. He told me that you had recommended that I take skills training classes in social adjustment, pre-vocational skills, and other subjects. He said that if I would take these classes, he would finish up the eligibility requirements so I could enter the voc. rehab. program. Frankly, I don't think I need those classes and I can't understand why you would tell him I needed them without talking to me first. What happened to the goals in my independent living plan? Where are we going on that? Lee Listen, Kim, sometimes we see things that people need that doesn't go into their written plan. This was one of those things. I was talking to Alex about your case and suggested some skills training would be helpful. That's all. We offer them here, you know. You don't have to go anywhere else for these classes. Kim I don't care where the classes are! That's not the point! The point is that Alex is making me take these classes so that I can enter the voc rehab program. I have some ideas about employment I want to work on, but I don't like being told I have to do one thing before I get to do something else. It feels like I'm being held hostage to you two. Lee Oh come on now. It isn't that bad! How can a few classes hurt you? Why wouldn't you assume that they would help you? I know for a fact that the people who go through our classes are far more ready for independent living then those who just try to wing it. I think the VR counselors are beginning to realize the value of our classes too. Frankly, I'm flattered that Alex thought enough of our program that he recommended you take it before you begin working on an IWRP. Kim [Really mad now.] That's it! I've had it! You are just like all the others. All you care about is your program and if I fit into it. You don't care about me. You care about your funding and your professional status. I'll find my own apartment and get my own job! You and VR can go take a flying leap! [Kim leaves Lee's office in a huff.] Lee Oh shoot! Another "uncooperative" closure! [Lee looks at the audience in frustration and walks off]. INDEPENDENT LIVING PHILOSOPHY: REALITY VERSUS RHETORIC TEST [Editor's Note: This section originally contained a document co-authored by Maggie Shreve and June Isaacson Kailes which reflected their personal view of how the philosophy should be practiced. It was a self-analysis of how well a center for independent living practices independent living philosophy. Subsequently, the document was revised and updated in 1999 by Kailes and can be ordered from her at 6201 Ocean Front Walk, Suite 2, Playa del Rey, California 90293, or online at http://www.jik.com/resource.html and click on "Independent Living."] CASE STUDIES IN INDEPENDENT LIVING PHILOSOPHY The Age-Old Temptation You are a member of the board of a small, rural independent living center. The state health and welfare agency has asked your center to submit an application in response to a "request for bids" to serve people with HIV infection. The total value of the service contract is $150,000. People with HIV or AIDs are under-served in your service area. The board decided to target outreach to people with HIV or AIDS as part of its last long-term planning process. The purpose of t