Independent Living Philosophy and Misconceptions
Misconception: 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.
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.
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.
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. If an organization is "consumer-controlled," a majority of its board of directors and a majority of its staff are people with disabilities. 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.
Misconception: Independent living would not be possible without federal funding support from 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.
Misconception: 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.
Misconception: 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.
Misconception: 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.
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. If centers are practicing the independent living philosophy, they have policies and procedures which support the principles of these five earlier social movements. 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. 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.
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.
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.
Self-help is nothing new in the United States, but organized selfhelp 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.
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.
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 notfor- profit organizations providing both individualized services and systems advocacy.
Misconception: 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. 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.
Misconception: 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.
Misconception: 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.
The 1992 amendments to the Rehabilitation Act make it perfectly clear that an independent 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.
Misconception: 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.
Misconception: 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.
Misconception: 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 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.
Misconception: 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."
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 "consumer" 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."
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.
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.
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. 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.
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.
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. 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. 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.
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.
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.
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.
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.
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. 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.