History of Services
- Participants will be able to describe the history of services for, and perceptions of, people with developmental disabilities.
- Participants will be able to describe significant contributions of the Parent Movement.
- Participants will be able to describe the history of the Self-Advocacy and Independent Living Movements.
Why This Topic Is Important
The past is always with us. It shapes the present—how we think about issues and how we see people. We can’t make the past go away. We can, however, shape the future, and we need to take the past into account as we do so. Every day, what we do and don’t do makes a difference in shaping the future.
According to the United States' Congress (in PL.101-136: The Americans with Disabilities Act of 1990):
Historically, society has tended to isolate and segregate individuals with disabilities, and, despite some improvements, such forms of discrimination against individuals with disabilities continue to be a serious and pervasive social problem.
This history of discrimination, combined with the segregation of people with disabilities in “special” environments, caused people with disabilities to be separated from people without disabilities. Thus, many in the general public don’t know any people with disabilities. They don’t know what it’s like to be segregated and devalued, to be treated as “different,” to be denied access to ordinary opportunities that most people take for granted, and more.
Unfortunately, discrimination, isolation, and segregation—relics of the past—still exist in the 21st century! In order to make changes today, and for the long-term future, we need to understand history and how the past continues to influence the present.
We also need to develop visions of inclusion for all, what services for people with disabilities should look like, and what kind of communities we want. Learning from the past will help us move forward without repeating yesterday’s mistakes or ignoring the lessons of the past.
There have been dramatic changes in services and attitudes. Wolf Wolfensberger helped us understand that persons labeled with a developmental disability have been seen as sick, subhuman organisms, a menace, objects of pity, burdens of charity, and as holy innocents. In many ways, these perceptions are still with us.
Many people, as well as the service system, are beginning to recognize that each person is an individual with his or her own personality, likes and dislikes, strengths and needs, talents and weaknesses.
Wolfensberger notes three consequences of people being devalued:
- Devalued people are more apt to be rejected and treated in ways that diminish their dignity and their opportunities to develop a positive social role.
- Devaluation sanctions acceptance of poor treatment, social isolation, and discrimination against people who are viewed as being "different" in a way considered negative.
- How a person is perceived and treated by others will strongly influence the person's self-assessment and self-esteem and, subsequently, how the person thinks about himself/herself and how the person behaves.
At the same time, some progress is being made. Many people now see individuals with disabilities as people with potential and abilities, and as full citizens. Less and less, people with disabilities are seen as “all alike.” We don't hear, "They like to be with their own kind," as much as we once did. More often, people with disabilities are seen as “people, first,” instead of the label first.
Many ordinary people, as well as those in the service system, are beginning to recognize that each person who happens to have a disability is an individual with his or her own personality, likes and dislikes, and strengths and needs, just like people without disabilities.
The history of services and perceptions is one of change:
1850s to 1890s
Centralized services in institutions begin. The idea was first to train people to return to the community and then to protect people with disabilities from society. Training gave way to custodial care.
People with disabilities are segregated in institutions or “hidden” in their own homes. Laws are passed that forbid them from marrying, so they won’t create any of “their own kind.” Warehousing in institutions continues.
People with disabilities are sterilized so they will not have children; state laws permit this practice. Institutions do nothing about rehabilitation; warehousing, dehumanization, and stigmatization continue.
People with disabilities are the first to be put to death in Germany followed by six million Jewish people, criminals, "politicals,” gypsies, and people said to be antisocial.
The Arc is founded. There are 128,000 people in public institutions. Parents begin to create “community” services in church basements or vacant buildings. Parents are on their own; public funds are not available.
Parent organizations are now in 60+ countries. Most states offer special education in some form. There are 190,000 people in public institutions. A few institutional reforms begin. The U.S. President's Committee on Mental Retardation is formed. The civil rights of people with disabilities come into focus. The concept of "normalization" is introduced in Sweden.
Normalization is introduced to the United States. Decentralization and deinstitutionalization begin. Lawsuits against institutions are filed. Federal funds are available for residential care (ICF—Intermediate Care Facilities). The law and services recognize concepts such as: least restrictive environment, the developmental model, and behavior modification. The Self-Advocacy and Independent Living Movements are born.
The Home and Community Based Waiver is included in the Omnibus Budget Reconciliation Act. Family support and other cash subsidies emerge. Early intervention programs are mandated. The U.S. Supreme Court rules in favor of group homes in neighborhoods, and institutional closures and downsizing are on the increase. By 1986, there are fewer than 100,000 people with developmental disabilities in public institutions. Major strides are made in employment programs. Apartment living becomes more common. The goals of inclusion, choice, and self-advocacy are pursued with vigor.
By 1993, there are fewer than 80,000 people with developmental disabilities in public institutions, and fewer than 60,000 people by 1996. Some states are institution-free. Between 1996 and 1998 alone, 31 large state-run facilities for people with developmental disabilities are closed. An additional eight large state-run facilities are projected to close between 1999 and 2000.
The move from public care to private care continues. Families receive credit cards to purchase “units of service.” New community- and family-living amendments pass. States adopt supported living. The 14th Amendment is used to mandate deinstitutionalization in states that have been slow to move toward community- and family-based programs. Self-advocacy is commonplace and People First groups are consulted, along with The Arc, on developing advocacy and self-assertiveness programs for young adults in regular education classrooms. The Americans with Disabilities Act (ADA) ensures the "most integrated setting." Family members and people with disabilities are community leaders, become public officials, and set new policy directions.
The number of people with developmental disabilities living in public residential facilities or nursing homes continues to decline; more people are living in their own homes or smaller group homes (six or fewer people). However, the ideas of deinstitutionalization and inclusion remain controversial in some states; approximately 30,000 people with developmental disabilities remain in institutions; some facilities change their names (“supported living centers”). The work to close institutions is still unfinished.
The federal "New Freedom Initiative" focused on "removing barriers to community living for people of all ages with disabilities and long-term illnesses."
"Money Follows the Person" demonstration projects in several states allowed long-term support funding to follow the individual rather than be assigned to a place.
The "Independence Plus Initiative" made it easier for states to direct their own health care services. "Transitions from Institutions" allowed people with disabilities to use waivers to cover one-time expenses related to the transition to life in the community. Community First becomes a common expression in 2012.
A “menu” of support services offered greater independence to people with developmental disabilities. Waiting lists grow.
While more students with disabilities are being educated in general education classrooms, the National Council on Disability determined that every state was out of compliance with special education law, and accused the government of not enforcing compliance.
Employment of people with disabilities continues to lag well behind their peers without disabilities.
Self-employment is a successful employment alternative for people with disabilities.
Person-centered planning is becoming more common. For some people with disabilities, it’s an addition to traditional “individual service plans” (ISP) or “individual habilitation plans” (IHP). Some state legislatures have mandated that person-centered plans replace the traditional ISPs, IHPs, etc. This seems like a move in the right direction. However, caution is in order, for some people have reported that these mandated person-centered planning processes are actually no different than what they were supposed to replace; in some instances, the person with a disability isn’t present at the meeting, and that is not a true person-centered plan!
Smart phones and iPads coupled with easy-to-use, inexpensive communication “apps” are enabling many children and adults with disabilities to be more included at home, school, work, and in the community.
The Importance of Self-Advocacy by People with Disabilities
For too long, the voices of people with disabilities were not heard. There are many forces that have worked against people with disabilities speaking up for themselves:
- Many have lived in institutions. Their lives were controlled. They were punished or their behavior was “modified” if they “got out of line.” They had no say in what happened to them. Control and punishment were also part of some community-based services.
- Society generally viewed them as children. We spoke of their mental or developmental age. We did not see them as people of value. We did not value their opinions.
- Because other people did not value them, many people with disabilities did not value themselves.
- Laws and policies prevented people with developmental disabilities from speaking up in important ways like voting.
- Parents, educators, service providers, and/or others “with authority” often made decisions for people with disabilities.
The emergence of the Self-Advocacy Movement (also known as the People First Movement) has helped change all of this. In the early 1970s, People First started growing as a movement in Canada and the United States. Similarly, the Independent Living Movement (originally focused primarily on people with physical disabilities living in the community instead of nursing homes and/or other congregate care facilities) focused on people with disabilities taking control of their lives and the supports they needed.
In some communities, self-advocacy groups are formed mainly for social reasons. In other communities, the focus is on issues and advocacy. Always, there is mutual support. In some instances, unfortunately, self-advocacy groups have been weakened when strong leaders leave their posts after being recruited for positions on human service agency “consumer advisory panels” and/or similar positions. While these positions may seem to offer “better perks,” they can also result in true self-advocacy being co-opted when self-advocates are expected to “get on the bandwagon” in support of an organization’s activities.
The strength of self-advocacy is growing, but so are threats to its practice. We have important choices to make about self-advocacy: support it, be part of it, or get out of its way. Its time has come.
- Whether a person is his/her own guardian or not, practice in self-advocacy develops capacity.
- Self-advocacy requires that people speak up for themselves. Supporting people in this effort requires us to recognize people with disabilities as our equals—just as we do with our co-workers, friends, neighbors, etc. People with disabilities must be seen as first-class—not second-class—citizens.
- As citizens, it is important for self-advocates to exercise their rights and their responsibilities; they have the right and the responsibility to speak up.
- The voices of self-advocates must be heard: in their homes; in their schools, churches, and other community organizations; in organizations that provide services; and in our local, state, and federal governments.
- People with disabilities, regardless of the degree or type of disability, should always be part of the decision-making process about their own lives.