History of Services
Why This Topic Is Important
The past is always with us. It shapes how we think about things and 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 for the future. What we believe is important today will have an impact on what happens tomorrow.
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 means that many people grew up not knowing people with disabilities, or what it was like to have a disability, or to be treated as different. They did not understand what it was like to be denied access to many different kinds of opportunities. Segregation kept people with disabilities apart from people without disabilities. Segregation has meant that people with disabilities are seen as "another kind of people."
Discrimination, isolation and segregation still go on today. It still affects how we see ourselves. It affects what we expect of ourselves and others. If we are going to change the future, it is important that we understand something about the past and how it affects us.
We also need to develop visions of inclusion "where we want to go in services and how we want our communities to develop. An understanding of the past will help us to 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 has helped us understand that persons labeled "mentally retarded" have been seen as sick, subhuman organisms, a menace, objects of pity, burdens of charity, and as holy innocents. In many ways, this way of seeing people is still with us. At the same time, people with disabilities are increasingly seen as people with potential and abilities, and, more and more, 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" so much any more. More and more people are seen as people first, rather than as "the disabled."
People and services are recognizing 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 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 that person's self-assessment and esteem and, subsequently, how that person thinks and behaves.
The history of disability services and laws is one of change. And for the most part, the change has always been for the better.
1850s to 1890s
The beginning of centralized services in institutions. The idea is to protect people with disabilities from society so people are placed in institutions.
People with disabilities are segregated. Laws are passed to forbid them from marrying. Warehousing in institutions continues.
People with disabilities are sterilized so they will not have children. The law allows this. Institutions do nothing about rehabilitation. Dehumanization and stigmatization continue.
People with disabilities are put to death in Germany – along with Jews, criminals, "politicals", gypsies, and people said to be antisocial.
The ARC is founded. There are 128,000 people in public institutions. Services begin in church basements or vacant buildings. Public funds are not available.
Parent organizations now in 60+ countries. Most states offer special education in some form. There are 190,000 people in public institutions. Some 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.
Decentralization and deinstitutionalization kick into high gear. Lawsuits to close institutions are frequent. Federal funds are available for residential care (ICFs/MR). The law and services recognize such ideas as the least restrictive environment, the developmental model and behavior modification. Self advocacy begins to emerge. The independent living movement emerges.
Family support and subsidy emerge. Early intervention programs are mandated. The U.S. Supreme Court rules in favor of group homes in neighborhoods. Institutional closures and downsizing are increasing. By 1986, there are fewer than 100,000 people with developmental disabilities in public institutions. Major strides are made in employment programs. Semi independent living in apartments is 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 MR/DD facilities are closed. An additional 8 large state facilities are projected to be closed between 1999 and 2000.
Privatization continues. Families receive credit cards to purchase units of service. New community and family living amendments pass. A new definition is adopted for mental retardation. States adopt supported living. The 14th Amendment is used to mandate deinstitutionalization in states slow to move toward community and family based programs. Self advocacy is commonplace and People First is consulted, along with The Arc, on developing advocacy and self assertiveness programs for young adults in regular classrooms. The Americans with Disabilities Act (ADA) ensures "No Restrictive Environments." Family members and people with disabilities are community leaders, become public officials, and set new policy directions.
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 can also be part of other services.
- Society generally viewed them as children. We spoke of their mental age. We did not see them as people of value. We certainly did not value their opinion.
- Often, because other people did not value them, people with disabilities did not value themselves.
- Laws and policies have prevented people with developmental disabilities from speaking up in important ways like voting.
- Parents and service providers often make decisions for people with disabilities.
The emergence of the self advocacy movement has helped change all of this. In the early 1970s, People First started growing as a movement in Canada and the United States. The independent living movement saw people with disabilities begin to take control of their lives and supports.
In some communities, self advocacy groups get together mainly for social reasons. In other communities, the focus is on issues and advocacy. Always, there is mutual support. In some communities, the leadership of self advocacy groups has been drawn away by the "better perks" of serving on agency consumer advisory groups.
The strength of the self advocacy movement is growing, as are threats to its existence. We must understand the reasons for the movement and the dynamics that shape it. We have important choices to make – support it, be part of it, or get out of its way. Its time has come.
- Whether a person is his or her own guardian or not, practice develops capacity. Self advocacy is essential.
- Self advocacy means people speaking for themselves. Supporting people to speak for themselves is a necessary part of recognizing people with disabilities as being full citizens, not devalued "second-class" citizens.
- As citizens, it is important for self advocates to exercise both their rights and responsibilities. They have a responsibility to speak up.
- The voices of self advocates must be heard where the big decisions are made – in the nation's capital, in your state or region, in your county, in your organization, in the service system that you're personally involved with, in your family, and in your own actions.
- People with disabilities, regardless of the degree or type of disability, should not be excluded from making decisions about things that affect their lives.
Vision for 2010
- People with disabilities assume leadership roles. They move into positions of leadership within the key federal, state, and local government agencies that create policy and direct the resources that support people with disabilities to be independent, productive, involved and included.
- People with disabilities, as community leaders, are attentive to and responsive to the needs of the entire community. Their focus is on the community as a whole rather than individual groups and agendas that tend to further segregate and isolate certain members of the community.
- People with disabilities are more politically involved and take on political leadership roles.
- An increasing number of people with disabilities serve on policymaking bodies and influence public policy directions that are responsive to the needs of the entire community.
- Service providers and professionals are held accountable for the services and supports they provide, and the degree to which they respond to people's real needs. Those who are not responsive will no longer have a job or funds.
- Grants and funding from federal, state and local sources support visionary ideas and the efforts of nontraditional organizations to be both successful and accountable to local community members.
- People with disabilities control their own resources.