Why deinstitutionalize and what happens when people with significant disabilities leave large congregate facilities?

For more than 30 years, states across the US have been developing more person centered, individualized and community based lives for people with developmental disabilities and people with mental illness. More than 20 detailed studies have been conducted across the country about what happens to people when they leave large congregate settings. All of these studies tell the same story. People with disabilities, including people with severe and multiple disabilities, show increases in independence, fewer problem behaviors, increases in choice making, increases in relationships with people without disabilities and increases in employment and earnings.

In addition, these studies show increases in participation in community activities. Also, neighbors develop positive attitudes about their neighbors with disabilities. And, over time, the costs are about the same and often less in the community than in large settings.

Are people at risk? Is it safe in the community?

It is important to note that a move from a large setting to a small community home does NOT mean that people must become more independent and more able to "be on their own." Supervision and supports follow people into the community and in many situations this support is full time, 24 hours a day and includes medical care and therapies. Living in the community does not mean giving up support, medical care, supervision nor other things a person needs to he safe and happy.

By every measure, living in the community shows clear increases in quality of life compared to living in larger, congregate settings. And, the supports, supervision and care goes with the person' to their new home. And, people with disabilities and their families choose where to live, who to live with and decide about the programs that will support their loved one in their new home.

Are these results just from a few places?

These results of greater quality of life in the community vs. developmental centers or institutions come from many studies including those from such states as: Arkansas, California, Colorado, Indiana, Louisiana, Massachusetts, Minnesota, New Hampshire, New York, North Carolina, Oklahoma, Oregon, Texas, West Virginia and other states.

More than 20 state institutions for people with developmental disabilities have closed since 1995. At least 5 states no longer have state institutions for people with developmental disabilities. At least four other states have fewer than 300 people with mental disabilities in state institutions.

These trends are not simply fads. While moving is difficult, all of the evidence from every study shows that the vast majority of people arc better off in the community and have a much improved quality of life.

What about how families feel when state institutions are closed?

The closing of institutions in states is a time of concern for people with disabilities and their families. This is one reason why it is important to plan very carefully for each person's move to the community. More than 20 studies of families tell us these things: before deinstitutionalization, most families were reasonably satisfied with the situation for their loved one; most did not want their loved one to leave the institution. However, within one to two years, the vast majority of family members changed their attitude about community living for their loved one and were happy about it. The vast majority of families have noted and been pleased about the improvements in quality of life for their loved one.

It is important that family members and people with disabilities know that their concerns matter when institutions are closed. While the situation is of concern, it is an important time to tell the state government, case managers and community programs what is important. People leaving the institution and their families have the right to tell everyone what is important for a happy life: where to live, who to live with, what supports are needed and how the person likes to spend their time.

David Mank, Ph.D., is the Director of the Indiana Institute on Disability and Community and Professor, School of Education, Indiana University.

The views expressed in this column are those of the author.

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