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People With Mental Retardation

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Christmas in Purgatory - click for photo gallery

At Christmas 1965, educator Burton Blatt and photographer Fred Kaplan visited four institutions for the mentally retarded. The horrors they found became a 1966 book, Christmas in Purgatory -- and its publication sparked outrage and institutional reform.
View of gallery of photos and excerpts.

People with mental retardation face a particularly daunting set of challenges in obtaining housing of their own.

They are, on average, among the poorest Americans, and must contend with a national shortage of lower-priced housing. In addition, a 1992 law allowing operators of publicly subsidized rental property to restrict some complexes to senior citizens has shut out people with mental retardation from a portion of the nation's limited stock of this housing.

Even when a suitable residence exists, running the gauntlet to get it -- through the bureaucracy of federally run public housing, or the intricacies of the American mortgage system --- can test the intellectual capacity of anyone, not least the mentally retarded.

"It's really a triple whammy," says Steve Eidelman, executive director of The Arc of the United States, the national organization for people with mental retardation. "You're poor. There's not a lot of housing available. And it's hard for you, because obtaining housing is very complicated."

The housing squeeze prevents many people with mental retardation from taking steps toward independence. It has also burdened families across the nation with the continued care of aging loved ones who cannot find out-of-home residences that meet their needs. A study by the University of Minnesota's Institute on Community Integration, which tracks services for people with developmental disabilities, estimated that nearly 75,000 people were waiting for residential aid in 2000.

Most of the estimated 7.5 million Americans with mental retardation live on their own, with parents or with siblings and do not show up on the government's waiting lists. Another significant group -- in 2000, slightly less than half a million people -- live in group or institutional settings. The group home environment works well for some people with mental retardation; but for others, living with strangers, or people with whom they're not comfortable, can cause stress and lead to deteriorating mental and physical health. The variety and quality of care in group homes also varies from state to state.

Despite the difficulties, people with mental retardation do find their own homes. The University of Minnesota study found more than 73,000 of those receiving services for mental retardation in 2000 leased or owned their own residence. But the current housing situation for these individuals looks good only in comparison to the history of how America has treated this population, advocates say.

In the first half of the 20th century, "the thought was that people with mental retardation should live in institutions and be separated from the rest of the population," says Kathleen McGinley, who works with an umbrella group of legal organizations that represent people with disabilities.

That approach began to fall out of favor in the 1950s. Since then, tens of thousands of people with mental retardation have moved out of large institutions. From 1990 to 2000, the number of people in facilities with 16 or more residents fell by about a third.

Today, only about a quarter of people receiving services in out-of-home settings live in large institutions. Most -- 61 percent -- now live in homes with six or fewer residents, according to a study by researchers at the University of Colorado.

People with mental retardation are eligible for public housing assistance through Section 8-11 of the Fair Housing Act. However, Congress, reacting to complaints from some senior citizens and public housing providers, passed a law in 1992 that limited access to public housing. That law allowed some housing to be designated elderly only. The Arc's Eidelman calls that designation "a huge issue. About what other group in society would you say, 'It's okay to discriminate against these people in providing public services'?"

McGinley says limited access to public housing, inadequate social services, and the lack of affordable housing on the open market have combined to create a quiet crisis. "You have people living with their parents when they don't want to be," she says. "You have people living in group homes when they don't want to be, and you have a growing number of people who are homeless."

The Arc's position is that people with mental retardation who wish to live on their own should be able to, with appropriate publicly funded assistance. Since 1988, The Arc's "A Key of Our Own" campaign has worked to expand programs that would enable people with mental retardation to live independently within their communities.

Not everyone with mental retardation would choose to live on their own, even if that option were extended, Eidelman says. "If we did a survey, is everybody going to choose to live in their own condo? The answer is no. That's not how the rest of the world lives. Why would this group be any different?"

However, Eidelman says, "What you don't want to do is say, 'Here's the test score and here's what they can and can't do.' You let them make that determination. And you know what? People will always surprise you."

By Reed Karaim

About Mental Retardation

Up to 7.5 million Americans have some degree of mental retardation, according to The Arc of the United States, the national organization for people with mental retardation. About 87 percent of this population is mildly affected and is only a little slower than average in learning new information and skills. The remaining 13 percent will have serious limitations in functioning.

Individuals are considered to have mental retardation if they meet three criteria: an IQ below 70-75; having the condition since childhood; and significant limitations in two or more adaptive skill areas. Adaptive skills are essentially daily living skills, including communication, self-care, social skills, functional academics (reading, writing, basic math), and the ability to work.

Mental retardation can be caused by genetic defects or problems during pregnancy, including alcohol or tobacco use by the mother. Difficulties at birth, certain childhood diseases and malnutrition or cultural deprivation early in life can also retard mental development.

Other Resources:

The Arc of the United States, the national organization for people with mental retardation, has a wealth of information about the condition and issues of importance to its members at its Web site.

A Key of Our Own: Unlock the Waiting List, a report on The Arc's efforts to ensure equal access to housing for people with mental retardation, along with an examination of how states are doing.

Residential Services for People with Developmental Disabilities: Status and Trends Through 2000, by the University of Minnesota's Institute of Community Integration, is part of an exhaustive, ongoing project at the Institute to track changes in residential services provided to people with developmental disabilities.

The State of the States in Developmental Disabilities: 2002 Study Summary is an examination of the trends in state and national services for people with developmental disabilities. It was published by the Coleman Institute for Cognitive Disabilities and the Department of Psychiatry at the University of Colorado.

Mark Moyer Photo: J. Kyle Moyer

"Not long ago, my brother Mark (above) lived in a state institution where he was beaten, raped, drugged, and denied education and reasonable medical care. But now he'll be living in a lovely, refurbished home...."

More Commentator Jeff Moyer describes moving his brother Mark "up the housing food chain."
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