Archives for February 2013

A primer on intellectual disability

Human brainI’ve started giving talks about Uncle Melrose and the world that he and other people with intellectual disabilities have lived in for the past century. In making these presentations, I’ve found that many people are not familiar with the term “intellectual disability.”

I find that I need to explain not only what it is, but explain the difference between intellectual disability and mental illness.

The two are often confused, but they are very different human conditions.

Being culturally sensitive

Twenty years ago, we referred to people with intellectual disabilities as being “mentally retarded.” This terminology, although it is far preferable to some of the labels that were common 100 years ago, is no longer considered acceptable.

Today, if you have an intellectual disability, it was usually present at birth. People who are described in this way have a permanent condition in which their intellectual functioning is impaired. They cannot be “cured,” but can live successful lives with the right kind support.

What is mental illness?

Mental illness, on the other hand, has nothing to do with intelligence level. Mental illness is a medical condition that disrupts thinking, emotions, moods, and daily functioning.  Mental illnesses include schizophrenia, bipolar disorder and depression.

Whether a person has mental illness or an intellectual disability, it is important to note that their condition is not due to lack of character or poor upbringing. These impairments can happen to anyone, regardless of their race, sex, country of origin or income level.

Fifty years of reform

An important milestone occurred last week in the history of how our nation treats people with intellectual disabilities. Fifty years ago, on Feb. 5, 1963, President John Kennedy issued a “Special Message to the Congress on Mental Illness and Mental Retardation.”

President Kennedy signs the Maternal and Child Health and Mental Retardation Planning Amendments of 1963 and hands signing pen to Eunice Kennedy Shriver.

President Kennedy signs the Maternal and Child Health and Mental Retardation Planning Amendments of 1963 and hands signing pen to Eunice Kennedy Shriver.

In it, he made several recommendations regarding changes he felt were necessary in the treatment of people with mental illnesses. He also urged congressional action on many of the 97 recommendations issued by his President’s Panel on Mental Retardation.

This panel was appointed shortly after Kennedy was inaugurated and after it was revealed that he had a sister, Rosemary Kennedy, who had a disability.

Combating ‘mental retardation’

In this historic 1963 message, President Kennedy announced a “National Program to Combat Mental Retardation.” Many cases of “mental retardation,” he said, are caused by inadequate health care for expectant mothers and young children. To remedy this problem, the president proposed a greater emphasis on maternity care, especially for women in low income areas, and on infant health care.

He also called for an increase in community services and a move away from the use of “outmoded,” “distant custodial institutions.”

Eight months later, President Kennedy signed legislation that would put into place many of the recommendations he had made. A second piece of legislation, enacted shortly before the president’s death in November 1963, provided funding for research centers that would study the causes of intellectual disabilities. Also included was increased funding for community-based care.

The report card

At that time, more than 175,000 individuals with intellectual disabilities were housed in large, state-run residential facilities – most of them in remote, rural locations.  It would take about six years for that population total to decline, but it has done so annually ever since.

Today, around 29,000 individuals reside in these types of institutional settings. A total of 12 states and the District of Columbia no longer operate large residential institutions.

According to the JFK Library, “President Kennedy and his family forever changed public attitudes toward people with intellectual disabilities. Their influence on related policies and programs can still be seen today.”

In the 20 years after President Kennedy’s administration, Congress passed 116 pieces of legislation providing support for people with intellectual disabilities and their families.

We’re not done yet

Still, much remains to be done. In a monograph titled “Honoring Eunice Kennedy Shriver’s Legacy in Intellectual Disability,” David Braddock of the Coleman Institute at the University of Colorado pointed out that thousands of people remain on waiting lists for community services.

Family support services are sadly lacking nationwide and many students with intellectual disabilities are still educated in separate facilities.

But an enormous amount has been accomplished. We who care about and work with people with disabilities owe a great deal of gratitude to President Kennedy, Eunice Shriver and the Kennedy family for all they have done in this arena.