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History - Prevention and The Arc

Written by Deborah Cohen, PhD. Copyright 2000 by The Arc of New Jersey. Used with permission.

Since its inception fifty years ago, The Arc has been committed to research and prevention of mental retardation. One of the earliest committees to be organized by The Arc of the United States was the Scientific Research Advisory Board (SRAB). 

This Advisory Board has provided oversight and guidance to The Arc regarding basic, clinical, behavioral, and social science research on a continuous basis since the earliest days. Further, while most energy was devoted to organizing local and state Arcs, the original leaders perceived prevention to be of such importance that one of the first staff to be hired was a Research Director, Dr. Richard Masland. 

In October, 1954, Dr. Masland presented a proposed research agenda to the Board of Directors. The agenda included four areas: 1) Causes of Mental Retardation, including both prevention and treatment; 2) Evaluation; 3) Teaching; and 4) Management.

The Board directed Dr. Masland to concentrate efforts on the first item and dedicated $10,000 to support four research fellowships. This allocation was the basis for what later became the Research Fund. It was one of the first member-supported funds to be established. Donations from this source have been used to support research efforts in the prevention field.

The history of The Arc movement is replete with examples of its participation in, and support for, the prevention of mental retardation. The examples below illustrate the broad investment in and commitment to prevention by The Arc over the past five decades:

An SRAB conference on the “Etiological Factors in Mental Retardation” was held in 1955 with support from Ross Laboratories;
Arc support for research in the 1950’s and 1960’s included 1) a grant to Robert Guthrie for the development of the first newborn screening test to identify infants with phenylketonuria (PKU); 2) research into the effects of toxoplasms and fetal development that resulted in a test to identify congenital toxoplasmosis (Remington); and 3) genetic factor of enzymatic differences in Downs Syndrome (Goodman);
In 1963, the President’s Panel on Mental Retardation, Task Force on Law, the Vice-Chair of which was Arc representative, Elizabeth Boggs, Ph.D., issued a report on “The Causes of Mental Retardation;”
From 1964 through 1974, Dr. Ed Zieler, Yale University, received support from the Research Fund for his work in early childhood development. The influence of his work resulted in the establishment of Head Start;
In 1973, The Arc sponsored a conference that focused on the relationship between poverty and mental retardation, with support from the Office of Economic Opportunity (OEO);
The first Arc Prevention Handbook was published in 1974;
In 1977, Kenneth Jones, MD, received a research grant to study a cluster of abnormalities that is now known as Fetal Alcohol Syndrome;
Support for prevention research in the 1980’s included a study of insulin-like growth factor in developing brains (Villa-Komaroff) and the epidemiology of mental retardation (Lemkau);
The Prevention Committee was re-established in 1988 with the objective of educating The Arc’s constituents about ways in which mental retardation could be prevented. At the committee’s recommendation, The Arc Board of Directors voted to expand the committee’s responsibilities to include prevention of secondary conditions in 1995;
Prevention of Fetal Alcohol Syndrome was included as one of The Arc’s five objectives in its Strategic Plan in 1991 and was expanded to include other causes of mental retardation in 1996.

These examples serve to illustrate the fundamental value that The Arc has placed upon prevention over the past fifty years. The organization has played a direct role in supporting research into the causes of mental retardation.

Of equal importance, The Arc has maintained its leadership in insuring that, once research findings have evolved to become practical interventions, the relevant legislation, policies and/or programs have been established.

Internal to the organization, the Board of Directors has consistently emphasized the value of prevention by including it as one of the primary objectives for the past two Strategic Plans. 

First, the board focused on educating State and Local Chapters on ways to train others about preventing Fetal Alcohol Syndrome. Then the Board expanded this educational effort to include other causes of mental retardation in its current Strategic Plan. The inclusion of prevention suggests that each State and Local Chapter must educate its Board of Directors, staff and broader community about ways in which some causes of mental retardation can be prevented.


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