The National Association for Retarded Citizens
By Robert Segal, Ph.D.
The National Association for Retarded Citizens was founded in 1950 as the National Association of Parents and Friends of Mentally Retarded Children. Initial steps for the establishment of this organization were taken in May, 1950, at the annual meeting of the American Association on Mental Deficiency, held in Columbus, Ohio. The AAMD provided in their program for some parent sessions, and following these sessions the parents got together and appointed a steering committee of the parent groups. During the summer over 100 local groups were identified. The meeting was held in Minneapolis, Minnesota, September 28 – October 1, 1950. At this meeting, a constitution was drawn up with the broad purposes to promote the welfare of mentally retarded persons of all ages and to prevent mental retardation. These goals have remained constant.
Officers were selected at the Minneapolis meeting. However, the constitution provided that the national association would not come formally into existence until 20 local units had ratified this constitution and so signified by mail. This was accomplished on February 6, 1951, At the second convention held in Grand Rapids, Michigan in October, 1951, 57 “charter” member units were recognized. Several publications were authorized. They were produced by volunteers.
The officers elected at the 1950 convention were: Mr. Alan Sampson (Washington), president; Lee J. Marino (New Jersey), first vice president; Mrs. L.H. Bieber (California), treasurer. All were parents of retarded persons.
Several factors appear responsible for the establishment of this organization: (1) widespread exclusion from school of children with IQ’s below 50; (2) an acute lack of community services for retarded persons; (3) long waiting lists for admission to residential institutions; (4) parental dissatisfaction with the conditions in many state institutions; (5) the vision of leaders who believed that mutual assistance could bring major benefits in public relations, exchange of information and political actions, and (6) the assistance of a few key professionals.
A Research Advisory Board was established in 1952 under the chairmanship of Grover Powers, M.D., Professor of Pediatrics at Yale. The Association’s official publications, a newspaper, Children Limited was also initiated at that time, under a volunteer editor. (It was later renamed Mental Retardation News and is currently issued bi-monthly.)
Dr. Salvator George DiMichael, the first executive director, was hired when the headquarters was opened in New York City on January 2, 1954. During that year the first National Retarded Children’s Week was proclaimed by President Dwight D. Eisenhower. The Association issued a variety of publications and stepped up its public information program. The following year a first film, “Tuesday’s Child,” was produced.
By 1955, the membership reached 29,000 with 412 local units. A survey undertaken in 1955 reflects the kinds of programs NARC was sponsoring. There were 1015 activities or projects operated by 296 reporting member units. Some kinds of direct services offered by the units were: classes for trainable retarded (221); classes for “educable retarded” (124); nursery school classes (94); recreational or social groups (86); counseling and guidance for parents (79); parent education classes (78); institutional services (such as providing equipment) (78); social welfare activities and information and referral services (63); In addition, sine units were also providing the following services to their members: special clinics, day care services, sheltered workshops, summer day camps, or home training programs. Other indirect services provided by the units were: (1) conducting “surveys” of the mentally retarded in their area (118 units); (2) establishing legislative or citizens’ committees in their community or state to work for improved legislation (138 units); (3) provision of scholarships (58 units); (4) conducting or sponsoring special training programs for professional persons (43 units); and (4) supporting research projects (14 units).
As a means of becoming more involved in the community organizational “power” structure, 163 units became affiliated with a local council of special health and welfare agencies or were affiliated with the local community chest or united fund agency.
Considering the fact that the NARC had begun to organize only about five years before the survey, the activities which had been undertaken at that time indicated the considerable vitality and enthusiasm of this newly growing body. What was occurring in 1955 was simply a forerunner. The enthusiastic involvement of volunteers in program development had, by 1955, led to a perceived need for paid staff. By 1955, 28 units reported that they employed an executive director or secretary either full or part-time.
1956, NARC’s “Federal Program of Action for America’s Retarded Children and Adults” was presented to Congress by Congressman John E. Fogarty (Rhode Island) Chairman of the House Sub-Committee on Appropriations for the Department of Health, Education and Welfare. In addition, NARC provided Congressional testimony on bills to expand teaching and research in education of mentally retarded children. In 1957 it backed social security coverage for adults disabled in childhood and supported the reinterpretation of the Hill-Burton Act to include funding for medical facilities for the retarded. It urged Congress to increase appropriations for vocational rehabilitation programs and pointed out the need for additional grants to states for maternal and child health programs.
In 1958 the volume Mental Subnormality was published which reported the findings of the three-year research survey sponsored by NARC, undertaken by Masland, Sarson, and Gladwin. This book was to serve as an important cornerstone in research literature in the field of mental retardation. Concurrently NARC began to give support to research projects. Because NARC was greatly concerned about the quality of institutional care, it began early to formulate policies relative to comprehensive programming in institutions. It collaborated with AAMD in developing standards and was a charter member of the Accreditation Council of Facilities for the Mentally Retarded.
In 1959 NARC published a landmark reported called A Decade of Decision. This report was presented to the White House Conference on Children and Youth and described the accomplishment and prospects of NARC with regard to meeting the service needs of the mentally retarded. A large number of NARC teachers participated in this conference as state and national delegates.
By 1960 the membership of NARC totaled 62,000: the organization had become nationally respected. It was accepted as one of the 10 voluntary health organizations recognized by the President’s Committee on Fund Raising in the Federal Service.
NARC also played a major role in the formulation and passage of the Developmental Disabilities Services and Facilities Construction Act in 1960 (P.L. 91-517 as amended in 1975 by P.L. 94-103). Following this success, NARC spearheaded the formation of a Washington based coordinating group, the Consortium Concerned with the Developmentally Disabled. Its membership included some 18 consumer and provider groups with common interests in a variety of federal programs. CCDD formed task forces around such issues as housing for the handicapped under the various sections of the Housing and Community Development Act, national health insurance, early and periodic screening, diagnosis and treatment of children with physical and mental handicaps under Medicaid, and the rapidly evolving legislation related to education of the handicapped, rehabilitation, and civil rights.
Organizationally the association recognized the need for continued support from its local units, and in 1961 a constitutional amendment provided for mandatory support of NARC by its member units. It also received the Distinguished Service Award from the President’s Committee on Employment of the Handicapped that year for its meritorious contribution. It was later similarly recognized by the President’s Committee on Mental Retardation. NARC also impacted research funding by the federal government. Between 1956 and 1961 identifiable federal support for mental retardation services and research increased from $14 million to $94 million.
In 1962 NARC received the International Award of the Joseph P. Kennedy Jr. Foundation for “outstanding leadership in the field of mental retardation.”
The NARC leadership participated in the White House Conference on Mental Retardation in 1963 and the Association provided considerable consultation and support to President John F. Kennedy’s mental retardation legislative program.
Beginning in 1963 NARC focused on activities supported the implementation of the recommendations of the President’s Panel on Mental Retardation. This effort included not only support for the 1963 Mental Retardation Facilities Construction Act (P.L. 88-164) and the planning amendments and maternity and infant care projects (P.L. 88-157), but efforts to expand the Vocational Rehabilitation Act and to establish support for special education programs. NARC also fostered state level planning by encouraging its state leaders to participate in the provision of technical assistance.
By 1964 the membership of NARC reached 100,000. The association convened the First Inter-organization Conference on Mental Retardation which had representatives from 28 national organizations. In addition, the important document, a Manual of Information for Armed Forces Personnel with Mentally Retarded Dependents, was issued.
With the impetus given by the Kennedy administration for comprehensive state planning programs for the mentally retarded, the state and local NARC’s became active participants in the development and implementation of these state programs during 1965. NARC provided 1,000,000 booklets on mental retardation information to the President’s Committee on Mental Retardation for distribution. The Association became further involved in the area of employment and produced a film entitled Selling One Guy Named Larry which launched their three-year campaign focusing on the value of employing mentally retarded persons. It also received Department of Labor support for a program of on-the-job training of retarded persons capable of moving into competitive employment.
Recognizing that the associations did not have a sufficient funding base to provide the needed spectrum of community based services for the mentally retarded, NARC reaffirmed in 1965 an earlier policy that the member units should expend their efforts to obtain services for the mentally retarded rather than provide them. The Association’s efforts focused on educating and persuading the state and local public and private agencies to serve the mentally retarded as part of their social and public obligation.
Recognizing that there would be merit in involving younger people (particularly siblings) in its association, NARC launched the YOUTH – NARC in 1967, an organization of young people actively concerned with the welfare of the mentally retarded. These youthful volunteers decide their own priorities. They worked with individuals on a one-to-one basis as well as working with groups. One of the objectives of the program was to encourage young people to seek careers in the field of mental retardation. In less than a decade YOUTH –NARC had reached a membership of 20,000.
As more and more concern was being expressed in the mid-sixties about the quality of care being offered in state institutions for mentally retarded, NARC in 1968 took a definitive stand on the subject and stepped up its insistence on immediate eradication of inhumane treatment and improvement in the quality of care in state institutions and communicated this belief publicly. Beginning in the early 1970’s NARC and state associations assisted in the preparation of court suits to defend the rights of the mentally retarded in state institutions. It became a strong supporter of “deinstitutionalization” and “normalizaiton.”
NARC’s role vis-à-vis the federal government has expanded and diversified steadily since the mid-fifties. A major component of its original strategy was to pressure for increased appropriations to relevant existing programs (particularly those involving grants in aid to the estates) such as those of the Children’s Bureau and Vocational Rehabilitation, with the understanding that these federal agencies would advocate more strongly for the rightful inclusion of retarded children and adults within their programs at the state and local level.
Over the years NARC’s governmental affairs committee with excellent leadership given by Dr. Elizabeth Boggs has been involved in such diverse issues as immigration, benefits for dependents of service men, civil aeronautics authority regulations, fair labor standards as applied to mentally retarded workers, lead paint poisoning, and immunization programs. Between 1973 and 1976 particular emphasis was placed on the complex issues surrounding the use of human subjects research, both medical and behavioral. Disclosure that retarded residents in some state institutions had been used as subjects for drug and vaccine trials without consent of parents created a wave of indignation with the organization, resulting in the passage of a convention resolution in 1973 calling for a moratorium on all biomedical research in state operated or state supported institutions. This was later (1975) revised to express a policy in support of certain limited studies, under detailed safeguards, and to those of therapeutic benefit to residents or directly related to mental retardation where no other subject population could be substituted. NARC made one of the major presentations to the National Commission on Research on Human Subjects in 1976.
Policies in this, as in other areas, reflect active participation (often initiation) by the membership. No doubt the grass roots character of the organization is a factor in its ability to influence public policy a the state and federal level.
Why has NARC been so effective in its legislative and public education programs? The answer may be related to the following factors: (1) the nature of its “grass roots” structure; (2) the socio-economic characteristics of its members; (3) the kinds social action strategies that were utilized, and (4) the able professional leadership of its executive directors and staff.
NARC’s continuing effectiveness stems from the fact that its local units are strong and have always had a voice in the policy development of the national and state associations. An examination of the history of voluntary organizations in the health and welfare field will show that it has rarely occurred that a grass roots organization, developed from “bottom up” with continued independence of the local groups, achieved such phenomenal success as has NARC.
Further, the socio-economic characteristics of the membership of NARC insured the organization success in achieving its goals. In 1974 Dr. Neman of NARC undertook a survey of 15,043 persons to obtain a membership profile. The response (35%) indicated some of the following characteristics: 81% of the members were married; 60% had attended college; 53% were between the ages of 36 and 55; 44% were employed as administrators, professionals, and those who were in managerial services; 96% were white; and 40% had an income of over $15,000. These socio-economic characteristics indicate that the membership tends to be of a middle class background. (The more active members involved in social policy development and social action tended to be upper middle class.) Individuals with these socio-economic characteristics tend to have access to persons in decision-making positions in the community and thus they are more knowledgeable and comfortable about making contact with public officials, etc. or providing testimony at legislative hearings.
NARC’s social action strategies focused on the use of public education, consultation and persuasion. Change effected through the existing social institutions and legislative channels rather than through “demonstrations” or “marches.”
NARC has had four executives in its 25-year history. DiMichael came from the field of vocational rehabilitation. Gunnar Dybwad came from the field of child welfare with a legal background; Luther Stringham, with basic training in economics, came out of the field of public administration with a federal career to which he returned on leaving NARC in 1968. Philip Roos moved from a background in clinical psychology to become superintendent of the Austin State School, a public facility for the mentally retarded. Those facts do not convey his interest in management, change and the uses of futurism to mold the present. Each of these men has left the imprint of his unique style on the organization. Although there has been a steady and sometimes subtle shift over the twenty-year span during which the organization has had “staff” at the national level, from reliance on motivated volunteers to reliance on staff, NARC today remains an organization in which decision-making is decentralized and national policy is determined by board and committee members, many of whom are parents of mentally retarded persons.
NARC and its member units continue to function as advocates for the mentally retarded in the following ways: (1) as a “watch dog” to determine that the programs that have already been funded are providing the kinds of services that are needed and that the money is being wisely spent; (2) assists in standard setting and evaluation of institutional and community based programs; (3) provides services in the community on an interim basis to fill the gaps in needed programs until such services are provided by the local or state governments; (4) initiate demonstration projects for new and innovative programs as a means of testing new approaches to the care of the retarded; and (5) implement research projects to broaden the knowledge base in areas of prevention and treatment.
By 1974, NARC had grown to include well over 225,000 members affiliated with more than 1,750 state and local member units. Because it did not wish to perpetuate the misconception that the mentally retarded person will always remain a child, NARC in 1974 changed the word “Children” in its title to “Citizens.” NARC moved its headquarters from New York to Arlington, Texas in 1970. The staff currently consists of 55 persons of whom are 21 are professionals. In addition, NARC has six regional offices, plus its Washington office.
The positive impact of NARC, both in its public education programs and its legislative program, indicates that social processes can be influenced by particular interest groups that have carefully and skillfully developed strategies and methods to effect social change.