President’s 

Committee on 

Mental Retardation* 

 Joseph A Califano, Jr. 

 Chairman 

Mrs. N Lorraine Beebe 

 ViceChairman 

David M. Barrett 

Geraldine M. Clark, Ph.D. 

James D. Clements, M.D. 

Henry V. Cobb, Ph.D. 

Jeanne C. Collier 

Bill J. Doggett, M.Ed. 

Jean Katherine Elder, Ph.D. 

Arnold G. Ganges, AIA 

Michael R. Gardener 

John P. Greene 

Morley Hudson 

Cecil B. Jacobson, M.D. 

James N. Juliana 

Philip U. Martinez, M.D. 

Frank J. Menolascino, M.D. 

Dolores T. Norley 

Cherrie Sevick 

Will Beth Stephens, Ph.D. 

Margaret V. Tedone 

Margaret B. Ulle 

Ex Officio 

The Attorney General 

The Secretary of Labor 

The Secretary of Housing and Urban Development 

The Administrator, Community Services 

Administration 

The Director, ACTION 

*January 1977 
MR 76 

Mental Retardation: Past and Present 

President's Committee 

on Mental Retardation 

January 1977 

Washington, D.C. 20201 

For sale by the Superintendent of Documents, U.S. Government Printing Office 

Washington, D.C. 20402 

Stock No. 040-000-00385-1 
The University of South Dakota under HEW 

Contract No. 105-74-7301 furnished assistance in 

the preparation of this publication. 

Dr. Henry V. Cobb, 

series coordinator 

Mary Z. Gary, 

editor 

Library of Congress Catalogue No. 76-

43579 

For sale by Superintendent of Documents, U.S. 

Government Printing Office, Washington, D.C. 

20402. 

ii 
Letter of Transmittal 

PRESIDENT'S COMMITTEE ON MENTAL RETARDATION 

WASHINGTON, D.C. 20201 

The President 

The White House 

Washington, D.C. 

My dear Mr. President: 

I have the honor to transmit to you the tenth annual report of the President's Committee on 

Mental Retardation. 

Mental Retardation: Past and Present traces the history of America's treatment of retarded 

persons from the humanitarian movement of the 1850's to the present. The book documents the 

dark years of neglect and isolation, as well as the shining years of the Kennedy Administration 

when mental retardation first gained national recognition and support. 

Encompassed within the broad scope of this report are the current efforts of the public and 

private sector concerning education, services, research, terminology, testing procedures, legal 

rights, economics and many other facets of the complex problem known as mental retardation. 

Although this volume can stand alone as a unique reference guide to mental retardation, it also 

provides background and rationale for the recommendations presented in its companion volume, 

Report to the President, Mental Retardation: Century of Decision. Both books are part of the 

four-volume "Century of Decision" series published by the President's Committee on Mental 

Retardation in celebration of the nation's Bicentennial Year and the tenth birthday of PCMR. 

Other volumes in the series are Mental Retardation: The Known and the Unknown and Mental 

Retardation: Trends in State Services.

As this nation starts its third century, Mr. President, we are confident that, under your leadership, 

citizens who are mentally retarded will have a share in that ever expanding American dream. 

Faithfully yours, 

Joseph A. Califano, Jr. 

Chairman 

Enclosure 
Acknowledgments 

We are indebted to the following individuals who 

have contributed their knowledge and experience and time 

to insure the accuracy and usefulness of this volume: 

Charles E. Acuff 

Commissioner 

Mental Retardation-Developmental Disabilities Service 

State of Arkansas 

R. J. Alfultis 

Director 

Personnel and Training 

U.S. Dept. of Transportation 

Wallace K. Babington 

Coordinator 

Interagency Activities 

White House Conference on Handicapped Individuals 

Eleanor J. Bader 

Director 

Organization Liaison Staff 

Office for External Affairs 

Social Security Administration 

HEW 

Benjamin R. Baker, Maj. Gen. 

Deputy Surgeon General 

Medical Corps 

U.S. Air Force 

Harold S. Barbour, Ed.D. 

President 

The Woods Schools 

Dwight Blankenbaker 

Program Implementation 

Public Health Service 

HEW 

George W. Brown 

Program Analyst 

HUD 

Eloise E. Clark 

Deputy Asst. Director 

Biological and Social Sciences 

National Science Foundation 

Blanche Coll 

Social Science Research Analyst 

Social and Rehab. Services 

HEW 

Ronald Conley, Ph.D. 

Research Director 

Interdepartmental Workers' Compensation Task Force 

U.S. Dept. of Labor 

Gunnar Dybwad, J.D. 

Professor of Human Development 

Brandeis Univ. 

Joseph Fenton, Ed.D. 

Chief, Special Centers 

Rehabilitation Services Admn. 

HEW 

Maurice Flagg 

PCMR Consultant 

Erwin Friedman, Ph.D. 

Director 

Manhattan Developmental Services 

Dept. of Mental Hygiene 

State of New York 

William C. Geer 

Executive Director 

Council for Exceptional Children 

Robert M. Gettings 

Executive Director 

Natl. Assn. of Coordinators of State Programs 

for the Mentally Retarded 

Leroy V. Goodman 

Executive Secretary 

National Advisory Committee on the Handicapped 

Bureau of Education for the Handicapped 

HEW 

Harold H. Griffin 

Director 

Office of Congressional Relations 

Small Business Administration 

Herbert Grossman, M.D. 

Director 

Illinois Pediatric Institute 

Rudolph P. Hormuth 

Specialist in Services for Mentally Retarded Children 

Health Services and Mental Health Administration 

HEW 

Jennifer Howse, Ph.D. 

Executive Director 

Willowbrook Review Panel

Edward L. Johnstone 

PCMR Consultant 

George Jones 

Chief 

Division of Developmental Disabilities 

Univ. of Colo. Medical Center 

Curtis Krischef, Ph.D. 

Professor 

Dept. of Social Work 

Florida State Univ., Tallahassee 

Ira Laster, Jr., Ph.D. 

Program Coordinator 

Office of Environmental Affairs 

U.S. Dept. of Transportation 

Sherman Lazrus 

Deputy Asst. Secretary 

(Health Resources and Programs) 

U.S. Dept. of Defense 

John W. Leslie 

Director 

Office of Information U.S. 

Dept. of Labor

iv 
Francis X. Lynch 

Director 

Developmental Disabilities Office 

HEW 

John W. Lynch, Jr. 

General Manager 

Personnel Administration Div. 

Employee Relations Dept. 

U.S. Dept. of Labor 

Opal Mann 

Asst. Administrator 

Home Economics 

Extension Service 

U.S. Dept. of Agriculture 

Paul Marchand 

Director 

Government Affairs Office 

Natl. Assn. for Retarded Citizens 

Emerson Markham 

Director 

Budget Division 

ACTION 

Edwin W. Martin, Ph.D. 

Acting Deputy Commissioner for. Education of the Handicapped Bureau of Education for the Handicapped 

HEW 

Tadashi Mayeda 

Consultant 

Brian McCann 

Asst. Executive Director 

Program Services 

Natl. Assn. for Retarded Citizens 

Floyd B. McDowell, Ed.D. 

Principal 

Meadowood School 

Robert P. McNeill 

Executive Director 

American Assn. of University Affiliated Programs for the Developmentally Disabled 

John M. Meier, Ph.D. 

Director 

Office of Child Development 

HEW 

Jane Mercer, Ph.D. 

Professor and Chairman 

Dept. of Sociology 

Univ. of Calif., Riverside 

William R. Nolan, Jr. 

Acting Director of Personnel 

U.S. Dept. of Agriculture 

Bernard Posner 

Executive Director 

President's Committee on Employment of the Handicapped 

David B. Ray, Jr. 

Director 

Dept. of Social and Rehab. Services 

State of Arkansas 

Paul A. Rittmanic, Ph.D. 

Director 

Midwest Speech and Hearing Assoc. 

Philip Roos, Ph.D. 

Executive Director 

Natl. Assn. For Retarded Citizens 

Richard L. Roudebush 

Administrator 

Veterans Administration 

Eunice Kennedy Shriver 

Executive Vice President 

The Joseph P. Kennedy Jr. Foundation 

Marion P. Smith 

President 

Natl. Assn. for Retarded Citizens 

George Soloyanis, Ph.D. 

Executive Director 

American Assn. on Mental Deficiency 

Howard E. Sorrows 

Assoc. Director for Programs 

Natl. Bureau of Standards 

U.S. Dept. of Commerce 

George Tarjan, M.D. 

Professor of Psychiatry, UCLA 

PCMR Consultant 

John D. Thompson, M.D. 

Professor and Chairman 

Dept. of Gynecology and Obstetrics 

Emory U. School of Medicine 

Theodore D. Tjossem, Ph.D. 

Mental Retardation and Developmental Disabilities Branch National Institute of Child Health and Human Development 

Joan A. Varley 

Research Analyst 

Office of Special Litigation 

Civil Rights Division 

U.S. Dept. of Justice 

Miriam G. Wilson, M.D. 

Professor of Pediatrics 

Chief, Genetics Division 

U. So. Calif., Los Angeles 

Robert Wilson 

Asst. Administrator 

Public Affairs 

Social and Rehabilitation Services 

HEW 

PCMR staff ably assisted the Committee in every step of the entire "Century of Decision" series, under the supervision of Allen R. Menefee, 

with Ruth Seymann handling logistics. Blanche 

Coll, on detail from SRS, conducted the research 

for much of the historical section. 

Every member of the President's Committee was instrumental in the production of this book, 

with Dr. Elizabeth M. Boggs in particular making 

a unique contribution. 

The major credit, however, belongs to Dr. Henry Cobb, the principal author, whose mastery of every aspect of the subject made this complex 

project a reality. 

Fred J. Krause, 

Executive Director, 

PCMR

v 
An engraving by Tardieu from 

Maladie Mentale, Paris, 1838. 

The original lithograph was 

described as a "full-length view of 

a half cretin. . . , a happy beggar, 

free to go from village to village, 

singing and dancing for 

money." From J. P. A. Fabré’s 

Traite du Goitre et du 

Cretinisme, Paris, 1857. 

“A blind female cretin,” 

From Anton Nystrom’s Om 

Cretinism och Idioti, 

Stockholm, 1868. 

An engraving from Maladie 

Mentle, Paris, 1838. 

vi 
Contents 

Chapter 1 Inheritance of a Hundred Years ..........................................................1 

Chapter 2 The White House Looks at Children and Youth...............................25 

Chapter 3 Parents and Volunteers .....................................................................37 

Chapter 4 Change Makers and Developers .......................................................63 

Chapter 5 The Growth of Federal Programs ....................................................83 

Chapter 6 Progress of a Plan............................................................................105 

Chapter 7 PCMR and Its Role .........................................................................127 

Chapter 8 The Change of an Image.................................................................137 

Chapter 9 What Is Mental Retardation? ..........................................................143 

Chapter 10 Federal Resources in 1975..............................................................157 

Chapter 11 Action in the States .........................................................................193 

Chapter 12 The Role of Higher Education ........................................................211 

Chapter 13 The Economics of Mental Retardation ...........................................245 

Chapter 14 The Shape of the Challenge ............................................................259

Glossary ..........................................................................................265 

Index ...............................................................................................266 

vii 

Chapter 1 

Inheritance of a Hundred Years 

The rejections, the indictments, the closed 

doors and closed faces, the guilt, the doubt, 

the despair, the anger, the recrimination of 

husband to wife and wife to husband. There 

must be a better way. 

As the fires of World War II burned out, 

a smouldering volcano of outraged 

parenthood erupted, and the mountainsides of 

public opinion moved. 

It was the emotional explosion of thousands 

upon thousands of frustrated and heartsick 

parents of retarded children across the 

Nation—and in England and France and 

Denmark and Holland and Australia and Japan. 

And here and there voices that said Yes—

there are better ways—we do know better 

now. Retarded children can be helped. 

Persons who are retarded, who are defective, 

slow in mind, deformed and misshapen, spastic, 

epileptic, are still human beings. They can learn 

and live and laugh and realize the worth of life, 

even within the limits of disability. Education is 

possible, and is their right. Productive work 

is possible and they deserve an opportunity. 

The people is the grand canyon of 

humanity and many many miles 

across. 

The people is Pandora's box, humpty, 

dumpty, a clock of doom and an 

avalanche when it turns loose. 

But the world had been deeply indoctrinated 

with an image which made a mentally limited 

child a product and a progenitor of evil 

heredity and social degeneracy, a subhuman or 

non-human contaminant of the human race. 

The people rest on land and weather, on 

time and changing winds. 

The people have come far and can look 

back and say, "We will go farther yet." 

The people is a plucked goose and a 

shorn sheep of legalized fraud This demonic image had persisted in popular 

thought, in statutory codes, in the regulations of 

educational systems, in the practices of courts, 

in the judgment of most of the professionals 

and in the dehumanizing environments of masscare institutions. The image, growing over a 

half century, persisted through the period of 

depression and war in the 1930's and 1940's—

even though the knowledge was then available 

to expose the false basis of that image. 

And the people is one of those mountain 

slopes holding a volcano of retribution, 

Slow in all things, slow in its gathered wrath, 

slow in its onward heave, 

Slow in its asking: "Where are we now? 

What time is it?"' 

Carl Sandburg: The People, Yes.*

These people had heard too long the old 

familiar answers: "Your child is defective, put 

him away and forget him." . . . "Your child is 

feebleminded, there is no place for him in the 

school." . . . "Your child is a vegetable—he 

will never be anything else." . . . "Your 

daughter must be sterilized if she stays in the 

community." . . . "There's no room in the 

institution; your son will be put on the waiting 

list. How long? Perhaps in two years there will 

be space." . . . 

In historical perspective, it is now possible to 

see the enormous injustice that a false 

understanding of mental disability perpetrated on 

disabled persons and their families, and also some 

of the reasons why that misconception 

developed and what it led to in terms of social 

policy and the application of the wrong 

remedies, the effects of which still persist 

today. 

*The People, Yes, Harcourt Brace Jovanovich, Inc., 

New York. 

1 
There have been many reviews of that 

history, beginning with that of Walter Fernald 

in 1924, who himself had been one of the 

principal architects of the "menace of the 

moron" thirty years earlier. The writings of 

Davies, Deutsch, Haskell, Sloan, 

Wolfensberger, and many others have 

contributed to our better understanding of the 

strange ideological deviation which for half a 

century attributed to mentally retarded people 

the primary responsibility for all social ills, and 

characterized them as people from whom 

society must at all cost protect itself. (The 

final "all cost" protection was achieved in the 

gas chambers of Nazi Germany.) 

The record is in the archives of State and 

Federal Governments, in the reports of the 

superintendents of institutions, in the 

Proceedings of the National Conference on 

Charities and Corrections, in the issues of the 

Journal of Psycho-asthenics and its successor 

the American Journal of Mental Deficiency, 

and in the gathering flood of books, pamphlets, 

articles and speeches by the growing army of 

the concerned. 

We can trace the process by which the first 

humanitarian efforts of 1850 to educate the 

"poor idiot" and make him socially competent 

were transformed by 1915 into deliberate 

programs to "identify, segregate, and sterilize 

every feebleminded person as a menace to 

social decency and racial purity: to the end that 

they shall not reproduce their kind." This 

language was typical of the statutory 

provisions for the control of 

feeblemindedness in many States well into the 

1950's, elements of which still persist in some 

statutes today. 

We shall touch in this chapter only on the 

principal steps in that process of policy 

development, to show some of the influences 

that converged to bring it about. 

The industrial revolution, for all its benefits 

in increasing wealth and productivity through 

free enterprise and technological 

development, nevertheless produced social 

side effects of appalling magnitude. 

Factory and commerce led to the growth of 

the cities with concentrations of poverty, disease, 

crime and human misery in their slums. The 

exploitation of labor, especially of women and 

children, stultified the lives of those who 

could not rise out of their entrapping poverty. 

Meager security was undermined by the ruthless 

swing of the business cycle. Families were 

caught in a bind between having children who 

would provide more hands to augment family 

income, but who also increased the mouths to 

be fed. 

In America the floodgates of immigration 

were open to provide a steady supply of cheap 

labor—welcomed at first, but eventually 

clogging the cities and saturating the 

countryside from coast to coast. The 

"melting pot of humanity" in fact melted only 

in spots, sustaining a mixture of competing 

nationalities and ethnic minorities at varying 

degrees of disadvantage in the economic 

"pecking-order." 

The Civil War, which, among other issues, 

was an expansion of industrialism requiring a free 

labor market, transformed a black slave 

population into a new marginal minority which 

eventually became explosive in its frustrations. 

In nineteenth century Europe and 

America, the mode of dealing with these 

festering social problems was by mixed efforts 

of control and philanthropy, but mainly by 

harsh repression. Revolts of the victims against 

the machines or against their owners were 

vigorously suppressed. 

The efforts of labor to organize and press 

its needs by arbitration or strike were met by 

repressive efforts to smash the unions or lock 

them out. Some reforms were instigated in the 

prisons, almshouses, and other institutions of the 

poor. The writings of Zola in France and 

Dickens in England brought some enlightenment. 

2 
Democratic society in the industrial countries 

identified worthiness with work and authority 

and property. Education, seen as a growing 

public responsibility and in the public good, was 

not yet either universal or mandatory, with little 

access by children of the working classes and 

the poor. In the factories and on the farms 

children were of more value as meager wage 

earners than as scholars. 

Education was still a middle-class privilege. 

Modern philosophy from Descartes to John 

Locke and their successors emphasized the 

centrality of thinking mind as the measure of 

human worth. Translated into practical historical 

terms, industrial society put a high premium on 

intellectual traits for those who had upward 

mobility. Intelligence of a high order is 

essential for the scientific, technological and 

managerial development of a complex social 

order. 

Even the conditions of survival in industrial 

society, through work, require a degree of 

intelligence unnecessary in simpler cultures. 

Differences in "smartness" determined 

differences in success, so that intelligence became 

increasingly a recognized condition of upward 

mobility and economic and social security, 

and hence rose to the top of the scale of human 

values. 

Correspondingly, limitations of intelligence 

became stigmatic and degrading. 

"Feeblemindedness" and other terms of 

unacceptably low levels of intelligence came 

to epitomize inability to compete effectively 

for the good things of life. A burden on those 

who could and did succeed, it stood out 

starkly as the most dreaded of all disabilities, 

worse by far than crippled limbs, unseeing eyes 

or unhearing ears. More than that, the "idiot," 

the "imbecile," the "moron" became not only 

an "unfortunate" victim to be pitied and helped, 

but also a monstrous purveyor of evil to be 

searched out, segregated, degraded, mutilated 

and even, in the extreme time and place, 

ruthlessly destroyed. Why? 

Humanitarian Beginnings 

In 1846, Dr. Samuel Gridley Howe of 

Boston, stimulated by work done in Europe 

and by his own efforts in teaching the blind, 

and the deaf-blind, persuaded the 

Massachusetts Legislature to appoint him as 

head of a commission to "inquire into the 

conditions of the idiots in this commonwealth, 

to ascertain their number, and whether anything 

can be done for their relief." 

Howe thereupon undertook the first systematic survey of a mentally defective 

population. He discovered a total of 755 

"idiots" in 182 towns with a combined 

population of 392,586. From this, Howe 

concluded that on the same ratio of 2 per 

thousand there was a total of 33,000 in the U.S. 

but he admits that "many, perhaps most, of the 

idiotic children escaped the notice of the 

commission." Of those identified, Howe and his 

associate personally interviewed a total of 574 

cases on a complex and, for that day, quite 

scientific schedule. 

The amount of detailed information he 

obtained was astonishing. The cases ranged in 

age from 6 months to 103 years, and in severity 

from "the lowest class of mere organisms, to 

'simpletons' . . . the highest class of idiots." 

Most came from backgrounds of poverty; 

225 were from indigent families; 220 were 

town or State paupers; only 84 had 

economically secure support. "The great end 

of all this inquiry was to ascertain the capacity 

of idiots for improvement." Dr. Howe 

concluded that of the 200 under age 25, 196 

could be helped, as well as about 80 percent of 

the 372 over age 25. "These are the proper 

subjects of education; they can be taught to do 

some kinds of labor, to acquire some kinds of 

knowledge, to attend to their own persons and 

take care of themselves." He did not minimize 

the difficulties and the time required for their 

improvement. "They must have schools, 

teachers, and apparatus peculiarly adapted to their 

capacities and powers."

3 
The legislature appropriated $2,500 annually for 

three years to educate ten "idiots," in order to try the 

experiment. Thus, the first public residential 

institution in the United States was born as the 

Massachusetts School for Idiotic Children and Youth. 

With the assistance of Eduard Seguin, whom Howe 

had met in Paris and who came to the United States 

during the Revolution of 1848, and Dr. Harvey B. 

Wilbur who had begun a small private school in 

Boston, the following decade saw the establishment 

of State schools in New York (1851), Pennsylvania 

(1853), Connecticut (1858), Ohio (1859), and Kentucky (1860). Some private residential schools were 

also springing up during this time. 

It is often said that these early, small and 

somewhat home-like schools were a failure because 

Howe and his fellows were too optimistic, unrealistic 

and naive in their educational expectations; that, in 

short, they failed because they expected to restore all 

"idiots" to normal function through intensive special 

education. That is not the conclusion to be drawn 

from the records. The schools did not fail. They 

succeeded in the kinds of improvement Howe and 

Sequin sought, though not always to the extent they 

hoped for. A careful reading of the Howe reports and 

papers suggests that the subsequent change in the 

institutions was for other reasons entirely. 

From the beginning, Howe, together with Seguin 

and Wilbur, insisted that the school be organized 

"upon the plan of a family" with "a kind and mother 

person" in care (Howe, Rept. to Mass. Senate #38, 

1850); that its sole concern be with education during 

the "best learning years" and they be "returned to 

their families." (Wilbur, Rept. of the N.Y. Asylum 

for Idiots, 1854.) Howe wrote in this 1850 report: 

The enterprise . . . began with an understanding of its 

difficulties and with a consciousness that it might be 

considered by many, a failure, even if it were really 

successful, because the progress and improvement of a 

class of idiots would be very slow and small, when 

compared with a class of ordinary children, as to be 

overlooked by ordinary observers . . 

It is hoped that part of them will gain some really 

useful knowledge; that most of them will become 

cleanly decent, temperate and industrious; and that all of 

them will be better and happier from the efforts made in 

their behalf. 

In 1852 he expressed disappointment that the 

pupils referred to him were mostly too old and had 

too many complicating physical disabilities to be the 

most favorable subjects, but he recognized that these 

were the cases most burdensome to their families. 

He affirmed stoutly in this same report that: 

this establishment is called a school, and it is a link in 

the chain of common schools, the last indeed, but still a 

necessary link in order to make the chain embrace all 

the children in the State . . . All are to be kept busy, and 

rendered industrious, and, if possible, taught some 

simple and useful work, if it be but doing chores about a 

house or farm . . . if they be properly taught and trained 

to industry, a few of them will earn their living by their 

work, many of them will contribute something towards 

their own support and almost all of them will become 

less burdensome and expensive. 

(Mass. Rept. to Mass. Senate, Doc. #57, 

1852, p. 89) 

In his 1856 report, Howe noted with concern that: 

there is the greatest reluctance on the part of parents and 

guardians to remove those pupils whose terms have expired, partly because they think they are better here, and 

partly because they dislike to resume the care and 

responsibility. This is especially true of the most 

unfortunate children—of the lowest idiots . . . It is clear, 

then, that . . . the question will soon come up in a 

pressing form. What shall be done with those idiots who 

are past the age of childhood and past the hope of 

improvement? 

(Howe, 8th Ann. Rept. 1856, p. 13-16) 

National Library of Medicine 

Samuel Gridley Howe, 1801-1876 

4 
But in the following year, when a bill to 

provide scholarships for 15 idiotic children from 

poor families was vetoed, Howe wrote heatedly 

to the Governor: 

True it has not changed the nature of any born 

idiot and given him common sense, and no honest 

and wise persons have pretended this could be 

done. But . . . it has shown that idiots form no 

exception to the law that every form of organized 

life is capable of being changed for better or worse 

by surrounding influences . . . It has rescued some 

children of merely feeble minds from the 

imbecility into which they had fallen . . . given 

speech to some who were dumb . . . many trained 

to habits of industry. 

In the same letter to the Governor, Howe 

noted that "idiotic children are found mostly 

among the poor and humble . . . nutrition tells 

upon brain as well as upon muscle," then 

launched into a theme which became an 

increasing preoccupation until his retirement in 

1874—the dangers of institutions: 

In almost all public, charitable and penal 

institutions with which I am familiar, serious evils 

arise from violation of the principle that we should 

separate not congregate . . . Being called upon 

lately to give advice about the establishment of 

institutions for the Blind and Deaf Mutes in a new 

State, I have counselled a course different from the 

one I, myself, followed many years ago. It is to 

dispense with any great costly building, having 

common dormitories, dining room, chapel and the 

like. To make no great preparation for any great 

common household at all; but to build a simple 

building, with all the conveniences for conducting 

classes, and make provision for boarding the 

pupils in private families. In a word to reduce the 

Institution . . . to its simplest possible form. This is 

perfectly feasible in many small towns and 

villages. 

(Howe: A letter to the Gov. of Mass. upon 

his veto of a bill providing for an increase in 

State beneficiaries at the School for Idiotic 

Children, Boston, Tickner and Fields, 1857)

This anti-institutional view became an increasingly strong conviction for the remainder 

of his life. In 1866, in a famous speech at the 

laying of the cornerstone of a new institution for 

the blind at Batavia, New York, Howe 

questioned whether the enterprise might not be a 

mistake: 

. . . Society, moved by pity for some special form 

of suffering, hastens to build up establishments 

which sometimes increase the very evil which it 

wished to lessen . . . Our people have rather a 

passion for public institutions, and when their 

attention is attracted to any suffering class, they 

make haste to organize one for its benefit . . . 

All great establishments in the nature of boarding 

schools, where the sexes must be separated; where 

there must be boarding in common, and sleeping 

in congregate dormitories; where there must be 

routine and formality, and restraint, and repression 

of individuality, where the chores and refining 

influences of the true family relation cannot be had, 

all such institutions are unnatural, undesirable, and 

very liable to abuse. We should have as few of 

them as possible, and those few should be kept as 

small as possible. The human family is the unit of 

society. 

(Howe: Ceremonies on laying the 

cornerstone of the N.Y. State Inst. for the 

Blind, at Batavia, Sept. 6, 1866)

In his final report to the Trustees of the 

Massachusetts School for Idiotic Children in 

1874, as he retired, Howe, reiterated the theme: 

Now the danger of misdirection in this pious and 

benevolent work is, that two false principles may 

be incorporated with the projected institutions 

which will be as rotten piles in the foundations and 

make the future establishments deplorably 

defective and mischievous. These are. first, close 

congregation; and, second, the life-long 

association of a large number of idiots; whereas, 

the true, sound principles are: separation of idiots 

from each other; and then diffusion among the 

normal population . . . For these and other reasons 

it is unwise to organize establishments for teaching 

and training idiotic children, upon such principles 

as will tend to make them become asylums for life . 

. . Even idiots have rights which should be 

carefully considered! 

At any rate let us try for something which shall not 

imply segregating the wards in classes, removing 

them from our sight and knowledge, ridding 

ourselves of our responsibility as neighbors, and 

leaving the wards closely packed in establishments 

where the spirit of pauperism is surely engendered, 

and the morbid peculiarities of each are intensified 

by constant and close association of others of his 

class. 

(Howe: Rept. of Supt. Oct. 1, 1874)

5 
His was the last voice to speak in this 

vein for more than half a century. 

From Residential School to Custodial Institution 

Even while Howe was inveighing 

against the evils of continuing custodial 

asylum for the pupils of the institutional 

schools, it was, in fact occurring. The great 

bulk of admissions were from indigent 

families whose ability to provide even 

subsistence was extremely limited. All agreed 

that only a small proportion trained in the 

institutions would be fully self-supporting on 

release; and there were no other supplemental 

supports available. 

The common fate of the person who was 

mentally defective was pauperism and 

assignment to the County Alms House where 

conditions were appallingly inhumane. In 

Kentucky, there was a law providing an 

annual subsidy of $75 for support to the 

parents or caretakers of an idiot as a buffer 

against pauperism. Wilbur, in his Annual 

Report for 1868, noted that when an institution 

was established in Kentucky (1860) it was 

expressly for the "teachable" class. "While the 

other class, including those who were 

unteachable or too old for instruction, still 

remained the beneficiaries of the State, under 

the same conditions as before." 

Wilbur notes that the annual cost to the State 

of this subsidy program was about $25,000. 

Dr. Stewart, Superintendent of the Kentucky 

institution, noted in 1884 that the cost of 

subsidies had risen to $80,000 and he did "not 

think it a good plan." (Natl. Conf. of 

Charities and Corrections Proc. 1884, p. 

367.) The law was rescinded in 1924, to the 

expressed satisfaction of the proponents of lifecare institutions. 

The chief spokesman for institutional 

life-time custodial care was Dr. I. N. Kerlin, 

Superintendent of the Pennsylvania Training 

School for Feeble Minded Children (Elwyn). 

In his annual report of 1875, Kerlin attacked 

Wilbur at Syracuse and Howe at Boston for 

disguising the true extent of custodial care they 

were actually offering. He repudiated Howe's 

"principle of diffusion" of the idiotic 

throughout the community on the ground that 

they are in reality "aliens in their own homes, 

because unlike any other child or member of 

the family; foreign to the community, because 

insubordinate to its rules and habits; children 

always even when men in stature, of necessity 

they come to be repelled from home and 

society." He summarily dismissed Dr. Howe's 

suggestion of "idiots' rights" (I. N. Kerlin, 

Annual Rept. Pa. School for Feebleminded, 

1875, pp. 17-18). 

Ironically, the year after Dr. Howe's 

death, in 1876, his successor requested 

"provision for the custody or protracted care 

of such children as have no homes to which 

they can be safely returned after receiving all 

the training of which they are susceptible . . . 

but it would require very considerable 

additions to our means." (30th Ann Rept. 

Mass. School of Idiotic and Feebleminded 

Youth, 1877, p. 16.) 

Wilbur's report for 1874 shows a total of six 

State, one municipal (N.Y.) and two private 

institutions with a total of 1,282 residents, 

ranging from five (private school in Boston) 

to 357 (Columbus, Ohio). The public 

institutions were now moving rapidly to a dual 

function of training and custody, with no 

voice speaking anywhere for meeting the 

needs of mentally impaired people within the 

community. 

The attitude, however, was still essentially 

benign and humanitarian, the institutional 

objectives being to provide a better 

environment and opportunity for improvement 

to impaired persons and relief to the family 

and community. It becomes evident, though, 

that the costs of institutional expansion were 

meeting with resistance from legislatures and 

public officials. It took more than a spirit of 

philanthropy to open the public purse. New 

stimulation, however, was not long in coming.

6 
From Appleton's Journal of Popular Literature, Science, and Art, February 12, 1870. 

In 1876, a year following Howe's death, a group 

of the superintendents of State institutions, under the 

leadership of Dr. Seguin organized the American 

Association of Superintendents of State Schools for 

the Feebleminded, the progenitor of the American 

Association on Mental Deficiency. The proceedings 

of their annual meetings provide some of the early 

reference material on their discussions and viewpoints. 

However, they found a wider forum in the 

annual meetings of another fledgling organization, 

the National Conference of Charities and 

Corrections. In most States the administrative 

control of State-run correctional institutions, mental 

hospitals, homes for dependent children and institutions for the idiotic and feebleminded was lodged in 

a single Board of Charities and Corrections. 

The representatives of these boards, or of the 

separate functions where no single board existed, 

organized in 1874 to provide an annual forum for 

their debates. Here the superintendents found a 

means of gaining a hearing outside of their own 

numbers for the expression of issues which rapidly 

became quite heated. Hence, the Proceedings of the 

N.C.C.C. constitute the major source for the most 

important papers delivered by the leaders in the 

field for a period of 40 years. 

In 1884 Kerlin delivered a paper to the 11th 

Conference of Charities and Corrections on 

"Provision for Idiotic and Feebleminded Children" 

which was hailed by Fernald, 20 years later, as a 

"prophetic report . . . as authoritative today as when 

it was written . . . a classic." (National Conference 

of Charities and Corrections Proceedings, 1904, p. 

380.) Kerlin noted that the Federal census of 1880 

showed an increase in number of feebleminded of 

209 percent over that of 1870, but stated that the 

total of 76,895 was still an underestimation by "20 

or 30 percentum," and that of the total only 2,429 or 

a little over 3 percent were institutionalized. Of the 

3,500 known cases in Pennsylvania he noted that 

only about one third were in families with the 

means to pay any substantial amount for care; the 

balance were in impoverished homes or in county 

poor houses. 

Following a description of the ascending 

gradations of feeblemindedness (1. Idiocy, 2. Idioimbeciles, 3. Imbeciles, 4. Juvenile insanity) Kerlin 

then launched into a "practical consideration" of the 

higher grade and of "juvenile insanity." He noted 

the close connection of these groups with the 

impoverished and pauperized families in which 

crime, prostitution, alcoholism, and other evils 

abound. Then followed a notable piece of rhetoric. 

There is no field of political economy which can 

be worked to better advantage for the diminution 

of crime, pauperism, and insanity than that of 

idiocy. The early recognition of some of its 

special, upper, and more dangerous forms 

should be followed by their withdrawal from 

their unwholesome environments and their 

permanent sequestration before they are 

pronounced criminals, and have, by the 

tuition of the slums, acquired a precocity that 

deceives even experts. Only a small percentage 

should ever be returned to the community. 

(I. N. Kerlin: Provision for 

Feebleminded and Idiotic Children, 

Natl. Conf. of Charities and 

Corrections. Proc. 1884, pp. 257-8) 

7 
Kerlin added another significant sentence: 

"American institutions having been already in 

existence 30 years, it may be asserted that the 

experimental period is passed, and that, when 

States shall proceed to legislate for these 

defectives, it will be done on a permanent basis." 

Thus, with a sweeping brush, Kerlin transformed 

the institution from a school from which the 

"improvable" may return better fitted for social 

living and an "asylum" for the profoundly 

impaired who have no community home, into 

instruments of permanent segregation of the unfit 

from the community to which they are a menace. 

This was one of the earliest expressions of 

"social Darwinism" to appear in the literature of 

mental deficiency. 

In a later paper, Kerlin expounded further on 

a type of defective "in which the congenital 

deficiency of the moral sense evidences itself": 

(I. N. Kerlin: The Moral Imbecile, National 

Conference of Charities and Corrections, Proc. 

1890.) Kerlin called this type the "moral 

imbecile," characterized by only mild 

intellectual deficiency, but by uncontrolled and 

vicious behavior originating in childhood. His 

description corresponds to what we have more 

recently called "emotionally disturbed" or "sociopathic" children. 

In fairness to Kerlin, it should be noted that he 

described this group as a minority of institutional 

cases, "the black residue of 25 percent." But it 

was a small step to generalize from the danger of 

this limited group to the potential danger of all 

feebleminded. 

This step was, in fact, taken quite easily in the 

discussion which followed Kerlin's paper. A Dr. 

Walk of Philadelphia: ". . . I think it is time for 

every American State . . . to put its idiotic 

populations under custodial care, not for a day 

or a week, but permanent care . . . but if you are 

going to shut up all the idiotic and feebleminded 

where they can do no harm, you must do it in 

some cheap way. . . ." But Kerlin had a ready 

answer to the problem of cost: 

As a further practical suggestion, I wish to add 

that any general State institution for the care of 

the feebleminded should embrace a department 

for the care of the moral imbeciles. They can be 

indentured to work. They can . . . be drawn into 

sympathetic contact with helpless idiocy and be 

made to work towards its nourishment. They 

need not be taught to read and write; for the 

school, as ordinarily kept, contributes to their 

deterioration . . . I trust that there are . . . many 

in this Conference who may see in these 

suggestions a line to be followed which will 

lead to the relief of many of our institutions, to 

a better understanding of this worst form of 

moral perversion, and to a partial arrest of the 

apparently increasing degradation of our race. 

(loc. cit.) 

Thus were the ingredients assembled for the 

dehumanization of individuals who are mentally 

retarded and for their mass care in custodial 

institutions: 

 The institution was an established model. 

 Its educational mission was not subordinate to 

custody. 

 Its clientele was firmly linked to poverty, 

crime, insanity, prostitution, alcoholism, and 

immorality in general. 

 The mildly retarded group included a class 

of dangerous "moral imbeciles" who should be 

permanently sequestered. 

 Mildly retarded people should be indentured to 

work, to earn their own support and to support 

by their labor those more helpless. 

 The cost of institutional care can be 

drastically reduced by use of this labor. 

An image was emerging of an "alien" in the 

family of man, dangerous and threatening to social 

decency. Some features of the emerging image 

were still obscure. Rapidly they were to be 

highlighted.

8 
The Demonology of the Defective 

Four scientific developments, which became 

popularized in distorted form, helped to fill in the 

final image of the feebleminded individual as a 

depraved menace to society: Darwinism, 

sociological research, Mendelian genetics and 

psychometry. 

The evolutionary theories of Charles Darwin 

emphasized biological adaptation of species to 

procreate efficiency, available food supply, and to 

natural hazard. The "survival of the fittest" 

recognized that those species and their mutations 

which were best adapted to the conditions of the 

environment tended to perpetuate themselves, 

while poorly adapted species tended to disappear. 

Popularization confused "fitness" with 

"worthiness" which, in the case of middle-class 

man in industrial society, became identified with 

intelligence, industriousness and conformity to a 

specific moral code of decency. The very high 

mortality of those who were severely and 

profoundly impaired—"idiotic"—provided 

confirmation of the law as a natural phenomenon, 

while the linkage of feeblemindedness with poverty and its associated evils made it clear that 

mentally impaired people were "unfit" to survive 

in a world in which competition was the first law 

of nature. The popular understanding of Darwin 

as a bastion of social decency is expressed by the 

Governor of Massachusetts in 1883: 

When the State shall have sufficiently educated 

every bright child . . . it will be time enough to 

undertake the education of the idiotic and 

feebleminded. I submit that this attempt to reverse 

the irrevocable decree as to the survival of the 

fittest is not even kindness to the poor creatures 

who are at this school . . . none of the pupils have 

become self-supporting . . . a well cared-for idiot 

is a happy creature. An idiot awakened to his 

condition is a miserable one. 

(Gov. Butler, Address to Mass. Legislature, 1883) 

Galton in 1901, seeing threatening implications in Darwinian theory with respect to the 

human race (Possible Improvement of the Human 

Breed, 1901), proposed that by eliminating the 

unfit, man could actively assist nature in 

promoting the survival of the highest quality of 

human being. Thus the negative eugenics 

movement, based on "social Darwinism" was 

launched. 

In 1877, Dugdale, a prison inspector, 

published his famous study of the Jukes family. 

(Dugdale, R.L. The Jukes, New York, Putnam, 

1877.) This was a sociological description of the 

frequency of social degeneracy in a 

consanguineous family group, with some 

commentary on the economic costs of society. 

Dugdale ascribed the misfortune of the Jukes to 

the unfavorable environments in which they grew 

up. The treatise was seized upon, however, as 

evidence of the hereditary nature of degenerative 

tendencies and such family histories were 

proliferated during the next several decades. 

Meanwhile, a myth began to form which 

ascribed to feebleminded individuals an 

abnormally strong and utterly ungovernable 

sexual drive. Even Howe had been alarmed at the 

"manifestation of the amative feelings" among 

"idiots" and concluded that "the most lamentable 

and certain, though less frequent cause of 

congenital idiocy, is the lasciviousness of some 

female idiots, whose illegitimate offspring are almost always, like themselves, idiotic and lustful." 

From Appleton's Journal of Popular Literature, 

Science, and Art, February 12, 1870. 

There is little doubt that the destitute, 

marginally incompetent woman was victimized 

by a raw and brutal society "tossed from 

poorhouse to jail and from jail to poorhouse in 

which the last trace of womanhood in them is 

destroyed." (Mrs. C. R. Lowell, 6th Conf. of 

Charities & Corrections Proc. 1879.) This led in 

New York to the establishment of a separate institution for feebleminded women at Newark, 

and to the general practice of the rigid and 

absolute separation of the sexes at all institutions

9 
"The isolation from contact or close 

knowledge of the opposite sex is wholesome in the fact that there are no conditions 

to excite sexual instincts, which in the 

defective are usually abnormal." 

(D. W. Winspear, 22nd Natl. Conf. of 

Charities and Corr. Proc. 1895.) 

Fernald, the acknowledged leader for 30 

years in the field of mental deficiency, had this 

to say in 1893: "The tendency to lead dissolute 

lives is especially noticeable among the 

females;" and in 1904: "It is well known that 

feebleminded women and girls are very liable 

to become sources of unspeakable debauchery 

and licentiousness which pollutes the whole 

life of young boys and youth in the 

community;" and again in 1912: 

"feebleminded women are almost invariably 

immoral, and if at large usually become carriers 

of venereal disease and give birth to children 

who are as defective as themselves. The 

feebleminded woman who marries is twice as 

prolific as the normal woman." (J. of Psychoasthenics XVII, 1912, pp. 70-91.) 

Gregor Mendel, whose quiet studies of 

heredity had lain dormant for decades, was 

rediscovered in 1900 and provided a new and 

potent weapon in the indictment of those 

who are deficient. It had long been suspected 

that feeblemindedness was inherited. Now 

science gave the suspicion an authority which 

was quickly seized upon. 

The Mendelian laws lent themselves to the 

belief that feeblemindedness and intelligence 

constituted distinct and unitary characters as did 

blue and brown eyes, hence would breed as 

recessive and dominant characteristics. 

Normal people may be the carriers of the 

unsuspected hereditary taint, and the 

feebleminded people themselves would 

inevitably transmit the taint to their offspring. 

Now the true import of the Jukes family 

became clear—not environment but heredity 

was the cause; and other family histories were 

rapidly brought forward as further appalling 

exhibits. 

In 1912 Goddard published the most 

famous of all in the story of the Kallikak 

family. (H. H. Goddard, The Kallikaks, 

N.Y., MacMillan, 1912), which was taken as 

indisputable proof of the genetic origin of 

feeblemindedness. The cause of at least 80 

percent of feeblemindedness was asserted to be 

hereditary. And feeblemindedness was said to 

be the overriding cause of the degeneracy of 

lower class humanity and the potential 

undermining of the human race. 

One final scientific discovery was added to 

the evidence of the menace from which 

society must be protected. In 1905 Binet and 

Simon developed a technique for distinguishing among children in the schools of 

Paris those who could succeed in standard 

school work and those who could 

not. The Binet test, based on a sampling of 

verbal and intellectual performance characteristics of children of successive ages, 

developed an age-scale by which the degree 

of retardation or advancement could be 

measured against a norm. Thus the science of 

psychometrics was born. 

Binet would have been appalled at the 

uses to which it was put in the United 

States. 

It was seized upon and popularized by Dr. 

H. H. Goddard, the director of research at the 

Training School at Vineland, N.J., and by 

Kuhlman, Terman, and others who refined, 

perfected, and applied this new and powerful 

instrument. 

Originally yielding a measure of "mental 

age," Goddard was able to reclassify deficient persons in terms of the maximum 

mental age attained: the idiot not more than a 

2-year mentality, the imbecile between 2 and 

4 years, and the moron 7 to 12 years. 

Stern (Stern, W., The Psychological 

Methods of Testing Intelligence, New York, 

Warwick, 1904) and Terman (Terman, L. M., 

The Measurement of Intelligence, N.Y., 

Houghton Mifflin, 1916), in the United States, 

by taking the ratio of mental age to 

chronological age, with 16 as a constant at 

intellectual maturity, invented the intelligence 

quotient or "I.Q." 

10 
Thousands of studies of the I.Q. led to the 

conclusion that it is a constant characteristic of the 

individual, determined by heredity from the 

combined I.Q.s of the parents, unalterable by 

environmental influence or training and infallible 

(subject to statistical errors of measurement) in 

identifying the categories of intellectual endowment 

in children, from idiot to genius along a normal bellshaped curve of frequency distribution. 

Binet himself wrote: "Some modern philosophers seem to have given their moral support to 

these deplorable verdicts by asserting that the 

intelligence of an individual is a fixed quantity which 

cannot be augmented. We must protest and react 

against this brutal pessimism, we shall try to 

demonstrate that it has no foundation," (Trans. from 

Les Idees Moderne sur les Enfants, 141, Paris, 

Flammerion, 1911). 

Goddard not only validated Binet's instrument 

on several hundred mentally deficient children 

previously categorized by other clinical names, but 

applied it also in a large sampling of school children. 

In 1913 he shocked the world by revealing that no 

less than 3 percent of all school children are 

feebleminded, that beyond the well-known cases of 

idiot and imbecile is a much larger class of 

feebleminded of mild degree but of definite 

incapacity (for which Goddard coined the term "moron"). No amount of education, it was believed, 

would alter the constitutionally endowed I.Q., and 

this mistaken notion confirmed the menace to 

society of mentally deficient people, especially of the 

moron whose feeble intelligence may have been 

masked by his apparently normal appearance (H. H. 

Goddard: "The Improvability of the Feebleminded," 

J. of Psychoasthenics 17: 131, 1913). 

Now, indeed, the full indictment could be stated; 

and it was, most eloquently, by Fernald: 

The social and economic burdens of uncomplicated 

feeblemindedness are only too well known. The 

feebleminded are a parasitic, predatory class, never 

capable of self-support or of managing their own 

affairs. The great majority ultimately become public 

charges in some form. 

They cause unutterable sorrow at home and are a 

menace and danger to the community . . . Every 

feebleminded person, especially the highgrade 

imbecile, is a potential criminal . . . At least 25 

percent of the inmates of our penal institutions are 

mentally defective . . . It has been truly said that 

feeblemindedness is the mother of crime, pauperism 

and degeneracy . . . The recognized field of mental 

defect has been gradually extended and widened . . . 

It is most important that the physician should 

recognize the so-called "borderline" cases, where the 

intellectual defect is slight, and is overshadowed by 

the moral and criminal tendencies . . . . 

The most important point is that feeblemindedness is 

highly hereditary . . . No feebleminded person should 

be allowed to marry or become a parent . . . The 

normal members of a definitely tainted family may 

transmit defect to their own children. Certain families 

should become extinct. Parenthood is not for all. 

(W. E. Fernald, "The Burden of Feeblemindedness," J. of Psychoasthenics, XVIII, 1912, pp. 

90-98) 

Campaign of Control 

With the depravity of feeblemindedness now 

firmly established as a shameful blight in familial 

germ plasm and as the major source of society's ills, 

two problems were now paramount: how to prevent 

feeblemindedness from occurring and how to 

control those in whom it did occur.

Elwyn Institute

The cobbler's shop at the Pennsylvania Institution for Feeble-minded 

Children, Elwyn, Pa. (now Elwyn Institute), in the late 1800's. 

11 
Although Fernald and others continued to 

insist that the psychological measurement of I.Q. 

was insufficient to diagnose true mental 

deficiency, in practice this became increasingly the 

sole criterion. The increasing application of the 

Binet test in the schools, led to wild popular (and 

even professional) estimates of the prevalence of 

mental defect. The eugenics movement, although 

containing a core of responsible and 

scientifically cautious advocates, became a 

bandwagon for the alarmists and a major vehicle 

for the widespread popular dissemination of 

grossly distorted myths concerning the "menace 

of the moron." 

The urgency of educating the public on as 

wide a basis as possible was recognized by 

Fernald: 

Education in the broadest sense must be our 

chief weapon. We must educate the 

lawmaker, we must educate the judges, the 

doctors, the teachers. We must educate the 

children who go to the high school, and 

college, and normal school, and the medical 

school. We can thus leaven the population 

and they will spread the information to the 

rest of the public who are capable of being 

educated. We may deal with the other half 

of the community by our segregation and 

our sterilization propositions, or by other 

means (Editor's emphasis). . . . 

The States in the Union which are successfully 

handling this matter are the States where an 

intelligent campaign of education has been carried 

on for more than a generation. 

(In discussion of Fernald's paper, "the 

Burden of Feeblemindedness," Natl. 

Conf. of Charities and Corr. Proc. XVII, 

1912, p. 109) 

It is difficult to believe that Fernald literally 

intended that one half of the population would 

sanction the segregation and sterilization of the 

other half! No doubt that was not intended, but 

there is no doubting the enormous and successful 

campaign of indoctrination on the negative and 

dehumanized image of the mentally deficient 

population carried on under the professional 

leadership of Fernald and his associates. 

Of all the alternatives available to meet the 

"menace of the moron," segregation seemed best 

designed to fill both the need of prevention and the 

need of societal protection. The most drastic of all 

methods—extermination—was now and then 

hinted at, but aside from moral revulsion, the obvious massiveness of the problem, if one includes 

all the presumed carriers of hereditary taint, rather 

precluded that solution. 

Involuntary sterilization appeared to be more 

promising than restrictive marriage laws in 

preventing procreation, but both measures were 

adopted in many States in the first two decades of 

the century. Neither was really effective and only 

sporadically enforced. 

Since the use of congregate segregation in 

State institutions had already become well 

established and had, indeed shifted from solely 

educational to predominantly custodial purposes, it 

furnished a strong foundation for a program of 

control. Already the arguments for small, homelike 

establishments had been long forgotten. Kerlin in 

1890 had shaken off the fetters of size: 

The feebleminded and idiotic can be wisely and 

cheaply cared for, under a large community 

organization—The larger the better the 

classification (Author's emphasis): for classification can be more readily, wisely and pleasingly 

made in proportion to the increase in buildings 

and inmates. Hence, let us fix no limitations to 

the growth of an institution of this class. 

(I. N. Kerlin: 38th Ann. Rept. Pa. Trng. 

Sch., 1890, p. 19) 

How could the State afford such massive 

custodial accommodation? The answer had 

already been found, first in the use of Kerlin's 

dangerous but physically capable "moral 

imbecile," and, by extension, in all those of "weak 

mind and will" but of "strong body and physical 

appetite," whose labor would support not only 

themselves but also those less fortunate who were 

unable to work. 

Kerlin became positively rhapsodic over the 

prospect of"... 'villages of the simple,' made up 

of the warped, twisted, and incorrigible, happily 

contributing to their own and the support of those 

more lowly cities of refuge in truth; havens in 

which all shall live comfortedly, because no longer misunderstood or taxed with exactions beyond 

their mental and moral capacity. They shall 'go 

out no more' and 'they shall neither marry nor be 

given in marriage,' in those havens dedicated to 

incompetency." (I. N. Kerlin: Pa. Trng. Sch. 

38th Ann. Rept. 1890, p. 21.)

12 
The bakery for the department of the training school at Elwyn in the 

late 1800's. The men are referred to as "our boys." 

A superintendent of the Ohio institution in 

the mid-1880's made an often quoted boast to 

his legislature: "Give me the land (1000 acres 

will suffice) and allow me to gather the 

idiotic and imbecile population now under 

public care together, and I agree that the 

institution shall be made self-sustaining, and 

I will pay back to the State the price of the 

land." (A. G. Byers, Disc. on care of the 

feebleminded, Natl. Conf. on Charities and 

Corr. Proc. 1890, p. 441). 

The final model was the Colony developed at the Waverly site of the Massachusetts 

institution by Fernald in 1910. There, on 

several square miles of farm acreage, groups 

of retarded people lived, worked, and 

supported the institution to a large degree, 

producing not only all the food required, but 

also fabricating in shops the clothing, furniture, 

and other furnishings needed for the institution. 

The purposes of the Colony system, as 

devised by Fernald, was really two-fold. 

Certainly it was a means of cost-cutting in a 

situation where the number of residents were 

mounting much faster than supporting State 

funds. 

But Fernald had never completely abandoned the hope of educating and restoring to 

community life some of the most responsible 

of the feebleminded. 

Years later, Fernald made the first of a 

long series of followup studies of institutional paroles and found his hopes were far 

better vindicated than his fear. The 

publication of his findings and subsequent 

retraction of many of his earlier views attested 

to the character of this leading figure of his 

time in the field of retardation. 

The model initiated by Fernald was followed in many States, but not always with his 

dual purpose. Large farm areas attached to the 

central State institution used the labor of an 

increasing population of mildly retarded 

young men, committed at puberty; in all too 

many cases their commitment became a lifelong indentured servitude. If the complaint 

was made that they were worked too hard, 

the reply had been supplied earlier by Dr. 

Bernstein, Superintendent of the Rome State 

School in New York: 

You cannot work those boys too hard. If 

they work them as hard as they can they 

will not practice the vices to which the 

gentleman alludes . . . they work so that 

when they come in at night they go to bed 

and sleep. Then they get up next morning 

and go to work again, and I am very sure 

that the farmers who work them the hardest 

are keeping them the best in line in good 

behavior. 

(Bernstein, in disc. of Fernald: "The 

Burden of Feeblemindedness," J. 

Psycho-asthenics, XVII, 1912, p. 105) 

13 
Wolfensberger has shown that the 

claims of cost reduction made by many of the 

superintendents, based on economics of scale and 

resident work, were in fact exaggerated (W. 

Wolfensberger: The origin in nature of our 

institutional models, in Changing Patterns in 

Residential Services for the Mentally 

Retarded, PCMR, 1968, pp. 118 ff). 

Nevertheless, per capita annual cost was kept 

remarkably low. 

Converted into 1967 dollar values, the 

mean average cost from 1887 to 1903 was $781 

or $2.14 per day; from 1909 to 1949 the mean 

annual average was $666 or $1.82 per day. It 

was only following World War II in 1946 

that the cost curve began a significant rise 

which reached a level of $2,676 in 1966, or 

$7.33 per day. The nature and reasons for 

that rise will be discussed later in the report. 

Economies were affected by reducing 

services and amenities to a minimum, increasing numbers to a maximum and using the 

unpaid labor of residents with unconscionable 

intensity. However, the attempt to completely 

segregate the population of mentally retarded 

persons was an utter failure and at an 

appalling cost in dehumanization, exploitation, 

and degradation. 

A cardinal element in Fernald's proposals 

had always been the identification and 

registration of all feebleminded cases as a 

necessary means of control. This was a twoedged embarrassment. Until psychometric 

testing was invented, no reliable casefinding method existed. But when intelligence testing did become available it 

led to such staggering numbers of presumed 

feebleminded that the task of building a 

registry (especially of those beyond school 

age), became staggering, and the institutionalization of such a mass of people 

utterly impossible. 

Although the severely defective person 

could readily be identified and early placed 

in custody, the mildly retarded one presented a 

different picture. Judges and other authorities 

were reluctant to order indefinite institutional 

sequestration or sterilization of individuals 

whose only "crime" was a low I.Q. which 

might at some time make him a social problem. 

In spite of the intensive campaign led by the 

institutional superintendents and supported by 

the eugenics movement, the proportion of 

identifiable retarded people in public and 

private institutions never went beyond about 

10 percent. Even so, the institutional population did continue to expand and at a rate higher 

than the expansion of facilities to house them. 

The result was chronic overcrowding and the 

eventual development of long waiting lists. 

In 1912, E. R. Johnstone, Superintendent of 

the Training School at Vineland, put forward 

a plan which seems to have represented a 

trend of thought answering to the problem of 

total control at manageable cost. His proposal 

recognized the fact that special classes were 

beginning to emerge in the public school 

systems of the larger cities. This movement by 

1912 had gained a substantial foothold. 

Johnstone's "Plan for the Care of the 

Feebleminded" for the State of New Jersey 

was this: 

1. All feebleminded children under the age of 

12 (or until they become dangerous sexually or 

otherwise) excepting idiots, should be sent to 

the Special Classes in the public schools. The 

parents will thus bear the expense of housing, 

14 
feeding, and clothing their own children for 

these years. The only public expense will be 

that of the school, and if the training is largely 

physical and manual, much good will be 

accomplished. 

2. Cities with a sufficient number of 

feebleminded children between the ages of 12 and 

20 will establish municipal residential institutions 

which should be under the control of the 

educational authorities. Children from the 

Special Classes would be committed to the 

institution at the proper age. 

Here the expense must be borne by the 

municipality, the parents contributing what they 

are able, and the State assisting as it does in 

county care of the insane. Johnstone notes that 

the number to care for at this age will have decreased, "for the death rate is not negligible." 

The Training School for children at Vineland 

would be able to care for the children of this 

group (12-20 years) from the smaller 

communities under this general plan. 

3. Those who are 21 years old and over "and 

the number have still further decreased," can 

be cared for by the State at its central custodial 

institutions at Vineland (women) and Skillman 

(men), and the transfers should be made directly 

from the institutions for children to the State—

the parents contributing what they are able as 

they now do. 

4. "All idiotic cases—those whose personal 

habits are unclean and who need special 

care—should be cared for in the above 

institutions, or better still in the almshouses." 

(E.R. Johnstone: A Plan for the 

Care of the Feebleminded, The 

Training School, Vineland, N.J., pp. 

97-98) 

This proposal, while never adopted, illustrates the extent to which the concept of 

control was developed at the peak of the 

period of indictment. 

The paradox is that the plan to segregate all 

mentally deficient people from society in massive 

isolation came nearest to fulfillment only when 

the justification for it was undermined. This is 

shown most clearly by the growth curve of 

institutional populations from 1850 to 1975 (see 

Figure 1). 

During the educational period of Howe, 

Seguin, and Wilbur, growth was slow even 

though facilities were often crowded. Wilbur 

estimated a total of 1,282 residents in all 

institutions in 1874, which would represent a ratio 

of .03 per thousand of the U.S. population. 

By 1900, with the custodial character of 

institutions fully established, the number had risen 

to only 7,000 or a rate of .09 per thousand of 

general population, and following the peak of the 

eugenic campaign in 1925, approximately 40,000 or 

.34 per thousand. 

By that time, the fallacies of the negative 

eugenic movement had been well exposed, the 

promise of special education and adaptations to 

community life had become persuasive to the 

leaders of the field, as represented in the White 

House Conferences of 1919 and 1930. 

But it was in the period of 1925 to 1950 that 

institutional populations grew at the greatest rate 

ever, rising to 128,000 in 1950 or a rate of .83 per 

thousand population. 

After 1950 they continued to rise, reaching a 

final peak of 190,000 in public institutions in 1969, 

or a rate of very nearly 1 per thousand population. 

Since that time, the deinstitutionalization 

movement, accompanied by growth of 

community services, has brought about a reduction 

for the first time since the institutional movement 

began. 

In 1975, institutional population was estimated to 

be between 165,000 and 170,000 with the rate 

reverting to a level of .78 per thousand of 

population, or less than that of 1950. 

Why did the great influx occur in the 1925 to 

1950 period? One reason which has persisted to 

the present is that medical science has had 

spectacular success in saving and prolonging life, 

reducing infant mortality and prenatal loss, 

resulting in an increased survival of moderately to 

profoundly retarded residents. 

Johnstone's comfortable 1912 notation that the 

burden of care progressively lessens with age 

"because the death rate is not negligible," was not 

nearly so true in 1930, '40, '50, and '60.

15 
Secondly, the pattern of institutional care 

had become a well-established social 

institution, with substantial investment in 

buildings and land, making it easier to enlarge 

and overcrowd existing facilities than to 

develop wholly new techniques and 

resources for local home and community 

management. 

Thirdly, the ideology of the demonic, 

fearsome defective had been well ingrained into the American consciousness and 

could not easily be forgotten, even though 

knowledge had progressed far beyond that 

stage; cultural lag is a powerful factor in 

determining social behavior. But most 

important of all, the great depression of the 

1930's, followed by world war in the 

1940's, created a situation of greater 

hardship in the family and a diversion of 

public resources, first, to providing basic 

social and economic security to the population at large, and second, to the astronomical costs of global war. 

Why did institutionalization still continue to rise during the period of recovery 

and growing affluence of the 1950's and 

1960's? Partly for the same reasons: cultural 

ideological lag and the persistence of an 

established and vested institutional 

AAMD 

Edouard Seguin, AAMD Founder 

and President, 1876- 77. 

mechanism. Although public pressure was 

causing some improvement in the quality 

of residential care in the institutions, the 

movement toward new community resources was slow in developing. 

The parent movement, together with 

professional advancement, drew attention to 

the abominable conditions of the institutions 

and generated slow and often superficial 

reforms which made it somewhat less painful 

to place one's child in an institutional setting. 

An overriding need in the parent was to 

ensure the permanent security of a substantially handicapped child. With community 

resources as yet non-existent, the institution 

was the only resource available for the child 

unable to care for himself. Massive attack on 

the problem was necessary in order to bring 

about a significant change. 

Education for 'Exceptional Children' 

Special education for the mentally deficient was born from contrary roots of 

compassion and intolerance. 

We have noted that the first institutions for 

"idiotic children" in the mid-nineteenth 

century were schools, designed for human 

beings with limited and undeveloped capabilities who might, by careful teaching, be 

made more self-sufficient. But that effort 

was subverted by the conversion of the institutions to purposes other than education. 

Special education was born again at the 

century's end, not wholly out of compassion 

for the "backward" child, but also out of 

impatience with his presence in the public 

school classroom where compulsory 

education required him to be. Another 

half-century had passed before the motive of 

compassion once again predominated and 

led swiftly to the claim of educational 

opportunity as a right. 

The early pioneers, Seguin, Howe, 

Johnstone, Wilbur, and others, were convinced that the dependencies of the "idiotic" could be reduced and their 

competencies increased by careful, patient 

teaching. 

16 
Elwyn Institute 

They were influenced by traditions of 

thought stemming from John Locke and 

Rousseau through Condillac and the "Saint 

Simon" school and by the early efforts of Itard, 

followed by Bellehomme, Falbret, and Seguin 

in France, Guggenbuhl in Switzerland and 

Saegert in Germany. 

The emphasis was on the "Natural" 

learning of active encounter and experience 

guided by warm and sympathetic teachers, 

leading into the "physiological" method of 

sensory-motor stimulation developed by Seguin. 

This tradition was the forerunner of the 

Montessori schools, and the later functional 

educational theories of John Dewey. In the end 

the tradition led to the special education 

methods of 1950-1975. 

During the period of the rise of public 

education in the United States, however, the 

principal emphasis was on formal intellectual 

learning which made the "Three R's" central 

and all-pervasive. Ability to read, write and 

compute were, of course, of great practical 

importance for success in the developing 

industrial-commercial society, and the presence 

of upward mobility in social status was 

matched by upward mobility in educational 

attainment. 

The colleges and universities, with their 

intellectual roots in the classics and their social 

roots in the higher professions and privileged 

status, furnished the model for the purposes and 

methods of grammar and high school education. 

School learning was "book" learning, with 

emphasis on linguistic and formal 

conceptualization. It reflected the evolution of 

middle-class values and did not by any means 

reach all children. 

As the institutions for mentally deficient 

children and adults developed and acquired an 

increasingly custodial character, their educational 

role changed. 

In most public institutions little effort was 

made to train severely and profoundly deficient 

residents even in the rudimentary functions of 

toileting and feeding. "School" gradually 

departed from the functional methods of Seguin 

and Howe and was increasingly modeled on the 

formal academic training of the public schools, 

with little practical benefit to the subject. As 

larger numbers of mildly retarded persons 

became more institutionalized and were used to 

provide institutional labor, training became less 

academic and more utilitarian in terms of work 

performance. 

"School" learning even became looked 

upon as a dangerous practice (see the interesting 

interchange between Dr. Bernstein, Supt. of the 

Rome, N.Y. State School and Dr. Fernald, Supt. 

of Waverly, Mass.: J. of Psychoasthenics. Vol. 

18, p. 59 1913. Dr. Bernstein: "The patients 

who give us the most trouble are the ones who 

have been taught to read and write. . . ." Dr. 

Fernald: "I think these patients would be much 

more troublesome if they did not learn to read 

and write .. ."). 

Elwyn Institute

17 
In any event, the educational objectives 

and methods which had initiated work with 

retarded persons were virtually lost as the 

negative image gave rise to increasingly 

repressive practices. 

Even by 1949, while the statutes of most 

States specified that the school program 

was to be included in the function of the 

institution, it was clearly secondary to their 

custodial and protective responsibility, and 

in most instances was not under the direction 

of the State educational authorities. (Elise H. 

Martens, "Some Legislation for Education of 

Exceptional Children," U.S.O.E. Bulletin No. 

2, 1949, U.S. Government Printing Office, 

Washington, D.C.) 

During the "dark age" of the indictment 

of retarded people, a bright spot which 

kept the fires of inquiry burning was the 

private Training School at Vineland. Under 

the superintendency of E. R. Johnstone, 

Vineland maintained a strong and devoted 

belief in the ability of retarded persons to 

learn, and in the responsibility to learn all 

that can be known about them. 

Before 1900, Vineland was assiduously 

training teachers for retarded children. 

Goddard, who succeeded in lighting the 

bonfire of the negative eugenics movement, 

was nevertheless an outstanding director of 

research. The work of his successor, E. A. 

Doll, in developing the Vineland Social 

Maturity Scale was a landmark effort. And 

for many years the Bulletin of the Training 

School was the vehicle for the most 

progressive reporting of theory and practice 

in the field. 

In the meantime, public education was 

having its difficulties, especially as the social 

problems of the cities grew with expanded 

populations and their concentration in 

polyglot slums. 

The rise of compulsory education, 

which was designed in part to keep children 

off the streets with the passage of childlabor laws, added to the difficulties. 

Discipline became increasingly difficult, 

authoritarian control and routinized curriculum increased, and "problem children" 

multiplied. As a result, special classes came 

into existence in the cities, largely for "unruly, 

disciplinary or truant boys." 

New York City opened such classes in 

1874 and Cleveland a year or two later; 

others followed. Providence, Rhode Island 

developed a school for behavior cases in 

1894 but two years later opened an extension 

for "backward children." This marks the 

beginning of special education for retarded 

students in the public schools of the United 

States (J. E. W. Wallin, Education of 

Mentally Handicapped Children, N.Y. 

Harper, 1955). 

Germany had led a movement in Europe 

initiated by Stotzner in 1864 and resulting in 

500 classes enrolling 12,000 children in 1905. 

(Maenel, B. Auxiliary Education—The 

Training of Backward Children, New 

York, Doubleday, 1909) 

Within ten years a dozen cities followed 

suit, with some establishing two types of 

special class, one for the intellectually 

limited, the other for the emotionally or 

behaviorally maladjusted. In most cases, 

however, there was a mix of the two and 

many of them became no more than a 

dumping ground for children whose teachers 

found them for any reasons difficult to handle. 

Not uncommonly, the teachers of these 

special classes and schools were qualified 

more as disciplinarians than as special educators. 

At the same time, and especially in smaller 

communities and in the one and two room 

rural schools, slow learning and retarded 

children were frequently retained in regular 

classrooms, learning little, but tolerated so 

long as they were docile.

18 
By 1922, 133 cities in 23 States were reported by 

the U.S. Office of Education to have enrollments 

of 23,252 pupils in special education classes of all 

types. By 1936 this had increased to 99,621 pupils in 

643 cities in 43 States. State laws providing for 

special education of retarded children began with 

New Jersey in 1911 and extended to 14 States by 

1930, and nearly all States in some form by 1955. 

The State laws varied widely. Most of them 

initially made provisions for special classes only on a 

permissive basis and without special subsidy. 

Although New Jersey's law was mandatory, 

from the beginning implementation was extremely 

fragmentary. 

Some States financed excess costs in one form or 

another; some did not. Some required specialized 

teacher training; some did not. Some provided 

State supervision; some did not. 

Practices within cities and from school to 

school were extremely diverse. The number or 

proportion of pupils, as well as the reasons for 

placement, varied between wide extremes. 

One characteristic that was nearly universal to 

1940 was the right of the school to exclude a child 

who was judged "ineducable." This meant, in 

practical terms, judged incapable of making 

discernible progress in the formal academic 

curriculum. 

As intelligence testing became popular, children 

were admitted to special classes only if they had 

I.Q.s of at least 50 or 55. The maximum I.Q. was 

sometimes 75, sometimes 85, depending on whether 

a distinction was made between "slow-learners" 

or "backward" children and the 

"feebleminded." 

In only a few instances—New York City, for 

example—more severely retarded children (later 

classified "trainable") were admitted to special 

categorical classes. This practice was terminated 

in 1929 and the lower limit set at 50. 

Knowledge and human interest in the educational 

development of retarded children was slowly 

recovering from the devastating demonology of the 

1890-1915 period. This fact is evidenced in the reports of the White House Conference on Child 

Health and Protection of 1930. A special section on 

education of the handicapped and gifted included an 

extensive report on the mentally deficient. E. A. 

Doll of the Training School at Vineland made a 

substantial contribution to the section. (Committee on 

Special Classes Section III F, Special Education 

of the Handicapped and Gifted, 1930 White 

House Conference on Child Health and Protection, 

pp. 439-ff.) 

This report recognized the rapid increase in 

classes for retarded children between 1910 and 1920 

with a subsequent falling off between 1922 and 1930. 

The decline was ascribed mainly to the lack of 

clear definition of purposes in terms of "social and 

educational objectives and pedagogical methods," 

and to the composition of classes using only the I.Q. 

as criterion with "no attention paid to questions of 

nationality, social status, race, special ability or 

other diagnostic factors." 

The Conference made the following recommendations: 

1. State laws should be further developed, guided 

by fundamental, educational, and economic 

principles with a separation of regulation from 

legislation. 

2. Clear distinction should be made of 

"educable" mentally retarded children from 

those of the lowest grades, those from 

inadequate and vicious surroundings, defective 

delinquents and orphans, neglected and 

dependent types, all of whom were said to 

need institutional treatment. 

3. Provision should be made for the 

approximately 2 percent of children 

definitely feebleminded (i.e., I.Q. below 70), 

and for five percent of borderline subnormals 

(i.e., I.Q. 70 to 85), with a definitive policy 

on the part of a community for the handling 

of the low-grade feebleminded (i.e., I.Q. 

below 50). "It seems now to depend too 

often upon whim or political influence" (p. 

480)—In addition, the conference 

recommended that provision for the subnormal 

and borderline subnormal should extend into 

Junior and Senior High School locations, 

with emphasis on vocational courses, 

supported by a Vocational Guidance Bureau 

and with follow-up supervision in industry. 

19 
4. Nomenclature used should be that of 

Special Classes, deemphasizing labels 

in terms of type of defect. 

5. Lack of constructive publicity has been 

detrimental to the success of special 

education programs; consequently, the 

positive results of special education in the 

"reconstruction" of children should be 

emphasized and supported by the U.S. 

Office of Education. 

6. Careful investigation and intensive 

research is needed in almost every phase 

of special education, since the work is 

still at a very tentative stage. 

The precariousness of the special education 

program in 1930 was made especially clear in 

a vigorous and critical appraisal by E. A. 

Doll of the operation of programs in New 

Jersey, despite the relative progressiveness 

of the laws of that State (E.A. Doll, State 

Educational Service, Report of the 

Division of Education Bulletin No. 7, 1930, 

U.S. Government Printing Office, 

Washington, D.C.) 

By 1940 the pattern of eligibility for special 

education of the retarded was becoming 

fairly uniform among the States, most 

commonly requiring a mental age of not 

less than 5 years and I.Q. not less than 50 

(Delaware was an exception, having a 

minimum of 35). The minimal mental age 

reflected the continuing academic emphasis 

of the programs and a disinclination to 

provide for children with less than mild 

retardation. 

The importance of early training was 

not yet recognized, nor was the training in 

perceptual motor skills and special adaptation 

emphasized (U.S. Office of Education 

Bulletin No. 6, 1940, U.S. Government 

Printing Office, Washington, D.C.). There 

is evidence, however, that programs were 

extended in many instances into prevocational training for older pupils (usually 

with an age limit of 16 or 18). 

In 1938, the U.S. Commissioner of Education called the first meeting of State directors of special education to discuss 

common interests and policies. 

In addition to a general assertion that 

special education for exceptional children 

should be an integral part of any adequate 

educational program, the conference espoused 

several progressive principles: Special 

education should meet the particular needs of 

each exceptional child, with the aim of selffulfillment. Regular classes should be as 

flexible as possible in adjusting to individual 

needs, and "opportunity should be afforded for 

all types of exceptional children to participate 

with children in regular classes in those 

activities in which they can work with 

normal children without detriment to either 

group." The conference held that each State 

should establish standards of admission to each 

type of special class, although identification and 

assignment should be based on competent 

psychological, educational, social, and 

medical study of the child. (O.E. Bull. No. 6, 

1940) 

Elise Martens, for many years Chief of the 

Section on Exceptional Children and Youth in 

the U.S. Office of Education, was influential 

in promoting the educational interests of 

exceptional children on a broad scale and with 

a sense of the Federal responsibility in the field. 

In her 1949 report ("Legislation for 

Education of Exceptional Children," U.S. 

O.E. Bulletin No. 2, 1949), she pointed out 

that educational provision for blind and deaf 

children were far in advance of those of other 

exceptional groups, with the physically 

handicapped next in order. She pointed out 

that while some form of legislation for special 

education in local school districts existed in 41 

States, only 34 provide any form of State 

financial participation, without much "State 

authorization is likely to prove ineffective." 

Only 16 States prior to 1949 provided State 

support for classes for mentally handicapped 

children, but four more extended such aid by 

statute in that year. Already in 1949 parents' 

demands for equal education opportunity for 

their retarded children were being felt by the 

local school boards and in State legislatures. (E. 

H. Martens: "State Legislatures and Exceptional Children in 1949," Exceptional 

Children, March 1950, pp. 161-164; Eu20 
gene Doll: "Trends and Problems in the 

Education of the Mentally Retarded," 

AJMD 72, 2. Sept. 1967.) 

"Nothing succeeds like success," it is said, 

but in the case of the mentally retarded, it has 

taken decades for the evidence of success to 

soak into public consciousness. 

Thus, with the "feebleminded" seen as 

useless, incompetent, potentially dangerous and 

totally parasitic beings, few noticed that in 

reality retarded individuals were capable of 

substantial degrees of adaptation to social life. 

This fact was especially true of mildly 

retarded persons. Despite identification as 

retarded children, or years spent in institutions 

or in special classes, this tendency to 

disappear from the record as adults went 

unnoticed until special inquiries were made as 

to what happened to them. To a degree, 

moderately and severely retarded persons 

also seemed to "disappear," but they tended 

to be more often the victim of self-fulfilling 

prophecies: since they are doomed to 

dependent incompetency, they are kept in a 

state of dependency which ensures that they 

will remain incompetent or become even 

more so.

Follow-up studies of retarded adults released from institutions or graduated from 

special classes have supported the general 

conclusion that a high proportion of retarded 

adults can become satisfactorily employed, 

socially integrated, and maritally successful. 

Failures are related to poor family conditions, 

depressed environments, lack of adequate 

training, and absence of supervisory supports. 

(See H. V. Cobb: Forecast of Fulfillment, 

N.Y. Teachers College Press, 1972, for 

detailed review.) The most outstanding of 

these studies were those by R. J. Kennedy 

and by Bailer and Charles, both of which 

compared the records of adults, who as 

children had been identified as mentally 

retarded, with control groups over periods of 

30 years. In both cases, the retarded adults 

were far closer to the achievement levels of 

the "normal" than they had been in their 

school years. 

There were a number of studies of the 

adjustment of mentally retarded persons to 

military service and war-time industrial 

employment during World War II. Some 

failed, but a surprisingly high proportion 

made good adjustments. (See Cobb, op. cit., 

p. 23) 

In general, the studies of war-time adaptive 

behavior indicated that mildly mentally 

retarded persons could function with a high 

probability of success under conditions of 

structured routine which the armed services 

could provide and in appropriate jobs in 

industry. The manpower demands of 

wartime appear to have provided an 

impressive and opportune demonstration of 

the employability of retarded persons under 

these conditions. 

By 1950, then, a century after Samuel 

Gridley Howe opened his school for "idiotic 

children" in Boston, what was the status of 

mentally retarded people? In the interval, a 

grossly distorted image had been created, 

and dehumanizing social practices devised 

accordingly. But knowledge and experience 

had stripped that myth of its credibility. 

However, myths die slowly, and prejudicial 

images persist. 

In 1950, the parents and their retarded 

children were still stigmatized. Public institutions were intolerable, but still with long 

waiting lists. Special classes in the schools, 

where they existed, were ill-conceived, 

poorly taught, and sharply restrictive. Private 

schools were for the wealthy. Doctors spoke 

of incurability and recommended placing the 

child in an institution. Psychologists 

measured I.Q. and gave little help. Social 

workers knew little of the problems of 

retardation in the family.

21 
Yet, there was slow progress. Even in 1930, 

there had been the awakening of new views of 

mental handicap. Social reform was awakening 

industrial society to seek new solutions to many 

human problems. Knowledge was advancing to 

provide new approaches. 

Depression and war in the 1930's and 1940's 

absorbed the national mind and the national effort—

but there was an undercurrent that grew to make the 

half-century mark the opening of a new era of 

decision in mental retardation. A part of this undercurrent was reflected in the growing concern of 

government. The stage was set in part by a series 

of national conferences sponsored by the White 

House beginning in 1909, and centering on the 

problems and interests of children. We now turn 

to that series. 

Some of Maria Montessori's pupils. From an Educational Wonder Worker, 1914. 

22 
Elwyn Institute 

23 
24 
Chapter 2 

The White House Looks at Children and Youth 

In the characteristically American view of 

life, children are a fulcrum in the value scale 

that moves the nation. This fact has been critical 

in determining the recovery of the image of the 

mentally retarded child from the stereotype of 

horror into which it had sunk at the beginning 

of the century. 

One central core in the concern for children 

has been the series of White House Conferences 

which have been called each decade by 

successive Presidents from Theodore Roosevelt 

in 1909 to Richard Nixon in 1970. Because the 

role of the retarded child is reflected in the 

social role of all children, we will trace this 

series of conferences. Much of the governmental 

involvement in the well-being of its citizens has 

stemmed from these conferences. 

1909. Conference on the Care of Dependent 

Children 

Called by President Theodore Roosevelt, 

the conference included representatives of 

charitable organizations, directors of 

orphanages, probation officers, State boards of 

charities and corrections, university presidents, 

children's aid societies, sociologists, the Russell 

Sage foundation, and notables such as Judge 

Ben Lindsey, Theodore Dreiser, Jacob Riis, and 

Booker T. Washington. (Conference on Care 

of Dependent Children. Proceedings. Senate 

Doc. 720, 60th Congress, Vol. 13, 1909: U.S. 

Government Printing Office, Washington, 

D.C.) 

Alexander Johnson, formerly superintendent of 

Fort Wayne State School for Feebleminded in 

Indiana, and Emily Williamson, Secretary of 

the Board of Managers of the New Jersey State 

Institution for Feebleminded Women and Girls, 

were the only ones directly associated with 

mental retardation. 

The National Conference of Charities and 

Corrections, with which the State Boards were 

affiliated, had long been the major forum in 

which mental deficiency had been discussed. 

The theme of the conference was that 

"Home life is the highest and finest product of 

civilization. Children should not be deprived of 

it except for urgent and compelling reasons." 

The discussions centered on the dependent 

rather than the defective or handicapped child. 

Considering the intensity with which the 

campaign to institutionalize all mentally 

deficient children and adults was being 

conducted at that time, it is surprising that the 

issue was not raised at this conference. 

However, some of the recommendations were 

the forerunners of those later applied to retarded 

children, contrary to the then current point of 

view. 

 Prevention: every effort should be made to 

eradicate the causes of dependency such as 

disease and accident; systems of compensation 

and insurance should be substituted for relief, 

and children should be cared for in their own 

homes as far as possible. 

 Cottage plan: large institutions should be 

avoided, utilizing a cottage plan with small 

familial type units as far as possible.

25 
 Educational work: education of dependent 

children cared for in institutions and agencies 

should be supervised by State education 

authorities. 

 Enactment of a pending bill to establish a Federal 

Children's Bureau is earnestly recommended and 

highly desirable. Its functions would be to collect 

and disseminate information affecting the 

welfare of children. 

The conference led directly to a movement for 

mothers' pensions, the forerunner of Aid to 

Dependent Children; and was instrumental in 

establishing the Children's Bureau, which occurred 

by Act of Congress in 1912. 

1919. The Children's Bureau Conference 

This conference was called with the sanction of 

President Wilson in May and June 1919, at the 

conclusion of the presidentially proclaimed 

"Children's Year," which was from April 6, 1918 

to April 6, 1919. (Standards of Child Welfare. 

Report of the Children's Bureau Conference 

May-June 1919: U.S. Government Printing Office, 

Washington, D.C.) 

The theme of the conference centered on the 

necessity for more public effort in behalf of children, 

and the expenditure of that effort in the light of the 

individual characteristics of each child and his family. One of the special committees was concerned 

with Protective Standards for Children with 

Special Needs. 

Office of Child Development 1937 photo 

Walter E. Fernald wrote the chapter of the report 

of this committee with respect to "A State 

Program for the Care of the Mentally Defective." 

(op. cit. pp. 399-407.) This report was notable in that 

it marked a corrective reversal of many of the 

extreme views expressed by Fernald 10 to 20 years 

earlier. 

He was impressed with the high prevalence of 

feeblemindedness in the community as indicated 

by mental tests—2 to 3 percent—the largest 

proportion being of the "moron" class. Most 

States were "doing something" for their 

defectives but in no case were more than 10 

percent being helped. Heredity was still regarded 

as the chief cause, and reproduction the chief 

danger. Feeblemindedness was still regarded as a 

notable but not the only cause of crime, 

delinquency, and other social miseries. Since the 

institutional segregation of all feebleminded now 

seemed to be out of the question, and it was now 

recognized that there were "good morons" and 

"bad morons," it could be determined which 

ones should be institutionalized and which should be 

cared for in other ways. 

Fernald's own follow-up studies of persons 

discharged from Waverly had now convinced him 

that the majority of mildly retarded persons can 

make a good community adjustment, especially with 

good early training and proper guidance, and if 

they are prevented from becoming parents. 

Each State should assume the responsibility for 

thorough study of the school and general 

population for the purposes of securing data 

concerning the extent of Feeblemindedness and 

Subnormality, and should make adequate 

provision for such mentally defective children as 

require institutional care, and provide special 

schools or classes with qualified teachers and 

adequate equipment for such defective children 

as may properly be cared for outside of 

institutions. Custodial care in institutions for 

feebleminded children should not be resorted to 

until after due consideration of the possibility of 

adjustment within the community. (p. 443) 

26 
Specific recommendations for carrying out a 

model State program along these lines 

included: 

1. Screening and identification of all 

feebleminded and subnormal cases in the 

population, using established clinics in the 

towns and traveling clinics in the rural areas. 

Emphasis should be on the identification of 

children in the early years since "those 

defectives managed and cared for at the earliest age are the least troublesome later." 

2. Provision should be made for the permanent 

supervision of all feebleminded persons either 

in institutions or in their own homes. The legal 

status of the defective should be determined by 

his terminal mental age, not his chronological 

age. (This assumed that mental age above 12 

was within normal "adult" limits; those below 

that level would retain permanent minor status, 

and therefore legal incompetence.—Editor's 

note.) 

3. Provision for the care and supervision would 

be under a "State Commission for the 

Feebleminded: headed by a psychiatrist, with 

direct supervision carried out by a local 

commission. The registered defective would 

be regularly visited and supervised by a local 

visitor who would maintain records and 

family histories, recommend status as to need 

for institutional commitment, provide 

literature, advice and counsel to parents, 

especially in regard to the dangers of faulty 

heredity. The feebleminded not in the 

institution would be under permanent parole in 

custody of parent or guardian. 

4. In general the child would remain in the 

custody of parents, with special education 

provided for those unable to function in the 

normal classes. "It should be recognized that 

the defective child is entitled, even more than 

the normal child to education according to his 

needs and capacity." 

5. Defective delinquents should be placed in 

corrective institutions apart from normal 

delinquents "where the discipline is more 

rigid and permanence more certain." 

6. Adult defectives in the community would be 

subject to certain restrictions, the chief one of 

which prohibits parenthood, by sterilization if 

necessary. 

7. The program proposed requires teamwork 

on the part of all professional groups. There 

would be highly centralized formulation of 

plans, methods and authority, but much of the 

real work would be done in the local 

community. The key to the program lay in 

the maintenance of a complete and 

permanent register of the defective, with lifelong observation in the community as an 

alternative to institutional residence, and with 

special education classes an alternative to 

either institutional training or fruitless 

attendance in the regular schoolroom. 

1930. The White House Conference on 

Child Health and Protection 

Called by President Hoover, the 1930 

conference was notable for its comprehensive 

concern for mentally and physically 

handicapped persons. In relation to mental 

retardation, it stands like the Greek God, Janus, 

with faces looking in both directions, one to the 

past, the other to the future. (The White House 

Conference of 1930 on Child Health and 

Protection. Addresses and abstracts of 

Committee Reports, N.Y. Century Co. 1930.) 

Terminology had further evolved. The 

generic term was mental deficiency, based on 

I.Q. of 85 or less. This includes an estimated 15 

percent of the total population, 13 percent 

being intellectually subnormal but usually 

capable of social adequacy, 2 percent definitely 

feebleminded at borderline, moron, imbecile, or 

idiot levels and lacking in social adequacy 

unless given therapeutic treatment and training 

in the higher grades. 

27 
A child migratory farm worker in 1936. Office of Child Development

It was noted that concentrations of feebleminded 

children are found in homes for dependent children, 

county poor farms, impoverished families, and in 

general at lower socio-economic levels. 

There was persistent evidence that mentally deficient 

persons are found in higher proportions in penal and 

correctional institutions, but this finding was attributed 

more to their social vulnerability and poor social 

environment than to constitutional anti-social tendencies. 

Social control was the central management concept, 

as expressed in five recommended program elements: 

1. Diagnosis: based on I.Q. measurement, supplemented 

by comprehensive medical, psychological, psychiatric 

assessment. All subnormals should be identified, but only 

the definitely feebleminded should be registered under 

State authority for long term control. 

2. Therapeutic prevention involving (a) Special classes 

and modified curricula, under State and local authority, 

culminating in a vocational adjustment program 

promoted on a nationwide scale by a designated Federal 

agency. The public school should be the largest such 

agency in the therapeutic program. (b) Institutional care 

and training for those who cannot be adequately managed 

except under institutional conditions; but the emphasis of 

institutional training should be toward the development of 

desirable social behavior. (c) Colonization and parole. 

Small, carefully located colonies under control of 

institutions will provide productive agricultural, domestic 

or industrial work under controlled conditions. If the 

"colonists" attain appropriate social adequacy, they may 

be paroled, but should only in rare cases be completely 

discharged from all supervision. 

3. Supervision of paroled and non-institutional cases. ". . . 

only by guarding and directing the deficient person 

throughout his entire life, can the training, in many instances, be made effective." (p. 312) This includes vocational adjustment and follow-up, supervision of home 

conditions, with informational and educational assistance 

to parents and guardians. 

4. Selective prevention of reproduction. Mentally 

deficient persons whose social adequacy is precarious 

should not run the risk of reproduction. The reasons now 

are two-fold: the risk of transmission of deficiency by 

inheritance, and the risk of inadequacy in child-rearing. 

Methods of prevention are threefold: segregation, 

contraception, and selective sterilization. The latter has 

been established as constitutional, is easily accomplished 

by vasectomy or salpingectomy; "hence there are no 

surgical, legal, or humanitarian obstacles to the extensive 

practice of selective sterilization.: (p. 314n) Contraceptive 

methods are uncertain and universal segregation 

impractical. 

5. Research. There is an urgent need to expand 

knowledge of the causes, means of prevention and 

methods of treatment of this massive social problem. 

Special attention should be given to the respective proportions of primary (largely hereditary) and secondary (acquired pre- and perinatally) deficiency including the 

effects of malnutrition and other associated phenomena. 

[At that time, the only ameliorative measures for 

secondary deficiency, other than education and training, 

were the use of thyroid products in cretinism and medical 

treatment of childhood syphilis.] 

The report concluded: "The hopeful fact is that a large 

proportion of mentally subnormal persons can be 

diverted into channels of social usefulness; they can be 

made social assets rather than social liabilities. 

Responsibility rests upon the normal citizens of the 

community; progress will be made only by facing the 

facts and acting in the light of the knowledge thus 

acquired."

28 
1940. White House Conference on Children in 

a Democracy 

The main thrust of the 1940 conference was a 

concern with the development of adequate 

child welfare services at local and county 

level as an adjunct to general welfare services 

in the community. (Children in a Democracy, 

General Report Adopted by the White 

House Conference on Children in a 

Democracy, Jan. 19, 1940. U.S. Government 

Printing Office, Washington, D.C. 

A second emphasis was on children in 

minority groups with the recognition that 

minority children, especially Negroes (the term 

then used) are disadvantaged educationally and 

health-wise and that corrective efforts must be 

made in the light of these disadvantages. 

The general view was that children with 

special problems should be cared for so far as 

possible within the contexts of regular child 

welfare, with special programs adapted to their 

particular needs. An example was taken from 

public school programs where, it was noted, 

much of the advance in pedagogic technique is 

derived from the study of ways of educating the 

"backward, deficient, difficult child—the 

school's problem child." A striking point was 

then made that "in their field, as in the field of 

public health, the disadvantaged group and the 

low income group tend to become one large 

group of children which overlaps the allchildren perspective of welfare planning." 

Among the major problems to be met was 

that of children in institutions who could 

receive care more suitable to their needs in their 

own communities; they were kept in institutions 

because service was not available to rehabilitate 

their homes. During the depression years, 

institutions had become so crowded and their 

facilities so meager that they could do little 

training or treatment. Thousands of mentally 

deficient children on the waiting lists of 

institutions were without other needed social 

services, supervision, or care. 

The report, which in general did not go into 

detail on the subject of mental deficiency, 

contains this notable passage: 

Successive studies have brought out the fact 

that earlier emphasis upon identifying and 

labeling mental deficiency, upon setting up 

rigid classifications (especially those of numerical intelligence quotients), upon isolating 

and institutionalizing persons so classified, was 

being pushed beyond limits that were 

scientifically sound or socially useful . . . 

appropriate education and suitable employment 

in the community are frequently the best 

treatment for persons with such limitations. (p. 

273) 

Recommendations included: (1) early 

discovery and diagnosis with assistance to 

parents in understanding the problems faced by 

their children; (2) modified school curricula 

in regular or special classes appropriate to 

learning capacity, under a statewide plan; (3) 

sufficient availability of institutional care to those 

requiring it; "facilities for the nation as a whole 

are still woefully inadequate," with about 

40,000 in residence and long waiting lists 

requiring years of delay in admission; (4) 

research on epidemiology, diagnosis, 

educational and treatment techniques, and 

integrating of all elements of diagnosis, care 

and treatment within a well articulated system. 

29 
1950. The Mid-century White House 

Conference 

The 1950 conference was concerned almost 

wholly with the development of personality. 

There was no direct concern with mental 

deficiency as such, but two points were made 

which represented significant advances in 1950 

thinking that bear heavily on viewpoints 

relating to deficiency. (Personality in the 

Making. Report of the Fact-Finding 

Committee for the Mid-century White House 

Conference; U.S. Government Printing Office, 

Washington, D.C. 1950.) 

In discussing the contribution of intellectual 

endowment to personality development, it was 

noted that intelligence itself could no longer be 

seen as a fixed characteristic. Citing the 

research done since 1930, especially the work 

of Skeels and others at the University of Iowa, 

the evidence suggests that intellectual functioning 

"changes with changes in the experience and 

especially in the emotional state of the person" (p. 

46). Hence intelligence tests were not so allencompassing nor so definitive as had been 

thought. "Intellectual ability, accordingly, is 

viewed differently now than in 1930. 

Psychologists have learned enough about the 

conditions under which adults and children make 

a success of living to know that intellect as 

such is not as all-important as it was once 

thought to be." (p.47) 

A second point, based on studies of juvenile 

delinquency (from Slawson 1926, and N.Y. 

Crime Commission Studies 1929, to Glueck and 

Glueck 1950), demonstrated that low intelligence 

has little to do with delinquency. Juveniles who 

get into trouble with the law are most frequently 

from low economic background, many with 

lower mentality, have little parental guidance, 

are restless and aggressive. Sociological 

explanations and psychological explanations 

blend into each other to support the view that 

there is no single cause for delinquency nor is 

any single factor such as low intelligence, 

poverty, or broken home, sufficient in itself to 

produce delinquency. "There are identifiable 

social and economic factors—poverty, 

discrimination on the basis of color, class and 

creed, cultural differentiation, and so on—that 

favor the development of delinquent behavior 

in boys and girls who are too energetic to be 

easily set aside and lacking in strength of 

character to find a socially approved way out 

of their dilemma." (p. 414) 

From the period of 1910 to 1950, a complete 

reversal had now been made in the nature of the 

relationship between social miseries on the one 

hand and low intelligence on the other. Earlier, 

all social ills of poverty, crime, insanity, had 

been laid at the door of mental deficiency. Now 

the complex of social miseries may, in conjunction with individual personality factors, 

contribute to lower intellectual function or 

delinquency or both. 

1960. Golden Anniversary White 

House Conference on Children and 

Youth 

Called by President Eisenhower, the 1960 

conference had as the theme "to promote 

opportunities for children and youth to realize 

their full potential for a creative life in freedom 

and dignity." (Golden Anniversary Conference 

on Children and Youth. Summary of 

Program and Report. U.S. Government 

Printing Office, Washington,_D.C., 1960. 

Recommendations: Composite Report of 

Forum Findings. Golden Anniversary 

Conference of Children and Youth; U.S. 

Government Printing Office, Washington, D.C., 

1960.)

30 
Mental retardation received attention in this 

conference as never before. The inclusion was due 

largely to the extensive participation of the 

National Association for Retarded Children, 

which was then a lusty 10-year-old organization. 

NARC focused a major effort on the conference. 

Dr. Elizabeth Boggs, President of NARC at 

that time, organized and chaired the forum dealing 

with the mentally handicapped; Dr. Gunnar 

Dybwad, Executive Director of NARC, played 

an active role in the conference organization, 

and Dr. Boggs was responsible for the 

preparation of the background paper on mental 

retardation published by NARC under the title 

Decade of Decision. 

Through active efforts, members of ARC 

groups were appointed to nearly every State 

committee preparing for the conference and 

more than 200 were among the 7,600 official 

delegates. In addition, the American Association 

on Mental Deficiency was revitalized with 

broadened membership and program, and 

universities and colleges were becoming active 

in research and training, especially in special 

education of mentally retarded children. 

An awakening of professional interest in the 

retarded child was occurring, along with the 

beginnings of reform in residential institutions 

and the development of community resources for 

diagnosis, evaluation, and training. 

Of the 670 recommendations proposed by the 

18 forums, 43 were directly put forward by the 

Forum on the Mentally Handicapped. A great 

many more proposed by other forums were of 

direct or indirect concern to the advocates of 

mentally retarded people. 

A major recommendation supported by the 

conference as a whole called for "a substantially 

increased portion of the total national resources to 

be shifted to the public agencies specifically 

dedicated to the maximum development of human 

potentialities." (p. 412) 

Other recommendations concentrated on the 

need for an array of ameliorative and supportive 

services based on long-term planning and the 

pooling of all resources of the State, including 

government, voluntary agencies, and individuals. 

Among other conference points: 

• The role of the family is primary and crucial. 

Separation from the family should be the last 

resort for a child, but the family must be given the 

supports necessary for handling its problems—

including medical, financial, legal, and informational aid, home assistance, and respite care. 

Families need assistance in providing for 

guardianship and in total life planning.
• Upgrading of special education is needed, 

with increased Federal funds for training and 

research and specific application to 

developing classes for the "trainable level." 

 Institutions need to be integrated into total 

service patterns, reduced in size, upgraded in 

quality, redirected in goals toward maximum 

development of the resident with return to 

community when possible. Institutional 

admissions are best if voluntary, on the basis of 

careful evaluation and planning. 

 Additional required service elements include 

day-care centers, vocational training centers, 

sheltered workshops, diagnostic services, 

special classes for educable and trainable, 

vocational planning, guidance and placement, 

transportation to treatment centers and schools.

The conference called for allocation of a 

much greater portion of national resources to the 

maximum development of human potential 

through increased appropriations and taxation by 

equitable means. 

Specifically, strengthening of the U.S. 

Office of Education was recommended, with 

emphasis on programs of special education for the 

handicapped; special project grants for maternal 

and infant care, maternal and child health services, 

and research and demonstration projects in all 

areas. 

The 1960 conference reflected the strong 

impact that had been made during the 

preceding decade by the rise of the parent 

movement and the reassessment of retardation on 

the basis of rapidly developing knowledge. 

The total problem was being brought to the 

forefront of public consciousness. 

The recommendations of 1960 on mental 

retardation were in many respects reminiscent of 

those of 1930, although with some very 

important differences. The two decades of 

depression and war had prevented the forwardlooking recommendations of 1930 from finding 

expression in public action. The efforts primarily 

of the aroused parent movement in the 1950's 

had prepared the ground for a new expression in 

modernized form of the needs which had been 

building up cumulative pressure. In turn, the 1960 

conference set the stage for what was to become 

a massive national effort to combat retardation, 

led by the Kennedy Administration in the 

immediately following years. 

1970. (A) The White House Conference on 

Children 

Distinct from its predecessors, the 1970 

conference was divided into two; one on 

children, held in Washington in December 1970, 

the other on youth, held at Estes Park, Colorado 

in April 1971. 

The strategy of the conference was to treat 

special problems under general problems and to 

extend basic principles to cover all children. 

For this reason, mental retardation was not 

given specific treatment in 1970, but was 

included in the general Forum on Handicapped 

Children. (White House Conference on 

Children—Report to the President, U.S. 

Government Printing Office, Washington, 

D.C., 1970.)

32 
The forum on the handicapped made the 

following declaration of principle: "We believe that 

all children in the nation have a right to 

comprehensive health care and that the handicapped 

child has often been denied this right because of 

difficulties in meeting his special needs." 

The following primary recommendations were 

based on this declaration: 

1.That a comprehensive health care system be 

developed that will ensure not only basic health 

needs of all children, but also diagnostic treatment 

and educational services for all handicapped 

children without restrictive means test, residence 

requirements, or other arbitrary barriers. 

2.The immediate and full appropriation of 

authorized funds for those programs which focus on 

manpower, training, and the provision of services for 

the handicapped. 

3.Legislation to provide high quality programs 

mandatory for all handicapped children through age 

three. 

Additional recommendations of secondary 

priority included: 

—Development of advocacy systems. 

—Manpower expansion through use of 

paraprofessionals and trained volunteers, with 

allocation of public funds for their training. 

—Increased funding for research into 

handicapping conditions, especially on the 

application of research findings to prevention, 

education, and rehabilitation. A coordinated 

national information service on the 

handicapped should be funded. 

—Increased funding for new and existing 

programs for the handicapped. All Federal, 

State, and local funding for health and related 

services should be unified and coordinated. 

—Establishment of a national health insurance 

program, with universal coverage through 

attachment to the labor force, comprehensive 

benefits, adequate financing through social 

security, supplemented by contributions from 

general revenue. 

—Guaranteed minimum income to all families. 

—All public structures accessible to the 

handicapped. 

—Integration of the handicapped with the 

normal from their earliest years. 

—Indexing of all services for the handicapped at 

State and local levels. (pp. 200-206) 

As an innovation of this conference, the 1,912 

delegates cast votes on issues presented by the 

forums which the delegates felt were of overriding 

concern to all. Of the 16 issues that were voted of 

overriding concern the first seven are of special 

interest to the mental retardation field: 

1. Comprehensive family oriented child 

development programs including health services, 

day care, and early childhood education. 

2. The development of programs to eliminate 

racism, which cripples all children. 

3. Reordering of national priorities beginning with 

the guaranteed basic family income adequate for the 

needs of children. 

4. Improved national systems of child justice so that 

law responds in timely, positive ways to needs of 

children. 

5. A Federally financed national health care 

program which ensures comprehensive care for 

all children. 

6. A system of early identification of children 

with special needs which delivers prompt and 

appropriate treatment. 

7. Establishment of a child advocacy agency 

financed by the Federal Government and other 

sources, with full ethnic, cultural, racial, and sexual 

representation. (pp. 423-427) 

1971. (B) The White House Conference on 

Youth 

The Conference on Youth developed out of and 

strongly reflected the insurgency of youth which 

had characterized the 1960's. As a consequence it 

was basically a national conference of youth, with 

two-thirds of the delegates between ages 14 and 24, 

carefully representative of the demographic 

diversity of the general population. The 500 adults 

were carefully selected to represent the adult power 

structure of American society. (White House 

Conference on Youth—Report to the President: 

U.S. Government Printing Office, Washington, 

D.C., 1971.) 

The conference was in a real sense a challenge 

of earnest and thoughtful youth to the prime 

movers of the American scene. The Preamble of 

the Report asserts: 

Out of the rage of love for the unimplemented 

principles we here assert, we challenge the 

government and power structures to respond swiftly, 

actively, and constructively to our proposals. We are 

motivated not by hatred, but by disappointment over, 

and love for, the unfulfilled potential of this Nation. 

(p. 16) 

33 
Although the conference concerned itself 

primarily with monumental issues of a social, 

political, and cultural nature, many of the 550 

recommendations had a bearing on mental 

retardation. Some of these were by direct 

reference, but most by inclusion under general 

principles of "right" claimed for all persons in 

our society. 

The principal themes running through the 

conference, as listed by the chairman in the 

introduction (pp. 7-11), were (1) Youth 

involvement, or the right of all persons to 

exercise a choice in the decisions that affect their 

lives; (2) Community Control/Participation or 

the vesting of control of socially significant 

programs in representative local bodies, even 

though sources of equitable funding may need 

to be Federally managed; (3) Equality/Pluralism, 

or the diversity of individual and group differences within the common society; (4) 

Libertarianism, interpreted as the "freedom of 

all human beings consciously to choose their 

own way of life when their choices do not 

limit or harm the rights of others"; (5) 

Humanization in relation to technological 

advancements, employment and economic 

security and in the general "equality of life" for 

all persons; (6) Humanitarianism, or genuine 

and active concern with human plight, whether 

as victim of injustice or victim of misfortune. 

Education was quite naturally a major 

concern. The task force on education, within a 

frame of recommendations for greater 

flexibility, humanity, equity and rationality, 

included a section on the "exceptional student" 

(physically, emotionally and mentally 

handicapped, learning disabled, gifted). 

The recommendations emphasized selfactualization as the central value; early detection, 

integration into regular school life; public 

understanding; continuing research of causes, 

treatment and prevention; full funding and true 

implementation of authorized programs; 

advocacy programs; reversal of the tendency to 

make special education peripheral and makeshift 

and maladapted to individual need. (pp. 97-99) 

Poverty and ethnic disadvantage loomed large 

in the consensus, tied in heavily with racism, 

discrimination and other antidemocratic 

practices. There were attacks on the 

discriminatory use of IQ and other testing 

procedures. In particular it was pointed out that 

classes for the mentally retarded and slow 

learning children are disproportionately filled 

with children of minority and poverty 

backgrounds because of the "inability of the 

testing procedure to relate to them. . . . The 

administration of IQ tests or their equivalents 

should not be used as a measure of a child's 

potential and abilities." (p. 197, see also 226, 

235) 

The task force on poverty recommended 

that abortion be left to a decision reached 

between doctor and patient, that voluntary 

sterilization be made available to those who wish 

it. But the task force voted to condemn 

legislation or acts which promote involuntary 

sterilization because "we believe that it is a 

step toward genocide of poor people" (p. 

200). A minority report recommended laws prohibiting abortion on the basis of right to life. 

The conference recommendations reflected 

the interests and viewpoints of its delegates, 

and the prime issues by no means reflected 

national policy. Nevertheless, the 

recommendations say something about the 

temper of the time. In this sense, the series of 

White House Conferences on children reflect 

the changing attitudinal milieu in which the 

problems of mental retardation and those 

afflicted have been treated in this century.

34 

NARC 

Mr. and Mrs. Harold Nathan of Fort Washington, Pa., with their four sons, including Mark 

(far left), who is retarded. He was received at the White House by Mrs. Eisenhower in 1958, 

as the first NARC Poster Child. 

36 
Chapter 3 

Parents and Volunteers 

Given: 

The continuing occurrence of mental retardation, . . . the increased number of 

severely mentally retarded children resulting 

from the higher post-war birth rate and the 

achievements of medical science, . . . the 

paucity of resources, . . . the surviving incubus 

of the demonic image of mentally deficient 

persons, . . . the professional indifference and 

widespread ignorance of retardation, . . . the 

parents' constant frustration and fear and 

bafflement, . . . the accumulated pressure of 20 

years in which growing knowledge and 

understanding had been blocked by depression 

and war and post-war confusion, . . . the 

deepseated commitment to the rights of all 

people to a decent human existence, . . . the 

belief that public education is a right of all 

children. 

With the same "givens" shared in every State 

and community, not only in America, but 

across the world, in the 1940's there occurred a 

coming-together of parents, a mutual discovery 

of common need, a determination to find 

solutions to problems. 

Some voices came from sources that had been 

speaking for many years in professional societies, 

in conferences, through the magazines, speaking 

of the need for educational and other modern 

professional services to improve the lot of 

mentally deficient individuals. But these voices, 

such as Wallace Wallin, Edgar A. Doll, E. R. 

Johnstone, Neil E. Dayton, Richard 

Hungerford, Elsie Martens, S. P. Davies, and 

others had said very little publicly that spoke to 

the personal problems of the parents of retarded 

children. It was the parents who really bore the 

great burden. 

As early as 1933, a group of five mothers in 

Cuyahoga County, Ohio found one another and 

got together in an "indignation meeting" 

because their children had been excluded from 

public school. Out of this protest came the 

forming of a special class sponsored by the 

parents themselves to serve excluded children. 

Similar units started in other parts of Ohio 

and elsewhere during the '30s and '40s, but 

they were small, scattered, and generally 

unknown to one another. 

At the same time, a few groups of parents 

organized around the common interest of 

having placed their children in a State 

institution, but not wishing to abandon them, 

wanted to make the institutional life as happy and 

constructive as possible. These parents' groups 

were formed in the State of Washington in 1936, 

and in New York in 1939. 

One of the barriers to the formation of such 

groups was their feeling of isolation, and the 

tendency to keep the problem hidden as a guilty 

secret. To bring their problem out into the open, 

even to admit the reality to themselves, was 

extremely difficult, especially for parents who 

prized intelligence as the most valuable of 

human attributes. 

This sentiment was particularly true for 

middle-class parents whose dreams for 

their children were cast in the clear-cut 

mold of professional or business "success" 

with its early manifestation in good school 

Editor's Note: Sources for this material 

have been principally the following: an 

unpublished manuscript, The Story of NARC, 

by Dorothy Garst Murray; Decade of 

Decision, by Elizabeth Boggs (NARC, 

1959), annual reports and other records of 

NARC, and personal recollections.

37 
records and advancement through higher 

education. The contrast between the dream 

and the reality of a retarded child was deeply 

wounding to parental feeling. 

It was, therefore, an act of courage for 

parents to bring their problem into the open and 

to challenge both the traditional image of mental 

defect and the rejection and discrimination 

practiced by society against them. 

But the act was a healing one as well. The 

sharing of common problems, needs, and 

experiences helped in coming to terms with the 

issue, in seeing it in more objective light, in 

moving from the nursing of "wounded 

parenthood" to concern for the well-being and 

development of the child, and hence to a 

broadening of effort to deal with the total 

problem of mental retardation everywhere. 

The effect of parent organization was to 

provide, first, a source of mutual aid and 

comfort; second, a second basis for direct action 

in obtaining better opportunity and treatment for 

their own children; and, third, a catalytic agent 

to bring about broad social change in 

management of a serious and widely pervasive 

human problem. Conditions were ripe for action 

on a broad scale at the end of World War II. 

By 1949, organized groups had sprung up in 

a dozen or more States. Professional people were 

becoming aware of them; especially among 

members of the International Council for 

Exceptional Children, the organization of 

special educators; and the American Association 

on Mental Deficiency, the organization of all 

professionals in the field. 

Lloyd N. Yepsen, Secretary of the 

American Association on Mental Deficiency, 

and Director of the Division of Classification 

and Education in the New Jersey State 

Department of Institutions and Agencies, wrote 

a manual on organizing parent groups, based on 

the experiences in New Jersey beginning in 

1947. It was widely distributed. He also wrote a 

"Facts and Fancies in Mental Deficiencies," a 

rebuttal of many of the prejudicial misconceptions 

which parents had to face. 

In 1947, Alan Sampson, a parent who had 

been active in the Children's Benevolent League 

of the State of Washington, spoke before the 

annual conference of AAMD and in 1949, R. 

T. Lindh of Minnesota and Mrs. L. W. Riggs 

of Ohio described the work of their parent 

groups. 

Two of the regular program sessions were 

focused on parent activity at the May 1950 

meeting of AAMD in Columbus. A dozen 

parents converged on the scene, met, and talked. 

They were encouraged by Mildred Thomson, 

Director of the Mental Deficiency Section of 

the Minnesota Department of Public Welfare, 

and Richard Hungerford, head of the program 

for Children with Retarded Mental Development (CRMD) in the New York City 

public schools. Miss Thomson and Mr. 

Hungerford were respectively the outgoing 

and incoming president of AAMD. 

Following extensive discussion of the need 

for a national organization of parents, Miss 

Thomson invited interested groups to meet in 

Minneapolis for an organization conference. 

Thus, in September 1950, the National 

Association of Parents and Friends of Mentally 

Retarded Children was organized, with 44 

delegates representing 23 organizations in 13 

States. The name was shortened in 1951 to 

National Association for Retarded Children 

(NARC), which it remained until 1973 when it 

was changed to National Association for 

Retarded Citizens.

38 
NARC was incorporated in the State of 

Tennessee in 1953. By 1960, it had grown to a 

total of 681 State and local units, embracing a 

total membership of 62,000. By 1975, the total 

membership was above 218,000 in more than 

1700 State and local units covering all types of 

communities from metropolitan to remote and 

sparsely settled countryside communities (See 

figure 2). 

As striking as the growth of the organization 

was, its impact on the course of events in 

mental retardation was even greater. It served 

as a social catalyst at local, State, and national 

levels to galvanize political change, modify 

public attitudes, and stimulate professional 

attention in a manner virtually without parallel 

among voluntary service organizations. 

Working in collaboration with the professionals of AAMD and CEC (Council for 

Exceptional Children), NARC is primarily 

an organization of people with a personal 

(familial or professional) interest in retarded 

persons. It has focused primarily on public 

information, public action, surveillance of the 

quality of service, and advocacy for the rights 

and interests of retarded children and adults. 

(AAMD is primarily an organization of 

professionals of all the disciplines in mental 

retardation. CEC is a professional organization of 

special educators, taking the lead in developing 

educational services for all exceptional 

children.) 

NARC's initial statement of purposes 

formulated at its first organizing convention 

and embodied in the corporate charter, has 

retained its essential substance for a quarter 

century: 

To promote the general welfare of the 

mentally retarded of all ages everywhere . . . 

To further the advancement of all ameliorative 

and preventive study, research, and therapy . . . 

To develop a better understanding of the 

problem by the public, and to cooperate with 

all public, private, and religious agencies . . . 

To further the training and education of 

personnel to work in the field . . . 

To encourage the formation of parent groups 

(Association for Retarded Citizens), to advise 

and aid parents in the solution of their problems, 

and to coordinate their efforts and activities. 

To serve as a clearing house for gathering and 

disseminating information . . . (and to foster 

the development of integrated programs in 

their behalf). 

The dynamics of the movement lay in the 

personal interest of its members, but that 

interest was infectious and from the beginning 

NARC attracted a wide range of active 

members from the various segments of 

community life. 

The parents involved were most likely to 

have children in the moderate to profound 

range rather than those mildly retarded who are 

far more numerous in the total population. 

Their children were the ones most commonly 

excluded from school, the ones whom the 

parents were most frequently advised to 

institutionalize and forget, the ones more often 

from middle-class homes and with complicating 

physical disorders or cosmetic problems. 

The organization spoke conscientiously and 

worked diligently for the interests of all 

retarded persons everywhere, at mild as well as at 

severe levels. Commonly, however, the 

primary concerns of local groups were directed 

to the procuring of services for those more 

substantially disabled who need schooling, 

sheltered workshops, day care centers, and 

preschool centers. These services were not 

willingly supplied by the normal social agencies. 

The membership has remained 

predominantly middle class. A recent survey of 

NARC membership characteristics (Mental 

Retardation News, March 1975) showed that 

minorities, the very wealthy, and the very poor 

are not significantly represented. Nearly 75 

percent of the local member units exist in

39 
communities of less than 50,000 population. As 

the relationship of the prevalence of retardation 

to poverty and minority status has become 

increasingly clear, this unbalanced representation 

has been of growing concern to the 

organization. NARC's impact can best be seen in 

terms of public information and attitude, 

legislation and public policy, extent and quality 

of developmental and supporting service and 

research. 

Impact on the Image 

The preceding decades had taken their toll 

in creating an image of the mentally retarded 

individual as a destructive menace with a 

child's mind in a grown body. NARC attacked 

that image at its most vulnerable point—the 

child. NARC capitalized on the advancement 

of genetics to play down the role of heredity 

and to play up the role of injury to the 

innocent child, who deserves our love and 

benefits from our help. "Retarded children 

CAN be helped" was the slogan under the 

logo of the child half in the shadows, adopted 

in 1953. 

The tone was set in 1950 at Minneapolis at 

the first NARC convention when Governor 

Youngdahl of Minnesota delivered a classic 

and deeply moving address on the theme of the 

retarded child. 

The human being is an individual whose value 

cannot be measured adequately in terms of 

materialism, usefulness to the State, physical 

fitness or mental capacity. The retarded child 

has the same rights that children everywhere 

have. He has the same right to happiness, the 

same right to play, the right to companionship, 

the right to be respected, the right to develop 

to the fullest extent within his capacities, and 

the right to love and affection. He has the 

rights for one simple reason . . . he is a child, 

and we cannot discriminate against this child, 

deny to this child the rights of other children 

because of the one thing neither he nor his 

family can help . . . because he is retarded. 

In 1954 with the contributed help of a major 

public relations firm, NARC launched into a 

national campaign of information and appeal for 

the "child in the shadows" who can and must 

be helped. All media were utilized—radio, 

television, films, newspapers, magazines, books. 

All, including the NARC publication, Children 

Limited (changed to Mental Retardation 

News in 1969), concentrated on creating a 

favorable climate in which the retarded child 

could indeed be helped. 

Books and articles told the personal story of 

parents and their retarded children, the stories of 

heartache and hope, of search and discovery, of 

love and acceptance. Two of these were 

particularly influential: The Child Who 

Never Grew by Pearl S. Buck, and Angel 

Unaware by Dale Evans. 

Thousands of anonymous parents, seeing these 

famous and capable people sharing their own 

discouragements, could feel more confidence 

in their own worth, despite their child's 

misfortune. 

Dale Evans contributed all royalties (totaling 

over $20,000) to NARC, providing a critically 

important fiscal boost from 1953 on for many 

years. 

Later the personal stories told by Mrs. Rose 

Kennedy of her daughter Rosemary, and by 

Mrs. Hubert Humphrey about her granddaughter 

Vicki, sustained the contention that any family is 

vulnerable. 

Through these and other stories, the retarded 

child became a human baby, lovable and 

helpless, needing a warm and welcoming 

world to help him grow. It was an appealing 

image to replace the deeply derogatory one of 

former years. And it succeeded in moving 

society to action in ways which professional 

knowledge and discourse could never have 

moved it. 

Yet NARC by no means neglected professional knowledge and its advancement and 

dissemination into public understanding. 

The development of the image of the retarded 

child who can appear in any family was 

extremely effective in opening the doors to the 

total problem. It was, perhaps, a necessary 

stage in the recovery of retarded individuals to 

full human status.

40 
There was an equally effective campaign to 

provide information. NARC nationally and 

through its State and local units developed 

informative materials on all phases of 

retardation—again concentrating mainly on 

the child. Information was supplied to parents 

on how to understand and manage the problem 

and where to seek help (Three r’s for the 

Retarded, by Dorothy Moss and Naomi 

Chamberlain). Information was offered to a 

wide variety of professional people, teachers, 

doctors, lawyers, social workers. 

Perhaps more important than all external 

informational activity was the self-education of 

the members, particularly the leadership of 

NARC, in the whole problem of mental 

retardation. 

They, in fact, became the experts during the 

1950's, putting together the essentials of 

existing knowledge. Technical sources were 

scattered and fragmentary. Much that was in 

standard textbooks was wrong, based on outworn 

premises. In a period when professionals were 

idle, the amateurs took the leadership in exposing 

the state of the art. 

During those years the formulators of 

legislation and the purveyors of service turned 

to NARC for information and advice. Most of 

the NARC leaders were highly educated 

people whose intense motivation led them into a 

new field of expertise. Consequently, new 

viewpoints emerged, based on current 

knowledge relating to the complex of 

conditions grouped under the term mental 

retardation. 

One of the constant problems, which is still 

reflected in confused laws and inappropriate 

forms of service agency organization, has been 

the distinction between mental illness and 

mental retardation. Headway is being made, but 

the confusion is deep-seated in the public mind 

and in some professional circles; mental illness 

being the disorder of personality and its 

functions, mental retardation being the 

limitation of intelligence and its functions. 

Another difficulty has been to clarify the 

treatment model for mental retardation. 

Traditionally, mental retardation has been 

regarded as primarily a medical, and specifically 

a psychiatric medical, problem. 

NARC has consistently held that mental 

retardation is a condition not a disease, that it 

arises in part from medically relevant causes, 

but also from social and cultural causes. As a 

condition of impaired development, the child is 

unable to assimilate experience into effective 

intellectual and adaptive behavior at the normal 

rate. The retardation tends to increase with age 

unless countered by active measures of stimulation and amelioration. 

Thus NARC has called for programs enhancing developmental potential at every age 

and regardless of the severity of the condition. 

This has become known as the "developmental 

model," emphasizing not "cure" or 

"hopelessness," but growth. 

NARC further promoted the concept of the 

total person whose impairment impinges on all 

aspects of his life and experience. Consequently, 

the retarded individual needs the coordinated 

help of a number of agencies and the skills of 

a wide variety of professional specialists during 

the course of his life. 

This concept laid the foundations for the 

extraordinary developments which began with 

the 1960 White House Conference. It also led to 

the comprehensive approach of the Panel 

appointed by President Kennedy and strongly 

influenced the legislation and services which 

followed thereafter. 

41 
Programmatic Developments of the 1950's 

Dr. Elizabeth M. Boggs outlined in concise 

form the programmatic efforts of NARC 

from 1950 to 1960 in Decade of Decision, 

prepared for the 1960 White House 

Conference on Children and Youth. Following the themes established for the conference, these efforts "to promote the welfare 

of the mentally retarded" were couched in 

terms of the accomplishments and the 

unfinished tasks in the areas of family, religion, 

health, education, welfare, recreation, law and 

government, work and guidance. In all of 

these, significant progress had been made, but 

the unfinished tasks were monumental. Some of 

the highlights of these efforts will be touched 

on here. 

The central concerns of parents in the early 

1950's were diagnostic evaluation, special 

education, and adequate facilities for 

residential care. At that time waiting lists 

often were equal to a third of the capacity of 

the institutions, with minimal turnover. 

NARC 

In 1950 no comprehensive diagnostic and 

evaluation clinics with specialized interest in 

the retarded child existed. By 1955, however, 

there were 33. And by 1969, 70 had been 

established, many on the initiative of the ARCs 

in local communities, through the support of 

the Maternal and Child Health program of the 

U.S. Children's Bureau. 

In 1949 24 States and the District of 

Columbia had laws providing for special 

education of mentally retarded children of 

"educable" (i.e., IQ 50-75) level. Ten 

years later all States with the exception of 

Arizona and Alaska had such laws. In 1949 a 

very few States tolerated under general 

regulation the existence of classes for children 

below IQ 50 but no State specifically 

sanctioned them. By 1959, 37 States provided 

for such classes either by mandatory or 

permissive specific legislation or by 

administrative regulation under broadly 

construed eligibility provisions of special 

education statutes. 

In practice, the establishment of special 

education classes for retarded children— 

especially for substantially handicapped 

children—was fraught with difficulty. Such 

classes were expensive, difficult to manage, 

and required teacher training which did not 

exist. In addition, school boards and officials 

were not convinced of their value. 

By 1950 the practice of admitting 

"educable" children to the public school 

system was well established in large cities, but 

not in smaller districts, and in many cases were 

conducted more for the relief of harassed 

regular teachers than for the benefit of the child. 

"Educability" was defined in terms of ability to 

make some progress in standard 3-R academic 

education, although it was identified 

commonly by psychometric (often group 

administered) intelligence tests indicating IQ 50 

or more. 

The ARCs protested that learning opportunity is a universal right and that their 

children if not rated "educable" were at least 

"trainable" in the sense that they could be 

taught the necessary non-intellectual skills of 

daily living and life-adjustment, and "maybe"

42 
could eventually learn to read anyway. Thus 

the term "trainable child" was invented. 

The coining of the term was, perhaps, a 

necessary device to open the door to educational opportunity, but it created a falsely 

dichotomous classification which obscured the 

continuities and complex differences in 

individual learning capabilities. And it still 

omitted consideration of even more severely 

retarded children from educational opportunity. 

NARC called them the "dependent" retarded 

but the professional literature was more likely 

to assign them the hopeless label "custodial." 

Resistance to "trainable" classes was great. 

Local associations in communities across the 

land had to demonstrate their feasibility. With 

or without public school sanction, parents 

organized classes for their children in church 

basements, vacant buildings, abandoned country 

one-room schoolhouses, anywhere. Support 

was solicited from the community and from 

charitable and service organizations. Teachers 

were recruited wherever they could be found. 

One influential professional who advised and 

encouraged NARC in this educational effort in 

the early 1950's was Prof. Samuel A. Kirk, of 

the University of Illinois. His book (with 

Merle Karnes and Winifred Kirk), The 

Trainable Child in the Community School, 

pointed common directions for both parents and 

special educators. 

Gradually, educational opportunity for 

moderately retarded children became more 

familiar and accepted, at least on the fringes of 

the public school system. So children with IQ 

in the 30-50 range were gradually included; but, 

below that, exclusion still prevailed. 

It was not until the 1970's that court action 

and public law upheld the right of every child 

to public educational opportunity consistent 

with his needs and abilities, no matter how 

severely disabled—but full realization of this 

right still lags. For the past five years, NARC 

has given priority attention to the extension of 

learning opportunity to severely and 

profoundly retarded children. 

In 1958 NARC commissioned Dr. Ignacy 

Goldberg to make a study of special education 

for "trainable" children. His journeys across the 

country to every kind of community, visiting 

with the parents, teachers, pupils and 

educational authorities, were a great stimulus to 

growth and a revelation of the intensity with 

which the ARC groups were pursuing 

educational opportunity for their children. 

This educational movement produced several 

results: a changing image of the retarded child in 

the community; stimulation of new 

educational methods and approaches that 

influenced not only the teaching of "educable" 

retarded children but of children in the regular 

elementary classes as well; a break in the lockstep rigidity of academic tradition by the necessity of individualizing and of going to the root 

processes of learning. In many ways these 

educational methods represented a return after a 

hundred years to the approach of Seguin and 

Howe, modernized in the light of new theories 

of learning. In addition, the growth of the 

number of classes created a demand for teachers, 

and teachers with a new kind of training. 

This need led to the first piece of Federal 

legislation specific to mental retardation, PL 85-

926, enacted in 1958 and implemented in FY 

1960, providing support for the university 

programs for leaders and teachers in special 

education for the mentally retarded. 

The intense involvement of the parent 

groups in the establishment, their support 

and operation of classes, set the stage for a 

critical policy debate of long duration within 

NARC Many of the ARC units operated 

schools and classes, and later sheltered

43 
workshops and day-care centers in order to 

demonstrate that it could be done 

successfully, and because no one else 

would do it. 

In some cases, the operations were 

picked up by the public schools or other 

agencies. In many cases, however, the operation of services became the basis of existence for the ARC unit. The result was a 

chronic "constitutional crisis" which led to 

a policy decision at the 1965 NARC 

Convention. It was stated that while it is 

legitimate and necessary for units to lead 

the way by demonstrating and initiating 

services, the organization's primary role is 

to "obtain not to provide" services. 

In the course of time, the children who 

were in special classes moved through 

adolescence and approached the end of 

their schooling. Then the question arose: 

"What next?" All too commonly the next 

step turned out to be a step backward into idleness and lonely isolation at home, or 

admission to a State institution. 

The need for vocational training and oc- cupation moved into the forefront. Circumstances eased the way. One was the 

fact that the Industrial Rehabilitation Act 

of 1920 had been amended in 1943 to establish the Office of Vocational Rehabilitation. OVR offers services to mentally as 

well as to physically handicapped persons. 

Another fortunate circumstance was 

that NARC's first Executive Director, Dr. 

Salvatore DiMichael, had formerly been 

employed by OVR and in 1950 had edited 

an OVR publication Vocational 

Rehabilitation of the Mentally Retarded

which documented the first successful 

rehabilitation efforts with retarded persons 

and pointed the way to improvement in 

procedures. 

As a consequence, NARC and its member units entered vigorously into the development of vocational training and 

sheltered employment of retarded persons. 

This step involved procuring the services 

of the State vocational rehabilitation agencies for individual retarded clients, developing training centers and sheltered 

workshops, and working diligently with 

OVR and with Congress to improve both 

the laws and the regulations. There were 

many problems, most of which related to 

the past history of rehabilitation of those 

who were physically handicapped. These 

regulations and procedures were not directly transferable to retarded people. 

In 1954 amendments to the Rehabilitation 

Act became law, with substantial adaptations to the needs of retarded persons. 

The 1965 amendments further provided for 

construction and staffing funds for 

workshops. A great many retarded people in 

the workshops were not accepted as clients 

by the State rehabilitation agencies in the 

early years on the grounds of a narrow 

definition of "feasibility." They were discharged at the end of too short a training 

period because of not responding to training. 

NARC's continued efforts to change the 

rehabilitation program eventually paid off, 

but even in 1975 service is far from 

sufficient. 

NARC itself has entered extensively into 

another aspect of vocational preparation, in 

an "on-the-job" training program. It began in 

1968 with a small contract from the 

Department of Labor, and has grown 

steadily into a significant effort operating in 

several States under the Comprehensive 

Employment and Training Act of 1974. 

By 1975, support funds of nearly $2 million annually are enabling approximately 

5,000 retarded persons per year to enter 

the labor market. 

NARC approached the residential institution during the 1950's with some ambivalence. The applications for admission to 

public institutions were rising rapidly, far 

44 
outstripping capacity. In 1950 there were 

approximately 128,000 in residence. By 1960 

this number had risen to 160,000 with long 

waiting lists. The great increase was in young, 

severely and profoundly retarded children. 

The institutions were still operating on the 

old model, massive, overcrowded, understaffed, 

with meager programs of education and 

training. Seventeen new institutions were 

created during the decade, with only lip 

service paid in most instances to new concepts 

of care. Parents felt guilty when compelled to 

apply for admission of their children, and there 

was a subtle status-war within the association 

between "institutional" parents and "home" 

parents. NARC leadership sought to support 

the rights of parents to make responsible 

choices based on individual needs, and to 

represent the residential facility as an integral 

part of a complete service system. 

Admission to public institutions was most 

commonly by court commitment which 

implied incompetency, and which frequently 

interposed State guardianship between child 

and parent. The process was often 

accompanied by the indignity of means tests and 

procedures that resembled those of a criminal 

trial. 

A study by NARC showed wide discrepancies among the States in fees charged 

to parents or relatives (although in most 

States, residential schooling for blind and deaf 

pupils was without cost to the family). 

Local units of NARC commonly had 

"institutional committees" which served 

largely as a channel for contributions of 

amenities not provided by the State and for 

volunteer service. This practice encouraged 

the institutions to open their doors more 

readily to parental visitation and 

"abandonment" decreased. 

On the other hand, many institutions did make 

serious attempts within the limits of restrictive 

budgets to improve the quality—or at least 

the cleanliness and attractiveness—of the 

environment and to improve the program. 

The annual cost to the State 

governments for operation of the 

institutions was in excess of $200,000,000 by 

1960. 

In the latter half of the 1950's under the 

instigation of NARC's National Residential 

Care Committee, State counterpart 

committees began to invite legislators to visit 

the institutions with them. Many did so, and 

what they saw was sufficiently shocking to 

begin a slow legislative process of 

institutional reform and improvement. It was 

to be a long process, however, and could 

amount to little more than patchwork until two 

fundamental steps could be taken: the 

development of residential alternatives in the 

community in order to reduce the institutional 

population, and firm standards of residential 

service based on a reversal of the custodial 

concept. 

NARC worked steadily to improve the 

humane quality of institutions, to transform 

their mission from custody to training, to alter 

the laws that govern admission, cost to 

families and release. In the early 1970's it 

joined with others in suits to halt the 

prevailing practice of unpaid labor by 

residents, and sought to bring about a steady 

reduction in the need for central, all-purpose 

institutions. 

45 
The first phase of the effort was directed 

toward improving State management practices 

and State financial support to achieve more 

humane conditions. Spearheaded by AAMD, 

the second phase involved establishing 

professionally accepted standards for residential 

institutions, both public and private. 

This move led eventually to the establishment of an Accreditation Council on 

Facilities for the Mentally Retarded as a 

"categorical council" of the Joint Commission 

on Accreditation of Hospitals. NARC is a 

participating member of the AC/FMR. Its 

standards for residential facilities were invoked 

both by Judge Johnson in Wyatt v. Stickney, a 

landmark decision on the rights of retarded 

persons in institutions, and by HEW, in its 

regulations on intermediate care facilities for retarded persons.

The third line of effort was directed toward 

Federal action supporting institutional 

improvements through demonstration grants, 

and limited participation for eligible persons in 

institutions that qualify for Medicaid assistance 

under the Social Security Act. 

A fourth effort was directed toward the use 

of new concepts and models for smaller, locally 

based, service-oriented residential institutions 

or "regional centers." 

During the 1970's NARC has participated in 

class action suits to force, under court order, 

developmental, humane treatment and conditions -

in existing institutions. NARC has also initiated 

living arrangements supported by community 

services, sometimes promoting State legislation 

to bring about this move. 

The class action suits in which NARC has 

joined with others either as litigant or in the 

role of amicus curiae, have involved countless 

hours of preparation and testimony. Dr. Philip 

Roos, NARC Executive Director since 1969, 

has frequently appeared as an expert witness, 

especially in the Wyatt case and the 

Willowbrook case. In other instances, State 

ARCs have brought the action, supported by 

NARC leadership, professionals, the Center 

for Law and the Handicapped, the Harvard 

Center for Law and Education, the American 

Civil Liberties Union, and leading professionals 

in the field of mental retardation. The most 

notable of these cases was the Pennsylvania 

ARC action against the Commonwealth of 

Pennsylvania on the "right to education." 

Knowledge for Prevention 

From its inception, NARC has promoted 

research on prevention and amelioration of 

mental retardation. The first Research 

Committee, appointed in 1950, began a careful 

but tentative exploration of ways to promote this 

effort. 

At the convention of 1952 the committee 

proposed the establishment of a Scientific 

Research Advisory Board, composed of 

eminent scientists across the wide spectrum of 

disciplines related to the problems of retardation, 

both biomedical and behavioral. Such a Board 

would guide the research efforts of the 

Association along lines that would be 

scientifically sound and effective. 

The fortunate appointment of Mrs. Lenore 

Davidson of Connecticut as Chairman of the 

Research Committee led to the door of Dr. 

Grover F. Powers of Yale University, "dean" 

of American pediatrics. As one of the founders 

and trustees (along with Mrs. Davidson) of the 

Southbury Training School in Connecticut, Dr. 

Powers had long been interested in mental retardation. He entered into the planning for the 

Advisory Board wholeheartedly and accepted 

the Chairmanship only after NARC had 

established a national office and hired an 

executive director. 

46 
Insisting that the foundation be laid slowly 

and carefully, Dr. Powers enlisted the counsel 

of Leonard Mayo, at that time Director of the 

Association for the Aid of Crippled Children. 

A 2-day conference of scientists explored the 

level of scientific interest and found it to be 

positive and encouraging. 

At the 1953 convention Dr. Powers proposed 

a plan encompassing: (1) a comprehensive 

survey of all research in mental retardation 

currently being carried on or planned for the 

near future, (2) the recruitment and support of 

researchers in mental retardation; (3) the 

initiation and support of research projects 

approved by the Scientific Research Advisory 

Board (SRAB); (4) support of symposia and 

seminars in mental retardation; and (5) the 

establishment of an Institute of Teratology 

(congenital malformations). 

In January 1954, the first NARC headquarters office was opened in New York, with 

Dr. Salvatore DiMichael as executive director. 

NARC's president was Gil Hanke, its 

treasurer was Lee Marino. Dr. Powers then 

began recruiting scientists for membership on the 

SRAB. He brought together a group of 

superbly talented and devoted scientists who 

for the next 15 years provided leadership of 

unique distinction and devotion in the 

promotion of research in mental retardation. 

This contribution of NARC to research was 

of a quite different order from that of any 

other national organization devoted to a 

human malady. It did not collect huge sums of 

money and dispense them in the founding of 

institutes or the support of large grants. It did 

not enter directly into research efforts of its 

own until much later, when the conditions of 

the field had changed. Altogether, NARC 

contributed directly to research only a little 

more than $1 1⁄2 million over a 20-year period. 

Yet the impact of the study was significant, since 

it set the stage for increased Federal support of 

research in mental retardation whose 

cumulative total now reached hundreds of 

millions. How was this done? 

The first stage was the planned survey of 

existing research. Dr. Richard Masland, a 

neurologist from Bowman Gray School of 

Medicine, conducted the survey with grants 

from the Association for the Aid of Crippled 

Children, the National Institute of Mental 

Health, the National Institute of Neurological 

Diseases and Blindness, plus some of NARC's 

own funds. Dr. Masland went beyond 

surveying the literature. He traveled throughout 

the United States and Europe, visiting centers of 

biomedical research to discover for himself 

what the scientists were doing in any and all 

fields that were relevant to mental retardation, 

whether the scientists knew it or not. 

Subsequently, to cover the field of psychological factors in mental retardation, Dr. 

Masland added to his team Drs. Seymour 

Sarason, a Yale psychologist, and Thomas 

Gladwin, an anthropologist from the Human 

Resources Research Office of the George 

Washington University. 

The result was a report of great significance 

and long-lasting effect, published initially 

through several professional channels but 

eventually for wide public distribution by 

Basic Books under the title Mental 

Subnormality. It pointed to two fundamental 

conclusions: (a) the search for the biological 

causes of mental retardation involves 

fundamental research in almost every branch of 

medicine; (b) finding the origins of mild 

retardation as well as some more severe 

conditions requires the study of cultural, 

emotional and educational deprivation and 

ultimately leads into the causes of poverty and 

social discrimination. 

47 
In his report to the 1956 convention, Dr. 

Masland discussed the implications of the 

survey for future action by NARC and its 

Research Advisory Board. He noted that much 

medical research is of direct relevance to 

retardation but the scientists are rarely keyed into 

this problem specifically. He noted also that, for 

long-range research programming, support of 

the scientist himself may be more productive 

than support of short-range limited projects. 

He recommended, therefore, that SRAB 

consider a program of long-term 

commitments to talented research people as an 

alternative to short-term commitment to 

projects; and that in order to bring the 

problems of mental retardation to the attention 

of the medical community, NARC continue 

its campaign to establish well-staffed 

diagnostic units as part of State and 

community medical centers. He proposed 

further that new residential facilities be located 

in close proximity to educational and research 

centers (an echo of Seguin who argued the 

same thing in 1857). 

NARC's policy was deeply influenced by 

these recommendations. It did, in fact, continue 

its campaign to establish diagnostic centers 

in conjunction with research centers. This 

campaign bore fruit in the establishment of such 

centers during the 1950's under the Maternal and 

Child Health program of the Children's Bureau 

and was reflected in the recommendations of 

the President's Panel of 1962 for the 

establishment of mental retardation research 

centers and university affiliated training centers 

in mental retardation, which subsequently came 

into being. 

The policy of supporting individuals with 

scientific promise became the cornerstone of 

the SRAB policy under the chairmanship of 

Dr. Powers and his successor, Dr. Abner 

Wolf. Appointments were made for 2 to 10 

years for a series of NARC Senior 

Investigators and Distinguished Scholars. 

Two of the later were "named" awards, the 

Grover F. Powers Distinguished 

Professorship, held by Dr. Harry H. 

Gordon of Albert Einstein College of 

Medicine (1962-1972) and the Gunnar 

Dybwad Distinguished Scholar, held by Dr. 

Edward F. Zigler of the Yale University 

Department of Psychology (1964-1974). In 

addition, special grants were made to encourage 

and support research people to initiate 

programs which might then secure 

continuing support from other agencies. 

The objective of this program was to give 

the small funds available to NARC's research 

program a multiplier effect. The support-ofpersons policy was later adopted by the 

National Institutes of Health in its Career 

Research Awards program. The seed-money 

awards paid off in launching significant 

programs which drew support from other 

agencies with more substantial resources. 

NARC was effective in establishing research support programs within the Government. NARC's Board of Directors and the 

SRAB were convinced that the amount of 

money directly available to NARC for 

research would always be limited. The 

nature of the organization, built on local 

efforts and reflected in a fund-raising policy 

that left the bulk of funds for local and State 

operations, precluded any parallel to such 

research-oriented fund-raising as that of the 

National Cancer Society, National 

Foundation, Heart Association and others of 

the kind. 

Hence, NARC must serve more as a 

stimulus to research support than as a direct 

provider. The result was concentration on 

developing Federal sources of support through 

judiciously planned legislation. This effort had 

its initial success in 1956, when Congressman 

John Fogarty (D.-R.I.) earmarked $500,000 

in NINDB and $250,000 in NIMH funds for 

mental retardation research. Fogarty also secured 

initial funding earmarked for MR-related 

research under the Cooperative Research in 

Education Act. 

48 
NARC also supported the efforts of Dr. 

Robert E. Cooke, Chairman of the Department 

of Pediatrics at the Johns Hopkins Medical 

School and one of NARC's first 

Distinguished Scientists, to secure the passage of 

legislation establishing the National Institute of 

Child Health and Human Development. This 

Act, one of the first signed by President 

Kennedy, has had an identifiable MR program 

since its launching under Dr. Robert Aldrich, 

its first director. 

Among other efforts of the early periods, 

NARC cooperated with the United Cerebral 

Palsy Association to launch the first massive 

longitudinal study of perinatal development 

beginning in the late 1950's. Supported by 

NINDB (now NINDS), the cooperative 

project involved 14 medical centers across the 

country, amassing enormous amounts of data on 

56,000 pregnant women. The study followed 

the offspring to the age of seven, and has 

yielded a rich mine of information on the 

correlates of deviant development. 

As a consequence of the Kennedy legislation 

(PL 88-164) as implemented under President 

Johnson and with support from the Kennedy 

Foundation, 12 Mental Retardation Research 

Centers were established at outstanding 

universities, while University Affiliated 

Facilities for training, service and research 

were constructed at 19 centers. Although 

Federal appropriations for these programs have 

waxed and waned over the years, the increase 

in the volume and quality of research relating to 

mental retardation has been extraordinary, 

considering its low estate in 1950. 

After nearly two decades of supporting and 

stimulating basic biomedical and behavioral 

research, NARC, in 1971, called a temporary 

moratorium on new grants in order to 

reappraise its research role. The outcome of 

the review was to reaffirm that NARC funds 

for direct research grants would always be 

severely limited; that agencies of the Federal 

Government had been and must continue to be 

the source of support for major and especially 

basic research; that the principle of supporting 

persons, not only projects, had been 

recognized by the National Institutes of Health 

in their Career Research awards, and that NARC 

members were expressing high priority for 

applying research efforts to program 

development and service related problems. 

A new Research Advisory Committee 

was organized to work with a staff Director of 

Research, the first time such a position had 

been authorized. This program was launched in 

1972, with a substantially new research thrust 

directed at the outset toward the following 

priority areas: 

 Residential models: 

Research to develop the best models for 

alternative programs for residential care. 

 Home training techniques: 

Development of field-tested ways of assisting 

parents and others within the home to utilize 

the most effective training techniques for their 

mentally retarded children. 

 Prevention—behavioral aspects: 

Support of basic and applied research in 

behavioral fields related to the social, familial, 

cultural causes of retardation and the 

techniques of prevention or alleviation. 

 Prevention—biomedical aspects: 

Support of basic and applied biomedical 

research aimed at prevention of retardation 

from biological and organic causes. 

 Organizational dynamics: 

Exploration of the dynamics of the voluntary 

movement, aimed at encouraging and 

facilitating involvement of citizens in 

bringing about social change to the benefit of 

mentally retarded citizens and reducing the 

occurrence of mental retardation. 

These objectives were to be periodically 

reevaluated through membership surveys and 

other criteria. 

Organizational Development to the Mid-1970's 

NARC began its life as a grass-roots organization and has essentially remained so. Its 

dynamic thrust has come from the personally 

motivated concern of its members, the parents 

of mentally retarded children. Increasingly, the 

membership has broadened to include other 

than parents—civic-minded citizens of all 

49 
kinds, professional workers in the field, and, 

above all, young people who developed a quasiindependent organization, Youth-NARC, 

with divisional status in NARC, and over 

20,000 members in all States. 

Organizationally, NARC is made up of 

three levels: the local member unit constituting 

the broad base, the State member unit, and the 

national organization. It is divided into six 

regions for administrative purposes. 

Under broad national policies, local and State 

units operate with a great deal of autonomy. 

The ultimate governing authority is the 

representative delegate body with 

proportional voting power at the annual 

national convention. The Board of Directors 

sets the policy. It is composed of national 

officers, regional vice-presidents, president of 

Youth-NARC and regionally representative 

directors. 

An executive director heads NARC's 

administrative staff, with regional representatives managing regional offices, and a 

Governmental Affairs Staff with offices in 

Washington, D.C. Overall, the regular 

national staff now consists of 68 persons, with 

an additional 41 serving on special grant 

projects. Four men have served the 

organization as Executive Director in its 25-

year history: Dr. Salvatore DiMichael from 

1954 to 1957; Dr. Gunnar Dybwad from 1957 

to 1964; Mr. Luther Stringham from 1964 to 

1969, and Dr. Philip Roos from 1969 to the 

present. 

The headquarters of the organization was 

established in New York City in 1954 and 

moved to Arlington, Texas in 1970. 

Basic financial support of NARC is 

maintained through a combination of annual 

fund-raising activities carried out by the 

member units and United Funds, contributions, 

and special events. State and national budgets are 

derived by sharing formulas which leave the 

major portion of funds in the local community. 

In varying degrees and for varying purposes, 

supplemental funds at all levels are derived from 

grant, contract and other miscellaneous sources. 

Working With Government 

The ARCs have worked with public 

bodies at every level, municipal, school 

district, county, State, Federal, even international. From the middle of the nineteenth 

century, mental retardation has been 

increasingly recognized as a public problem as 

well as an intensely personal one. 

NARC has always held the cardinal 

principle that the retarded person has legal and 

moral rights as a human being. The challenge 

has come from delineating those rights and 

protecting them. Whether the mentally 

retarded person is a "demon in disguise" or an 

"angel unaware" or just a human being with 

problems, his interests are a social 

responsibility and the solution of his problems 

are in the public interest. 

Yet, as we have seen, the public has not 

always known what its responsibilities are, or 

what the best solutions might be to problems 

which are terribly costly to society. So 

NARC's intensive programs of public 

information and public enlightenment have been 

targeted on bringing about change through 

popular interest and political action—citizens 

petitioning their government for representation 

and for the redress of grievances. 

Local and State units were free to act 

autonomously at local and State levels, so long 

as they adhered to nationally determined 

policies of a general nature. As a consequence, 

there has been considerable variation in the 

intensity and direction of political action and in 

the outcomes in terms of laws, regulations and 

the resultant patterns of service delivery for 

the retarded population. This is, of course, 

consistent with the pluralism that characterized 

American society, and has both the advantages 

and disadvantages of that system. 

50 
At the time NARC was organized, a 

number of Federal agencies and programs 

already in existence were furnishing initial 

points of contact and cooperation. These 

included the Children's Bureau, established in 

1912; the Office of Education, established in 

1920 with a Section on Exceptional Children 

and Youth which had been active since the mid1930's; the Social Security Administration, 

established in 1935; the Office of Vocational 

Rehabilitation, administering legislation first 

enacted in 1920; the National Institute of 

Mental Health, created in 1946 by the National 

Mental Health Act, and enabled (uniquely 

among the National Institutes of the U.S. Public 

Health Service) to provide supports for training 

and service as well as for research. 

NARC 

An early inter-organization conference on 

prevention of mental retardation, held in 1964. L. 

to r.: Dr. Robert Cooke, Dr. Edward Davens, 

Leonard Mayo, Dr. John Fettinger, Luther 

Stringham, and Dr. Julius Richmond. 

The NARC Legal and Legislative Committee (later divided into "Legal Advocacy" 

and "Governmental Affairs") initially 

focused on the urgent need to revise State 

statutes relating to education and institutional 

management. 

In 1953, however, conferences with Arthur 

Hill and Romaine Mackie in the U.S. Office 

of Education (USOE) and collaboration with 

the Association for the Aid of Crippled 

Children, began the 20-year campaign that led 

to substantive Federal legislation supporting 

State programs for the education of retarded 

children. It was also in 1953 at the instigation 

of NARC that President Eisenhower proclaimed National Retarded Children's Week, 

now an annual event. 

The advent of Dr. DiMichael as Executive 

Director in 1954, with his background in the 

Federal service, gave real impetus to 

NARC's Federal legislative program. Rep. 

Fogarty of Rhode Island was drawn into the 

orbit of NARC's interest by a close friend in 

the leadership of the Rhode Island ARC. 

Fogarty was in a strategic position as 

Chairman of the Subcommittee on Health, 

Education, and Welfare, and Labor of the 

House Appropriations Committee. 

His interest was aroused and sustained until 

his death in 1967, by close contact with Dr. 

DiMichael and later Dr. Gunnar Dybwad, the 

succeeding NARC Executive Director, and 

with the volunteer leadership of NARC, 

notably Presidents Vincent Fitzpatrick and 

Elizabeth Boggs. 

Together with his counterpart in the Senate, 

Lister Hill of Alabama, Fogarty made it 

possible for the legislative objectives of 

NARC to be fully reflected during the late 

1950's and the critical years of the early 1960's 

through infusions of appropriations into existing 

"generic" programs. 

The basic NARC document which provided a foundational guide to Congressman 

Fogarty and Senator Hill was presented to 

them in January 1956, entitled: Proposals on a 

Federal Program of Action in 1956-57

51 
for America's Mentally Retarded Children 

and Adults. For the first time a fully 

comprehensive attack on the problem was 

outlined, with clear delineation of the necessity 

for a coordinated effort of many Federal 

agencies and programs. 

The central emphasis was on the need for 

services at community level, spelled out in a 

ten-point program: 

1) community diagnostic-treatment clinics 

with parent counseling; 

2) home counselors to assist parents in home 

management; 

3)special nursery classes, and classes with 

normal children where possible; 

4)special education and vocational training 

for educable children and adults; 

5)special education with social training for 

those considered trainable; 

6)sheltered workshops for adults with 

terminal employment where necessary; 

7) community day-care centers for the 

more severely retarded; 

8) vocational rehabilitation placement 

in regular employment; 

9) dynamic, community-minded institutions; 

10) research and professional training of 

personnel. 

As NARC grew and matured, its influence 

in Washington grew and developed likewise. 

The legislative outcomes of this influence will 

be summarized in following chapters. 

The next major involvement of NARC 

on this national level was the preparation for 

the Golden Anniversary White House 

Conference on Children and Youth of 

1960. NARC played a key role in making the 

issues of mental retardation prominent in the 

deliberations and outcomes of that conference. 

The President of NARC, Dr. Elizabeth M. 

Boggs, was appointed by President 

Eisenhower to the President's National 

Committee in 1958. The working sections on 

retardation were organized and conducted with 

her guidance. In virtually all States ARC 

members were represented on the State 

planning committees and in the conference 

delegations. 

The preparatory report on the nature and 

role of NARC as a national organization was 

written by Dr. Boggs. This was NARC's 

landmark document, Decade of Decision. 

Most important of all, the goals and program 

strategies outlined by the conference in the 

field of mental retardation laid the foundation 

for the national program espoused by the 

Kennedy administration 2 years later. 

The election of John F. Kennedy to the 

White House in 1960 was, of course, a major 

turning point in the history of mental 

retardation and in the role played by NARC 

in that history. 

For some years, the Joseph P. Kennedy, Jr. 

Foundation had contributed substantially to care 

and treatment of retarded children and adults 

under Catholic auspices, and more recently to 

research into causes. The Kennedy family's 

personal interest in the problem was not 

widely known or publicized until 1962, when 

Eunice Kennedy Shriver published an article in 

the Saturday Evening Post on the life of her 

retarded sister Rosemary. 

Early in President Kennedy's administration, 

Mrs. Shriver introduced a proposal to her 

brother to appoint a special study group to 

consider a national approach to the prevention 

and management of mental retardation. 

The announcement of the appointment of 

this presidential blue ribbon panel was timed to 

coincide with the 1961 NARC convention, 

meeting in San Francisco. 

As described by Dorothy Garst Murray, the 

announcement came on an 11 p.m. radio 

broadcast reporting the President's news 

conference held that day. To a group 

assembled in the Executive Director's 

52 
suite, comprising NARC officers, the Research 

Committee and Scientific Research Advisory 

Board and the Residential Care Committee, the 

words of the President came as a dramatic and, 

to many, an unanticipated development: 

I have announced my intention to appoint a 

panel of outstanding scientists, doctors and 

others to prescribe a program of actions in the 

field of mental retardation. . . . We, as a 

nation, have far too long postponed an 

intensive search for solutions to the problems 

of the mentally retarded. That failure should 

be corrected. . . . 

Eleven months later, the Panel presented its 

report: National Action To Combat Mental 

Retardation. Its contents will be considered 

in a following chapter. 

NARC was consulted in the selection of the 

27-member group chaired by Leonard Mayo, 

with George Tarjan as vice-chairman, and 

including Elizabeth Boggs, and persons from 

many fields with whom NARC had worked 

actively over the years. Mrs. Shriver was 

appointed consultant and was greatly 

instrumental in the Panel's efficiency. 

NARC and AAMD worked constantly 

with the Panel's staff. 

It was, however, following the publication 

of the Panel's report that NARC's involvement 

reached its climax. The Panel itself was 

dissolved when its assignment was completed. 

Then followed the period of promulgation, 

assimilation, and implementation, in all of 

which NARC played key roles. 

At the White House, a successor to the 

Panel was established early in 1963 with the 

appointment of Dr. Stafford L. Warren, ViceChancellor Emeritus of the Health Sciences at 

the University of California at Los Angeles, as 

Special Assistant to the President on Mental 

Retardation. 

Throughout 1963 much of the attention of 

the NARC staff was centered in this special 

White House office. Dr. Dybwad served as a 

special consultant to Dr. Warren on a half-time 

basis; Thomas Murphy, NARC's Director of 

Public Information, served a three-month 

assignment there. 

As President Kennedy translated the 

recommendations of the Panel into legislative 

recommendations to the Congress, NARC's 

role was further magnified. 

In conjunction with the Warren office, 

NARC participated in organizing a White 

House Conference of representatives of State 

governments held at Airlie House, Virginia, 

in September of 1963. 

The Advertising Council began a three-year 

national campaign to provide public 

information on mental retardation. It was 

supported jointly by HEW, the Kennedy 

Foundation and NARC. 

An advisory council was formed to assist 

Dr. Warren in maintaining ties with former 

members of the President's Panel, AAMD, 

NARC, the Kennedy Foundation and other 

individuals and groups. 

A move to implement the neglected issue 

of "mental retardation and the law," dealt with 

in a special report of a task force of the Panel, 

led to a major study by the National Law 

Center of George Washington University 

under an NIMH grant. 

The NARC convention of 1963, held in 

Washington, D.C., was a singularly significant 

53 
occasion. The first bill implementing the 

Kennedy program to combat mental 

retardation, PL 88-156*, was signed into law 

in a ceremony at the White House in the 

presence of many parents and leaders of national, 

State and local associations gathered for the 

convention. 

At the convention luncheon following, 

President Kennedy addressed the gathering and 

presented NARC's Distinguished Service 

Award to Dr. Richard Masland. It was he who 

had authored NARC's original research study 

and subsequently, as Director of the National 

Institute of Neurological Diseases and 

Blindness, had fostered the collaborative 

perinatal project. The President spoke 

feelingly about the whole issue of retardation 

and its impact on family life. It was a high point 

in NARC's history, soon to be followed by the 

bleak tragedy of assassination. 

As President Johnson took up the reins of office, 

the continuation of Dr. Warren as Special 

Assistant to the President was of great 

importance, allowing for continuity and further 

advancement of the national programs. Once 

again, NARC was heavily involved, especially 

in implementing legislation during the first 

Johnson administration. Stafford Warren's 

office was terminated in 1965. In 1966 President 

Johnson established the President's Committee 

on Mental Retardation. 

Following the enactment of PL 88-156 with 

its provisions for State planning, a major 

portion of NARC effort was given to involving 

the State and local NARC's in the planning 

process. 

NARC distributed planning guidelines to its 

member units and provided technical assistance 

through regional staff. 

NARC's analyses of Federal activities 

became more sophisticated when Robert M. 

Gettings joined its staff in 1965. He devoted his 

full time to legislation for three years before 

joining the staff of the President's Committee in 

1968. In the spring of 1969 a Washington 

office was opened to monitor Federal activity. 

Following the Kennedy and Johnson years, 

NARC has continued to play an intensive and 

effective role in government relations. This has 

taken three principal directions: (1) in the 

further evolution of Federal legislation 

impacting on the retarded, both enabling and 

appropriational, including "generic" legislation 

such as the Social Security Act, housing 

legislation and education bills; (2) in 

interaction with those responsible for the 

administration of Federal programs; (3) in 

assistance to State ARCs in the development of 

State legislative programs. 

* A short time later, President Kennedy 

signed Public Law 88-164, the companion 

piece of legislation, which provided for the 

construction of comprehensive mental 

retardation research centers, University 

Affiliated Facilities for personnel training, and 

community facilities. 

54 
Changing Viewpoints and Policies 

As mental retardation programs were increasingly developed under public and private 

auspices, NARC's need to provide services 

diminished, and the need to expand and 

safeguard the quality of services increased. 

In 1957, John Fettinger, NARC Treasurer, 

was appointed to chair a special committee to 

study the relationships, fiscal and programmatic, 

between local and national levels of the 

organization. The outcome was a report of 

far-reaching consequence, known as the 

"Fettinger Report." It emphasized that the 

strength of NARC was the strength of a 

national movement, manifested in strong State 

units and strong local units; that local autonomy 

must be limited by national policy, that local 

preoccupation with service enterprises can be 

fatally damaging to more inclusive and longrange goals, that fiscal responsibility to the 

organization must be based on freedom from 

overburdening service operations. 

The balance of local autonomy and national 

direction can be maintained, the report asserted, 

only if a fundamental policy is maintained. 

That policy: to obtain services, not to provide 

them. 

In order to obtain services, units must 

frequently conduct pilot and demonstration 

projects, but the goal should be that public and 

private agencies assume long-range 

responsibility to provide and operate these 

services. 

This "obtain not provide" issue was hotly 

debated over a period of seven years before it 

was finally adopted as official NARC policy 

in 1965. 

Another major development in NARC 

policy represented a change in the projected 

image of the retarded person as an essentially 

helpless child-like being who elicited pity, to 

that of an impaired person with the basic human 

and civil rights of all citizens. 

The need for change in the image became 

strikingly evident as units increasingly 

promoted programs for retarded adults and 

insisted that child-related programs of education 

and training be developmentally directed 

toward adult functioning. 

This change coincided with a worldwide 

movement of parent organizations from an 

emphasis on charity to an emphasis on rights, 

culminating in a "Declaration of Rights" for 

the mentally handicapped by the 

International League of Societies for the 

Mentally Handicapped in 1968. The 

declaration became the basis for a statement of 

rights for mentally retarded persons adopted by 

the General Assembly of the United Nations in 

1972. 

As early as 1963 discussion began to develop 

concerning the name of NARC which 

emphasized the child image. Many alternatives 

were proposed, but it was not until 1973 that the 

name was officially changed to National 

Association for Retarded Citizens. The move 

was precipitated by two adults who, having 

grown to adulthood in an institution for the retarded, made an eloquent plea not to be called 

children but to be recognized as citizens of 

the community. To reflect the change of name 

and public image, NARC also changed its logo 

to reflect both adult and child in a positive way. 

55 
The rising wave of class action suits 

brought in defense of the constitutional rights 

of retarded persons during the 1970's was a 

direct correlate of the change in the name, the 

projected image and the emphasis on rights. 

A third and closely related evolving policy 

issue is related to minority, impoverished and 

other disadvantaged groups. NARC became 

increasingly conscious of its own makeup as a 

middle-class organization. Its own demographic 

make-up often limited the genuine expression 

of its charter purpose "to promote the wellbeing of all retarded everywhere." There is increasing concern within NARC and its units 

to be fully representative of all sectors of the 

population and the needs of the disadvantaged in 

society—a concern leading to serious efforts at 

implementation. 

Youth Involvement 

The insurgency of youth in the 1960's was 

an expression not only of revolt against 

traditional values but also of eagerness to 

participate in human service. In this climate, 

Youth-NARC was born. From small 

beginnings involving largely the personal 

interests of brothers and sisters of retarded 

children, it grew in a period of eight years to 

an organization of more than 20,000 young 

people who saw in the needs of retarded persons 

an opportunity for immediate service and, in 

many instances, a career. 

Extending its organization into virtually all 

States, Youth-NARC is involved in a host of 

local service activities for retarded youth, in 

State legislative activity, fundraising through 

such activities as Hike-Bikes. It has sponsored 

efforts of national concern, such as a planning 

conference on lead poisoning, and has held its 

own national conventions with attendance 

reaching nearly a thousand youths. 

During 1974 Youth-NARC focused on: 1) 

communications through an association 

newsletter, a new brochure, Youth Wanted, and 

a monthly Cabinet Newsletter to keep its own 

leaders informed; 2) leadership development; 

and 3) effective interaction through programs 

and audio-visual aids designed to assist local 

members' interaction with the normal 

community. 

The leadership of Youth-NARC has been 

outstanding, typified by young people such as 

1971 President Kenneth Robinson, a Black 

student who was chosen as America's 

Outstanding Teenaged Boy by the 

Outstanding Americans Foundation, held 

membership on the Senior NARC Board of 

Directors, and served a three-year term on the 

President's Committee on Mental Retardation. 

The International Scene 

The organization of parents and volunteers 

which occurred in the United States was 

paralleled by similar movements in other 

countries. The movements varied 

considerably. On the whole, however, there 

was great similarity with the development in 

the United States and the issues which generated 

organization were very much alike. 

This parallel development was not primarily "missionary" outreach from one 

country to another, but a spontaneous growth 

of similar manifestations of conditions. 

Some countries had advanced further and 

sooner than the United States in developing 

services either under State authority, as in 

Denmark and Sweden; under religious authority 

as in Ireland, Spain, and the Catholic 

countries generally; under private and State 

authority as in France, England and the United 

States, or under a mixture of all three, as in the 

Netherlands. 

56 
Relations between NARC and the 

parent-inspired movements in other countries 

owe much to many people, but principally to 

two women who carried on an unbelievable 

volume of correspondence with parents and 

other concerned people all over the world. 

They are Mrs. Dorothy Moss and Dr. 

Rosemary Dybwad. 

Mrs. Moss was the second Secretary of 

NARC. As early as 1953 she became an 

informal clearing house for the exchange of 

information and experience among people 

from all parts of the world. 

Appointed chairman of NARC's first International Relations Committee in 1954, her 

first action was to publish a 20-page bulletin 

Let's Get Acquainted, reporting the activities in 

mental retardation in 22 countries. The 

Committee also compiled a list of all the 

known schools for retarded and multiplyhandicapped children throughout the world. 

As in the United States, the first cry of the 

parents was for schooling for their handicapped 

children (consider the task of compiling such a 

list of schools today, a quarter century later!). 

Dorothy Moss, in collaboration with 

Naomi Chamberlain published The Three R's 

for the Retarded, a small book offering 

practical help to parents struggling with the 

day-to-day problems of care and training for 

their retarded children. It found its way in 

quantities throughout the United States, Canada, 

Australia, New Zealand, England, Scotland, 

Ireland and was translated into Portuguese, 

Spanish, Dutch, and Italian. 

By 1957 NARC was in active contact with 

associations in 40 countries, and in 1959 with 60, 

of which 20 had national organizations. It was at 

this time that Dr. Rosemary Dybwad entered 

the international scene. A professionally trained 

sociologist, and wife of Gunnar Dybwad, 

NARC's indefatigable second Executive 

Director, Rosemary worked for four years as 

an unpaid member of the NARC staff in charge 

of International Relations. She was assisted by 

Mrs. Anne Fenn, who also staffed the 

membership department of NARC. 

She built an immense library of international 

material, and in 1959 began a series of 

International Newsletters as a means of 

intercommunications, supplementing the tours 

of the many visitors from abroad. 

These international activities laid a foundation 

for NARC to participate in the inevitable 

coalescence of national organizations into 

international bodies. A foundation was also laid 

by which the Kennedy Panel, when it was 

deliberating the recommendations, was given 

rich background information for the briefing of 

missions to England, the Netherlands, Denmark, 

Sweden, and the Soviet Union, to discover 

from those countries the methods of dealing with 

the problems of mental retardation developed 

elsewhere. 

NARC worked to inject discussions of 

mental retardation into international conferences 

on medical problems, into the deliberations of 

the World Federation on Mental Health and 

other professional groups. 

In 1961 the European League of Societies 

for the Mentally Handicapped was formed at a 

congress held in London, with more than 400 

representatives from parent associations in a 

dozen or more countries. In 1962 a conference 

was held in Copenhagen representing scientific 

and professional interests in mental retardation, 

attended by leading individuals from all parts of 

the world, including a number of NARC representatives. 

57 
Out of those two meetings developed two 

world-scale international organizations in the 

field of mental retardation: The International 

League of Societies for the Mentally 

Handicapped (ILSMH), representing the 

parent and volunteer national associations; and 

the International Association for the Scientific 

Study of Mental Deficiency (IASSMD), the 

international counterpart of AAMD in the 

United States. 

At the Copenhagen conference the 

Council of the European League expanded its 

scope to become international. Michael Kreider, 

Executive Director of the Michigan ARC, 

was an invited guest at that conference. 

NARC was invited to become a member. 

In October 1963, Dr. Henry V. Cobb, 

Senior Vice President of NARC, represented 

NARC at the Second International Congress of 

the League in Brussels. NARC was accepted 

into membership at that time and Dr. Cobb was 

elected to the Council, later serving as president 

of the League from 1966 to 1970. The International League has served as the principal 

channel for NARC's participation in world 

affairs. 

Congresses have subsequently been held in 

Paris, Jerusalem, Montreal, and in 1975, Dublin. 

In addition, symposiums have been held on 

sheltered employment, residential institutions, 

legislative aspects of mental retardation, 

education of the moderately and severely 

retarded, and .

guardianship. In 1971 NARC 

hosted a symposium of the League in 

Philadelphia on the Role of Volunteers. 

NARC has participated strongly in all of these 

efforts. 

Rosemary Dybwad continues to edit her 

International Newsletter, but now under the 

auspices of the League. She has been a member 

of the League's Council since 1966. 

An outstanding accomplishment of the 

League, with the assistance of NARC's 

representatives, was a report of the 1967 

Stockholm Symposium on legislative aspects. 

This report emphasized the rights of mentally 

retarded persons as citizens of their respective 

countries. The next year, the theme of the 

congress in Jerusalem was "From Charity to 

Rights." The outcome was the adoption of a 

Declaration of General and Special Rights of 

the Mentally Handicapped. Subsequently, this declaration was endorsed by the NARC board which 

was instrumental, along with PCMR, in 

gaining support of the United States 

Government in the adoption of the Declaration 

of Rights by the United Nations General 

Assembly in 1971. 

The International League and the International Association, while pursuing somewhat 

different objectives (similar to the respective 

differences between NARC and AAMD) have 

cooperated through a Joint Commission on 

International Aspects of Mental Retardation. 

One function of this joint effort has been to 

secure recognition by the World Health 

Organization and the inclusion of definite 

programs in mental retardation in the work of 

that UN body. 

The League has also been instrumental in 

developing active mental retardation projects 

in the Rehabilitation Section of the 

Economic and Social Council of the UN, in 

UNESCO, ILO and UNICEF. Thus NARC 

has had a channel of participation reaching 

into the highest international circles. 

NARC's other major channel of international 

participation has been through the Rosemary 

Dybwad International Awards. This annual set 

of awards was established in 1964 on the 

occasion of the resignation of Gunnar 

Dybwad as NARC Executive Director, 

honoring the tremendous work done by 

Rosemary in the international field. 

Each year a number of awards, in amounts 

of up to $2,000, are made to enable Americans to 

undertake mental retardation projects abroad 

and to bring persons from other countries to the 

United States to carry out projects here. One 

of the awards is named in memory of Anne 

58 
Fenn who contributed greatly to the development of NARC's international activity. 

These awards are highly sought after and have 

proven most fruitful in both directions over the 

ten-year period since their inception. 

From the 1970's Into the Future 

Recognizing that to stand still is to move 

backward in a changing world, and that to be 

merely reactive to the world's changes is to 

lose the capacity for initiative, NARC 

embarked in 1974 on a Five-Year-Futures 

program of planning. The plan was directed to 

organizational development on the one hand, 

and programmatic objectives on the other. 

Based on the projected self-image of a 

strong and effective volunteer organization 

dedicated to the benefit of all retarded persons, 

NARC has stated goals for itself to be 

achieved by 1978 in membership growth; 

stability in fiscal management; strengthening 

leadership at all levels; involvement in local, 

State and national affairs; increased visibility 

and public impact on all matters relating to 

mental retardation. 

The programmatic goals and achievement 

strategies which NARC has projected are of 

concern to all others seeking the common 

objective of the improvement of life for 

retarded citizens. We therefore include the 

1974 statement of service goals as adopted by 

the organization. 

NARC FIVE-YEAR PLAN 

Document B 

Service Goals and Achievement 

Strategies Introduction: 

The outlined goals and their achievement 

strategies . . . imply greater or continued use of 

public and private resources in both rural and 

urban areas and in national and international 

fields with appropriate youth, ethnic and socioeconomic involvement. . . . They include 

education, advocacy, community services, research, training, employment and legislation, all 

funded at increasingly adequate levels. 

All goals listed are considered to be high 

priority and can hopefully be accomplished 

within the next 5 years. However, limited 

resources are likely to necessitate giving greater 

emphasis to some areas than to others. The 

priority rating for each goal was obtained by 

having key volunteers and staff independently 

rate the relative importance of every goal on a 

seven-point scale and then averaging these 

ratings. The goals are divided into two 

categories—organizational and service—and 

are ranked within each category. 

NARC Goals: 

1. Achieve an increasingly adequate, 

consistent level of funding of all services needed 

by retarded persons and their families. 

A. Increase Federal, State, and local 

governmental funding through legislation, 

appropriations and regulations. 

B. Inform all levels of the Association of 

the availability of funds from governmental 

and non-governmental sources. 

C. Continue training programs designed to 

increase the expertise of volunteers and staff. 

2. Reduce the incidence of mental retardation 

resulting from specific, identifiable conditions 

such as malnutrition, infections, environmental 

toxins, genetic conditions, and environmental 

deprivation. 

A. Continue and expand public information 

and public education programs, with special 

emphasis on specific target groups (e.g., 

physicians, educators, legislators, and 

representatives of poverty areas). 

B. Encourage legislation, regulations and 

appropriations to effectively implement broadbased prevention programs. 

C. Encourage the support of the private sector 

in effectively implementing broad-based 

prevention thrusts.

59 
D. Foster the development of prevention-oriented 

action programs involving ARCs and other 

appropriate groups. 

3. Achieve an array of developmental institutional and 

community-based residential services for all mentally 

retarded persons, insuring possibility of choice among a 

series of desirable alternatives. 

A. Develop and/or demonstrate and disseminate 

new models of residential services (e.g., human 

engineered environments capitalizing on space 

technology). 

B. Promote a systematic evaluation of residential 

services by appropriate bodies, including ARCS and 

the Accreditation Council for Facilities for the 

Mentally Retarded. 

C. Encourage consumer representation in the 

planning of residential service systems. 

D. Encourage legislation, regulations and appropriations to foster developmental residential services. 

E. Promote the improvement of existing residential 

services, including institutional programs, and 

encourage the development of the full continuum of 

alternative residential models. 

4. Increase the quantity and quality of research 

impacting upon prevention and amelioration. 

A. Encourage legislation, regulations and appropriations to continue and expand mental retardation research efforts. 

B. Escalate public and private financial support of 

the NARC research program. 

C. Encourage and implement research within the 

established NARC research priority areas. 

D. Increase awareness of association members, 

professionals and the general public regarding the 

need for mental retardation research and disseminate 

current findings. 

5. Insure the legal rights of all mentally retarded persons 

in every State, working with appropriate individuals, 

and public and private bodies. 

A. Continue active support of the National Center 

for Law and the Handicapped and other efforts to 

insure the legal rights of mentally retarded citizens. 

B. Encourage and support legislation, regulations 

and appropriations designed to insure legal rights. 

C. Actively participate in selected litigation 

impacting on the legal rights of mentally retarded 

persons. 

D. Disseminate information to State and local 

ARCs concerning major developments in the area of 

legal rights. 

6. Establish effective advocacy systems throughout the 

country in cooperation with interested groups and 

individuals to serve all mentally retarded persons and to 

support, monitor and evaluate all services impacting on 

such persons. 

A. Develop programs to assist ARCS in evaluating 

and monitoring mental retardation services. 

B. Continue to develop strategies for establishing a 

nationwide citizens advocacy network. 

C. Assist ARC and Youth ARC units in increasing 

their effectiveness as advocates for mentally retarded 

persons. 

D. Monitor on an ongoing basis legislative activities 

and their implementation as they impact upon 

mentally retarded citizens. 

E. Identify and/or develop and disseminate effective 

models of protective services. 

7. Achieve appropriate educational, pre-school and 

continuing education services for mentally retarded 

persons of all ages. 

A. Make educators and their organizations aware of 

the need for and feasibility of providing educational 

opportunities for all mentally retarded persons. 

B. Identify and/or develop and disseminate models 

and techniques for educating and training severely 

and profoundly mentally retarded persons. 

C. Help to shape the training, preparation and 

certification of teachers of mentally retarded students. 

D. Enhance the development of pre-school and continuing education programs for all mentally retarded 

persons. 

E. Help to shape the training and practice of persons 

responsible for evaluating and diagnosing mentally 

retarded students. 

F. Insure effective mandatory education laws in 

each State based upon the zero-reject concept and 

insure the implementation of these laws. 

G. Train parents to articulate home training 

activities with the educational system. 

H. Encourage universities and other appropriate 

organizations to develop evaluative tools and 

procedures to assess educational services. 

8. Foster and/or develop demonstration models of 

comprehensive community services for mentally 

retarded persons within any specified area, including 

sparsely populated rural areas. 

A. Identify and/or develop and disseminate effective 

models of comprehensive community services for 

mentally retarded individuals. 

B. Encourage legislation, regulations and appropriations aimed at furthering the development of 

comprehensive community services. 

C. Promote the systematic evaluation and 

accreditation of comprehensive community services 

by appropriate bodies, including the Accreditation 

Council for Facilities for the Mentally Retarded. 

D. Encourage the participation of consumer 

representatives in the planning and monitoring of 

community-based service systems. 

60 
9. Significantly increase the number of mentally 

retarded persons employed and improve their level of 

employment, and expand vocational and pre-vocational 

training. 

A. Continue and expand cooperative efforts with 

other relevant national organizations (e.g., the 

President's Committee on Employment of the 

Handicapped) in order to further vocational training 

and employment opportunities for mentally 

retarded persons. 

B. Seek continuation and expansion of NARC's 

On-the-Job Training Project. 

C. Encourage legislation, regulations and appropriations aimed at increasing vocational training and 

employment opportunities for mentally retarded 

citizens. 

D. Increase NARC's impact on major national concerns which have potential for employing increased 

numbers of mentally retarded persons. 

E. Strive to shape the direction of public school 

programs so as to increase their relevance to the 

vocational goals of mentally retarded persons. 

F. Continue and expand efforts to increase work 

opportunities for mentally retarded persons in noncompetitive settings (e.g., sheltered workshops and 

work activity centers). 

G. Increase the capabilities of State and local ARCs 

to develop increased training and work 

opportunities for mentally retarded persons. 

10. Improve the understanding and acceptance of, and 

commitment to, the cause of mental retardation by the 

general public and by specific target groups (e.g., 

physicians, judges, attorneys, legislators, and public 

school administrators). 

A. Develop and implement a broad media program 

on a year-round basis to promote and increase 

public awareness through television, radio, the press, 

publications, etc. 

B. Encourage the support and understanding of 

specific target groups through such strategies as features in their trade journals, speaking engagements 

at meetings, fraternal gatherings and conventions, 

and publication of pamphlets focused on mental 

retardation as it relates to their particular areas of 

interest. 

The NARC Poster Twins of 1963—one retarded because of PKU, the other 

unaffected—visit President Kennedy in the White House. With the twins and their mother 

are Eunice Kennedy Shriver (1) Leonard Mayo (center), Chairman of the President's 

Panel, and Vincent Fitzpatrick, President, N ARC . 

61 

Chapter 4 

Change Makers and 

Developers

Of all the movers and shakers in the field 

of mental retardation, three nongovernmental 

organizations in addition to NARC stand out 

above all others: the American Association 

on Mental Deficiency, the Council for 

Exceptional Children and the Joseph P. 

Kennedy, Jr., Foundation. 

Others of distinction have made notable 

contributions: the United Cerebral Palsy 

Association, the Epilepsy Foundation of 

America, the National Association for Mental 

Health, the National Association of Private 

Residential Facilities for the Mentally Retarded, 

the National Association of Superintendents of 

Public Residential Facilities for the Mentally 

Retarded, the National Association of 

Coordinators of State Programs for the 

Mentally Retarded, the National 

Rehabilitation Association, the American 

Medical Association, the National Foundation, 

the American Academy on Mental Retardation, 

the American Academy of Pediatrics, the 

National Committee on Research in 

Neurological Disorders, the American 

Psychological Association, the American 

Alliance for Health, Physical Education and 

Recreation, the Jaycees, AFL-CIO, the 

Junior Leagues, Civitan and many others. 

Some of these are primarily concerned with 

related or overlapping disabilities, some are 

professional societies, some are spin-off 

organizations with special interests, some are 

service and philanthropic bodies, who espoused 

mental retardation as a cause; some are devoted 

to research, some to professional development, 

some to service; some are concerned because 

their membership includes those with family 

problems of mental retardation. Without them, 

in their various roles, the history of effort to 

resolve the problems of mental retardation in 

the United States would have been greatly 

impoverished. 

The cooperative interrelationships among 

the four organizations given special attention in 

this report, NARC, AAMD, CEC, and the 

Kennedy Foundation, have been especially 

noteworthy. 

The American Association on Mental 

Deficiency* 

The year 1976 is significant to the nearly 

12,000 members of AAMD because it marks 

the centennial of this, the oldest American 

association of professional practitioners in the 

mental retardation field. It was founded on June 

6, 1876, at Media, Pennsylvania, by six 

superintendents of institutions for the retarded, 

who elected Dr. Eduard Sequin their first 

president. We have encountered these men in 

the early history of institutions in Chapter 1. 

They included, in addition to Sequin, Hervey B. 

Wilbur, of Syracuse; his brother, T. C. Wilbur, 

who had gone to Illinois to found the school 

at Jacksonville; Dr. G. A. Doren, of 

Columbus, Ohio; H. M. Knight, of Lakeville, 

Connecticut; and I. N. Kerlin, of Media, 

Pennsylvania, who convened the original 

meeting and was the sustaining force of the 

organization for a quarter century. Samuel 

Gridley Howe, from Massachusetts was not 

among them, having died only a few months 

earlier, nor was his successor present. The 

organization was named the Association of 

Medical Officers of American Institutions for 

Idiots and Feeble-Minded Persons. 

Among the purposes of the new organization 

was: 

. . . the discussion of all questions relating to the 

causes, conditions, and statistics of idiocy, and 

to the management, training, and education of 

idiots and feebleminded persons . . . 

*PCMR is indebted to Dr. James Clements, Past 

President of AAMD, for much of the material 

of this section. 

63 
Haskell (1944, p. 111) notes that among the 

stated purposes also was support to the 

development of new similar institutions 

through the country, which leads to the 

suspicion that Howe, had he lived, might not 

have lent his enthusiastic support. 

The group planned an annual meeting which 

would serve as a forum for discussion of 

issues of major concern, and for publication of 

the Proceedings. From 1876 to 1896, the annual 

Proceedings constitute a chief source of our 

knowledge of the institutional movement of the 

nineteenth century. They record the growing 

preoccupation with custodial management, 

the evolution of concepts of training, and the 

emergence of the increasingly negative attitude 

toward the mentally deficient person. In 1896 the 

Journal of Psycho-asthenics was launched, 

replacing the Proceedings and providing a 

more frequent and more scientific vehicle for 

the growing professional interest in mental 

retardation. The Journal was discontinued in 

1918, replaced once again by the annual 

Proceedings until 1940 when the American 

Journal of Mental Deficiency (AJMD) was 

established as the official organ of the 

organization. In 1962 a second official 

journal, Mental Retardation, was launched as 

a vehicle for expression of opinions, reports on 

developments in the field relating to services, 

applied research, and general matters of interest; 

AJMD was restricted to reports of original 

research, theoretical papers, and critical review 

articles. Although an occasional Monograph 

Supplement had been published by AJMD 

from time to time, this practice was discontinued 

in the 1960's but resumed in 1973 as the AAMD 

Monograph Series. 

In the meantime, the association itself 

underwent change. In the early 1900's, expansion 

of programs both within State institutions and 

in public and private schools and clinics 

brought in a wider range of professional 

disciplines, especially educators and psychologists. 

Membership, originally limited to medical 

officers, was broadened, although institutional 

superintendents remained preponderant. The research interest stimulated by the new genetics, 

psychometrics and criminology began to 

generate a host of issues paralleling those of 

management. In 1906 the name was changed to 

the American Association for the Study of the 

Feebleminded. The objectives were restated to 

include: 

. . . the study of all subjects pertaining to 

mental disease, deterioration, or defect 

known as feebleminded, including the 

instruction, care, treatment and promotion of 

the best interests of the feebleminded . . . 

The Association had grown slowly in its 

early years, numbering only 132 in 1891. It was a 

compact group of men who took their 

professional mission with a great sense of 

public responsibility for objectives that were by 

no means popular in the medical profession. 

Their writings which, in the early years, had 

been filled with a religious humanitarianism, 

now were devoted to institutional expansion and 

to delineating the social menace of feeblemindedness. The objectives of the Association 

became centered on the problem of preventing 

the proliferation of mental (and moral) defect or 

neutralizing its social dangers by segregation 

and control-oriented training, which was then 

interpreted (by sometimes curiously strained 

reasoning) to be in the best interest of the 

retarded person himself. 

By 1924, however, the atmosphere had 

begun to change. The exaggerations of the 

negative eugenics movement were being 

modified, mildly retarded persons were being 

assimilated into adult society, the values of 

public special education were emerging, and 

the problems of defective delinquency were 

being seen in more enlightened sociological 

terms. The Association began to express its 

purposes along broader lines, with less exclusive 

emphasis on institutional segregation and more 

emphasis on diversified forms of individual 

welfare. The Proceedings of 1924 stated the 

general purpose of the Association in these 

terms: 

. . . to study and investigate all subjects 

pertaining to the cause, prevention, 

instruction, care and general welfare of the 

mentally deficient . . . 

64 
Specific stated objectives were: 

To determine more exactly the causes of mental 

deficiency (broad genetic explanations were no 

longer sufficient). 

Early recognition (the importance of early 

treatment and amelioration was emerging). 

Directing training in country schools (urban 

special classes were becoming common; the 

rural schools provided nothing). 

Establishing special classes in towns and cities (a 

movement which had burgeoned, then slackened 

in the 1920's). 

Proper after-care (individuals paroled or 

discharged from institutions or emerging from 

public schools, were in danger of delinquency, 

unemployment and other difficulties if not given 

support—which then was virtually non-existent). 

Instruction of parents (the problems of home 

management were being recognized, along with 

the possibilities of improving home resources). 

Special training of teachers (special classes were 

often given to the least qualified teachers as a 

penalty for incompetence). 

Supervision in the community (it was recognized 

that despite the growth of institutional care, the 

vast majority of retarded people were remaining 

in the community and vulnerable to the problems 

of marginal adaptation). 

Parole for all suitable institutionally trained 

mentally defective persons (a return to the 

objective of rehabilitation, but this was 

counteracted in considerable measure by the economic dependence of institutions on resident 

labor of the most capable). 

A mental examination of persons accused of 

crime and all inmates of penal institutions (this 

reflected the beginnings of modern penology and 

concepts of legal responsibility; unfortunately, 

the answer to identification as delinquent defective was still segregation, not habilitation). 

Special provisions for defective delinquents (this 

led to new forms of security institutionalization, 

and involved perpetuation of a distinction 

between "good" morons and "bad" morons).

This report in the 1924 Proceedings of the 

Association reflected notable advancement in 

the professional viewpoints of those most 

closely associated with the mentally retarded 

population. Although seen as still a problem in 

the domain of medicine, it was recognized that 

the solutions depended on the talents of many 

professions. The report noted that "these 

objectives require cooperation on the part of 

psychologists, psychiatrists, teachers, social 

workers, parole officers, prison officials, 

physicians and all intelligent citizens." 

In 1933 at the annual meeting in Boston, the 

name of the organization was changed to its 

present one, the American Association on 

Mental Deficiency (AAMD), its membership 

was enlarged and more diversified. When the 

AJMD was launched in 1940, the membership 

stood at 664. Growth from that time was on a 

rising curve, to 1,659 in 1950, 5,017 in 1960, 

and leveling off by 1975 at nearly 12,000. Fifteen divisions and subdivisions were then 

recognized, and geographically 10 regional 

divisions had been developed as well as 22 

incorporated State and local chapters. Although 

institutional administrators are now in the 

minority, they continue to play a strong role in 

the affairs of the organization in terms of its 

total objectives. For their more specialized 

housekeeping concerns they have now formed 

two spin-off organizations, the National 

Association of Superintendents of Public 

Residential Facilities for the Mentally Retarded 

and the National Association of Private 

Residential Facilities for the Mentally Retarded. 

With the rising tide of the 1940's, 50's, and 

60's, many individuals played influential roles 

in the history of the organization.* Two may be 

given special mention here. One was Dr. Neil E. 

Dayton, who, in addition to a term as president 

and as editor of AJMD, served for more than 20 

years as Secretary and Treasurer. His office at 

Mansfield State School in Connecticut was, in 

truth, the national headquarters of the 

Association over a long period of years. 

Growth of membership and expansion of 

activity led to the establishment of a national 

office in Washington, D.C. in the early 1960's. 

*A history of AAMD concentrating on the 

individuals providing leadership through the first 

century of its existence is in preparation by Dr. 

William A. Sloan and Harvey A. Stevens. 

65 
Another outstanding leader was Dr. 

Herschel W. Nisonger of Ohio State University, who secured funding for the 

"technical projects" of the Association for 

which a staff was assembled in Columbus in 

1959. One outcome of these projects was a 

movement to improve the quality of residential 

institutions through the development of peerapproved standards of professional quality and 

humane treatment. 

Through periodic revisions of its Constitution, 

AAMD has evolved a refined statement of 

purposes which represents the essential elements 

of a modern professional approach to the field 

of mental retardation: 

 Provide a professional organization 

facilitating cooperation among those engaged 

in services, training and research in the area of 

mental retardation; 

 Support the highest standard of services, 

training and research in the area of mental 

retardation; 

 Encourage research and dissemination of 

new knowledge in the field of mental 

retardation; 

 Encourage continuous development of 

workers and personnel and increased student 

interest in the field of mental retardation; 

 Promote the welfare of those who are 

mentally retarded, the individuals who work 

with them, and the concern for the field in 

general; 

 Review and influence public policies as they 

concern the mentally retarded and those who 

work on their behalf; 

 Promote and ascertain preventative 

measures which can be initiated in behalf of 

the mentally retarded. 

Since locating its headquarters in Washington 

in 1963, AAMD has been in close contact 

with governmental developments in mental 

retardation and related matters. With its 

comprehensive interest in all aspects of mental 

retardation, AAMD has been in the center of a 

national effort to coordinate the interests and 

activities of all groups, both national and 

international, having a relationship to the field, 

through affiliations, organizational memberships, 

cooperative projects, representations and other 

working relationships. 

In recent years AAMD has been deeply 

involved in a number of specific areas of vital 

concern to everyone in the field. 

1. Terminology and Classification. Actually, this interest has been present throughout the 

history of the organization, but the modern effort 

goes back to 1919 when the Association 

appointed a Committee on Classification and 

Uniform Statistics. In collaboration with the 

National Committee for Mental Hygiene, a 

manual was published in 1921 on a statistical 

system for use in residential and community 

facilities for the mentally retarded. Subsequent 

editions were issued in 1933 and 1941. Rapid 

developments in the conceptualization of 

mental retardation led to the need for extensive 

modifications. In 1957, an AAMD Committee 

on Nomenclature developed an etiological 

classification to serve as a basis for national 

reporting. Based on this system, a Manual on 

Terminology and Classification in Mental 

Retardation was published in 1959, revised in 

1961, and again in 1973.

A crucial problem attacked by the Committee 

concerned the definition of mental retardation 

itself and a determination of the criteria by 

which it is identified and degrees of disability 

designated. Over the course of many years, 

mental retardation, under a variety of names, has 

been defined in terms of organic impairment, 

arrested development, social inadequacy, 

level of IQ, and various other manifestations. 

The AAMD studies since 1957 have put 

forward the following definitions: 

1959 (Heber) 

"Mental retardation refers to subaverage 

general intellectual functioning which 

originates during the developmental period 

and is associated with impairment in one or 

more of the following: (1) maturation, (2) 

learning, and (3) social adjustment." 

Subaverage functioning was defined 

statistically as greater than one standard 

deviation below the population mean. Degrees 

of defect were identified in terms of 

successive standard deviations as Borderline, 

Mild, Moderate, Severe and Profound. 

66 
1961 (Heber) 

"Mental retardation refers to subaverage 

general intellectual functioning which 

originates during the developmental period 

and is associated with impairment in 

adaptive behavior" 

"Adaptive behavior" was stated to subsume 

maturation, learning and social adaptation as 

behavioral components of differing importance 

at different age levels. Designation of degrees 

of impairment was unchanged from 1959. 

1973 (Grossman) 

"Mental retardation refers to significantly 

subaverage general intellectual functioning 

existing concurrently with deficits in adaptive 

behavior, and manifested during the developmental period." 

The term "significantly" is designated as a 

deficit of more than two standard deviations 

below population mean, which results in the 

exclusion of the borderline classifications from 

the denotation of mental retardation.

As a result of continuing controversies 

surrounding the problems of definition, 

identification and classification, the Committee 

is continuing the study of these matters. 

Theoretical and practical implications of the 

controversy are discussed in Chapter 9. 

2. Standards for the delivery of 

services in facilities serving mentally 

retarded persons. In response to growing 

awareness of the appalling state into which 

institutions and other facilities had fallen, 

particularly as the result of overcrowding and 

under-staffing of public institutions, AAMD 

undertook the development of standards for 

institutional evaluation. The first effort resulted 

in publication in 1952 of a report of a special 

committee on standards for institutions. This 

report fell largely "on stony ground" and 

yielded little productive effect. Seven years 

later, a new major effort was launched to 

enunciate minimal, generally attainable 

standards which could be used as a realistic 

basis for evaluation and accreditation by 

AAMD. With a substantial grant from the 

National Institute of Mental Health, this effort 

was undertaken by the Project in Technical 

Planning in Mental Retardation under the 

direction of Herschel W. Nisonger. It resulted 

in a manual published by AAMD in 1965. This 

was followed by a national survey of institutions, using the manual as a guide. 

The principal targets of the standards related 

to conditions of health and sanitation, building 

design features affecting health and safety, 

numbers and qualification of staff, and 

educational and rehabilitation services. 

Over a period of 3 years (1966-69), 134 

State institutions for the mentally retarded (threefourths of such institutions, housing 90 percent 

of residents of public institutions) were 

evaluated. Since there was no enforcement 

authority to back up the standards and no great 

incentives to comply, States were slow to 

provide necessary funds and institutional 

administrations were limited in what they 

could do to bring their institutions up to 

standard. As a first attempt, however, the 

AAMD Standards served to illuminate how 

shockingly most institutions fell below the 

minimum standards of decency for human 

habitation. 

In 1969, the Accreditation Council for 

Facilities for the Mentally Retarded 

(AC/FMR) was formed by the Joint Commission for Accreditation of Hospitals, 

through efforts of AAMD in collaboration 

with NARC, CEC, UCPA, the American 

Psychiatric Association, and the American 

Medical Association. The Council was 

composed initially of representatives of 

the five initiative national organizations, 

professional and volunteer, including 

Elwyn Institute 

67 
AAMD.* Standards for Residential Facilities for the Mentally Retarded were 

adopted in 1971, Standards for Community 

Agencies in 1973. These have been reflected 

in regulations and court orders at Federal and 

State levels controlling the use of public funds 

in such service settings, and the incentives to 

achieve accreditation have been greatly 

strengthened. 

3. Litigation in Defense of the Constitutional Rights of the Retarded. AAMD has 

played a prominent role in the wave of 

litigation that has developed during the past 

five years to obtain the judgment of the courts 

in redress of abuses of the rights of mentally 

retarded citizens. The Association has 

appeared as plaintiff, amicus curiae, expert 

witness or adviser to the court in major 

landmark cases involving institutional treatment, 

education, commitment, freedom from peonage, 

sterilization, and related issues. A list of expert 

witnesses is maintained for use in litigation 

available to either plaintiff or defendant. A list 

of individuals to make program evaluations 

(discovery) relating to litigation is available 

on request. These services have been 

extensively used, and numerous members of 

AAMD have testified on their own behalf in 

many cases. 

AAMD is represented on the Advisory 

Committee to the Center for Law and the 

Handicapped, and on the Board of Trustees of 

the Mental Health Law Project, and has a 

working relationship with the Center for Law 

and Social Policy. 

*Subsequently (1973) the American Academy 

of Pediatrics, American Nurses Association, 

American Psychological Association and 

American Association of Private Residential 

Facilities for the Mentally Retarded were added 

to the Council, while CEC withdrew. 

4. Social Issues and Public Policy. With 

the assistance of its Committee on Legislation 

and Social Issues, AAMD has developed a 

series of position and policy statements 

representing the Association's stand on 

pertinent concerns. Policies approved by the 

AAMD Council through May 1975 include: 

 Protecting the lives of citizens who are 

mentally retarded. 

 The basic and extended rights of 

mentally retarded persons. 

 Guidelines for work by residents in public 

and private institutions for the mentally 

retarded. 

 Sterilization of persons who are mentally retarded. 

 The right to habilitation for persons who 

are mentally retarded. 

 The use of physical, psychological and 

psycho-pharmacological procedures to affect 

behaviors of mentally retarded persons. 

 Guardianship for mentally retarded persons. 

 Human rights review and protection 

boards.

A statement on research involving mentally 

retarded people and a set of guidelines on 

"informed consent" are pending. 

Action on the basis of these position and 

policy statements is being taken in litigation, 

legislative development, collaboration and 

cooperation with other bodies with similar 

concerns and through the continual reexamination 

of AAMD's own goals, mission and name in 

order to serve retarded people better. 

5. AAMD has played a leading role internationally in the organization and development of the International Association for 

the Scientific Study of Mental Deficiency 

(IASSMD). The principal activity of this 

organization has been the holding of a 

triennial international congress bringing 

together scientific and professional leaders in 

the field from all parts of the world for the 

exchange of knowledge and discussion of issues. 

Following a preliminary congress held in 

Copenhagen in 1964, the International 

Association was formed and subsequently 

conducted congresses in Montpelier (1967), 

Warsaw (1970), The Hague (1973). The 1976 

congress will be held in Washington, D.C., 

with AAMD as host. 

68 
6. In looking toward the future, 

AAMD discerns a number of trends which will be 

the focal points of issues and developments in 

which the Association will play an active role. 

Among those trends which it finds cause for 

concern are: 

 The increasing cost of programs. 

 The denial of services to many who need 

them. 

 The transfer of many chronic institutional 

problems, abuses and misuses to community 

programs as "deinstitutionalization" takes place 

without adequate foundations being laid in both 

the serving programs and in the individuals served.

Hopeful but possibly controversial trends are seen 

in: 

 The addition of large numbers of professional 

people to programs for the mentally retarded. 

 Better integration of retarded people into general 

service delivery systems. 

 Drastic changes in both institutional and 

community programs, with integration of the 

retarded into programs for people with 

differing "labels." 

 Conflicts among values such as: 

confidentiality of records vs program evaluation 

on documented individual progress; diagnostic 

data for individual program planning vs invidious 

effects of labeling and classification; roster 

information for estimates of need and case 

following vs privacy of the person; 

mainstreaming and use of generic services for 

"normalization" vs recognition and attention to 

special needs; and protective intervention vs 

freedom of choice and decision. 

 Federalization of "income maintenance" for 

the disabled and handicapped, of whom the 

retarded constitute a substantial portion. 

 Less categorical funding. 

 More accountability in service systems. 

 Changes in parental and community attitudes to 

allow a more normal life for retarded people. 

 Extensive monitoring of program systems by 

lay advocates. 

 Earlier detection and elimination in many cases 

of the symptoms of mental retardation. 

 Legal resolution of the question of 

euthanasia. 

 Clarification of the appropriate constituents 

of professional practice, careful monitoring of 

professional practice with a blurring and final 

elimination of the "curtain of sanctity" which 

now protects the incompetent and unethical 

practitioner.

David Rosen, in his Presidential Address to 

the AAMD Convention of 1974, concluded with 

these remarks: 

. . . We have come a long way in 98 years 

from that period which saw our founders 

establish the Association of Medical Officers 

of Institutions for Idiotic and Feebleminded 

Persons. 

And while we are not yet approaching perfection, 

institutional waiting lists have been dramatically 

reduced or eliminated, the community placement 

movement is progressing, and public education is 

becoming responsive. It is more difficult to be 

pronounced 'mentally retarded' and more a certainty that 'rights' will be guaranteed. 

. . . We are . . . truly part of an era in 

transition moving . . . towards goals that once 

were only dreams. 

The Council for Exceptional Children* Origin 

and Development 

The Council for Exceptional Children (CEC) 

is an association of professional personnel and other 

persons whose principal purpose is to advance the 

education of all exceptional children and 

youth—both gifted and handicapped—in the 

United States and Canada. Through a constellation of interests under which the needs of all 

exceptional children can be considered, CEC has, 

since its inception, maintained a common concern 

for all types of children with special needs. 

Therein lies its unique contribution. 

The International Council for Exceptional 

Children was established August 10, 1922, 

approximately 25 years after the National 

Education Association's first Department of 

Special Education was organized and four years 

after its demise. The word "international" was 

later dropped. 

The Council's founding group consisted of a 

few faculty members and some advanced students 

enrolled in Teachers College, Columbia 

University. Major credit for its organization and 

early development, however, belongs to the first 

president, Miss Elizabeth Farrell. Teaching in 

Public School Number One, New York City, 

Miss Farrell was convinced that certain of 

her boys were chronic truants because 

*PCMR is indebted to M. Angele Thomas, editor 

of Exceptional Children and Floyd E. McDowell, 

President of the Division on Mental Retardation, 

CEC, for much of the material of this section. 

69 
they found the regular curriculum too difficult to 

handle. While New York City at that time 

provided special classes for mildly retarded 

children there was no provision in the public 

schools for children below that level who were 

considered hopeless and uneducable. She 

proceeded to organize classes for mentally 

retarded youngsters who had an intelligence 

quotient less than 50, and to establish trade classes 

for older retarded persons (Geer and Jordan). 

This was not, of course, the first development 

of this kind. Public classes for "imbeciles," for 

moderately retarded, "trainable" children had 

become common 

Elwyn Institute 

in some European countries, notably Germany 

and the Netherlands, and in the United States such 

classes had been established in certain schools in 

New Jersey, Delaware, Missouri, Ohio, 

California, and Minnesota. 

It was significant and precedent-setting that the 

first president of CEC was a teacher with vision. 

Many of CEC's officers and leaders in key 

positions down through the years, as well as the 

great bulk of the members, have been practicing 

teachers of exceptional children. In turn, many of 

the innovations in services for mentally retarded 

persons as well as in the total field of special 

education have occurred because of the 

pioneering efforts of people associated with the 

Council. From the beginning, continuing to the 

present day, the standards of professional training, 

the professional role of the special education 

teacher, the status of the exceptional child and the 

development of curricular methods in special 

education have reflected strong and positive 

influence emanating from CEC as a body and 

from individuals within the membership. 

The early growth of CEC was slow, with 

local groups, called chapters, organizing in the 

cities where special education was active in the 

public schools. The strength of the organization 

lay in its membership of classroom teachers, 

hence growth was a reflection of the development of the programs of the public schools, and 

especially of the requirements of special 

qualifications of teachers. The cross-stimulation 

between practicing teachers and teacher educators 

in the universities and teachers colleges was also 

a vital factor in stimulating the professional consciousness of the special education teacher. 

From the beginning, CEC emphasized the 

common cause of all children whose difference 

from the norm of educational development was 

such as to make the standard school curricula 

inappropriate or difficult of access. Thus the 

interests of CEC embraced the intellectually 

gifted, also. 

By 1938 there were 58 chapters and a 

membership of 3,500. Their frequent meetings 

from the grass roots helped to develop concepts 

and to generate means for serving the total 

needs of the special child. CEC contributed to 

this movement through expanded organizational 

services. A national convention has been held 

annually starting in 1923. Constitutions were 

written and revised. Governing bodies were 

provided. In 1934 an official journal, 

70 
Exceptional Children, was started. In 1936 dues 

were requested of each member to cover 

developing costs. In 1946 the Delegate 

Assembly was formed to provide representation 

for chapters. 

In 1950, with 6,000 members in 141 chapters and 

two State federations, a headquarters staff office 

was established at the NEA Center in 

Washington, D.C. During the '50's and '60's 

several divisions representing particular interests 

were organized, such as The Council of 

Administrators of Special Education, The Teacher 

Education Division, and The Association for the 

Gifted. In 1965 the Student CEC was authorized 

by an amendment to the CEC constitution. 

By 1963 CEC was heavily involved in 

promoting Federal legislation affecting 

handicapped and gifted children. It participated in 

the establishment of the Elementary and 

Secondary Education Act of 1965. In 1966 it 

led the successful fight to establish the Bureau for 

the Education of the Handicapped. It was 

instrumental in the passage of more than 15 other 

laws relating to the education of handicapped and 

gifted children by 1969. In that year, the StateFederal Information Clearinghouse and the 

Governmental Relations Unit were formed. 

The latter worked ceaselessly to bring into 

being the Right to Education Act (P.L. 94-142), 

signed into law in 1975. The Information Center 

was organized as a constituent part of the Educational Resources Information Center (ERIC) 

system in 1966. 

In 1969 membership totaled 36,000, including 

624 chapters and 40 State and provincial 

federations. CEC offices moved from NEA 

headquarters to Arlington, Virginia, with more 

than 80 fulltime staff members. In 1974 the 

national headquarters was moved to Reston, 

Virginia. 

In 1975 the membership totaled 67,000, of 

whom one-third, or 22,000, were student 

members, with 906 chapters, 49 State and 

provincial federations and four branches. 

There have developed 11 internal special interest 

divisions: 

The Association for the Gifted 

The Council of Administrators of Special 

Education 

The Council for Children with Behavioral 

Disorders 

The Council for Educational Diagnostic 

Services 

The Division for Children with Learning 

Disabilities 

The Division of Mental Retardation 

The Division of Early Childhood Education 

The Division of the Physically Handicapped, 

Homebound, Hospitalized 

The Division for the Visually Handicapped, 

Partially Seeing, and Blind 

The Teacher Education Division 

The Division for Children with Communication 

Disorders

Growth of CEC Since 1938 

Year Membership Chapters Federations Branches

1938 3,500 58

1950 6,000 141 2 2

1955 10,000 275 15 7

1960 13,000 309 28 10

1965 22,500 380 33 8

1970 35,000 676 44 5

1975 67,000 906 49 4

Basic Philosophy 

Past CEC President Ray Graham (1959) stated 

a cardinal principle of the organization: "Our 

name indicates that we are a council FOR 

exceptional children. The preposition 'for' is 

most important. We go much deeper than being a 

council for professional workers and organizations. 

In the final analysis we should be judged by what 

we do for children who have exceptionalities, 

problems, gifts, handicaps, differences, deviations, 

unusual needs, disabilities and possibilities." This 

posture has remained consistent through the years. 

Illustrative of the basic commitments 

and responsibilities of the organization to 

71 
exceptional children are the many resolutions and 

policy statements approved in official action by 

Delegate Assemblies. The following excerpts serve as 

examples (CEC, 1971): 

1.The purpose of special education is to enlarge the 

variety of educational programs for all children so that 

the individualization of programs may be furthered as a 

way of fulfilling the fundamental purposes of education 

for all children, whatever their needs. 

2. The excuse, exclusion or expulsion of children from 

all or part of school activities should not be permitted 

except under extraordinary conditions with due 

acknowledgement of the children's legal rights. 

3. Special education placement should be arranged for 

exceptional children whenever feasible to protect the 

stability of their home, school, and community 

relationships and to enhance their self-concepts. 

4. Regulatory systems that enforce the rigid 

categorization of pupils as a way of allocating them to 

specialized programs are indefensible. Financial aids 

for special education should be tied to specialized 

programs rather than to finding and placing children in 

those categories and programs. 

5. As a means of strengthening special education 

programs, the parents of exceptional children and 

organized community groups should be given a 

responsible voice in educational policy formation and 

planning activities. 

6. Colleges and universities have an obligation to 

develop and coordinate their resources in support of 

programs for exceptional children. 

7. The local school districts should be responsible for 

conducting annual reviews of all children who are legal 

residents of the district to assure that the education of 

each child is proceeding adequately. 

8. State and provincial governments should provide 

financial support to develop and encourage 

comprehensive educational services to assure adequate 

educational opportunities to every child at no direct cost 

to his family. 

9. The Federal Government should provide a strong 

source of professional leadership with emphasis on the 

assessment of needs, planning of programs, financial 

assistance, and dissemination of information that will 

contribute toward upgrading the instruction of 

exceptional children and youth. 

10.The Council believes that the opportunity for all 

children to receive an education is a public 

responsibility, but that program operation of such 

services may be conducted in varied settings and 

through a variety of public and private agencies in the 

widest continuum from specialized schools to fully 

integrated schools. 

11.The Council believes that provisions should be 

made for services which prevent and ameliorate 

conditions negatively affecting the development and 

education of children and youth, from preschool 

programs beginning at birth and continuing through 

adult education. 

12.The council believes that all governmental 

agencies should develop human relations training 

programs involving both regular and special educators 

in the unique needs of minority group children. 

How the Council Carries Out Its Mission 

The CEC Headquarters has the primary 

responsibility for carrying out the Council's daily 

organizational and administrative responsibilities. 

Over 100 staff members work with the CEC President, 

the Executive Committee, and the Board of 

Governors, and the Delegate Assembly is achieving 

the purposes of CEC and assisting in the 

implementation of approved policies, programs, and 

activities. These staff members are under the direct 

supervision of the Executive Director who works 

closely with the CEC President and the governing 

bodies of the Council. 

CEC membership includes multi-interest groups of 

such people as teachers, university students, teacher 

educators, psychologists, administrators, consultants, 

therapists, researchers, social workers, 

paraprofessionals, physicians, and parents from all 

over the U.S. and Canada. The organization of the 

national office must therefore serve the diversity of the 

membership through broad-scale program operations: 

These constitute five units: 

1. Membership/Subscription 

Within CEC Headquarters is the Membership/Subscription Unit which gives direct and special attention to membership/subscription processing and all of the services 

related thereto. 

Nanda Ward Haynes, CEC 

 72 
2. Unit Development 

This unit maintains official records of the 910 local 

chapters and 53 State federations, and serves as resource to 

all officers in any matter related to the organization and 

operation of a particular group. Chapters and federations 

are charged with responsibility for improving the 

education of exceptional children, for the professional 

growth of their own members, and for the advancement of 

the profession itself. They fulfill the Council's purpose and 

program at local, State and provincial levels, as well as 

initiate activities that need national or international 

attention. Through their representatives on the Delegate 

Assembly and Board of Governors, chapters and 

federations formulate Council policy and determine the 

course for united action as a professional organization. 

From CEC's earliest times, State and local units have 

conducted their own professional programs and engage in 

related projects and activities which have had a direct and 

effective impact on programs and legislation for the 

handicapped and gifted all across the country. 

3. Information Services and Publications 

The convergence of several major developments in education in 1966 led the CEC to compete for and win a grant 

from the USOE Bureau of Research to establish and operate an ERIC Clearinghouse on Handicapped and Gifted 

Children. This clearinghouse serves as a comprehensive 

information center identifying and collecting all significant 

literature and materials of value to educators of gifted and 

handicapped children. As such it constitutes a specialized 

member of the Network of ERIC Clearinghouses, serving 

the purposes and objectives of the ERIC program in the 

field of special education. 

The CEC Information Center identifies and acquires English language literature on the education of handicapped 

and gifted children. Much of this literature is unavailable 

from commercial sources. The Center also accesses the 

ERIC file in other fields such as Early Childhood Education, Education of the Disadvantaged, Media and Technology and others. 

The Council's publications are an important means of dispersing information. In addition to the CEC Information 

Center products, CEC publishes Exceptional Children, a 

general journal for the association, which focuses on research programs, and issues and trends in special 

education. The monthly periodical, Insight, provides 

legislative and other information useful to administrators 

in planning programs. 

Education and Training of the Mentally Retarded is a 

quarterly journal which is the official journal of the CEC 

Division on Mental Retardation. Its articles relate 

specifically to the field of mental retardation. 

Another journal is CEC's practical quarterly periodical for 

the classroom teacher, TEACHING Exceptional Children 

is distributed to all the membership and is also available on 

a separate subscription basis. Since its inception in 1968, 

TEC has provided special educators with award winning 

articles and ideas useable in their day to day classroom 

activities. Materials for the journal are submitted by 

practitioners in the field who have found a plan, an idea, or 

a method which works for them and which they wish to 

share with others. 

A subdivision of the Information Unit is the Product Planning and Development Unit which has the task of keeping 

on top and even ahead of trends in special education and 

of developing materials commensurate with those trends. 

To do this, a grapevine technique has been developed 

where a cross section of people in the field of special 

education are kept in contact either by telephone or by 

letter in order to identify significant areas emerging in 

special education, or areas that are of most concern to 

special educators. These meetings of intensified 

presentations and questioning are known as Invisible 

Colleges. The philosophy behind the Invisible College is 

that there exist in all major fields certain individuals who 

generate the invisible seeds of ideas which become 

broadened and more visible as they are passed into the 

general milieu of society, in this case, special education. 

From such conferences various products emerge, for 

example, a book which develops in detail the 

mainstreaming concept, while a related product is a 

cassette album of the presentations. Other examples are 

Not All Little Wagons are Red—the exceptional child's 

early years and its accompanying cassette album, and Let's 

Try Doing Something Else Kind of Thing—behavioral 

principles and the exceptional child, and its accompanying 

sound/filmstrip on Precision Teaching. 

In the future CEC will continue to be an advocate for the 

consumer and a more aggressive marketer of knowledge. 

In a work, it will map the field of current information and 

also indicate where there are large gaps of information. It 

will attempt to raise the consciousness and assist all those 

responsible for developing programs to service their needs. 

4. Conventions 

In addition to the annual international convention, CEC 

has conducted regional conferences to serve specific needs 

of members within a geographical area, and special 

conferences developed on topical interests of members. 

Examples of the latter type are the "Special Conference on 

Cultural Diversity and the Exceptional Child," "Early 

Childhood Education," "Educational Technology," 

"Teaching Exceptional Children in Sparsely Populated 

Areas," "Legislation," and "Delivery of Services to All 

Children." 

The Annual Convention, in addition to conducting the 

business of the Council, involves the following elements: 

a. The professional Program consisting of 600 

section meetings, mini-sessions, and business 

meetings. 

b. Local Exemplary Teacher Classroom and 

Exhibitor Classroom demonstrations. 

c. Personnel Recruitment Service for the U.S. and 

Canada. 

d. Convention Exhibit Show 

e. Film and Multi Media Theater. 

f. Research Theater on current research programs 

in special education. 

CEC has collaborated with other professional 

organizations in conducting conferences and conventions, 

e.g., the Council for Developmental Disabilities, the 

American Vocational Association and the American 

Alliance of Health, Physical Education and Recreation. 

An additional dimension of the Convention's program has 

been a substantial interest in the handicapped and gifted 

living outside the mainland of the U.S. In 1971 CEC held 

a Pan Pacific Conference involving all the countries of the 

Pacific Basin. In 1978 the Council is planning a World 

Congress.

73 
5. Governmental Relations 

Activities of the Governmental Relations Unit can be 

subsumed under four general programs: 

a. Collection, analysis and dissemination of 

information on current bills and established 

laws for special educators, legislators and 

others. 

b. Preparation of materials and conduct of 

workshops on methods of influencing 

governmental decision-makers and 

improving and changing laws on education 

of exceptional children. 

c. Development, support and promotion of 

specific legislation for the handicapped and 

gifted. 

d. Identification and compilation of relevant 

civil liberties data and exploration of legal 

issues involving exceptional children with 

the aim of guaranteeing to every 

exceptional child through legal means the 

education he needs. 

In 1974 CEC took a major step forward in building a 

nationwide base for political activity through the 

creation of a Political Action Network (PAN). This 

consists of Political Action Network Coordinators 

in each State appointed by the CEC Federation to 

work with the Governmental Relations Unit of CEC 

in a variety of activities. Extensive effort was 

expended by the PAN coordinators to obtain 

passage of the Mathias Amendment (P.L. 93-380) 

requiring the States to develop and implement plans 

assuring public educational opportunity to all 

handicapped children, and to attain the 

appropriations necessary to make the intent of that 

amendment a reality. 

Emergence of the use of courts as an avenue for 

policy change has found CEC much involved. In the 

PARC vs. Commonwealth of Pennsylvania case, the 

Council participated prominently as an amicus 

curiae. In other "right to education" and "right to 

treatment" cases, CEC has played the role of expert 

witness, and stands ready and has the mechanism to 

do so whenever it is in the best interests of the 

handicapped. In light of CEC's responsibility to 

provide information associated with litigation efforts, 

the Governmental Relations Unit has published such 

documents as A Continuing Summary of Pending 

and Completed Litigation Regarding the 

Education of Handicapped Children; Legal 

Change for the Handicapped through Litigation; 

and A Due Process Primer. 

The Unit has worked long and hard to establish 

effective relations with the U.S. Congress and its 

administering agencies. Over the years 

Governmental Relations of CEC has been involved 

in the initiation and passage of virtually every 

major piece of legislation affecting exceptional children. This includes concern focused on handicapped 

and gifted children from birth through their 

acquisition of career education skills. 

In relation to Congress and the many governmental 

agencies, CEC is recognized as the only organization 

that represents ALL exceptional children—gifted 

and handicapped—and has operated under the 

premise that all children have a right to education 

designed to meet their needs. The Governmental 

Relations Unit maintains an extensive data base and 

active State and Federal Information Clearinghouse on 

Exceptional Children. In addition to collecting, storing 

and disseminating statutory laws, rules, regulations, 

litigation, and attorney general's opinions, SFICEC 

has produced two model State laws in harmony with 

the most recent directives of the courts and the 

legislation of Congress. 

Special Projects 

In addition to the continuing functions of its 

organizational units, the Council for Exceptional 

Children has also served its constituency by the 

development and implementation of various special 

projects. 

1. Head Start (1973-1975) 

The CEC Head Start Information Project was 

funded by the HEW Office of Child Development 

for the purposes of 1) developing information and 

training materials, 2) conducting training for Head 

Start staff and 3) mobilizing professional and 

voluntary resources. The project was designed to 

implement the requirement that ten percent of children 

enrolled in Head Start must be handicapped children. 

The Project's accomplishments during FY 1974 

included the delivery of two-day training to 1,310 

Head Start staff; development and distribution of a 

comprehensive set of child development 

publications; and the securing of Head Start volunteer 

services. 

The Project has recently completed the final phase 

of a new "Teaching Series" focusing upon 

individualizing instruction. Other training packets 

focused on nutrition and parent involvement. The 

products are designed to become a regular part of the 

Council's publications program. 

2. Professional Standards (1972-1975) 

For many years CEC has involved itself in the issues 

of professional standards for training, certification 

and conduct of special education personnel. In 1972 

the Bureau of Education for the Handicapped funded 

a three-year project designed to develop new 

standards and guidelines for personnel in the field 

of special education, stimulated in response to 

changes and developments in the field, both in teacher 

education, and in accreditation and certification. 

A unique feature of the project, designed to ensure 

broad-based participation in the development of 

guidelines for accreditation and certification was the 

creation of a "project liaison directory" of 

professional educators who share the project 

materials with their colleagues and provide the project 

staff with feedback. Well over 600 members volunteered. 

It is estimated that through this device over 8,000 

CEC members have been directly involved in this 

effort to develop new guidelines for the profession, 

to disseminate the information, and to promote the 

use of a replicable model for standards development 

and implementation.

74 
3. Program for the Analysis of 

Deinstitutionalization Resources (1974-1975) 

Under the research authority of the Vocational 

Rehabilitation Act, CEC has contracted to study a 

number of key elements in the process of 

deinstitutionalization. Deinstitutionalization 

encompasses three interrelated processes: (a) 

prevention of admission by finding and developing alternative community methods of care and 

training; (b) return to the community of all 

residents who have been prepared through 

programs of habilitation and training to function 

adequately in appropriate local settings; and (c) establishment and maintenance of a residential 

environment both architecturally and in total 

quality which protects human and civil rights 

and which contributes to the expeditious return 

of the individual to normal community living, 

whenever possible. The CEC project involves 

the analysis of educational resources required for the 

successful implementation of these processes. 

Student CEC 

Students have been an integral part of the Council 

from its very foundation in 1922. However it was 

not until 1965 that they had their own national 

election of officers and board of governors. In 

1975 the students numbered 22,070, approximately one third of the total CEC 

membership. The student member is a fullfledged member of CEC, not an auxiliary group. 

Division on Mental Retardation 

The Division on Mental Retardation operates as 

one of eleven special interest Divisions within 

CEC. 

The purposes of the Division on Mental 

Retardation are (1) to advance the education and 

welfare of the mentally retarded, (2) to promote 

research in the education of the mentally retarded, 

(3) to ensure competency of educators in this 

field, (4) to develop public understanding of mental 

retardation, and (5) to support the development of 

legislation needed to help accomplish these 

goals. 

The Division was founded in 1963 during the 

annual Council for Exceptional Children's 

convention in Philadelphia. For two years, it 

operated in a division designate status and became 

a full-fledged Division in 1965. On its tenth 

anniversary, in 1975, the Division on Mental 

Retardation reached the 10,000 membership mark, 

which included approximately 3,500 student 

members, and it has continued to grow. 

In November 1975, The Division on Mental 

Retardation appointed an Executive Director, 

responsible for (1) promotion of Active 

interrelationships with other professional 

Nanda Ward Haynes, CEC 

organizations serving the mentally retarded; (2) the 

delineation of problems affecting training of 

personnel in the field; and (3) cooperative 

working relations with all agencies seeking 

solutions to the problems of mental retardation. 

The Division on Mental Retardation's 

primary service to all members is its quarterly 

journal Education and Training of the Mentally 

Retarded, supplemented by a Monograph 

Series on timely issues. These publications are 

distributed to the membership, and to approximately 

1,500 libraries and other agencies which 

subscribe to the Division's journal. The 

Division is involved in the conduct of 

workshops at local, State and national levels, 

designed to provide orientation and short-term 

training, retraining and updating on specific 

educational topics. 

Future growth and development of the 

Division on Mental Retardation is anticipated as 

professional educators address the emerging 

problems of early education, the education of 

severely and profoundly retarded persons, the 

inclusion of retarded individuals in regular 

educational settings (mainstreaming) and the 

continuation of education of the retarded beyond the 

usual school-age years. 

75 
During its years of operation, the Division 

has consistently sought to effect and improve 

working relationships with Committees and other 

Divisions within the parent Council for 

Exceptional Children, and organizations such as 

NARC, PCMR and AAMD. 

Where the Council Will Lead 

CEC's sphere of influence goes far afield. It 

has developed strong and active links with 

many other relevant governmental and 

nongovernmental, public and private 

organizations and agencies to avoid duplication 

or lack of services, and promote coordination. 

The Council is expanding and broadening its 

definition of children, and will be establishing 

the rights of the handicapped and gifted 

whether they are legally "children" or not. 

Affirmative action for employment of the 

handicapped is one example. Negotiating for 

those individuals who have been denied air 

travel is another.

The Joseph P. Kennedy, Jr. Foundation* 

Established in 1946 by Joseph P. and Rose 

Kennedy, in memory of their oldest son, the 

Joseph P. Kennedy, Jr. Foundation has had a 

profound impact on the search for solutions to 

the problems of mental retardation. 

Eunice Kennedy Shriver has stated the broadgauge objective for which the Foundation was 

established: "to seek the prevention of mental 

retardation by identifying its causes and to 

improve the means by which society deals with 

its citizens who are already retarded." (Shriver, 

1975) 

The Foundation, with Mrs. Shriver as its 

Executive Vice President and driving force, 

has directed its resources and its prestige toward 

generating public and professional concern, 

stimulating research and manpower development, 

enlisting outstanding talent, and generating quality 

programs. "The guiding strategy of the 

Foundation," Mrs. Shriver states, "has been to 

use its funds and its influence in those areas in 

which a 'multiplier effect' could be readily 

achieved: to develop models to capitalize on 

innovation; to provide seed money to capitalize 

on flexibility; and to promote public awareness 

to capitalize on the Foundation's ability to 

capture the attention of the American public." 

(loc. cit.). 

The wide range and succession of Kennedy 

Foundation activities may be viewed in terms of 

seven means by which the influence and 

resources of the Foundation have had significant 

effect in stimulating the best talents in the country 

to seek and find solutions to the problems of 

mental retardation. 

Governmental Action 

The Kennedy Foundation was instrumental in 

initiating the appointment by President Kennedy 

of the Panel on Mental Retardation to study the 

field and present recommendations for action. 

The result was the landmark National Action to 

Combat Mental Retardation (see Chapters 3, 5, 

6, passim), which provided the perspectives and 

objectives which have guided developments for 

more than a decade. 

Even before the Panel report had been 

delivered, the Kennedy Foundation had been 

influential in the creation of the National Institute 

of Child Health and Human Development, which 

has served as a major instrumentality for mental 

retardation research. The interest of the 

Foundation added stimulus to the formulation and 

passage of legislation implementing Panel recommendations, especially the Mental 

Retardation Facilities Construction Act of 1963 

(P.L. 88-164). Subsequently, the Foundation 

provided substantial funds to supplement federal 

appropriations for construction of Mental 

Retardation Research Centers and University 

Affiliated Facilities under that Act. 

*PCMR is indebted to Eunice Kennedy 

Shriver, Executive Vice President, and Dr. 

Robert E. Cooke, Chairman, Scientific 

Advisory Board, Joseph P. Kennedy, Jr. 

Foundation, for much of the material in this 

section. 

76 
Further initiatives were instrumental in 

establishment of the President's Committee on 

Mental Retardation, in the planning of the 

Headstart program and in bringing about major 

changes in Civil Service regulations, resulting in 

the employment of many thousands of mentally 

retarded men and women in government service. 

Centers for Training and Service 

The Kennedy Foundation gave generous 

support to promote mental retardation research and 

clinical treatment. This support began with the 

Kennedy Centers in Brighton, Massachusetts, 

and Santa Monica, California. Funds to match 

government grants under P.L. 88-164 for 

University Mental Retardation Research 

Centers were provided by the Foundation at 

Harvard, Johns Hopkins, Yeshiva, Stanford, 

Chicago, Colorado, Wisconsin, and Peabody. 

The Foundation also provided funds for 

institutes, schools and centers for diagnosis, 

treatment and education of retarded children and 

adults in Massachusetts, Illinois, California, 

Wisconsin, and Washington, D.C. 

Stimulation and Recognition of 

Individual Achievement 

Their emphasis has been on attracting 

outstanding professionals to the mental retardation 

field, and making it into a desirable specialty. 

The Kennedy Foundation International 

Awards were established not as an end in 

themselves, but as a means of giving world 

recognition to mental retardation as a human 

problem deserving high quality professional and 

volunteer talent. Created in 1962, the Awards 

program has become widely acknowledged as a 

recognition of outstanding merit. Presentations 

have been made to individuals and organizations 

for significant scientific research on mental retardation in the biological or behavioral 

sciences; for direct service by individuals or 

groups who have developed outstanding 

programs in the identification, care, rehabilitation 

or education of mentally retarded individuals; 

and for leadership, to civic leaders, public officials, 

authors or other persons whose activities on behalf 

of the mentally retarded have awakened public 

conscience or led to increased individual and 

community effort. 

In past years the Awards program has been 

augmented by an International Symposium on 

Mental Retardation, highlighting major 

developments in the field. 

In addition to the formal awards for 

meritorious achievement, the Foundation has also 

supported the training of promising research 

scientists and students. 

Public Information 

The first major phase of a sustained campaign 

to promote public understanding was in 1965, 

when the Kennedy Foundation together with the 

NARC and the Department of Health, 

Education, and Welfare jointly supported a 

massive public information program in mental 

retardation conducted by the National 

Advertising Council. Over a three-year period, 

more than $30 million worth of advertising 

space and time was contributed by local and 

national communications media, two million 

booklets on mental retardation were ordered 

through the advertisements, while business, 

industry and other channels distributed several 

million leaflets. Surveys before and after the 

campaign showed a greatly increased public 

awareness of mental retardation attributable to 

the wave of information carried for the first 

time on a mass basis by the country's media. 

Following the Advertising Council campaign, 

the Foundation has continued its public awareness 

activities in a variety of ways, through 

personalized articles in leading magazines, 

documentary films, and in conjunction with its 

other programs involving public impact. 

77 
Among the Kennedy Foundation's major 

efforts to promote public health measures to 

effect prevention of mental retardation was its 

informational program concerning rubella and 

measles immunizations. They generated great 

interest, working with committees of the 

National Foundation and the National 

Communicable Diseases Centers, in the 

preparation of public information materials, 

including magazine and newspaper articles by 

Senator Edward Kennedy and Mrs. Joseph P. 

Kennedy. This effort was influential in the 

sponsorship of mass immunization clinics by 

State and local health departments, as a 

consequence of which thousands of children are 

saved from irreparable damage every year. 

Community Organizations 

The Kennedy Foundation found in the 

voluntary organizations of America a vast 

resource that can be enlisted in the battle against 

mental retardation and for the wellbeing of the 

mentally retarded. Among these are Civitan, 

Kiwanis, Rotary, Caritas, and other service 

organizations. The Foundation's efforts in this direction began with the Jaycees, young, and 

civic-minded citizens responsive to the challenge 

of mental retardation. An investment of small 

grants by the Kennedy Foundation between 

1963 and 1967 totaling $55,000 brought a 

multiplier effect on a large scale. Since 1963, 

Jaycees have donated over 6 1⁄2 million hours 

in operating or sponsoring in conjunction 

with local ARC groups, thousands of mental 

retardation projects—day camps, physical 

fitness programs, special education classes, 

teacher scholarships, "Honey Sunday" and other 

fund raising ventures, volunteer programs in 

institutions, measles and rubella vaccination 

clinics, the purchase of facilities and special 

playground equipment and massive public 

information campaigns to awaken interest in 

mentally retarded citizens.

Through Mentally Retarded Persons 

Themselves 

The Kennedy Foundation has launched 

several model programs with the objective of 

enabling mentally retarded citizens to become 

more self-sufficient through vocational 

rehabilitation and physical fitness. 

In 1964 the Foundation became aware that 

many retarded adults in sheltered workshops were 

performing menial, repetitive tasks at substandard 

wages. Aided by a three-year grant from the 

Office of Vocational Rehabilitation of HEW, a 

model, non-profit corporation, Flame of Hope, 

was established to demonstrate the capabilities of 

retarded people in producing acceptable, 

competitive products. Participating workshops 

received instructions and raw materials from 

Flame of Hope. Within the demonstration period, 

more than $5 million worth of candles, perfumes 

and other products were produced by mentally 

retarded workers and sold in the open market. 

Following the successful demonstration, ownership 

of the Flame of Hope corporation was turned 

over to the participating workshops in 1971, 

becoming the first company in the world to be 

owned by mentally retarded persons, producing 

and marketing their own products. 

Concerned with the physical fitness of 

mentally retarded citizens, the Kennedy 

Foundation made grants to physical education 

teachers to learn more about the physical 

development and needs of retarded children 

and young adults. In conjunction with the 

American Alliance for Health, Physical 

Education and Recreation (AAHPER), a 

national testing and award program was initiated. 

Surveys showed an extreme neglect of the 

needs of the mentally retarded for physical 

development, motor coordination and 

recreational expression. The Foundation's 

response to this was the organization of the 

Special Olympics program to serve as a 

model for greatly expanded sports and 

78 
The agony and the ecstasy at the Kentucky Special Olympics. 

recreational programs in schools, communities and 

institutions throughout the world. 

The first International Special Olympic Games 

were held at Soldier Field, Chicago, in the summer 

of 1968, with more than a thousand children from 

all parts of the United States, Canada and France 

participating in track and field and swimming 

events. From that year the program has grown 

and developed to a year-around sports and 

physical development activity involving hundreds 

of thousands of mentally retarded children and 

youth in every State and a growing number of 

foreign countries. It has enlisted the largest volunteer 

participation in a community activity ever achieved, 

with over 150,000 citizens participating in 

carrying out the Special Olympics Program in 

1975. 

Communities are now opening their recreational 

facilities to mentally retarded participants, while 

schools and institutions have developed greatly 

expanded physical education and sports programs 

aimed not only at the popular special competitive 

events leading up to the International Special 

Olympic Games, but also and more importantly 

to the improved physical fitness and capability of 

the retarded citizens. The seeding funds of the 

Kennedy Foundation have fallen on fertile 

ground. 

In the Special Olympics program the Kennedy 

Foundation had the cooperation and support of 

many sports and physical education organizations 

including AAHPER. The latter has, through its 

own center for information and research utilization 

in physical education and recreation for the 

handicapped (IRUC), expanded opportunities for 

mentally retarded individuals. 

The third model program developed by the 

Kennedy Foundation involving the participation 

of retarded people themselves is the "Families 

Play to Grow" project. Developed in 1974, this 

program is based on the recognition that families, 

parents and siblings, frequently do not engage in 

sports and recreational activities with the retarded 

child. With the provision of materials and the 

enlistment of teachers and aids, Play to Grow 

activities involving parents and brothers and sisters 

have been developed in more than a thousand homes, 

community groups, public and private schools and 

institutions, day care centers and camps. 

Medical Ethics 

A more recent concern of the Kennedy 

Foundation is medical ethics. With the 

recognition of the retarded individual as first of 

all a human being, with all that humanity implies 

in terms of the inviolability of the person and his 

individual rights, serious questions arise with 

respect to the ethical nature of the ways in 

which he may be treated. Many issues today 

revolve around value judgments on which there is 

as yet no consensual agreement. Some of these 

are related to decisions affecting the survival of 

severely mentally retarded individuals, or the 

treatment accorded the retarded person who does 

survive. Some issues relate to the conflict of values 

in the interactions between the individual 

retarded person and other persons, or the 

community. 

79 
The entry of the Kennedy Foundation into this 

field was marked by a symposium on Medical 

Ethics, "Choices on Our Conscience," in 

Washington, D.C. in 1971. This centered on the 

issues raised by the withholding of life-preserving 

medical treatments from an infant with Down's 

syndrome, requiring intestinal surgery. The 

symposium dramatized the conflicts of value 

and interest involved and especially the question 

of who rightfully makes decisions in such cases. 

From that beginning, the Foundation has 

proceeded to develop channels in which the deep 

issues of life and death affecting not only 

retarded but all people, can be deeply studied 

and discussed. To this end the Foundation has 

awarded fellowships in medical ethics to qualified 

professional people in medicine, law, theology, 

the neurosciences and nursing for study and 

teaching of medical ethics. Two major centers for 

such studies have been provided with supporting 

funds—the Joseph and Rose Kennedy Institute for 

the Study of Human Reproduction and Bioethics 

at Georgetown University, and the Kennedy 

Interfaculty Program in Medical Ethics at 

Harvard.

In addition, the Foundation has sponsored 

intensive short-term seminars and has produced a 

number of films on such crucial questions as "The 

Right to Survive," "The Right to Let Die," and 

"The Right to Reproduce." These films have 

been widely viewed and are used in the curricula 

of many undergraduate and graduate courses in 

medicine, theology, nursing, sociology, law and 

ethics. 

The Future 

In considering the future, the Kennedy 

Foundation sees these issues: 

1. Research into causes and application of the 

knowledge to prevent retardation continues to 

require support. 

2. The physical fitness programs for the retarded 

have moved along swiftly, but there is no one 

yet prepared to sustain the Special Olympics as 

a focal activity, while the Families Play to 

Grow program is still in a developmental 

stage. 

Va. State Dent. of Health Central Michigan University 

A participant in the Michigan Special Olympics 

proves that his one leg is sufficient for perfect 

balance on the diving board. 

80 
3. The push into the realms of ethics has only 

begun and its dimensions are still not fully 

defined. Major effort will be devoted to this 

channel. 

4. The sociological issues relating to mental 

retardation are far from being solved. The 

Foundation has made a beginning in relation to 

the problem of the families of mentally 

retarded individuals, by support of studies at 

Marywood College and Stone Ridge School. 

On a broader basis, a three-year grant was 

awarded to Johns Hopkins University School 

of Medicine not only for a comprehensive 

Center for Teen-Age Mothers and their Infants, 

but also as a demonstration program which, the 

Foundation hopes, will stimulate the means for 

nationwide access of pregnant adolescents to 

appropriate clinical services. 

References 

AAMD: 

Grossman, H.J., ed. Manual on Terminology and 

Classification in Mental Retardation, 1973 Revision. 

Washington, D.C.: American Association on Mental 

Deficiency, 1973. 

Heber, R. A Manual on Terminology and Classification 

in Mental Retardation. Monograph Supplement to 

American Journal of Mental Deficiency, 1959. 

———. A Manual on Terminology and Classification 

in Mental Retardation, 2nd ed. Monograph Supplement 

to American Journal of Mental Deficiency, 1961. 

CEC: 

The Council for Exceptional Children. Basic 

commitments and responsibilities to exceptional 

children and policy statement on governmental affairs. Washington, D.C.: Author, 1971. 

The Council for Exceptional Children handbook 1962, 

as found in H. Wooden, The first fifty years. 

Mimeographed, in press: CEC. Geer, W., and Jordan, J. 

Education for all children? Mimeographed. 

Graham, R. Blueprints for CEC action. Exceptional 

Children, 1959, 26, 15. 

Reynolds, M., and Jenkins, O.L. A note on the future of 

special education. Mimeographed. The Council for 

Exceptional Children, 1973. 

Kennedy Foundation: 

Shriver, Eunice Kennedy. Joseph P. Kennedy, Jr. 

Foundation: An Investment in People. Manuscript 

prepared for Kugel, R., and Shearer, A. (eds.), Changing 

Patterns in Residential Services for the Mentally 

Retarded, 2nd ed. Washington, D.C.: PCMR.

81 
82 
Chapter 5 

The Growth of Federal Programs 

The combined efforts of the volunteer 

movement, the professionals and private 

foundations would have had little effect in 

bringing mental retardation into public focus 

had they not caused government at all levels to 

become involved. By 1960, some local 

governments had already responded to pressure 

to provide some educational opportunity. State 

governments were seeking more enlightened 

ways of handling mental retardation segregation 

and institutional practices, but far greater political 

power was needed to make any real progress in 

humanizing treatment and finding means to 

prevent such disability. 

Without the entry of the Federal Government, 

progress would have remained meager, slow and 

uneven. 

Prior to the influx of funds from the Kennedy 

legislation, the mentally retarded were benefiting 

by more than 125 million dollars annually from 

Federal sources, of which 75 to 80 percent was 

through social security, public assistance and 

medical assistance programs. 

A first visible Federal step was taken in the 

mid-'50s, as a result of Congressional interest 

and Congressman John E. Fogarty's influence 

on appropriations. 

The Kennedy Administration turned Federal 

attention sharply toward developments leading to 

comprehensive categorical programs of service 

and research. (Braddock, 1973) 

The root elements of the Federal involvement 

in mental retardation were: 

 a growing provision of a minimum basis of 

social security for all citizens. 

 a growth of federally developed programs to 

safeguard health, livelihood and education. 

 a steady development of legal safeguards for 

the protection of constitutional rights, 

especially of disadvantaged people. 

These roots are fundamental to the issues of 

mental retardation and tie that specific problem 

closely to the whole range of issues involving 

health, social security, general and individual 

welfare, education and civil rights. 

Reliance on Federal responsibility has become 

an integral part of the American scene; thus 

making possible the inclusion of mental 

retardation in the array of governmental concerns. 

Certain landmarks of executive action, legislation, 

and judicial decision have brought us to the 

present situation from which recommendations 

can be made. 

The landmark of landmarks is, of course, the 

Constitution of the United States, especially in 

its Bill of Rights, its guarantees of due process, 

equal protection of the laws and freedom from 

cruel and unusual punishment. The 13th Amendment also is of importance in protecting retarded 

persons from peonage and involuntary servitude. 

Although the Federal share of the cost of 

mental retardation research, training and 

service programs has never amounted to more 

than a minor fraction of the total national cost 

(Conley, 1973), the Federal power to regulate 

the services it funds to support research and to 

safeguard individual rights has been vital to the 

advancement of humane solutions to mental 

retardation problems. 

Executive Landmarks 

1909—White House Conference on the Care 

of Dependent Children 

This, the first conference of its kind, led to the 

creation of the Children's Bureau, and set the 

precedent for the White House itself to serve as a 

national forum for discussion, debate and 

83 
recommendations as to the nation's course on 

matters of common concern (See Chapter 2). 

Its greatest significance, however, lay in the 

fact that the Federal Government, represented by 

the President, recognized that the well-being of 

children is of vital concern to the nation. 

White House conferences on children and 

youth convened again in 1919, 1930, 1940, 1950, 

1960, and 1970-71. An influential White House 

Conference on Education was convened in 1955, 

and served to move the country nearer to a 

consensus on the Federal role. 

In 1963 President Kennedy convened a White 

House Conference on Mental Retardation to 

convey the emerging Federal program on 

mental retardation to representatives of State 

government (see below). 

In 1974, there was included in the Rehabilitation Act amendments a provision authorizing the President to call a White House 

Conference on the Handicapped within three 

years, specifying 16 target areas. The pattern of 

Congressional initiative had been set in a 

previous White House Conference, on Aging. 

Thus, the White House Conference has now 

become a means of joint action between the 

legislative and the executive branches, or of 

joint action between the Federal Government 

and the States, in both cases involving broad 

citizen representation. 

1947—The President's Committee on Employment of the (Physically) Handicapped 

The Committee was established by Executive 

Order of President Eisenhower to promote 

employment of disabled veterans of World War 

II and the Korean War. This action was 

precedent-setting for mental retardation. 

Eisenhower's interest in rehabilitation also led 

to the 1954 amendments to the Rehabilitation 

Act. 

In 1949 PCEH was made statutory by an act 

of Congress (P.L. 81-162), without changing its 

mission or its White House connections. The 

Committee was established to inform and 

advise the President on a matter of continuing 

humanitarian concern. It differs in this respect 

from the more common type of ad hoc "blue 

ribbon" commission with a presidential directive 

to study and report on a specific matter of 

national importance. It differs also from the 

array of Advisory Councils, Study Panels, 

Review Committees consisting of experts to assist 

a Federal agency to carry out congressionally 

authorized and funded programs. 

A President's Committee, on the PCEH 

model, becomes the national funnel through 

which the country can present its views on 

relevant matters to the President, and a return 

channel by which the executive can make known 

his recommendations to the country. It is a means 

of direct contact between the President and the 

people. 

In 1962, President Kennedy directed that 

the word "Physically" be dropped from the 

Committee's title. Congress confirmed the action 

and it became the President's Committee on 

Employment of the Handicapped, with a broad 

mandate to study, report and recommend on all 

aspects of employment for all disabled people. 

The PCEH mission, therefore, involved 

mentally retarded people directly, regarding 

employment. 

1961—The President's Panel on Mental Retardation 

This panel of experts was the first ever 

called together by a President on the subject of 

mental retardation (See Chapter 6). 

The immediate outcomes of the Panel's 

report National Action to Combat Mental 

Retardation will be described in terms of the 

landmark legislation later in this chapter. 

Following the Panel report, the President 

established in the White House the office of 

Special Assistant to the President on Mental 

Retardation. Dr. Stafford Warren, who was 

appointed to the office, convened the White 

House Conference on Mental Retardation and 

provided the operational focus for the 

implementation of the Panel's recommendations. 

84 
1966—The President's Committee on Mental 

Retardation

Following President Kennedy's death, his 

legislative program on mental retardation was 

initially carried forward by President Johnson. 

Dr. Warren left the White House staff in 1965. 

By that time President Johnson was forging his 

own program for the "Great Society," which 

included much education legislation, and in the 

health field concentrated on heart disease, cancer, 

and stroke. 

There was a hiatus in Federal activity in 

categorical mental retardation action, a growing 

pressure on the budget, regression of funding 

for programs authorized by the Congress. 

Great effort was expended in "comprehensive 

State planning." in response to one 

component of the Kennedy legislation, but 

new funding was required to support community 

based programs in order to make the planning 

fruitful. There was a growing feeling that 

promises to the retarded were in danger of going 

by the board. In Congress there were new 

faces, new issues, and new national priorities 

were setting new directions. The war in 

Vietnam was still expanding; domestic unrest, 

among youth, among minorities, among poor 

was mounting. 

On March 1, 1966, President Johnson sent a 

message on health to the Congress in which he 

announced that he would create by Executive 

Order a President's Committee on Mental 

Retardation as a continuing body, under the 

chairmanship of the Secretary of HEW (See 

Chapter 7). 

PCMR's origin has been attributed to the 

efforts of Eunice Kennedy Shriver and Sargent 

Shriver, Vice President Hubert Humphrey and 

of Wilbur Cohen, then undersecretary of HEW 

(Boggs, 1972, p. 165-166) and it had long been 

urged by NARC. It was, indeed, a landmark 

executive action, although it had precedent in 

the President's Committee on Employment of the 

Handicapped and other presidential advisory 

bodies. It created a vital link between the White 

House and the administrative departments, on the 

one hand, and between the Federal Government and 

the governmental, professional and volunteer 

activity in mental retardation, on the other. 

Legislative Landmarks 

Major legislative landmarks leading to 

Federal recognition of mental retardation, 

extend from the Act establishing a Department 

of Education in 1866 to the Developmental Disabilities Acts of 1970 and 1975. 

1867—The Office of Education 

On December 8, 1866 a bill was introduced 

into the 39th Congress entitled "An act to 

establish a Department of Education." It was 

signed into law by President Andrew Johnson 

on March 28, 1867. 

The tradition of local support and local 

control of public education is deeply rooted 

in the American scene. Consequently, Federal 

activity in this area was always marked with 

controversy. The Act which established the 

Office of Education was carefully drawn to 

preserve the educational territoriality of the 

local district under State regulation. The 

Federal office, located in the Interior 

Department was strictly limited to an 

informational and advisory role. Early in the 

1920's, a Section on Exceptional Children and 

Youth was developed which documented 

activities in the education of handicapped 

children. The Section played a strong role in 

the 1930 White House Conference, under the 

leadership of Elise Martens, who later wrote 

the influential and much used Guide to 

Curricular Adjustment for the Mentally 

Disabled. 

85 
The first major break toward Federal aid to 

general education came as the result of the 

pressures of "extraterritorial" and therefore nontaxable, Federal activities adjacent to local school 

districts. As an alternative to construction and 

operation of Federal schools for children living 

on tax-exempt Federal lands, P.L. 815 and 874 of 

1950 allowed the Federal Government to 

provide construction and operating funds to 

local school districts to educate the children of 

Federal employees in these "impacted" areas. 

These laws became one of the vehicles by 

which other Federal sources of funding to 

public education were tapped. (I.M. Labovitz, 

1963) 

A "special education" clause was later added 

to the "impacted aid" statute, which provided 

additional reimbursement to a local district 

serving handicapped pupils resident on Federal 

property. 

In 1953, the Office of Education made a study 

of personnel needs in special education with a 

grant from the Association for Crippled Children 

and under the leadership of Arthur Hill and 

Romaine Mackie. Hill also wrote a widely 

distributed pamphlet, "The Trainable Child in 

the Community School." The two educational 

leaders worked closely with NARC and CEC 

in fostering the growth of special education for 

retarded children in the States. 

In 1954, Congress combined the Public Health 

Service Office of Education and the Federal 

Social Security Agency under the umbrella

Department of Health, Education, and Welfare 

with cabinet rank. 

The Cooperative Research in Education Act 

(P.L. 83-531 enacted in 1954) brought 

substantial funds to educational research. 

It had special impact on mental retardation for a 

few brief years, beginning in 1957, peaking at 1.1 

million in 1958, declining swiftly thereafter and 

phasing out with a final 18,000 in 1971. 

It was not until 1958 that the National 

Defense Education Act established precedent for 

Federal Aid to Education in manpower training. 

Title VII of that act also authorized 

Educational Media Research through which 

mental retardation projects were funded in modest 

amounts from 1959 to 1967. 

Also in 1958 a bill was passed (P.L. 85-

926) for training educators of mentally retarded 

children. This was the first categorical 

legislation specifically devoted to mental 

retardation. Later incorporated in successor 

legislation extending to other handicaps, the bill 

has provided substantial training for mental 

retardation personnel, reaching an obligated 

level of $10.9 million (out of a total of $37.7 

million) in 1973. 

Authorization of funds for research and 

demonstration projects in education of the 

handicapped were also included in Title III 

of P.L. 88-164, to be reviewed later. 

At the time President Kennedy signed P.L. 

88-164 in 1963, he announced the establishment 

of a new Division for Handicapped Children 

and Youth in the U.S. Office of Education. Dr. 

Samuel A. Kirk was chosen to organize the 

Division. For the first time, the programs for the 

handicapped were elevated to a respectable 

position in the OE administrative hierarchy. 

Eighteen months later, the Division was 

disbanded in the reorganization following the 

enactment of ESEA of 1965, but immense 

strides had been made under Dr. Kirk's leadership. 

Yearly battles were fought thereafter to 

maintain the place in the sun enjoyed during the 

Division's existence. 

In 1965 the Elementary and Secondary 

Education Act (ESEA—P.L. 89-10) provided 

in Title I for assistance to educationally 

disadvantaged children in local school district. 

Congress extended this term to include the 

86
handicapped in all socio-economic groups. 

Federal aid to education was now an established 

national policy, represented by a massive flow of 

dollars into the States. 

Another amendment (P.L. 89-313) authorized 

assistance to handicapped children in State 

operated and "State supported" private day and 

residential schools with 53 to 59 percent of 

obligated funds going initially to mentally 

retarded pupils, mostly in State institutions. 

Title III of ESEA provided for research and 

demonstration grants for innovative projects in 

education, of which 5 to 14 percent went to 

projects for the handicapped between 1966 and 

1973. 

Further amendments of ESEA in 1966 and 

1967 added to these gains and created, after a hectic 

controversy between Administration and 

Congressional points of view, a Bureau for 

Education of the Handicapped within the 

Office of Education. Dr. James Gallagher 

became its first head as Deputy Commissioner 

of Education. 

The next major stage in Office of Education 

programs for the handicapped was signaled by the 

passage of the Education of the Handicapped 

Act (Title VI of ESEA Amendments, P.L. 91-

230) in 1969. This comprehensive bill has had 

great impact on the development of education 

for the mentally retarded, defined in the Regulations to include the educable (mild) and 

trainable (moderately) handicapped. Part B 

provided grants-in-aid to State agencies "to 

assist in the initiation, expansion, and 

improvement of programs for the education of 

the handicapped" from preschool through 

secondary levels. Part C provided for regional 

resource centers (Sect. 621), picked up the 

provisions of the Early Childhood Education 

projects (Sect. 623) and provided for special 

Education Instructional Materials Centers (Sect. 

624); Part F provided Instructional Media for 

the Handicapped. Part D continued the support 

of special education manpower development. 

The Education Amendments of 1974 (P.L. 

93-380) contained important provisions for the 

handicapped. The most significant are in 

response to the "right to education" mandate. 

(See Judicial Landmarks, below, especially the 

Maryland decision). States are required to 

establish a goal of providing full educational 

opportunity for all, with a detailed plan and timetable for achievement. Funding authority was 

sharply increased to assist the States in meeting 

these obligations. 

This legislation was further elaborated and 

amended in P.L. 94-142 (1975) with emphasis 

on individualized education programs, adaptation 

to "native language," coverage of all cases in 

need, regardless of severity, and provision for all 

handicapped children currently unserved or 

inappropriately served. Requirements were 

spelled out for planning, uniform records and 

reporting, evaluation and procedural safeguards. 

1912—The Children's Bureau 

A bill to create a Federal bureau responsive to 

the needs of children was introduced in 1909 

with the strong support of the first White House 

Conference on Children in that year. It was 

enacted in 1912 and the Children's Bureau was 

established as a constituent agency of the 

Department of Labor with a mandate "to 

investigate and report upon all matters 

pertaining to the welfare of children." 

The Children's Bureau was the first agency 

capable of looking seriously at the plight of 

children with mental or physical impairments. It 

immediately undertook a series of mental 

retardation studies; in the District of Columbia 

(1912), and in two counties in Delaware (1917, 

1919). 

87 
In 1919 the Children's Bureau called the second 

White House Conference on Children, at which 

the problems of mentally retarded children 

were reviewed (See Chapter 2). With Bureau 

assistance, a "mental clinic" was established in 

Boston in 1920. 

In 1935 the Social Security Act gave the 

Children's Bureau additional funds and 

responsibility for maternal and child health, 

crippled children and child welfare. It was 

authorized to make systematic "formula" grantsin-aid to States to develop services, especially 

in rural areas. 

In 1953 the Children's Bureau was incorporated 

into the newly created Department of Health, 

Education, and Welfare and subsequently 

became part of its Welfare Administration. Since 

the States were doing very little with their grant 

funds for the mentally retarded, the Bureau, 

under the leadership of Dr. Martha Eliot, began 

what was to become a major program under its 

existing authority to promote and support 

specialized diagnostic and evaluation clinics for 

the mentally retarded. Assisted by NARC's 

drive for comprehensive programming and the 

incentive of Rep. John Fogarty, who inserted an 

additional million dollars into the FY 1957 

HEW budget to support the Children's Bureau 

clinics, by 1970 the program was supporting 120 

such clinics over the country and, by 1975, 160 in 

all but two States. After construction of 

University Affiliated Facilities was 

authorized under the Kennedy program in 

1963, the Children's Bureau obtained additional 

funding (Soc. Sec. Amends. 1965 Title V, 

now Sect. 511) to support "training of 

personnel for care of crippled children, 

especially mentally retarded children." 

Dr. Arthur Lesser protected the integrity of 

the Children's Bureau program through critical 

years, but in 1968 the Bureau was 

administratively dismantled, the maternal and 

child health.

 and crippled children's programs 

going to the new Health Services and Mental 

Health Administration, child welfare services 

going to the Community Services Administration, 

itself a component in the new Social and 

Rehabilitation Services (SRS); CB itself, 

deprived of its fund-granting powers, was 

eventually (1970) assigned to the Office of 

Child Development (OCD), with only its 

original mission of investigation and report 

remaining. The Director of OCD remains 

officially the chief of the Children's Bureau, a 

statutory position with a few remaining 

responsibilities.

OCD joined the Office of Human Development in 1973 under HEW Assistant 

Secretary Stanley B. Thomas, Jr. who administers 

such advocacy agencies as the President's 

Committee on Mental Retardation, Office for 

Handicapped Individuals, Developmental 

Disabilities Office, and others, including the 

Rehabilitation Services Administration, 

transferred from SRS in 1975. The Office of 

Child Development has maintained strong 

interests in mental retardation under Dr. Edward 

Zigler and Dr. John Meier. 

1920—The Industrial Rehabilitation Act 

This Act, established primarily as a means of 

retraining disabled veterans of World War I, 

was to become, through the amendments of 

1943, a vehicle for the vocational habilitation of 

mentally retarded persons. Actually, little was 

done along this line until the post-war period 

when federally funded demonstrations in training, counseling and placement of retarded clients 

led to DiMichael's milestone report, Vocational 

Rehabilitation of the Mentally Retarded in 

1950. 

In 1953, Mary Switzer, Director of the 

Office of Vocational Rehabilitation, urged 

strengthening of support of services to the 

retarded, leading to further amendments of the 

Act in 1954. From that year the number of 

retarded persons receiving vocational training 

steadily increased. But the retarded did not gain 

proportionate stature within the program until the 

1965 amendments provided Federal aid for 

construction and staffing of workshops. 

Subsequent amendments of 1968 and 

1974 liberalized eligibility restrictions and 

88 
emphasized the more substantially disabled. It 

was necessary during this period for Federal 

and State levels to understand the differences in 

vocational training of retarded persons as 

compared with the retraining of those physically 

impaired. New behavioral techniques needed to 

be developed for retarded trainees. 

1935—The Social Security Act 

One of the principal products of the New 

Deal under President Franklin Roosevelt 

was the Social Security Act of 1935. 

The four kinds of provisions of this Act 

were: grants to the States to support special 

health and welfare programs, such as maternal 

and child health, child welfare and aid to 

crippled children; public assistance in the form 

of cash income support programs targeted at 

the poor; those for income maintenance for 

unemployed workers; and a social insurance 

system based on employer-employee 

contributions to provide retirement income, to 

survivors in case of death, or for disability 

(OASDI). The disability provisions in both 

Social Security and public assistance programs 

were added in 1957. Mentally retarded people 

have benefited heavily and directly from three 

of these four types of provisions, although they 

are nowhere categorically designated. 

The Federal programs designed to assure 

cash public assistance to needy children and 

the elderly, initially operated through aid to the 

State welfare systems. The States have had great 

latitude in program structure and operate with 

widely varying standards. As a consequence 

Office of Child Development 

there were more than 250 such programs (President's Commission on Income Maintenance 

Programs, 1969). Prior to 1974, they involved 

federal funding to States under Old Age 

Assistance (OAA, Title I), Aid to Families 

with Dependent Children (AFDC, Title IV 

A), Aid to the Blind (AB, Title X), Aid to 

the Permanently and Totally Disabled 

(APTD, Title XIV) and Aid to the Aged, 

Blind and Disabled (Title XVI) for States 

preferring to operate under a single entitlement. 

Of these provisions, APTD was added in 1957. 

In a monumental restructuring, beginning in 

January 1974, aid to the aged, blind, and 

disabled was "Federalized." 

Braddock (1973) has tabulated estimated public 

assistance funds to mentally retarded persons in 

these various programs from 1955 

(approximately $65 million) to 1973 

(approximately $442 million) for a total of $3.2 

billion in that period. Although these programs 

are not categorical in relation to mental 

retardation, MR is one of the causes of 

disability. For persons receiving disability 

assistance the diagnosis is known. Sampling studies 

in 1970 showed mental retardation as a primary 

cause of disability in one out of six APTD 

cases. For AFDC recipient populations, 

estimates must be based on general MR 

prevalence rates since AFDC records do not 

identify individuals with respect to mental 

retardation (Braddock, 1973). 

In 1972, P.L. 92-603 amended Title XVI 

of the Social Security Act to provide 

Supplemental Security Income (SSI) for the 

aged, blind and disabled. This provided for 

direct Federal payments to qualifying low income 

individuals, and replaced former OAA, AB, 

and APTD State operated programs. SSI was 

designed primarily with the aged in mind, but 

retarded and otherwise disabled people are 

eligible and have applied in great numbers. 

Initial regulations proved extraordinarily 

complicated for establishing eligibility, and 

the benefits were not always sufficiently 

flexible to meet the needs of disabled people living in the community. However, in 

most States, the Federal criteria provide 

89 
for a greatly expanded eligible population of 

disabled adults as well as children, a new 

category. The revisions eliminated the restrictive 

lien provisions previously imposed by some 

States and excluded parental liability for 

disabled adults. Consequently, the enrollment 

of retarded adults greatly increased. 

With SSI came eligibility for Medicaid 

and social services. At the end of 1973, 

1,275,000 persons were receiving APTD 

support with average monthly payments of 

$109.75. By July 1, 1975, 1,788,323 disabled 

individuals were receiving SSI payments 

averaging $136.43 per month. 

The Social Security Act Amendments of 

1962 increased incentives to the States to 

provide for a wide range of social services 

without cost to recipients or applicants for 

public assistance, to those previously 

receiving assistance payments and to those likely 

to become applicants for or recipients of 

financial assistance. These amendments 

authorized open-ended matching formula grants 

to single State agencies with 75 percent Federal 

reimbursement for most services. 

The State and Local Fiscal Assistance Act 

of 1972 placed a Federal ceiling of $2.5 

billion and State ceilings prorated by population 

on Federal reimbursement to State Social 

Service expenditures. A further restriction 

(later lifted) required that 90% of costs go to 

"actual" recipients. A stipulation in Title III, 

however, allowed an exception for mentally 

retarded persons who were "present, in that such 

persons, former and potential" welfare 

recipients could be counted as "actual." 

(Section 1130, Braddock, pp. 113, 114). 

Braddock estimates that total social service 

obligations to mentally retarded children and 

adults progressed from nearly $2 million in 1963 

to nearly $114 million in 1973. 

SSA amendments in 1974 established a new 

Title XX which consolidated under a single 

authority the previous authorizations under 

Titles IV A and VI which were repealed. 

The enactment required States to accept these 

goals for the recipients: self-sufficiency, self-care, 

reduction of inappropriate institutional care and 

services to individuals who are appropriately 

placed in institutions. Fee schedules for 

services scaled to income are required if the 

State uses Federal funds to serve persons whose 

income exceeds 80 percent of the State median 

income. A wide range of possible services is 

specified within these limits, with the States 

setting priorities by target group and by type of 

service. The extent to which mentally retarded 

clients will benefit depends largely on the 

effectiveness of advocacy in the State planning 

process. 

The Federal concern is limited to receiving 

an acceptable State plan as a condition for 

Federal financial participation; the State plan no 

longer is required to detail the actual services to 

be offered. The State services are determined by 

an intra-State planning process culminating with 

a plan approved by the Governor. 

The new program went into effect on 

October 1, 1975. A preliminary review indicates that services specifically targeted on 

eligible retarded persons were included in the 

1976 State plans of 18 States; in an additional 13 

States, services to the "developmentally 

disabled" were specified within the Title XX 

plan and would presumably include the 

retarded. This leaves the extent of participation 

by the retarded undocumented in 19 States. 

However, all States are required to provide 

some services to SSI recipients, among whom 

are many thousands of mentally retarded 

persons. 

In 1965 the Social Security Act was 

amended to include Title XIX, providing 

explicit Federal sharing in the cost of 

medical care for public assistance recipients and the medically indigent (Medicaid). 

However, otherwise eligible persons in 

public institutions, other than "medical 

institutions," remained ineligible for both 

90 
federally aided public and medical assistance. 

Effective. January 1, 1972 the Intermediate Care 

Facilities program, previously under the cash 

allowance public assistance system, was 

transferred to a vendor payment system under 

Title XIX. Implementation and structure of this 

program has rested with the States. 

In 1971, P.L. 92-223 identified public mental 

retardation institutions that met certain standards 

as eligible for Intermediate Care Facility status 

and thus brought their residents within the orbit 

of Medicaid. The eligibility depended, 

however, on their receiving "active treatment" 

of a "health or rehabilitative" nature. Statutes 

required conformity with the life safety code; 

and regulations required compliance of the 

institutions with further specific qualitative 

standards of service in order to qualify. These 

special "ICF/MR standards" were derived 

from the standards for residential institutions 

developed by the Accreditation Council for 

Facilities for the Mentally Retarded. 

The social insurance provisions of the Social 

Security Act of course, covered mentally 

retarded persons generically insofar as they 

entered the labor force in covered 

occupations. It is impossible to estimate the 

number of retarded workers who qualified for 

retirement payments without disability 

because of the tendency of a high proportion 

of the mildly retarded to "disappear" into the 

general working population and in effect cease 

to be identifiably retarded. Nor is it possible to 

retrieve the number or amounts paid in the case 

of retarded minor dependents of deceased 

workers. These are "generic" benefits. 

In 1957 an important amendment to the 

Social Security Act authorized benefit 

payments to "adult disabled children." A 

childhood disability beneficiary is an adult with 

a continuing disability ("inability to engage in 

any substantial gainful activity") acquired before 

age 22 (raised from age 18 in SSA Amend. 

1972) who is awarded dependent's benefits as a 

disabled son or daughter of an insured worker 

who has retired, dies or is disabled. This 

provision was strongly promoted by NARC 

in its early governmental activity and has proven greatly beneficial to retarded individuals 

unable to enter the work force. Depending on 

what classification system is used, it is estimated 

that 70 percent (250,000) of the recipients of 

these "adult disabled child" benefits have had a 

primary diagnosis of mental retardation, and 

have received benefits increasing from $22 

million in 1958 to $288 million in 1975. 

The Social Security Act in all its 

ramifying and evolving provisions has thus 

contributed by far the greatest volume of 

Federal dollars to mentally retarded children 

and adults, accounting overall for two-thirds 

to four-fifths of all such funds in any year 

since 1955 (Braddock, pp. 158-159). These 

programs, although nowhere specifying mental 

retardation categorically, have been the most 

stable source of support to mentally retarded 

individuals. 

1944—Public Health Service Act 

Although the Federal Government had been 

significantly involved in health matters ever 

since the original act of 1798 authorizing marine 

hospitals for the care of merchant seamen, the 

congressional action of 1944 effectively 

consolidated and revised virtually all Federal 

activities of a public health nature and gave a 

great boost to modern medicine. Subsequent 

Congresses expanded, revised and developed 

the USPHS and finally, in 1966, reorganized it 

fairly extensively. 

The Public Health Service is the Federal 

agency charged by law to "promote and 

assure the highest level of health attainable for 

every individual and family in America" and 

to develop cooperative relations in health 

projects with other nations. 

91
Paul Conklin 

The functions of the PHS include, in addition 

to direct care of merchant seamen and foreign 

quarantine services, stimulation and assistance to 

States and communities for development of 

health resources including laboratories and 

immunization programs; development of 

education for the health professions; assistance in 

the improvement of delivery of health 

services to all Americans; the conduct and 

support of research in medicine and related 

sciences and the dissemination of scientific information; provision of national leadership for 

prevention and control of communicable 

diseases; provision of grants for construction of 

public and non-profit hospitals and other healthrelated facilities. 

Relevant to both prevention and treatment of 

mental retardation was the development of the 

National Institutes of Health. The institutes 

conduct and support research in the health-related 

sciences. There are now a dozen or more 

components, such as the National Library of 

Medicine and ten categorical research institutes 

and supporting centers. 

The National Mental Health Act of 1946 

established the National Institute of Mental 

Health (NIMH) which, uniquely among the 

Institutes, was authorized to support training and 

service as well as research. NIMH also 

administers Title II of P.L. 88-164 for 

construction and staffing of community mental 

health centers, and supports research in the 

behavioral sciences. An early NIMH 

contribution was a training grant to George 

Peabody College in Nashville, Tennessee, to 

develop a doctoral program in psychology 

emphasizing mental retardation. 

In 1956 Congressman Fogarty succeeded in 

earmarking $250,000 to NIMH for mental 

retardation research, along with $500,000 to the 

National Institute for Neurological Diseases and 

Blindness (NINDB). The NIMH portion 

supported the behavioral component of the 

survey of mental retardation research sponsored 

by NARC and conducted by Masland, 

Sarason and Gladwin. 

In the major reorganization of 1966 and 1967, 

NIMH was separated from the other 

institutes and became a part of the Health 

Services and Mental Health Administration, 

and was later incorporated into the Alcohol, 

Drug Abuse and Mental Health 

Administration, with mental retardation activity 

reduced to a small volume of research grants. 

In 1950 the National Institute of Neurological 

Diseases and Blindness had been created. 

(Eventually it became the National Institute for 

Neurological and Communicative Disorders 

and Stroke). Major support for NARC's 

Masland survey came from this source, again 

through earmarking of MR funds by Rep. 

Fogarty. Dr. Masland himself later became 

Director of the institute. He gave direction to 

the collaborative perinatal research project in 

1959, involving a massive followup of some 

56,000 pregnant women and their children over 

a seven or eight year span. 

The National Institute of Child Health and 

Human Development (NICHD) came into 

existence in 1962 with the express intent of 

Congress that it concern itself with both normal 

growth and developmental deviance, in both 

biomedical and behavioral interests. Under Dr. 

Robert Aldrich, its development encompassed 

five extramural programs, of which mental 

retardation was one. This has been a major 

source of support for the Mental Retardation 

Research Centers constructed as a result of the 

Kennedy legislation of 1963 (Title I Part A, 

P.L. 88-164). 

92 
One byproduct of the Kennedy legislation 

was the creation in late 1963 of a small Mental 

Retardation Branch in the Division of Chronic 

Diseases of the Bureau of State Services of 

PHS. Far down at the bottom of the bureaucratic 

ladder, it was at the time the only unit of the 

Federal Government devoted exclusively to 

mental retardation. Designed for a minor 

purpose originally, it took on the management of 

grants for State planning, acquired some 

demonstration grant money, and eventually 

assumed responsibility for the construction 

programs for UAF and community facilities. 

To this was added in 1966 responsibility for the 

Hospital In-Service Training (HIST) and 

Hospital Improvement Program (HIP) 

(originated in 1964 by NIMH) which greatly 

assisted in the upgrading of public institutions for 

the retarded. 

This increase of responsibilities brought the 

Branch to a growth stage sufficient to warrant 

increase of status and it became the Division of 

Mental Retardation within the Bureau of State 

Services in 1967. 

Later in that same year the Division was 

moved out of PHS into the newly organized 

Rehabilitation Services Administration under 

the umbrella of Social and Rehabilitation 

Services. Unfortunately, in this transfer it lost its 

funds for research, demonstration and training 

grants, which it had expected to carry with it 

into its new home. Its history, however, was 

still not complete. In 1971 it was renamed the 

Division of Developmental Disabilities, still 

within RSA. Now in 1975 it has acquired a 

new home and more mature stature as the 

Developmental Disabilities Office within the 

Office of Human Development and reports 

directly to the Assistant Secretary. Such is the 

developmental story of a fledgling bureaucratic 

agency in search of a home. 

A related chapter in the developments of 

the Public Health Service Act is the story of 

the Hill-Burton Act of 1948. This act was 

designed to facilitate community hospital 

construction in relation to the USPHS mission of 

stimulating health service delivery. It was 

based on a State formula allocation requiring 

a local or grantee match with rather specific 

stipulations designed to upgrade standards of 

construction. The authority of the Act was 

broadened several times. In 1954 a wide variety 

of medical facilities including centers for 

diagnosis and rehabilitation were made eligible. 

This authority was utilized in mental retardation 

construction between 1958 and 1971 to the extent 

of about 32 million dollars or slightly more than 

1% of the total Hill-Burton funds expended in 

those years. The Hill-Burton Act was replaced 

in 1975 by P.L. 93-641, the National Health 

Planning and Resources Development Act. 

The Public Health Service was completely 

reorganized in the Comprehensive Health 

Planning and Public Health Services Act of 

1966 and the Partnership for Health Amendments 

of 1967 and again in 1974 and '75. 

One effect of these amendments was to move 

government health programs sharply away from 

categorical diseases, especially in the funding 

of public health services to the States, replacing 

nine previous categories with one all-purpose 

grant. Health-related mental retardation 

programs were then subject to the priorities of 

State health planners, and funds were withdrawn 

that were intended for mental retardation 

projects under the Division of Mental 

Retardation. Boggs (1972, p. 172) quotes the 

report of the House Subcommittee on Health 

and Public Welfare indicating its concern that 

the gains for mental retardation not be lost in this 

redirection of PHS. 

Although mental retardation is the major 

handicapping condition of childhood, services for 

the retarded have long been neglected in public 

programs. While recent emphasis at the Federal 

level has begun to change this situation, a special 

focus on mental retardation must be maintained until 

more is known about the treatment of mental 

retardation and services for the mentally retarded 

are more widely available in public agencies 

which serve the general population. 

93 
1963—Substantive Legislation in Mental Retardation 

Legislation on the subject of mental retardation has never merited the designation of 

an enduring, all-encompassing, substantive Act, 

such as Social Security or Elementary and 

Secondary Education. There are two reasons 

for this lack: one, mental retardation has been 

regarded as a categorical problem without a 

recognized State system, since in most States 

MR services were subsumed under mental 

health or some other comparable system; and, 

two, by its complex nature it interpenetrates 

virtually the entire structure of government, 

therefore being recognized under a range of 

primary Acts of Congress. (It was not until the 

early '70s that a "coordinator" of programs for 

the retarded was officially identified in each 

State.) Consequently, mental retardation legislation tends to be fragmented and its administration 

dispersed. 

This situation presents difficulties, both in 

developing a coherent and comprehensive 

legislative program with balanced funding, and 

in maintaining a coordinated administrative 

structure to carry out programs assigned to 

diverse agencies. 

The problem is further complicated by the 

necessity of reaching the end product,. the 

retarded person, or the preventive action, 

through State and local processes. Most Federal 

programs, with a few exceptions, such as 

Federal income tax and Social Security 

insurance, involve State initiatives, 

administrative agencies and matching funds. The 

entanglements of bureaucracy at multiple levels 

and through labyrinthine channels frequently 

ends in futility, commonly generates 

frustration and is widely viewed as inordinately 

inefficient and wasteful—with no one held accountable except the impersonal systems 

themselves. 

To achieve a coherent program in mental 

retardation there is need for an approach 1) 

based on comprehensive national planning 

with specified goals, 2) represented in coherent 

legislation targeting the principal means to 

achieve the goals, 3) requiring coordinated 

planning by the States as participants in 

federally funded programs, and 4) involving 

mechanisms for coordination of the Federal 

administrative effort. 

An initial phase of such an approach was 

the appointment of the President's Panel on 

Mental Retardation in 1961, which produced 

National Action to Combat Mental 

Retardation in 1962 (See Chapter 6). On 

February 5, 1963, President Kennedy sent his 

special message to Congress outlining proposed 

legislative programs on mental illness and 

mental retardation, the first (and only) time a 

President has delivered a message to the 

Congress specifically on these subjects. 

With his message the President recommended two Acts: one which became P.L. 88-

156, amending the Social Security Act to 

augment MCH-CC authority, and to add an 

authority for project grants to the States to 

begin comprehensive mental retardation 

planning at the State level; the other, which 

became P.L. 88-164, providing construction 

funds for research centers, university affiliated 

facilities (UAFs) and community service 

facilities and mental health centers, along with 

an expansion of aid for training personnel in 

special education. 

P.L. 88-156, the Maternal and Child 

Health and Mental Retardation Planning 

Amendments, as enacted by Congress, was 

signed into law in October 1963. It provided $2.2 million, fully appropriated for 

State planning, but required that the planning be comprehensive on a coordinated 

interagency basis. For four years this portion of the bill was carried out by the 

Mental Retardation Branch in the Public 

Health Service. The plans produced were 

highly varied, reflecting the political, social and organizational differences of the 

53 jurisdictions in which they were developed. Boggs (1971, p. 118) notes that the 

94 
plans contained a number of instructive, 

ingenious and innovative ideas, especially as to 

the mode of organizing services for the retarded 

within a State and its communities. The omnibus 

Medicare bill of 1965 included an amendment 

authorizing funds to strengthen coordinating 

mechanisms at State level and to assist in 

implementing the State plans as formulated. 

P.L. 88-156 also authorized grants for 

maternal and child health projects applicable to 

high-risk mothers, especially in poverty areas. 

This resulted in a substantial increase in the 

amount and proportion of MCH funds listed as 

obligated to mental retardation, an increase 

sustained through 1973 even when specific 

earmarking had been discontinued. The overall 

change was from $1 million (2% of MCH) in 

1963 to $34 million in 1973 (23% of MCH) 

(Braddock, p. 83). This development was targeted at a major aspect of prevention of mental 

retardation from environmental causes associated 

with poverty. It is almost impossible to evaluate 

the reduction of mental retardation attributable to 

these efforts; however, infant mortality was reduced differentially in the target census tracts. 

The second relevant bill signed by President 

Kennedy before his death was P.L. 88-164, 

the Mental Retardation Facilities Construction 

Act of 1963. As the bill came through, it 

combined three separate pieces of legislation: 

Title I contained the original mental retardation 

facilities construction provisions recommended 

in the Panel's National Action. This was a new 

construction Act, technically within the scope 

of "health," but providing for facilities construction of a different nature than the HillBurton Act could reasonably accommodate. 

Part A authorized the construction of 

comprehensive mental retardation research 

centers in the biomedical and behavioral 

sciences. Twelve of these were eventually 

constructed, with the Kennedy Foundation 

providing substantial non-Federal construction 

funds for several. A total of $26 million of 

Federal money was spent on this construction 

between 1965 and 1967 under NICHD. 

Supporting funds were much harder to come 

by, however. Core support has come from 

NICHD, which was given administrative 

responsibility for the program. However, 

extramural research funding in mental 

retardation has suffered from the same 

retrenchments experienced by most publicly 

supported research institutions since the late 

1960s. Also, priorities have shifted from 

categorical subjects to the broader, "human 

development" field. 

Part B of Title I authorized the construction 

of university affiliated clinical facilities for 

mentally retarded persons, (UAFs), designed to 

include exemplary service features, training of 

personnel, and later, applied research. This 

program funded with $41.5 million out of a 

total authorization of $82.5 million from 1965 to 

1972, resulted in new facilities associated with 19 

universities. 

An additional 15 to 20 centers recognized 

as UAFs have developed without the benefit 

of Federal construction funds. Operating 

support to most of the original facilities came in 

part from Maternal and Child Health. Beginning 

in 1972, the Division of Developmental 

Disabilities has had $4.25 million a year to assist 

both constructed and "unconstructed" facilities. 

Drastically limited funds have severely 

hampered the program's envisioned development. 

Part C authorized construction funds for 

community facilities for the mentally retarded. 

This money was made available in the form of 

allotments to the States using the Hill-Burton 

Act as a model. Between 1965 and 1970 a total 

of $90 million was obligated for this 

construction from the $147.5 million authorized. 

95 
Authorization for staffing funds for the 

community centers was delayed, unfortunately, 

but came about in the addition of Part D to the 

original Title I in the Mental Retardation 

Amendments of 1967. That authority, expired in 

1970 (later superceded by the formula grants 

of the DD Act, Part D) resulted in a total 

obligation of only $40 million from 1969 to 

1974. 

Title II of P.L. 88-164 provided for development of community mental health centers, 

which have quite a different intent from 

retardation centers. In a few States, mental 

health centers aspired to serve retarded people 

but with generally minor results. 

Part III was an education bill which for 

convenience was attached to the "health"- 

oriented mental retardation Act. It was designed 

to extend the old Public Law 85-926 

providing for the training of special education 

personnel, and combine it with a previous bill 

on education of the deaf. It also authorized 

modest funds for demonstration projects in special 

education which were so oversubscribed that 

major increases were authorized in 1965. 

A new Division of Education of the 

Handicapped was given a brief 18-month life 

in 1964, under the direction of Dr. Samuel 

Kirk, later (1966) revived as the Bureau of 

Education for the Handicapped under Dr. 

Edward Martin. The training programs 

achieved a steady State funding of about $10 

million annually from 1969 through 1973, and 

the demonstration projects about $1.5 million in 

the same period. 

The impetus of the Kennedy Administration's initiative in the field of mental retardation was carried through in the first two 

years of the Johnson Administration, linked to 

his concept of the "Great Society." Revision 

of the Vocational Rehabilitation Act was 

finally achieved in 1965 after four years of 

effort. The amendments of P.L. 89-333 

broadened the scope of sheltered workshops 

and their operation, providing for construction, 

training stipends and initial staffing. It broke 

new ground in authorizing construction of 

community residences for retarded adults in the 

rehabilitation program. However, subsequent 

funding for this purpose was extremely restricted. 

Other important advances came in the 

Elementary and Secondary Education Act of 

1965 (P.L. 89-10); in the CHAMPUS 

program providing MR service costs to 

dependents of active duty military personnel; 

and in the 1965 revision of the Immigration 

Law to allow admission of mentally retarded 

persons for permanent residence under certain 

limited conditions. 

On October 30, 1970, President Nixon 

signed into law the Developmental Disabilities 

Services and Facilities Construction Act of 

1970 (P.L. 91-517) which amended P.L. 88-

164 and gave significant new directions to 

mental retardation programming. The full 

story of this piece of legislation, with all its 

controversies, delays and delicate maneuverings 

is recounted by Elizabeth M. Boggs, one of 

its principal architects (Boggs, 1972, pp. 184-

201). Dr. Boggs served as the chairman of the 

subsequent National Advisory Council on 

Services and Facilities for the 

Developmentally Disabled and was involved 

with others between 1973 and '75 in the 

efforts to carry forward necessary further 

amendments to the Act. A further revision of 

the Act was effected by P.L. 94-103, signed 

in October 1975. 

Conceived as a major amendment to P.L. 

88-164 (1963), the 1970 Act was generated by 

an ad hoc coalition representing the National 

Association for Retarded Children, the 

American Association on Mental Deficiency, 

the National Association of Coordinators of 

State Programs for the Mentally Retarded, the 

Council for Exceptional Children, the National 

Association of State Mental Health

96 
Program Directors and United Cerebral Palsy, 

Inc. The group was later joined by a representative 

of the Association of University Affiliated 

Facilities. 

The coalition wanted a less categorical 

approach than had been reflected in previous 

legislation. They also decided to make full use of 

the major thrusts of the 1963 legislation, and to 

make a clear distinction between the target 

conditions of this legislation and those of mental 

health legislation. The primary goal they said, 

should be the provision of the most humanizing 

service possible to persons with substantial disability 

and multiple needs. It was assumed that all States 

were already conducting a number of services in 

this field, but that all needed a flexible application 

of Federal support for their further advancement 

and coordination. The main intent was "to assist 

the States to develop and implement a 

comprehensive and continuing State plan to meet 

the present and future needs of persons with 

developmental disabilities." 

The term "developmental disability" was 

carefully selected to designate the target conditions. 

The rationale was twofold: it avoided categorical 

fractioning of service organizations and funding 

among similar and overlapping disabilities, and it 

could be defined in such a way as clearly to 

distinguish the field from that of mental health. The 

intent was to tie the concept closely to 

traditionally identified mental retardation but to 

make it less dependent on narrow diagnostic criteria. 

Considerable controversy attended both the term 

and its definition. 

The final Developmental Disabilities Act 

contained two titles: Title I was a formula grant 

program designed to assist the States in providing 

a range of services in terms of lifetime needs of 

the developmentally disabled. The main thrusts 

were planning toward delivery of services, 

coordination of existing Federal programs, and 

manpower development under a 

multidisciplinary umbrella. The following 

provisions were included under the title: 

 Defines developmental disability as a disability 

attributable to mental retardation, cerebral palsy, 

epilepsy or other neurologically handicapping 

condition found to be related to mental 

retardation or requiring treatment similar to that 

for mentally retarded individuals. 

 Sets criteria for disability as a condition 

originating before the age of 18, continuing or 

expected to continue indefinitely, and constituting a 

substantial handicap. 

 Requires each State to submit a plan to the 

Department of Health, Education, and Welfare in 

order to be eligible for its formula grant allocation. 

 Mandates that the State plans include description 

of other Federal-State programs in the provision of 

services for the developmentally disabled. These 

programs were listed as: 

vocational rehabilitation 

public assistance 

social services 

crippled children's services 

education for the handicapped 

medical assistance 

maternal and child health 

comprehensive health planning 

mental health 

and others 

 Services for the developmentally disabled are 

defined to include: 

diagnosis 

evaluation 

treatment 

personal care 

day care 

domiciliary care 

special living arrangements 

training 

education 

sheltered employment 

recreation 

counseling 

protective and other social or socio-legal service 

information 

follow-along 

transportation 

 Requires that the State Councils include 

representatives of each of the principal State 

agencies and of local agencies and nongovernmental organizations and groups concerned 

with services for the developmentally disabled and 

representatives of consumers (at least one-third 

must be consumers). 

 Authorizes the Secretary of HEW to set aside 

up to 10% of the amount appropriated for projects 

of national significance. 

 Establishes a National Advisory Council of 20 members. 

 Authorizes progressive funding from $60 

million in FY 1971 to $130 million in FY 1973. 

97 
Title II of the Act extended the 1963 

construction authority for UAFs (never funded 

after 1968) and provided for operating support. 

The Division of Developmental Disabilities 

(formerly Division of Mental Retardation) was 

made responsible for administering this new 

operational support program for University 

Affiliated Facilities. 

The implementation of this Act required 

considerable revision in procedures at Federal and 

State levels. Regulations governing Title I were 

not published until 1972. Appropriations fell 

drastically below authorizations for grants to 

States; no funds were appropriated for UAF 

construction, and UAF support funds were 

substantially below amounts authorized. 

The DDS Act of 1970 left many problems 

unresolved and gaps which required attention. The 

delicate balance of competing interests and points 

of view which had been so skillfully compromised 

in 1970, became a renewed source of difficulty in 

the development of amending legislation. Although bills passed both House and Senate in 1974, 

irreconcilable differences led to failure of a 

Conference Committee to compromise the issues 

before the adjournment of Congress. As a 

consequence, new bills were introduced into the 

two Houses in 1975 and finally enacted as P.L. 

94-103 with the title Developmentally Disabled 

Assistance and Bill of Rights Act. 

Title I of P.L. 94-103 extended and revised the 

provisons of the 1970 Developmental Disabilities 

Service and Facilities Construction Act by: 

 Defining UAF, granting authority for UAFs to 

establish satellite centers, authorizing funds for 

administration and operation and for developing 

satellite centers; authorizing renovation or 

modernization of UAF structures, or for construction, renovation or modernization of 

satellite centers, and authorizing funds for such 

construction and renovation. 

 Increasing authorized funds for State 

allotments for DD planning, construction, 

program development, deinstitutionalization of 

inappropriately placed persons, and other purposes specified in the original Act. 

 Authorizing special projects grants and funds for 

their support. 

 Broadening and refining the definition of 

"developmental disability" to include autism, and 

"any other condition of a person . . . closely 

related to mental retardation or requires 

treatment and services similar . . ." 

 Providing for the development of a 

comprehensive system for the evaluation of 

services provided to developmentally disabled 

individuals, in terms of data obtained from 

individualized rehabilitation plans or other 

comparable individual data.

Title II had been one of the controversial 

issues holding up enactment of the new 

legislation because in the Senate version it 

contained verbatim, detailed standards for 

institutions and community services. As enacted, it 

was reduced to a few pages, specifying the basic 

rights of persons with developmental disabilities to 

appropriate treatment, services and habilitation 

"designed to maximize the developmental 

potential of the person" and "provided in the 

setting that is least restrictive of the person's 

personal liberty." Conditions were identified for 

protecting these rights and requiring satisfactory 

assurances of such protection by any State 

receiving allotments under the Act. 

Title III directs the Secretary of HEW to 

conduct several studies, among them a further 

study of the definition of "developmental 

disability" for the purposes of determining what 

conditions should be included under the Act. 

Judicial Landmarks 

The judicial system of the United States rests 

on three principal grounds: 1) the Constitution of 

the United States and the constitutions of the 

States; 2) legislation enacted by the Congress of 

the United States and the legislatures of the 

several States; 3) common law, or the accumulation of legal precedents not otherwise fully 

determined by Constitutional or legislative Acts. 

The court systems within States hear cases 

resting on the constitution and statutory laws of the 

State, and may be appealed to the State 

Supreme Court. If there is then an issue of 

Federal constitutionality, appeal may be made to 

the Supreme Court of the United States. 

98 
On the other hand, if the case originates as one 

involving Federal law or constitutionality it may 

be tried in the Federal District Court, taken to 

the Circuit Court of Appeals and thence to the 

United States Supreme Court. 

A case tried only in State courts has no direct 

application in any other State, but may be cited as a 

precedent in trials elsewhere; a case tried in 

Federal court on constitutional grounds or grounds 

of Federal law would have application in all 

States. 

A case may be brought as an individual action, 

applying only to the individual person seeking 

relief; the judgment holds only for that person, but 

may be cited as precedent in other cases. 

A case may be brought as a class action suit in 

behalf of all persons who may be subject to the 

same circumstances from which the plaintiff is 

seeking relief; in this case the judgment is 

applicable to all persons of that class. Recently the 

Supreme Court has placed more restriction on the 

filing of a class action suit, requiring that all 

members of the class in whose behalf the suit is 

brought be individually named in the suit. 

The major judicial landmark cases are, of 

course, those class action suits which have 

resulted in decisions by the United States Supreme 

Court on matters of broad social concern. Such 

decisions are binding on all subordinate 

jurisdictions with respect to the specific 

principles of law established. These are 

frequently controversial and lead to lengthy 

processes of compliance or, in some cases, 

overturn by statute or constitutional amendment. 

Not infrequently, the court is itself divided, 

with a dissenting opinion filed by a justice in the 

minority. Sometimes, the action of the court 

opens up broad new perspectives by its 

interpretation of the Constitution. Chief Justice 

Hughes made the famous statement that "The 

Constitution is what the Supreme Court says it 

is." 

The point is that the law is a living thing, not 

a static settled-once-and-for-all affair. It grows 

and changes with the growth and changes of 

society. But it has an overall endurance and 

consistency making possible the existence of a 

democratic social order "ruled by laws not 

men." Against such considerations, we can see 

the emergence of new perspectives with respect 

to mentally retarded persons and their status 

under the law in the United States. 

Mentally retarded individuals have commonly 

enjoyed only limited constitutional or statutory 

rights and have frequently been excluded by law 

or custom from functions normally exercised by 

citizens. They have been subjected to a variety 

of controls restricting their liberties and subjecting 

them to conditions intolerable to other citizens. 

Especially during the early decades of this 

century such measures were embodied in State 

laws and in institutional practices. Only recently 

have fundamental issues been raised concerning 

the legal and constitutional rights of retarded 

persons and suits brought to test the legality of the 

regulations, restrictions and other conditions to 

which they have been subjected. 

These suits have tested specific issues, but in 

the testing of them, very broad principles have 

been established: the principle that every living 

person has all the rights guaranteed to him by 

the Constitution; that the specific characteristics 

of the person, his race, color, sex, physical 

condition or mentality do not of themselves 

diminish his constitutional right; that under the 

Constitution he enjoys equal protection of the 

laws, and that any diminution of his rights must 

be through a "due process" procedure which 

establishes the legality and necessity of the 

restriction. 

99 
During the past quarter century, the appeals of 

citizens to the courts for relief from alleged 

infringements on constitutional rights have been a 

prominent part of the American scene. The 

"civil rights movement" is usually associated 

with the effort of racial or ethnic groups to 

attain equality of citizenship. It has extended to 

women and their claim to redress of systematic 

and unconstitutional discrimination: It is the same 

principle that has led to a series of class action suits 

and landmark decisions with regard to handicapped 

people in general and mentally ill or mentally 

retarded in particular. 

The first case cited set the stage for the series of 

actions brought in behalf of mentally retarded 

persons in the 1970s. 

1954—Brown vs. Board of Education of 

Topeka, 347 U.S. 483 (Kans. 1954) 

This is the famous landmark case that required 

desegregation of public schools, overturning the 

"separate but equal" policy which had held sway 

since 1896. The stream of litigation stemming 

from this ruling of the Supreme Court has been 

voluminous. Here the issue of equal opportunity for 

education is given a strict constitutional interpretation.

1972—Pennsylvania Association for Retarded 

Children vs. Commonwealth of Pennsylvania, 

334 F. Supp. 1257 (E.D. Pa. 1971) and 343 F. 

Supp. 279 (E.D. Pa. 1972) 

This landmark case inspired a large number of 

similar class action law suits subsequently filed, and 

leading to congressional action (P.L. 93-380, 

Education Amendments of 1974) requiring all 

States to develop plans for providing public education to every handicapped child regardless of 

degree of defect. The principles established on a 

consent order in Federal District Court were: 

1. The public school officials are required to 

provide to every mentally retarded child 

"access to a free program of education and 

training." 

2. Notice, opportunity for a hearing and 

periodic reevaluation are required regarding 

any change in educational status. 

3. Labeling a child "mentally retarded" 

imposes a serious stigma upon that child, and, 

therefore, full due process procedural 

protections are necessary before such a label 

may be imposed. 

4. "All mentally retarded persons are capable 

of benefiting from a program of education and 

training . . . the greatest number of retarded 

persons, given such education and training, are 

capable of achieving self-sufficiency and the 

remaining few, with such education and 

training, are capable of achieving some 

degree of self-care . . . the earlier such 

education and training begins, the more 

thoroughly and the more efficiently a mentally 

retarded person will benefit from it and 

whether begun early or not . . . a mentally 

retarded person can benefit at any point in his 

life and develop from a program of education."

1972—Wyatt vs. Stickney 334 F. Supp. 1341 

(M.D. Ala. 1971) and 344 F. Supp. 387 (M.D. 

Ala. 1972) 

It was this case that established the right to 

developmental and ameliorative treatment of 

mentally retarded persons in the least restrictive 

environment. The ruling in Federal District Court 

and affirmed by 5th Circuit Court established that: 

the constitutional right to treatment necessitates 

the following: (1) An individualized treatment 

program; (2) A humane physical and 

psychological environment; (3) An adequate 

and qualified staff; (4) Programs provided in 

the least restrictive manner possible. 

1972—Jackson vs. Indiana 406 U.S. 715 (1972) 

This case involved due process in commitment proceedings. It has broad implications 

with regard to the retarded person involved in 

criminal procedures. Prior to this case, the plea 

of "innocent by reason of insanity," following 

the so-called "M'Naghten Rule" for 

determining criminal responsibility, was applied 

to retarded persons. Under this procedure, an 

accused person judged not to be criminally 

responsible, could be committed to a mental hospital "until recovered." In the case of a 

100 
retarded person this could mean a life sentence 

without a legal determination that he had 

committed the act of which he was accused. 

The principles established by the U.S. Supreme 

Court in the Jackson case were: 

It is a denial of equal protection and due process 

to confine a handicapped person indefinitely until 

he should become competent. A state must, 

within a reasonable time after a person has been 

declared incompetent to stand trial, either release 

him or seek to have him civilly committed. 

The court said that, at the least, due process 

requires that the nature and duration of 

commitment bear some reasonable relation to the 

purpose for which the individual is committed. 

1973—Souder vs. Brennan 362 F. Supp..808 

(D.D.C. 1973) 

This case established the right to be free from 

institutional peonage and involuntary servitude. 

Decision in the District Court of the District of 

Columbia established that: 

The Department of Labor must enforce 

provisions of Fair Labor Standards Act (FLSA) 

of 1966 and provide guidelines and policy 

directives as to patient-laborers in State institutions. 

Superintendents of State institutions must keep 

required records of patient-laborers and inform 

them of their rights under this decision. 

1973—Urban League vs. Washington Metropolitan Area Transit Authority (D.D.C. filed 

April 14, 1972) 

This case, enforcing the right of free access to 

buildings and transportation systems, has far 

reaching implications for retarded as well as 

physically handicapped. 

This is a leading case in which the Court granted 

partial summary judgment declaring that 

defendants had a legal obligation to design a 

subway system for use by handicapped persons. 

The injunction, issued later, enjoined WMATA 

from commercially operating the subway 

system until it was made accessible to 

physically handicapped persons. 

1974—Wyatt vs. Aderholt 368 F. Supp. 1383 

(M.D. Ala. 1973) 

This decision upholds the right of the retarded 

person to procreate and declares the Alabama 

"compulsory sterilization" law unconstitutional. 

In effect it reverses a Supreme Court decision of 

1927 which affirmed involuntary sterilization for 

eugenic reasons. The principles established in Federal court were these: 

 Sterlization must be in the "best interest" of 

the individual and may not be done for 

"institutional convenience"; 

 No one under 21 may be sterilized except as a 

"medical necessity"; 

 Written consent must be obtained and the person 

must be competent; where the person is 

incompetent, approval must be obtained from a) 

the director of the institution, b) a review 

committee, and c) a court of competent 

jurisdiction; 

 Residents must be provided counsel in 

proceedings concerning sterilization; 

 No coercion to encourage sterilization shall 

be permitted. 

These are only a few of the more outstanding 

civil rights cases brought in behalf of retarded 

persons in the past five years. Altogether more 

than a hundred such suits have been brought. The 

net effect has been to cause State officials and 

legislatures to reexamine their statutes and their 

procedures regarding retarded persons with 

respect to the constitutional protection of civil 

rights. (PCMR, 1974) 

Coordination of Federal Mental Retardation 

Programs 

One of the major problems of the Executive 

Branch of the United States Government is that of 

retaining some semblance of unified and consistent 

purpose. 

At the top level, of course, the responsibility 

rests with the President and his Cabinet, supported 

by the White House staff. At the next level, 

coordination is achieved in part by the Office of 

Management and Budget and currently, for the 

Nation's internal affairs, the Domestic Council, 

with the Vice-President as Chairman. At the 

operational level, functions which cut across 

those of other departments are integrated by either 

ad hoc or continuing coordinating bodies 

made up of the Secretaries or their designees. 

Such complex departments as Defense or Health, 

Education, and Welfare, develop internal 

coordinating mechanisms. 

The government's interest in mental retardation, 

and in handicapped persons generally, falls mainly 

within HEW, across a wide range of its 

administrative divisions. Mental retardation is 

also the concern of other Departments, such as 

Labor, Justice, Housing and Urban Development,

101 
Transportation, Interior, State and Defense, as 

well as such executive agencies as the President's 

Committee on Employment of the Handicapped, 

ACTION, Veterans' Administration, and Civil 

Service Commission; in short, across virtually the 

whole structure of the Federal Government. As 

the Federal involvement in the problems of 

handicapped persons has grown, so has the need to 

maintain lines of communication and methods of 

coordination. 

The first attempt to coordinate mental 

retardation programs occurred in 1955 when, as a 

result of pressure from parents and increasing 

Congressional interest, the Secretary of HEW 

appointed an internal Committee on Mental 

Retardation "with the view to providing 

additional national focus, expansion and 

improvement of service, programs and activities 

of its operating agencies in this field." (Boggs, 

1971, p. 110). 

The first chairman of the committee was the late 

Dr. Joseph Douglass who subsequently served as 

Executive Director of the President's 

Committee on Mental Retardation. The name of 

the departmental committee in 1963 changed to 

the Secretary's Committee on Mental Retardation 

(SCMR). Chairman Luther Stringham assisted in 

the follow-through of President Kennedy's Panel 

report. He had served as liaison between the 

Panel and HEW administration. 

SCMR played a strategic role in assisting 

Wilbur Cohen, who was appointed HEW 

Assistant Secretary for Legislation by President 

Kennedy, in the drafting of bills embodying 

Panel recommendations. (In 1965 Mr. Cohen 

became Undersecretary and in 1968, Secretary of 

HEW in the Johnson Administration). When 

Luther Stringham was appointed Executive Director of NARC later in 1963, Wallace 

Babington became Executive Director of the 

Secretary's Committee. 

In 1972 Secretary Richardson changed the 

committee to the Office of Mental Retardation 

Coordination in the Office of the Secretary with 

expansion of staff and function. OMRC was 

charged with the following administrative 

functions: 

 Coordinating and evaluating HEW mental 

retardation activities; 

 Serving as a focal point for consideration of 

department-wide policies, programs, procedures, activities, 

and matters related to mental retardation; 

 Serving in an advisory capacity to the Secretary; and 

 Serving as liaison for HEW with the President's 

Committee on Mental Retardation. 

In 1974 consistent with the prevailing noncategorical trend, OMRC was dropped when 

Congressional action created the Office for the 

Handicapped (OH) under the Rehabilitation 

Amendments of 1973. Finally, in the 

Rehabilitation Amendments of 1974, a simple 

name change to the Office for Handicapped Individuals (OHI) was made. The responsibility of 

OHI is to serve as a center for planning, 

coordination and information for all handicapped 

persons under the Office of Human 

Development. 

Since its establishment by executive order, the 

President's Committee on Mental Retardation has 

also served as a coordinating agency of government, 

but within the total context of the Executive 

Branch. This was implicit in the initial charge to 

the Committee given by President Johnson in 1966; 

but in 1971, when the Committee met with 

President Nixon, it was emphasized that the 

Committee's function included the coordination 

of the efforts of "all executive departments and 

agencies" who were directed by the President to 

"evaluate their programs—medical, legal, 

education, social service and environmental—with 

a view to providing maximum support to the 

President's Committee on Mental Retardation, 

and . . . report to . . . the Chairman of that 

Committee." 

In a new Executive Order (11776) on March 

28, 1974, President Nixon continued PCMR and 

specified among its responsibilities that of 

coordinating activities of Federal, State and local 

government, private foundations, and other private 

organizations. 

102 
Among its recent coordinating efforts, PCMR 

has brought together representatives of all 

relevant HEW agencies in order to develop a 

plan to design and implement 

deinstitutionalization. The plan should result in: a) 

reduction of the institutional population by onethird and b) in the development of alternative 

services in the community. 

The task of coordinating widely distributed 

government and private program responsibilities 

so that they converge to the maximum benefit of 

individuals is formidable. Such coordination cannot 

be done by force but it requires authority. It 

cannot override all the competing demands placed 

upon governmental manpower and funds, but it must 

be able to draw forth the right efforts and resources 

from those best able to deliver them. No small task, 

and 1975 finds it far from complete. 

Philadelphia Inquirer

References 

Boggs, Elizabeth M. "Federal Legislation," in Mental 

Retardation, ed. Joseph Wortis. Vol. III. Grune & 

Stratton, 1971. 

"Federal Legislation 1966-1971." in Mental 

Retardation, ed Joseph Wortis. Vol. IV. Grune & 

Stratton, 1971. 

Braddock, D.C. Mental Retardation Funds, An 

Analysis of Federal Policy. Unpublished doctoral 

dissertation, University of Texas, Austin, 1973. 

Available in hardcover from University Microfilms, 

Ann Arbor, Michigan. 

Conley, Ronald W. The Economics of Mental 

Retardation. Baltimore and London: The Johns 

Hopkins University Press, 1973. 

Labovitz, I. M. Aid for Federally Affected Public 

Schools. Syracuse University Press, 1963. 

Martin, E. W. "Breakthrough for the Handicapped: 

Legislative History," Exceptional Children, 1968, Vol. 

34, pp. 493-503. 

President's Commission on Income Maintenance 

Programs. Washington, D.C.: Government Printing 

Office, 1969. 

President's Committee on Mental Retardation. 

Compendium of Law Suits Establishing the Rights of 

Mentally Retarded Citizens. Washington, D.C.: DHEW 

Pub. (OHD) 75-21007, 1974. 

Chapter 6 

Progress of a Plan 

In 1962 the special Panel on Mental Retardation 

appointed by President Kennedy published its 

report, A Proposed Program for National 

Action to Combat Mental Retardation. This 

report, with three supporting documents by the 

task forces on Education and Rehabilitation, 

Behavioral and Social Research, and Law, 

constituted a major milestone in the history of 

mental retardation in the United States. 

There had been some precedent for this kind of 

governmentally supported inquiry and planning in 

other countries, notably in Denmark and Sweden. 

For the United States it meant the full support 

of the Chief Executive in the formulation of a 

unified plan of action on a major type of human 

disability, utilizing the experience of a dozen 

years of voluntary and professional effort. 

The plan of action represented an extraordinarily effective piece of work by 27 

committee members of diverse backgrounds 

and rich resources under the chairmanship of 

Leonard W. Mayo, with the assistance of a 

highly competent staff. Eunice Kennedy Shriver 

served as liaison between the Panel and the 

White House and contributed also to the 

Committee's deliberations. Although the Panel 

was given 18 months for its task, it completed its 

work in two days less than the year they had set 

for themselves in response to the President's 

charge. 

The value of the report as a guide to action 

rested on five indispensable elements: 

1. A clear understanding of the goals: 

 to eradicate mental retardation to the fullest 

extent possible. 

 to enable mentally retarded persons to live 

under conditions of maximum personal and 

social benefit. 

2. Unanimity on basic guiding principles: 

 "The key to prevention and correction of 

mental retardation is in adequate 

understanding of its causes;" therefore, there is 

need for intensive research not only in the 

biomedical but also in the behavioral and 

social sciences. 

 "Society's special responsibility to persons 

with extraordinary needs including the 

retarded is (a) to foster the development of 

their maximum capacity and thus bring them 

as close to the mainstream of independence, 

and 'normalcy' as possible; and (b) to provide 

some accommodation or adjustment in our 

society for those disabilities which cannot be 

overcome." 

 The improvement of specific services for the 

mentally retarded cannot be detached from 

the necessary improvement of basic services 

to all people; hence the effort must be in 

coordination not in competition with other 

national needs. 

 Planning must be "not just for next month or 

next year, but for the next decade," because of 

the complexity of the problem and limited 

manpower and funds. 

3. Knowledge of the state of the art. The 

composition of the Panel itself, its staff support, 

the assistance given by professional bodies, 

ensured the highest quality of expert knowledge. 

Furthermore, the Panel held hearings throughout 

the country and sent missions of inquiry to other 

countries more advanced in mental retardation. 

4. Awareness and careful explication of mental 

retardation. Its causes are multiple and 

imprecisely understood, frequently unknown. Its 

treatment and social accommodation touch 

virtually every facet of social organization and 

service. Consequently, planning must be 

comprehensive and must reduce complexity to 

reasonable order. 

5. Explicit recommendations dealing with 

practical measures, directed toward clearly 

envisioned goals.

Because the Panel report was based on these 

considerations, some of its initial and basic phases 

were swiftly implemented. Even before the 

document was in print, but following its 

presentation to President Kennedy, intensive 

activity began in the Department of Health, 

Education, and Welfare to prepare the first and 

most necessary legislative recommendations, and 

plans were launched for widespread promulgation throughout the country. 

105 
The chronology of the Proposed Program 

for National Action through its initial stages of 

implementation involved the following highlights: 

October 1961—President's Panel appointed. 

October 1962—Panel report submitted in A 

Proposed Program for National Action to 

Combat Mental Retardation. 

December 1962—Dr. Stafford Warren appointed 

Special Assistant to the President on Mental 

Retardation. 

February 1963—Presidential Message to 

Congress on Mental Health and Mental 

Retardation. 

February 1963—Four bills introduced in both 

Houses of Congress representing first phase 

implementation of major recommendations. 

June 1963—Initiation of approach to 

Advertising Council for national campaign on 

mental retardation (carried out 1964-67, with 

support of NARC, Kennedy Foundation and 

HEW funds). 

September 1963—White House Conference on 

MR at Airlie House, with representatives of 

State governments and leaders in the field. 

October 1963—P.L. 88-156 and 88-164 signed 

into law. 

The history of subsequent Federal legislation to 

implement the Panel's recommendations during the 

administrations of Presidents Johnson and Nixon 

is detailed in Chapter 5. In the decade following 

publication of the report, there were substantial 

developments in education, rehabilitation and 

employment, institutional upgrading, day-care, 

maternal and child health care, immunization, 

diagnostic screening and evaluation and many 

other elements of service. Research in mental retardation and related areas yielded a number of 

publications in both biomedical and behavioral 

fields. Manpower development occurred in many 

areas necessary to the fulfillment of the plan of 

action. 

The Panel presented its 112 recommendations 

under eight headings. We shall review the 

recommendations of each section in turn, noting 

the principal elements of achievement and shortfall, and indicating the extent to which incomplete 

results or failures remain worthy of continuing 

efforts. 

The introduction to the report summarizes the 

main recommendations as follows: 

 Research in the causes of retardation and in 

methods of care, rehabilitation, and learning. 

 Preventive health measures including (a) a 

greatly strengthened program of maternal and 

infant care directed first at the centers of 

population where prematurity and the rate of 

"damaged" children are high; (b) protection 

against such known hazards to pregnancy as 

radiation and harmful drugs; and (c) extended 

diagnostic and screening services. 

 Strengthened educational programs 

generally, and extended and enriched 

programs of special education in public and 

private schools closely coordinated with 

vocational guidance, vocational rehabilitation, and 

specific training and preparation for 

employment; education for the adult mentally 

retarded, and workshops geared to their needs. 

 More comprehensive and improved clinical 

and social services. 

 Improved methods and facilities for care, 

with emphasis on the home and the 

development of a wide range of local 

community facilities. 

 A new legal, as well as social, concept of 

the retarded, including protection of their civil 

rights; life guardianship provisions when needed; 

an enlightened attitude on the part of the law and 

the courts; and clarification of the theory of 

responsibility in criminal acts. 

 Helping overcome the serious problems of 

manpower as they affect the field of science 

and every type of service, through extended 

support, and increased opportunities for students 

to observe and learn the nature of mental 

retardation. 

 Programs of education and information to 

increase public awareness of the problem of 

mental retardation.

In addition to a strong emphasis on research 

and prevention, the report recommended that 

services constitute a comprehensive, communitycentered continuum with a fixed point of 

referral; and that with Federal assistance, the States 

and local communities bear the principal 

responsibility for financing and improving 

facilities for mentally retarded persons. 

106 
Research and Scientific Manpower 

This section of the Panel Report is based 

on the following assumptions: (1) that mental 

retardation is not one, but many disorders, of 

which only a very few are sufficiently 

understood to yield meaningful diagnosis; (2) 

that mental retardation, more than most 

phenomena, calls for knowledge from almost 

every branch of science: i.e., an extraordinary 

breadth of research; (3) that deep understanding 

of mental retardation is dependent on penetrating the most elusive secrets of the biological, 

social and behavioral world, hence must involve 

basic research of a high order; (4) usefulness of 

new knowledge will depend on recording, 

retrieval and communication of great masses of 

information and theory from one discipline to 

another and between the areas of basic inquiry 

and the areas of practical application; (5) the 

resolution of basic knowledge into practical 

applications is slow and complex, hence 

requires time, patience and the intervening use of 

careful, cautious and tentative practices; (6) the 

nature and demands of effective research, 

including the communication and use of its 

findings, is such as to require significant Federal 

leadership and support: 

1. Federal Leadership in Research 

After commending the establishment of the 

National Institute of Child Health and Human 

Development* and the upgrading of the 

Institute of General Medical Sciences with its 

developing interest in mental retardation, the 

report recommends review and upgrading in 

salary levels and personal satisfactions of 

scientific personnel. This recommendation has 

been partially met, with reduction of the gap 

between governmental and non-governmental 

salaries and improved retirement benefits. 

*Prior to the publication of its Report, the Panel 

recommended to President Kennedy the 

establishment of a National Institute of Child 

Health and Human Development as the principal 

agency for research, both biomedical and behavioral, 

in mental retardation. The President responded by 

issuing an Executive Order creating NICHD within 

NIH, and it was subsequently given statutory 

standing in P.L. 87-838 of 1962. 

2. Expansion of Research 

Noting the recent developments of biomedical research into causes of organic 

impairment with major areas still untapped and the 

low state of inquiry into social, economic and 

environmental causative factors, the Panel made 

four recommendations for the expansion of 

research in the field: (a) Development of at 

least ten research centers on mental 

retardation at universities and institutions for 

the retarded; 

(b) development of ethical standards for the 

protection of mentally retarded subjects; 

(c) review by the Secretary of HEW of the 

requirements for research facilities and development of plans to meet them; (d) testing of 

research findings in service agencies before 

application. 

In general, these recommendations have been 

carried forward. After careful study of 

DHEW, a total of 12 research centers in 

mental retardation (MRRC's) were established under P.L. 88-164, Title I, Part A, 

with federally obligated construction funds of 

$27 million and with core support through 

NICHD reaching approximately $6 million 

annually. 

The question of ethical safeguards on the 

use of human subjects, including retarded 

persons, has been intensively reviewed and 

debated. Standards have been promulgated by 

HEW, by AAMD, NARC and other bodies. 

The most recent standards approved by the 

Secretary of HEW include policy with 

respect to use of the unborn as well as children 

and adults. 

The issues run deep, and the dual needs of 

effective research and the protection of 

individual rights are complex. The testing of 

research findings in service settings before 

application has not been systematically 

developed, especially in the behavioral research 

area. There have been some errors, excesses, and 

premature applications. 

107 
In general, the Federal expansion of research 

in mental retardation proceeded vigorously 

through the 1960's, but support has shown a 

tendency to level off and to decline since 1970, 

both absolutely and in relation to inflation and to 

total Federal spending. The accomplishments in 

biomedical and behavioral research have been impressive. Applications are beginning to show 

significant results, but the needs to know more 

are still monumental. 

3. Increased Statistical Information 

The Panel recommended that the Federal 

Government develop a comprehensive, 

continuing program for the collection and 

analysis of population statistics on incidence, 

prevalence and personal and socioeconomic 

characteristics of the mentally retarded. Sporadic and fragmentary efforts have been made 

in this direction but they have been (a) lost in the 

continual reorganization of mental retardation 

within HEW, and (b) confounded with the quite 

different process of individual identification and 

tracking of retarded persons. 

The latter issue has raised intensive debate 

regarding rights of privacy which should not 

in any way be allowed to intrude into legitimate 

and necessary statistical data collection. The 

failure to implement this Panel recommendation 

means that there is no comprehensive national 

data base on mental retardation to serve as a 

guide to assess the present and plot the future 

effort. 

4. Research on Learning Processes and 

Education 

The Panel recommended (a) establishment 

of a National Institute of Learning, 

(b) augmented research budgets for exceptional children in the U.S. Office of Education. 

A National Institute of Education (not 

"Learning" specifically) was established in 

August 1972 (P.L. 92-318) and charged with 

basic educational research and demonstrations. 

This institute was very differently constituted 

from the basic research operations the Panel had 

discussed; it was never substantially supported, it 

did not restore the previously phased out 

Cooperative Research in Education of P.L. 88-531, 

and there is no evidence that NIE research has 

been "directed to the needs of the mentally retarded." 

A number of programs under P.L. 88-164 

and 91-230 have provided research funding in 

education of the handicapped, but it has been far 

less than needed. Here, as in the biomedical 

fields, to yield significant results, research must 

be supported with long-range vision. 

5. Scientific Communication 

The Panel recommended organization by 

DHEW of a number of highly specialized 

international conferences on research 

problems underlying mental retardation. 

Thirteen specific topics in biomedical and 

sixteen in behavioral and social research were 

suggested. A few such conferences have been 

held, notably under NICHD auspices, and there 

has been participation in conferences, congresses 

and conventions held under other auspices. On 

the whole, Federal initiative in this area has not 

be conspicuous. 

6. Manpower and Training 

Nine specific recommendations were made 

to assist in overcoming severe shortages of trained 

scientists and specialists in fields relevant to 

mental retardation. These included (a) higher 

education construction and student support; 

(b) increased capacity of the medical 

schools; (c) increased number of postdoctoral fellowships, research and career 

professorships and other awards in fields 

relevant to mental retardation; (d) exploration 

of use of nonmedical personnel in medical 

care; (e) emphasis on medical research training 

in medical education comparable to Ph. D. 

training; (f) research specialists in education 

of the mentally retarded; (g) research training 

support in basic behavioral and social sciences 

for careers in mental retardation; (h) 

opportunities for cross- disciplinary research 

training; (i) increased research in process of 

scientific creativity. 

108 
The period of the 1960's saw a continuing 

upsurge in the training of scientific personnel, 

higher education construction and student 

support. This was swiftly reversed in the late 

sixties and early seventies as the production of 

specialists in many scientific and scholarly 

fields appeared to be outstripping demand; the 

war-baby population wave crested in the 

colleges and receded; and the entire pattern of 

post-secondary education entered a period of 

reevaluation and change. 

Medical school construction was heavily 

supported for three years, then grants were 

replaced by loans, and expansion of medical 

education slowed. Doctoral and post-doctoral 

training programs in the basic medical and 

social sciences (supported by NIH, NIMH, 

NDEA and NSF) have been severely 

curtailed. Research funds in the sciences are 

being redirected from basic research to target 

problems and applications. The overall 

production of scientific manpower in the 1970's 

has been confused and uncertain, with policies 

determined in part by social changes. 

The rapid growth of technology in medical 

and other fields has greatly stimulated the 

training of "paraprofessionals" and technical 

personnel. 

The most significant Federal response to the 

manpower recommendations of the Panel was 

in the creation of University Affiliated Facilities 

in mental retardation (UAFs). The concept of 

UAFs was recommended in the chapter on 

Organization of Services and embodied in P.L. 

88-164 Section B of Title I, with a mission to 

develop personnel training programs at any and 

all levels, on an inter-disciplinary basis, and to 

conduct research and provide exemplary service 

as an adjunct to such training. 

Through 1971, more than $38 million in 

construction funding was provided to 20 

centers; an additional 10 or 12 UAFs have 

developed without construction funds. Inadequate 

financial support has come from Maternal and 

Child Health, Developmental Disabilities and 

Bureau of Education for the Handicapped 

grant funds. The UAFs have provided some 

training in medical, behavioral and educational 

research, but the end-product emphasis in both 

training and research has been service delivery. 

There has been some training of education 

research specialists under the Education 

Professions Development Act, but the emphasis 

in that case also is on training for service. 

Although psychologists have had a continuing 

interest in the study of creativity, the subject 

has had little research funding. 

In summary, significant advancements were 

made during the 1960's in providing facilities 

construction and student support for 

multidisciplinary research in mental retardation. 

There have been inadequate and diminishing funds 

for operations, students, and research, and little 

effective development of centralized research and 

statistical information in mental retardation. 

Prevention 

The basic assumption on which the Panel 

recommended preventive measures was that "the 

inherent high cost of mental retardation that is 

currently borne by individuals, families and 

society warrants maximum effort for 

prevention." 

Additional assumptions were (1) the full 

utilization of present knowledge on a broad 

front could reduce the incidence by half; (2) 

such application would at the same time reduce 

the incidence and impact of other health and 

social disabilities; (3) isolated attack on 

individual biological causes will prevent only a 

small fraction of cases; (4) substantial prevention 

requires dealing with fundamental social, 

cultural and economic factors with which 

virtually all specific causes of retardation are 

interwoven. 

109 
1. Biological and Medical Preventive Measures 

Six recommendations were directed toward 

biological causes of retardation: (a) concentration 

of all Federal, State and local health agencies 

on high-risk populations in which the 

prevalence of mental retardation is heavily 

concentrated; (b) collaboration by groups of 

States on development of regional genetic 

counseling services and diagnostic laboratories 

for complex diagnostic procedures; (c) 

evaluation and assessment by FDA, NIH and 

the pharmaceutical industry of the effects of 

pharmaceuticals on fetus, infant and young 

child; (d) PHS expand its program for 

radiological health protection, with emphasis on 

assistance to States in X-ray control; (e) hospital 

accreditation include adoption of all known 

procedures to prevent prenatal, neonatal 

defect and brain damage; (f) PHS expand 

accident prevention research and prevention 

programs. 

The first legislation in the Kennedy program 

amended Sec. 508 of Title V, SSA, to provide 

increased funds for maternity and infant care 

(MIC) to reduce infant mortality and morbidity. 

Subsequently, funding increased from $4.7 

million in 1964 to $47 2 million in 1973. Project 

funds allocated to States placed emphasis on highrisk populations. 

Genetics counseling has developed rapidly, but 

seldom on a regional basis. Approximately 300 

genetic counseling services are in operation, but 

are unevenly distributed and far from uniform in 

quality. New technologies have made possible 

centralized systems of complex diagnostic analysis 

which have added enormously to costs but have 

not yet settled into fully appropriate procedures. 

NIH has supported joint investigations by FDA 

and industry to establish guidelines and preclinical rules for testing drugs including effects 

on pregnant women, the fetus and infants. FDA 

has also advanced performance standards in 

radiation control; all States in 1973 with the 

exception of Wyoming had comprehensive 

radiation control laws. 

Prevention procedures are included in the 

accreditation standards of the Joint Commission on 

Accreditation of Hospitals. 

Accident prevention has concentrated on 

highway traffic safety. The Division of Accident 

Prevention of the Public Health Service, which 

had a broad-range program, including the 

general field of childhood safety, was placed 

under the Consumer Product Safety Commission.

2. Preventive Measures to Correct Adverse 

Environmental Conditions 

The four recommendations under this heading 

include: (a) Community programs to modify 

conditions of deprivation in opportunity to learn 

and other environmental factors adverse to 

intellectual development; (b) provision of 

appropriate emotional support and stimulation 

for infants in hospital and residential 

facilities, with such provision included in 

criteria for accreditation; (c) concerted effort 

through a variety of named means to offset 

effects of deprivation on children and youth; 

(d) a domestic Peace Corps to be organized to 

provide stimulus to volunteer groups. 

The Economic Opportunity Act of 1964 was a 

major attempt to improve the general economic 

conditions which produce deprivation of 

learning opportunity and other environmental 

depressants. This involved community action 

programs of wide variety in low socioeconomic 

areas, and included VISTA, a form of 

"domestic peace corps" which provided for 

voluntary work in programs for retarded and 

developmentally disabled persons. 

110 
Project Headstart had an impact on the 

learning experience of pre-school children, and 

specified after 1972 that 10% of children 

enrolled must be handicapped. The ParentChild Centers were a downward extension of 

Headstart; and Project Homestart was begun in 

1973, in 16 communities. 

The BEH Early Education Program, 

started in 1969, consists of model demonstration 

pre-school programs for handicapped children. 

From 1969 to 1973 the number of projects 

increased from 24 to 100, funding from $0.9 to 

$12 million, but the percentage of retarded 

involved decreased from 19.6% to 9%. 

The Joint Commission on Accreditation of 

Hospitals' Residential Standards (1971) 

requires emotional support and infant stimulation 

procedures. Child health services in general 

have increased in terms of State maternal and 

child health clinics, as well as 56 MIC projects 

throughout the country, while Medicaid 

increases medical services available to lowincome and institutional residents including 

children. The Child Welfare program has 

fluctuated. The number of recipients increased 

more than 50% between 1963 and 1969, but 

dropped back to slightly more than the 1963 

number in 1973, while funding increased from 

$21 million to an approximately steady $46 million 

from 1968 on. 

In summary, the efforts to prevent mental 

retardation have touched on some of the root 

problems embedded in health care, 

developmental stimulation and quality of life in 

risk populations. But the massive problem 

requires sustained effort to eliminate the sources 

of deprivation associated not only with mental 

retardation but with other medical and social ills 

as well. 

Clinical and Social Services 

For those who are retarded, developmental 

and supportive services must be provided. The 

assumptions in this section focus on a life for the 

handicapped person as near as possible to that 

of a non-handicapped person. It is also assumed 

that the generally available service systems are the 

most effective and economic service for retarded 

people; that "special" services should be resorted 

to only when necessary; that barriers to normative 

services should be broken down and those services 

made sufficiently flexible to accommodate 

handicapped persons. 

A general principle is invoked by the 

Panel as a basis for service delivery: the 

continuum of care "describes the selection, 

blending and use, in proper sequence and 

relationship, of the medical, educational and 

social services required by a retarded person to 

minimize his disability at every point in his 

lifespan." Social responsibility involves assuring 

that an individual receives the services he 

needs when he needs them. 

The recommendations on clinical and social 

services fall under the following heads: 

1. Detection, Evaluation and Medical Care 

The key to effective amelioration is in early 

identification, evaluation and continuous child 

health supervision. This, the report states, 

requires (a) examination and screening tests 

for early detection of abnormalities as part of 

regular and routine service of child health clinics; 

(b) every person suspected of mental retardation 

should have the benefit of expert comprehensive 

diagnosis and evaluation; this requires the 

Children's Bureau, and Public Health Service, 

State health departments and school systems to 

improve and extend clinical services for the 

retarded; (c) all present restrictions barring 

retarded children with physical handicaps 

from State crippled children's programs 

should be lifted, and their physical and 

emotional needs attended to; additional 

earmarked funds should be made available by 

raising the statutory limits on maternal and child 

health and crippled children sections of Title V. 

111 
Response to these recommendations is seen in 

the increase of routine screening tests, with 

90% of infants now being screened for PKU, 

for example; in increased number of MIC 

projects; mass screening for visual, auditory and 

dental defects; in screening and detection provisions of Medicaid, Title XIX of the Social 

Security Act; in intensive conferences and 

publications on early screening, especially of 

children at developmental risk. 

The further development of MCH clinics 

in the University Affiliated Facilities has 

provided exemplary diagnostic and evaluation 

service, but the example still falls far short of 

the reality of need. Public Welfare amendments 

and P.L. 88-156 required State planning to include 

evaluation services. The number of retarded 

children receiving crippled children's services 

doubled from 1963 to 1969. The physical 

needs of retarded persons are receiving more 

attention, not only under public programs but 

also by private physicians; attention to their 

emotional needs has lagged badly and is only 

beginning to be incorporated in individual 

program planning. Mental health facilities 

continue to play a very small role in service 

provision to retarded people. 

2. The Role of the Family 

No specific recommendations were made 

in this area, but the Panel noted the importance of 

professional sensitivity to family crises in regard 

to a retarded child; the need for outside support 

and homemaker assistance. Also noted were the 

importance of social insurance programs of 

Social Security, especially in the extension to 

the "adult disabled child," and the importance 

of other aspects of public assistance, 

unemployment insurance and social services. 

In viewing this section of the report, the still 

unresolved issues embedded in Federal and State 

welfare programs leave retarded individuals and 

their families at continued high risk. The 

resolution of those issues is critical to the entire 

problem of retardation in terms of the deprived 

social environment in which 85% of its 

prevalence is found. 

3. Cooperative Planning for the Mentally Retarded Child and Adult 

The key to a meaningful continuum of care 

lies in access for each individual to services 

where and when needed. The Panel expressed 

this in the recommendation that there should 

be available in every community a "fixed 

point of referral and information" which 

provides a life consultation service for the 

retarded. 

This recommendation has been a key concept 

in the development of State and community 

planning for mental retardation services. It has 

been variously interpreted and in varying degrees 

implemented in delivery of services. It is 

universally recognized, however, that in 

every community—defined broadly as the 

familiar social environment of everyday life— 

there must be a recognized place where a 

person knows he can go for help. This concept 

has begun to permeate the community approach 

to common problems. Sometimes it is a 

neighborhood center, sometimes an organized 

health clinic, sometimes a "hot-line," a telephone 

number. Whatever the form, it is a point of entry into the service system of the community. 

It is likely that the form conceived by the 

Panel is now too limited in structure, too 

unadaptable to all the kinds of communities in 

which people live, too reflective of middleclass ways of seeking assistance. Certainly, the 

concept is central, and just as certainly it remains 

unrealized for many communities; too many 

people still do not know where to go, whom to 

talk with, when a child seems not to be getting 

along the way he should. 

4. Recreational Opportunities 

"Pilot studies of recreational programs and 

resources for the retarded should be conducted and the results used as a basis for planning 

recreational and leisure time provisions for 

retarded children and adults." 

No really concerted effort has been made 

to attack this problem, but many community 

recreation programs now include retarded 

people in their sports programs. 

112 
The Youth-ARC's have been especially 

influential in initiating recreational activities. 

Activity centers for those unable to participate 

or excluded from community activities are 

increasing. The Kennedy Foundation is 

especially active in this field with the "Special 

Olympics" and the "Families Play to Grow" 

programs. Federal and State resources are active 

in this area only where the Developmental Disabilities Councils have given priority to activity 

centers. As a rule, recreational activities have 

developed far more under HIP institutional 

efforts than in the open community. 

5. Religion 

The Panel made no recommendations here 

but noted the role of religion as a legitimate 

and meaningful part of the retarded person's life. 

Initiative in this matter is left to the various 

religious organizations which have, in fact, 

developed extensive programs adapted to the 

needs of retarded persons in the community or 

in institutional settings. 

Education, Vocational Rehabilitation, and 

Training 

The Panel conceives of education, rehabilitation, training and employment services as a 

natural continuum. Educational opportunity 

means not only "to be in school," but also to 

learn how to adapt to adult life in society. "The 

true goal of education and rehabilitation of the 

handicapped is to help every individual to make 

the most of his potential for participation in all 

the affairs of our society, including work, no 

matter how great or small his potential may be." 

Nanda Ward Haynes, CEC 

1. Education 

In 1962 about 250,000 or 20% of the nation's 

school-age retarded children were enrolled in 

public school special education programs, double 

the number in 1948 but only a beginning toward 

the necessary goal. The Panel made the 

following recommendations: (a) U.S. Office of 

Education should exercise national leadership 

in developing educational services for retarded 

children; (b) special education services must 

be extended and improved to provide appropriate opportunities for all retarded children 

by means of enriched preschool opportunities, 

State and local community leadership, special 

education instructional materials centers in State 

departments or universities, specialized 

classroom services for all mentally retarded 

children, and educational diagnosis and 

evaluation providing early detection and 

appropriate placement; (c) manpower training 

programs to provide an additional 55,000 

special education teachers; (d) methods 

developed for more effective training and use 

of personnel teaching retarded pupils; (e) 

national standards of teacher qualification 

and reciprocal certification agreements. 

Since 1957 the USOE has assumed increasing 

leadership in all aspects of education of 

handicapped individuals, including those who 

are mentally retarded. A long series of 

enactments from P.L. 85-926 in 1957 to 93-380 

of 1974 have authorized programs and provided 

funds to improve and expand educational 

services to all mentally retarded children. 

Especially important are the Elementary and 

Secondary Education Act of 1965 (P.L. 89-

10) which provided for culturally deprived 

children (Title I) and educational innovation 

(Title III); ESEA Amendments of 1965 (P.L.

89-313) which extended benefits of Title I to 

institutional children; the Vocational 

Education Act Amendments of 1968 (P.L. 90-

576) requiring that 10% of Voc. Ed. funds be 

used for the handicapped; the Education 

Professions Development Act (EPDA) of 

1969 (P.L. 90-35) which provided training; the 

Education of the Handicapped Act of 1970 

(P.L. 91-230) which provided State formula 

113 
grants for the handicapped, regional resource 

centers, early childhood project grants, special 

education instructional materials centers, and 

instructional media for the handicapped. 

The Economic Opportunity Act 

Amendments of 1972 (P.L. 92-424) established 

policies requiring that handicapped children 

constitute 10% of those served in Head Start. 

Finally, in response to "right to education" 

litigation, the Education Amendments of 1974 

(P.L. 93-380), and 1975 (P.L. 94-142), in 

addition to authorizing expanded assistance to 

the States for special education, required the 

States "to establish a goal of providing full 

educational opportunities for all handicapped 

and to submit by August, 1974, a detailed plan 

and timetable for achieving that goal." The 

Amendments also required the States "to take 

positive steps to insure that every child's 

educational interests are safeguarded through 

individualized program planning, procedural 

safeguards and adaptation to cultural and 

language differences." 

Despite the impressive Congressional action 

taken in both authorization and appropriation of 

funds, the goal of adequate educational 

opportunity for all retarded children is a long 

way from complete fulfillment. BEH, which 

has achieved a respectable stature in the 

Office of Education, estimated in 1973 that 

60% of retarded children were still in need of 

services. Many of the authorized developments, 

e.g., regional resource centers, preschool 

stimulation projects, are only in initial phases. 

New concepts of instruction, new models of 

organization and administration of programs, 

new systems of personnel training are all in the 

making. 

Some efforts have failed and require 

thorough rethinking. One of these is in the 

identification, evaluation, and placement of 

mildly retarded children, where minority 

culture, language differences, and effects of 

deprivation make traditional assessment 

procedures inadequate. There is a renewed 

move towards experimental "mainstreaming," 

or retaining handicapped children in regular 

settings, but with resource personnel to provide 

for special needs. 

The recommendations of the Panel have been 

substantially carried forward, but special 

education is still on the frontier. 

2. Vocational Rehabilitation and Training 

Eleven recommendations were made by the 

Panel in this area. The two basic ones call for 

(a) increased Federal-State matched funds to 

produce increased numbers of rehabilitated 

individuals including the mentally retarded, 

and (b) strengthened counseling systems in 

schools and employment offices to provide 

prevocational counseling and evaluation, job 

placement assistance and post placement 

counseling. 

In order to implement the necessary vocational service system, the Panel also recommended: (c) a Federal program to 

support construction, equipping and initial 

staffing of sheltered workshops and other rehabilitation facilities; (d) extension of sheltered work opportunities beyond the 

traditional workshop settings; (e) exploration 

of methods of providing recreational and 

therapeutic activity centers to serve severely 

handicapped adults; (f) coordination of education and vocational rehabilitation services, 

through use of national, State and local 

committees; (g) augmentation of staffs of 

State and private rehabilitation agencies with 

specialists in mental retardation ; (h) 

increase the pool of skilled manpower in rehabilitation of the mentally retarded in 

counseling, workshop operation and research; 

(i) energetic and effective employment 

assistance using all available 

resources for training and placement; (j) 

Labor Department review of its services for 

the mentally retarded to assure appropriate 

attention to priority needs. 

114 
From 1963 through 1973 Federal rehabilitation appropriations have steadily increased, 

rising almost tenfold ($69 million to $610 

million). The number rehabilitated has tripled 

(110,000 to 326,000). The number of MR 

rehabilitated increased eightfold (5,909 to 

45,640), while their percentage increased 

threefold (5.4% to 14%). The MR portion of 

Federal funds increased twenty-three fold 

($3.7 million to $85.4 million). Grant funds for 

improvement and expansion of MR 

rehabilitation facilities increased in 1967 and 

1968 to $450,000 then declined to a steady 

$100,000 annually. 

Construction, equipping and initial staffing of 

sheltered workshops was provided in the 

Vocational Rehabilitation Act Amendments 

of 1965 (Section 12) and has been increasingly 

funded from $122,000 in 1966 to $1.7 million in 

1973. The Small Business Administration has also 

permitted low interest loans to sheltered 

workshops. Under these programs there have 

been innovative work-training centers other than 

the traditional small industrial shop, e.g., 

horticultural projects. NARC, under grants 

from the Department of Labor, has conducted a 

rapidly expanding on-the-job training program 

which trains several thousand workers annually. 

Progress is evident in the development of 

vocational counseling in the schools, the 

addition of MR experts on State rehabilitation 

staffs, and the development of improved 

services to retarded persons by Federal 

employment offices. There is concern for the 

slow transition of vocational rehabilitation 

agencies from policies and practices appropriate 

to physical handicaps to those appropriate to 

mental retardation. Changing regulations on 

eligibility, length of evaluation, length of 

training, and follow-up after placement have all 

shifted from emphasizing rapidity of "closure" 

to effectiveness of service. 

While coordination of education and vocational training has improved, there are still 

large gaps. 

Three University Rehabilitation Research 

and Training Centers, in Oregon, Wisconsin 

and Texas train manpower in vocational 

rehabilitation, with emphasis on mental retardation. 

Employment opportunity for retarded adults 

has increased, led by the example of the Federal 

Government which, in 1975 reported a total of 

7,500 retarded Federal employees between 1963 

and 1973. Projects in Industry, under RSA, 

began in 1970 to provide funding for training 

projects in private industry. 

There are still important problems to be 

resolved, including negative employer attitudes 

when applicants are identified as retarded, the 

issue of minimum-wage/wagesubsidy for belowstandard workers, the availability of jobs during 

periods of unemployment, the proper followup of clients after placement, the development 

of fully appropriate types of activity centers 

for the non-working adult. 

Vocational Education programs have failed 

to meet substantially the needs of the retarded, 

despite provisions of the Vocational Education 

Amendments of 1968 to apply 10% of Federal 

and State matching funds to give special 

education students "ready access" to the 

program. The problem is due largely to a 

failure of the States to conform and of the 

Federal agency to require accountability. 

Residential Care 

The Panel noted with great concern the 

continued increase in the number of retarded 

persons in large State institutions, the crowded 

conditions, long waiting lists, inferior standards 

of care and treatment and the insufficiency of 

trained and competent staff. 

115
Assumptions underlying this section were: 

(1) the predominance of the large, isolated, 

custodial institutions as the treatment of choice for 

the mentally retarded is an accident of history; 

(2) the challenge to State institutions is how to 

accelerate the change from large isolated 

facilities to smaller units close to the homes of 

"patients" and to the health, education, and social 

resources of the community; (3) institutional 

settings are only one facet in the continuum of 

care, which should embrace a variety of 

alternative residential possibilities responsive to 

individual need; (4) only certain retarded 

individuals can benefit from the 

comprehensive 24-hour care which an 

institution provides; (5) there is no place for 

institutional care that is merely custodial—its 

reason for existence must lie in the treatment 

and services it provides. 

1. The Role of Residential Care 

The principal recommendation (a) is that 

institutional care should be restricted to those 

whose specific needs can be best met by this 

type of service. Institutions are but one facet in a 

continuum of care. 

The (b) objectives for residential care are 

commended to the attention of boards of private 

institutions, appropriate authorities of the States 

and the Council of State Governments. 

Institutions should: 

 be basically therapeutic in character and 

emphasis, and closely linked to appropriate 

medical, educational and welfare programs of 

the community; 

 have some unique quality or potential that 

can be developed for the benefit of the entire 

field—and not merely custodial; 

 provide diagnosis and evaluation before 

admission, followed by prompt treatment; 

 develop institutional outreach to assist both 

patient and family before admissions and to 

facilitate visits after admission; 

 provide flexible admission, release and 

out-patient policies; 

 eliminate or ameliorate as many symptoms as 

possible in order to achieve independent, 

semi-independent or sheltered extramural life 

in accordance with potential; 

 provide regular and frequent evaluation so 

that no child or adult will remain in residential 

care longer than necessary; 

 insure that if and when the child or adult is 

ready to return to community, adequate 

supportive resources and services will be 

available, including a variety of community 

residential options; 

 provide continuity of service responsibility 

in transfer from institution to community; 

 conduct clinical and institutional research as a 

part of the program when size and resources 

justify it; 

 view the future of residential care in the 

context of State and regional needs; 

 establish universal application of the Interstate 

Compact.

The past dozen years have seen the beginnings 

of significant changes in the character and 

occupancy of residential institutions for 

retarded persons. Recommendation (a) has led 

to the objective stated by President Nixon to 

PCMR, to reduce the occupancy of institutions by 

one-third. The Developmental Disabilities program is aimed principally toward the development of community resources to support 

retarded persons leaving the institutions, or 

electing not to enter. 

The popularity of the "deinstitutionalization" movement has, however, led in some 

cases to a hasty discharge of institutional residents 

into an unprepared community. The general 

effectiveness of community program 

development is reflected in the fact that 

beginning in 1967 institutional populations have 

shown a decreasing trend for the first time in a 

hundred years. 

116 
The objectives stated in recommendation (b) 

have to do with the quality of institutional 

services. Improvements have come about from 

a number of sources: (1) by the enlightened 

actions of State boards and legislatures; (2) by 

consumer pressure extending from advisory 

boards of parents and relatives to class actions 

based on constitutional rights; (3) Hospital 

Improvement Programs/Hospital In-Service 

Training grant funds for upgrading institutional 

program and staff; (4) by accreditation standards 

promulgated by the Joint Commission on 

Accreditation of Hospitals (AC/FMR, 

Residential Standards, 1971); (5) by the 

requirements of Title XX of the Social 

Security Act for eligibility of residents to 

receive Medicaid support. 

2. The Pattern of the Future 

The Panel noted that the keystone to the 

development of effective services for retarded 

persons is comprehensive planning that takes 

into account State and local requirements as 

well as professional and voluntary community 

resources. The States are responsible for that 

planning, said the report. The Panel made three 

fundamental recommendations on the subject: 

 Upon presentation of a plan meeting 

criteria established by the Secretary of 

Health, Education, and Welfare, it is 

recommended that project grants be 

provided to the State institutions to 

upgrade the quality of residential services 

by (1) augmenting and strengthening 

programs of residential care through 

demonstrations and pilot projects and other 

means designed to establish permanent 

improvement and change in institutional 

programs; (2) support of in-service 

training and education; and (3) support of 

research projects in institutional settings. 

 The Secretary of Health, Education, and 

Welfare should review the requirements 

for construction of essential facilities for 

the mentally retarded under public and 

non-profit auspices, including facilities 

which are not necessarily under direct 

medical supervision. 

 Local communities, in cooperation with 

Federal and State agencies, should 

undertake the development of community 

services for the retarded. These services 

should be developed in coordination with 

the State comprehensive plan for the 

retarded, and plans for them should be 

integrated with those for the construction 

and improvement of services in residential 

facilities. 

The passage of P.L. 88-156 in 1963 set in 

motion the comprehensive State planning 

process which was the key to the three 

recommendations. All States submitted and 

refined plans over a two-year period. 

The remainder of recommendation (a) was 

provided through appropriations for Hospitals 

Improvement Programs (HIP) and Hospital 

In-Service Training (HIST) which, for 

institutions for the retarded began at $3.3 million 

in 1964, peaked at $9.1 million in 1969, reduced to 

$4.5 million in 1973, for a ten-year total of $72.5 

million. 

P.L. 88-164 authorized mental retardation 

facilities construction, for which $90.3 million 

was appropriated and allotted to the States from 

1965 to 1970. Staffing support was delayed and 

meager, greatly impeding the growth and 

functioning of community services. 

The Developmental Disabilities Act of 

1971 authorized facilities construction funds for 

which no appropriation was made, but included 

partially appropriated formula grants to the 

States for improvement of services to mentally 

retarded and other developmentally disabled 

persons. Also in DD authorization and 

appropriated funds were amounts for service 

projects in institutions or communities within the 

planning design of the State and under the 

advisement of a State Developmental Disabilities Council. 

117 
The DDSA also provided at long last for 

initial staffing of community mental retardation 

facilities, but the appropriations were meager and 

phased out in only three years. The development 

of Medicaid (SSA Title XX) and the 

Supplemental Security Income (SSI) program 

have provided a system of direct support of 

persons which stimulates the growth of facilities 

through the purchase of service by the 

individual in need. 

The Panel further commented on the size of 

institutions (all new construction should be kept 

small—not over 500 beds) and on private 

institutions which have a role to play in the 

continuum of care. No specific 

recommendations were made in reference to 

these topics; but it may be noted that while 

some States have heeded the warnings as to 

institutional size, others have continued to build 

thousand-bed monuments to inhumanity. 

In summary, the recommendations of the 

Panel on residential care put significant 

processes in motion which will have a 

continuing benefit for retarded persons if the 

momentum of development and change can be 

maintained. 

In the course of a dozen years, the 

movement from huge custodial institutions to 

flexible, developmental community programs 

could only be partial. The concepts of 

community service themselves have been 

evolving during this period, as have the 

perspectives on varieties of residential facilities. 

The institutional population has only just begun 

to recede, and despite qualitative improvements, 

most institutional programs remain grossly below 

standard. Nor have community services 

reached the stage of development where the 

final process of transition is even in sight. 

The Law and the Mentally Retarded 

The Panel's discussion of the role of law in a 

retarded person's life reflects the historical 

background in which law had been exercised 

primarily in the control of retarded individuals 

and only secondarily in their protection. When 

the main body of relevant statutory law was 

designed during the early part of the century, 

Constitutional and civil rights of retarded persons 

had been largely disregarded. Retarded persons 

in the criminal courts had been handled under 

the "rules of insanity" with regard to criminal 

responsibility or ability to stand trial. 

Establishment of mental deficiency was 

sufficient to yield life-long custodial 

commitment without considering questions of 

fact or law attending the case. Further, the Panel's 

report notes, the law tended to be rigid, 

recognizing no gradations in the conditions and 

behavioral characteristics of retarded persons. 

The recommendations of the Panel consequently are directed toward ensuring that 

legal intervention is a last rather than a first 

resort, that the protection of the individual is of 

primary consideration, that the procedures of 

the courts be modernized with respect to the 

new knowledge regarding mental retardation and 

that the constitutional and statutory rights of retarded citizens be defended. The Panel had no 

intimation that America was entering upon a 

period of intense civil rights litigation and 

legislation activity when the retarded persons 

themselves or their advocates would enter the 

courts to reverse the unlawful controls 

previously exercised upon them. 

1. The Mentally Retarded Under Civil Law 

The Panel recommended that: 

 each State should establish a protective 

service for the retarded in an appropriate 

State agency; 

 guardianship of the person and 

guardianship of property should be 

differentiated and provided separately, as 

need might indicate; 

 forms of limited guardianship should be 

developed to safeguard limited incapacities, 

plenary guardianship being reserved for the 

more severely and comprehensively disabled; 

 the courts should have the means of 

competent professional clinical evaluation, 

involving medicine, psychology, education 

and social work; 

118 
 the need for continuation of guardianship 

should be periodically reviewed, especially as 

the ward reaches majority age; and that 

guardians of preference be family members, or 

that family members participate in naming of 

guardians or successors; 

 no special legal action should be required 

when parent or guardian enters a child into a 

residential facility; 

 judicial hearing should be required in all 

cases of involuntary commitment; 

 there should be judicial review every two 

years of the need for continued institutional care 

for all retarded adults, and especially at the time 

of reaching majority age. 

In the past decade there has been extensive 

discussion on all the elements of these 

recommendations. Only one or two States have 

established a formal State protective agency. 

Guardianship laws have not been extensively 

modified to recognize degrees and gradations of 

need; Louisiana, New York and California have 

provided for limited guardianship. Generally, 

however, guardianship of persons and of 

property are distinguished by law. There has been a 

movement, initiated in Nebraska, to develop 

programs of "citizen advocacy" providing 

retarded individuals with non-legal personal 

assistance in obtaining appropriate services, 

satisfying their needs and protecting their interests; 

at present writing some form of personal 

advocacy has been launched in eleven States. 

Most court systems provide for some kind of 

clinical evaluation available to the court, but there 

is great variation in scope and professional 

qualifications among jurisdictions. Some States 

require periodic reports by guardians, though 

judicial review is seldom required. In most States 

parents or other close relatives are the preferred 

personal guardians. 

Contrary to the Panel recommendation, current 

thinking favors a hearing on all cases of 

institutional placement to determine whether 

such placement is, in fact, the best alternative 

even when placement is initiated by parents. 

Most jurisdictions have due process safeguards 

over involuntary commitment. Only a few States 

(e.g., New York and Massachusetts) require periodic review. 

In general, under civil law, there has been only 

slow and uneven movement toward adequate 

protective services and procedures for mentally 

retarded citizens. In particular, the statutes 

governing competency are confused, unclear, 

contradictory and constitutionally questionable.*

2. The Mentally Retarded Under Criminal Law 

The possibility of doing justice, and thus 

fulfilling the function of the law, turns upon at 

least two conditions (a) correct appreciation of 

facts—situations, acts, circumstances—and their 

meaning; and (b) a suitable range of disposition 

possibilities. Failing the first, justice is truly 

blind; failing the second, it is impotent. Justice is 

blind if it does not inquire into the significance of 

mental retardation as a "circumstance," and 

impotent if it has no dispositional variants suited 

to the difference it finds. (p. 153) 

On this foundation, the Panel made five 

recommendations: (a) confessions to crime by 

mentally retarded persons should be accepted 

only with the greatest caution—if at all; (b) 

procedures resulting in automatic commitment 

to a mental institution by a retarded defendant 

found to be incompetent should be reviewed; 

(c) regardless of competency findings, 

questions on the facts or the law should be 

heard, rather than a defense based only on 

mental disease or defect precluding 

responsibility; (d) rules of criminal 

responsibility should be designed, interpreted 

and administered to reflect contemporary 

knowledge of the nature and effects of mental 

retardation; (e) new approaches to treatment of 

mentally retarded criminal defendants—

whether not criminally responsible or convicted. 

Most of these matters have been subjects of 

discussion and conferences, especially at the 

PCMR-sponsored National Conference on the 

Mentally Retarded Citizen and the Law held at 

Ohio State University in May 1973. A 

substantive report of this conference has been 

published.** Some court precedents have been set 

and some are now in process of trial or appeal, but 

it must be said that full consideration of the 

retarded person in the criminal justice system is 

still in a backward state. 

*Cf. Allen, R. C., Ferster, E. Z. and Weihofen, H.: 

Mental Impairment and Legal Incompetency, 

Prentice Hall, Inc., 1968. 

**Kindred, M., Cohen, J., Penrod, D., Shaffer, T. 

The Mentally Retarded Citizen and the Law. New 

York: The Free Press, 1976. 

119 
3. Continuing Reform 

The Panel recommends that the whole body 

of law that relates to the condition of mental 

retardation (whether specifically or by 

implication) should be reviewed from time to 

time in each jurisdiction. This is an extremely 

bland recommendation in the light of events in 

the legal field that have transpired during the past 

ten years. Studies of the State laws relating to 

mental retardation by Richard Allen and 

others* reveal the appallingly archaic, confused, 

inconsistent condition of the statutes. 

A wave of litigation, both individual and 

class action suits, has already caused a series of 

Federal and State reforms which mark the 

beginning of extensive review of legislative 

regulations and judicial procedures relating to 

the retarded. These cases, numbering more than 

130 since 1970, have established principles of 

legal rights relating to equal educational 

opportunity, educational classification, 

labeling and placement, community services 

and right to treatment in the least restrictive 

environment, peonage and involuntary servitude, restrictive zoning ordinances, access to 

buildings and transportation systems, 

commitment practices and access to medical 

services.** 

This is an "age of litigation" in which 

appeal to the courts is becoming common 

practice. The courts are being utilized by 

retarded citizens and their advocates in the absence 

of statutory law implementing the Constitutional 

guarantees of due process and equal protection 

of the laws. The Panel's recommendations on law 

and the mentally retarded have not been 

substantially carried out, as evidenced by the 

frequent necessity to sue for justice. 

*Op. cit., also Lindeman and McIntyre, The 

Mentally Disabled and the Law, University of 

Chicago Press, 1962. 

**PCMR: Compendium of Law Suits 

Establishing the Legal Rights of Mentally 

Retarded Citizens, 1974. 

Public Awareness 

Among those who work closely with the 

problems of mental retardation, it is common 

knowledge that (a) the general public is illinformed on the nature of mental retardation and 

the existing programs and resources relating to it 

and (b) those responsible for preventing or 

ameliorating mental retardation do not 

adequately inform the public of what they are 

doing. Public awareness and understanding, 

therefore, require special efforts by agencies in 

strategic positions to take on this task. 

The Panel made the following recommendations: (a) an expanded program of information and education on mental 

retardation is essential for the general public 

and pertinent professional organizations; (b) 

information on mental retardation should be 

distributed in a variety of forms to national 

and local groups; (c) films for lay audiences 

should be prepared on the general story of 

mental retardation and needs of the retarded, 

on special education, vocational training and 

recreation; (d) filmstrips depicting the 

highlights of the Panel's recommendations 

should be produced; (e) the Planning and 

Coordinating Committee (of the Panel) should 

develop and conduct a national program of 

public education and interpretation. 

An immediate follow-up was launched by 

(a) NARC through all of its State and local 

units; (b) the Office of the Special Assistant to 

the President on Mental Retardation under Dr. 

Stafford Warren; and (c) the Advertising 

Council in a three-year campaign supported by 

NARC, the Kennedy Foundation, and HEW. 

120 
In the MR Planning Amendments of 1964 

and 1965 provision was made to develop public 

awareness programs within each State plan, 

but it is only in the last two or three years that 

such programs have begun to be implemented 

effectively in a substantial number of States. 

Since its establishment in 1966, the 

President's Committee on Mental Retardation has 

placed public information and public education 

in the forefront of its activities. PCMR has 

distributed over six million of its own and others' 

publications, and has promoted every relevant 

subject in the mental retardation field through national TV, radio and print ad campaigns. 

Newspaper and magazine articles and speeches 

also play a major role in the Committee's 

information program. 

OMRC (now Office for Handicapped 

Individuals) produces and distributes a variety of 

informative materials to a large mailing list. 

NARC has a well developed public information program, with collections of 

publications, films, tapes, etc., and annual public 

awareness campaigns using radio and TV spots, 

poster child, celebrity sponsors, and other means 

of reaching the public. 

The commercial television and film industry 

has found mental retardation a good vehicle for 

program material, both story and documentary. In 

many instances, NARC or PCMR or other expert 

source is involved in consultation. 

In general, the recommendations of the Panel 

on public information are being fully carried out. 

However, the recommendations were general 

and of a fairly simple nature. The problem is by 

no means simple or quickly accomplished. There 

are deeply persisting stereotypes of mental 

retardation, negative attitudes of long standing, 

outworn and distorted information which are 

difficult to modify and eradicate. Special 

interests, competing for dollars and for public 

attention complicate the situation. The task of 

informing the public is never completed 

because every two or three years there is a new 

public to inform. 

Organization of Services—Planning 

and Coordination 

The Panel saw clearly the need to articulate 

the entire "plan of action" into a cohesive, 

flexible, dynamic and effective attack on the 

total problem. To this end it made 18 

recommendations with regard to organization, 

planning and coordination under four headings. 

1. State Planning and Organization of 

Services 

The basic recommendation is (a) the Secretary 

of Health, Education, and Welfare should be 

authorized to make grants to the States for 

comprehensive planning in mental retardation. 

This was the substance of P.L. 88-156 and 

Planning Amendments of 1964 and 1965. This law 

resulted in comprehensive plans being submitted 

by 53 jurisdictions, on an appropriation of $2.2 

million. 

Ancillary to the planning authority, the Panel 

recommended that (b) the governor of each 

State and his staff review the array of major 

services outlined in this report, identify the 

branch of State government which is, or should 

be discharging each responsibility and its 

performance noted; and assess the extent to 

which each function should be strengthened; 

(c) each State should establish an 

interdepartmental mechanism for joint 

planning and coordination; (d) within each 

division of State government having a 

responsible concern, an appropriately 

designated administrative agent should be 

established for development and coordination of 

services to the retarded. 

The States variously carried out these 

recommendations in the process of planning and 

subsequent development. A wide variety of plans 

and modes of organization emerged, with a 

common characteristic of moving toward a 

coordination of human services programs. With 

the passage of the DDS Act of 1970, State 

councils are now formed to deal with 

developmental disabilities. 

121 
2. Organization of Local and Area Services 

The Panel discussed at length the importance of 

developing and coordinating a balanced array 

of service elements to constitute the "continuum 

of care," utilizing area centers, dispersal of 

services to provide universal access, with 

centralized local, regional or State-local 

coordination. The Panel recommended that (a) 

grant-making bodies, public and private, 

foster cooperation and give priority to 

support of promising joint enterprises. This 

was especially directed to the cooperation of 

service facilities and academic institutions in 

development of research, training and service 

delivery. Attention was also directed to the use 

of interstate and regional cooperative 

arrangements such as the Southern Regional 

Education Board and Western Interstate 

Commission on Higher Education. 

In order to promote exemplary development 

of research and service delivery of the highest 

quality the Panel recommended that (b) 

programs of interdisciplinary training 

centered on models of service should be 

developed with Federal, State and private 

support; and (c) when pilot demonstrations have 

proved successful, the tested models of 

management, coordinated with training and 

research, should be created in each of the 

region served by DHEW. 

The answer to the above recommendations 

was in the development of University Affiliated 

Facilities under construction authority of Part B 

of Title I in P.L. 88-164, with supporting funds 

in part from Maternal and Child Health and 

later in part from Developmental Disabilities, 

supplemented by local funds and combinations of 

support from many other grant sources. 

The UAF program has been an extremely 

important development, and one which holds 

high promise for the interdisciplinary approach to 

the diversified needs for trained manpower, 

applications of new knowledge to service 

delivery and the demonstration of exemplary 

constellations of service delivery. The program 

still has not reached maximum effectiveness, 

and lacks funds, compounded by the financial 

problems of the universities themselves, the 

retrenchment of former training and research 

programs and the uneven distribution of the 

UAF programs throughout the country. 

3. The Federal Role in Comprehensive Planning for the Retarded 

Under the Constitutional mandate "to 

promote the general welfare," the Federal 

Government must take the initiative and 

exercise leadership in a partnership with the 

States, local governments and voluntary 

nongovernmental organizations on major 

matters of general concern. One such general 

concern is mental retardation, which is in some 

measure bound up with most Federal 

departments, but most intimately with Health, 

Education, and Welfare. That Department must, 

therefore, assume major responsibility for 

leadership and action at the Federal level. The 

Panel report includes eleven recommendations 

on the Federal role: 

Federal agencies, especially departments of 

State, Defense, Justice and Labor should 

identify activities affecting the retarded and 

seek consultation, as required, from DHEW. 

The only compilation of Federal programs 

for the retarded covering all departments was 

made by PCMR in 1972, as a result of a 

presidential directive. Cooperation from the 

departments has usually rested on the initiative 

of others, with PCMR as the principal 

coordinator. 

DHEW should assess its capabilities to 

stimulate and support relevant components 

of a comprehensive national program related to mental retardation. 

HEW has had a committee on mental 

retardation since 1954, which formed the 

nucleus of a statutory Office for Handicapped 

Individuals established in 1974. The committee 

served as the coordinating 

122
agency within HEW and has had impact on 

many facets of HEW's MR programs. It was 

especially active immediately following the 

publication of the Panel report in preparing initial 

legislation. 

An ad hoc advisory group representative of 

recipient colleges and universities should assist in 

identifying any self-defeating features of Federal 

training assistance programs, and to suggest 

measures which might contribute to improving 

the supply and utilization of manpower in 

mental retardation. 

In 1963 a representative group assisted the Office 

of Education in setting up procedures for its 

manpower training program. More recently the 

Association of UAFs has been concerned with the 

problems of manpower training programs and has 

formed a task force to chart a future development 

of university affiliated facilities. 

The Department should improve its resources for 

collecting, coordinating and distributing 

quantitative data on the mentally retarded and 

their specific program needs. 

This badly needed statistical resource has been 

lacking although often discussed as a central 

responsibility. Two factors have contributed to 

the failure to establish such a data base: the frequent 

reorganization within the department involving 

transfers of function and responsibility—e.g., the 

MR Biometrics program—and the confusion of a 

statistical information service with an 

individualized roster of retarded persons. The 

roster has become highly controversial as a threat 

to the rights of privacy, confidentiality and freedom of choice. The statistical information service, 

shorn of individual identifying elements, is badly 

needed and represents a major failure in the 

Federal effort. 

The Department should give special attention to 

the use of professional and citizen advisory 

groups in relation to its program on mental 

retardation. 

Many citizen advisory groups have been used in 

relation to component agency programs, such as 

the National Advisory Council to the Division 

of Developmental Disabilities. Peer review panels 

are used in the evaluation of grant applications and 

advisory groups in the formulation of regulations. 

Inclusion of consumer representatives has been an 

increasing feature of advisory bodies. The 

President's Committee on Mental Retardation is a 

citizen advisory body to the President, and includes 

ex officio the heads of most heavily involved 

executive departments. 

The Department should consistently reinforce 

the principle and practice of comprehensive 

planning and coordination at the regional, State 

and local levels. 

This principle was exemplified by the MR 

Planning Legislation of 1963, 1964, 1965 and the 

Developmental Disabilities Act of 1970. 

The Department should extend and develop 

the principle of joint review and programming, 

and when feasible joint financing of grants-inaid by the several DHEW agencies when this 

approach will result in a more comprehensive and 

unified program. 

There have been some scattered attempts in this 

area. 

The Department's increasing emphasis on 

comprehensive departmental planning should 

be reflected at the regional level. 

The functions of the Department have been (a) 

increasingly regionalized, (b) requiring 

increasingly precise planning in terms of annual 

objectives and timetables, reflected at regional 

levels; but decentralization has also produced 

problems in cases where national consistency is 

essential. 

It is recommended that the Secretary invite 

each governor to designate several officers in 

each State with direct major responsibility for 

programs for the retarded to represent the 

State in periodic meetings with the 

Departmental Committee. 

Only one such invitation was issued, leading to 

the White House Conference on Mental 

Retardation in 1963. 

The Department should extend and improve its 

efforts to interpret its own and the Nation's 

activities on behalf of the retarded. 

The current Office for Handicapped Individuals 

(originally the Departmental Committee) 

interprets and reports on DHEW's activities on 

behalf of retarded and other handicapped persons. 

PCMR also performs this function in relation to 

the Federal Government as a whole. 

The Department should improve the 

coordination of the international aspect of 

programs for the retarded.

123 
The Maternal and Child Health program 

and Vocational Rehabilitation have for many 

years conducted mental retardation programs 

abroad under P.L. 480. Since 1965 an 

improved international effort (especially 

through PCMR), concerning retarded 

persons, has involved conferences, seminars, 

symposia, and collaborative projects in Latin 

America, Canada, the Pacific basin, and 

Europe. 

To summarize the outcome of the 

recommendations of the Proposed Program 

for National Action to Combat Mental Retardation is to recognize that a movement of 

extraordinary proportions has taken place in 

the 13 years since the Panel submitted its 

report to President Kennedy. It is by no 

means a perfect score, but compared to 

many other blue-ribbon committees and the 

fate of their recommendations, it is an 

outstanding record. 

As a matter of interest rather than of 

scientific accuracy, a tabulation was made 

of each recommendation in each section of 

the report and rated on a scale of accomplishment (See Table 1). The judgments are 

in part subjective, but as a broad generalization, the ratings show significant 

achievement on about 62% of the 

recommendations, little or no achievement 

on about 38%. The best record is shown in 

Public Awareness, the poorest in Law (the 

chief developments in law were not anticipated in the recommendations).

TABLE 1.-Follow-up of President's Panel Report, 1963-73 

[Summary of accomplishment by recommendation] 

Recom

mendations 

Fully and

adequately

met 

Substantially 

met in 

appropriate 

direction 

Partially met, 

then dropped 

or reduced 

Minimal 

action in 

unclear 

direction 

No action, 

still valid 

No action, no 

longer 

desirable 

Research, science manpower...........

Number 

18 

Number 

0 

Percent

0 

Number 

8 

Percent 

44.4 

Number 

7 

Percent 

38.9 

Number 

2 

Percent 

11.1 

Number 

1 

Percent 

5.6 

Number 

0 

Percent

0 

Grouped..................................... 15 83.3 3 16.7

Prevention....................................... 10 2 20.0 5 50.0 2 20.0 1 10.0 0 0 0 0 

Grouped ............................... 9 90.0 1 10.0

Clinical, social services ................ 7 0 0 4 57.1 0 0 2 28.6 1 14.3 0 0 

Grouped................................ 4 57.1 3 42.9

Education, VR training.................... 23 0 0 11 47.8 4 17.4 7 30.4 1 4.3 0 0 

Grouped..................................... 15 65.2 8 34.8

Residential services ........................ 16 0 0 2 12.5 3 18.75 9 56.25 2 12.5 0 0 

Grouped................................ 5 31.3 11 68.7

Law and MR.................................. 14 0 0 0 0 0 0 8 57.1 4 28.5 2 14.4

Grouped................................ 0 0 14 100.0

Public awareness............................. 6 3 50.0 3 50.0 0 0 0 0 0 0 0 0 

Grouped................................ 6 100.0 0 0 

Organization, planning, coordinator .... 18 1 5.6 8 44.4 6 33.3 1 5.6 0 0 2 11.2

Grouped................................ 15 83.3 3 16.7

Total ..................................... 112 6 5.3 41 37.5 22 18.7 30 26.8 9 8.0 4 3.4

Total grouped.................. *69* 61.6 **43 38.4

*Positive. 

**Negative. 

124 
The tabulations do not distinguish the 

recommendations by priority or importance, but it is possible to say that with a 

few notable exceptions the most urgent 

recommendations were marked by very 

substantial outcomes. It is especially important to note those recommendations on 

which initial steps were taken, only to have a 

reduction or termination before the 

recommendation was significantly fulfilled. 

The White House 

President Kennedy receives the 1962 Panel Report from Chairman 

Leonard Mayo (standing at the President's right), and other Panel 

members, including Dr. George Tarjan (seated, third from right), 

Eunice Kennedy Shriver (standing, center), Dr. Elizabeth Boggs (at 

Mayo's right), and Dr. Henry Viscardi (seated, far right). 

125 
126 
Chapter 7 

PCMR and Its Role 

By the mid 1960's, mental retardation, like 

Cinderella, had come out of hiding. And she was 

being courted, not only because of the glamour 

acquired by acceptance in high places, but also 

because she suddenly had a dowry. 

Because of President Kennedy's leadership, 

funds and activities in the mental retardation field 

increased so rapidly in a relatively short time that 

some overview of the governmental and private 

efforts became a necessity. 

The needed perspective could not come from 

government sources alone; neither could it come 

from the private sector alone. Clearly, a 

combination of the two would be the most 

effective means for mobilizing and coordinating 

the wide variety of interests and moneys now 

starting to flow into mental retardation. 

To meld the forces into a representative alliance 

of government and private citizens that would act as 

the "watchman at the gates," President Lyndon B. 

Johnson established the President's Committee on 

Mental Retardation in 1966. 

The President signed Executive Order 11280 in 

a White House ceremony on May 11 of that year. 

The Secretary of Health, Education, and Welfare is 

named as Chairman, and the Secretary of Labor 

and the Director of the Office of Economic Opportunity are listed as ex-officio members. 

The main body of the Committee includes 21 

citizen members, appointed by the President for 

staggered three-year terms. 

The Executive Order sets forth this mandate: 

The Committee shall provide such advice and 

assistance in the area of mental retardation as the 

President may from time to time request, 

including assistance with respect to: 

 evaluation of the adequacy of the national 

effort to combat mental retardation; 

 coordination of activities of Federal agencies 

in the mental retardation field; 

 provision of adequate liaison between such 

Federal activities and related activities of State 

and local governments, foundations, and other 

private organizations; and 

 development of such information, designed 

for dissemination to the general public, as will 

tend to reduce the incidence of mental 

retardation and ameliorate its effects. 

The Committee shall mobilize support for mental 

retardation activities by meeting with, and 

providing information for, appropriate 

professional organizations and groups broadly 

representative of the general public. 

The Committee shall make such reports or 

recommendations to the President concerning 

mental retardation as he may require or the 

Committee may deem appropriate. Such reports 

shall be made at least once annually.

The Department of Health, Education, and 

Welfare is designated as the agency "which 

principally shall provide the Committee with 

necessary administrative services and facilities." 

The post of Executive Director was also 

established in the Order. The first to hold that 

position was David B. Ray, Jr., former 

Superintendent of the Arkansas Children's 

Colony, Public Relations Director of the 

Kennedy Foundation and consultant to the White 

House Office of the Special Assistant to the 

President on Mental Retardation. 

A little over a month after the Executive 

Order was issued, the President's Committee on 

Mental Retardation (PCMR) held its first 

meeting. In a very real sense, that meeting set the 

tone for the years to follow. 

"You are now committed," said HEW 

Secretary John W. Gardner, the first PCMR 

Chairman, following the swearing in of the 

original Committee members on June 22, 1966. 

127 
Chairman Gardner challenged the members to 

"look at the whole field and try to see the relative 

priorities" and to help design the strategy for 

progress in the mental retardation field. 

"A committee of this sort," he said, "is a 

very effective bridge between the governmental 

world and the non-governmental. You are a 

means of pulling together the great range of 

resources with which we now conduct our public 

business. This is a role you can play very 

effectively because you are looking in both 

directions and are not caught in the machinery of administration." 

He spelled out other functions of the 

Committee—to criticize, stimulate, raise 

questions, bring in information from the 

grassroots, always providing the perspective that 

every large undertaking needs. 

At that first meeting, members defined the 

broad goals that PCMR has held since that time: 

prevention of both environmentally and 

biomedically caused mental retardation; early 

recognition and treatment of the condition; and 

education, rehabilitation and training, with increased 

public awareness as the key to realization of the 

goals. 

In fact, public awareness has been the fabric on 

which PCMR has woven its strategy throughout 

the years. Even before President Johnson 

appointed the first members, there was a mailing 

address of President's Committee on Mental 

Retardation to distribute The Mentally 

Retarded—Their New Hope. The booklet was 

offered in a saturation campaign of radio, television and print ads conducted by the Advertising 

Council, and sponsored by the Joseph P. 

Kennedy, Jr. Foundation, HEW, and NARC. 

Approximately 2 million were distributed in a 

two-year period. 

With the mandate from the Executive Order 

clearly defined, the Committee began to design its 

strategy soon after the initial meeting. A steering 

committee was named, with. Dr. Robert A. 

Aldrich, Director of the National Institute of 

Child Health and Human Development, as 

Chairman. 

Speakers from the top levels of Government and 

professional and voluntary organizations briefed 

Committee members on their respective spheres 

of action in the field of mental retardation and 

indicated further needs. 

Forums 

At the same time that the Committee was 

being briefed by national leaders, it began laying 

plans to ascertain the state of the nation in mental 

retardation from the grassroots—the State and 

local planners and programmers. A whirlwind 

series of meetings, forums and site visits got underway in 1967 that was to take members to New 

Orleans in January, Omaha in February, Seattle in 

June and Boston in November. In March of 1968, 

they went to Austin, Texas. Each of the forums 

heard from participants representing a wide geographical area. 

Following the first year of traveling 

throughout this country, a joint U.S.-Canadian 

conference on manpower needs in mental 

retardation programs was held in Banff, Alberta, 

Canada. PCMR published the proceedings in a 

booklet titled Manpower and Mental 

Retardation: An Exploration of the Issues. 

The First Caribbean Mental Retardation 

Conference was another joint venture, with the 

meeting held in Jamaica. The report was titled 

Mental Retardation in the Caribbean—Needs, 

Resources, Approaches. 

Reaching out on a wider scope, the First 

Pacific Forum on Mental Retardation was held in 

Honolulu in September 1971, under PCMR's 

auspices, with assistance from several cosponsors. 

Participants came from Australia, New Zealand, 

Japan, Hong Kong and from throughout the 

South Pacific. Its report was published in 1972. 

128 
After an interlude of a few years, the forums 

resumed in 1973 in Kansas City, Missouri, followed 

in 1974 by forums in Philadelphia, Denver and 

San Francisco. Atlanta was next on the agenda, in 

the fall of 1975, followed by one in Providence, 

Rhode Island early in 1976. 

The forums serve not only as information 

channels to the Committee, but also as a means of 

communication within States, regions and local 

agencies. Although PCMR is the catalyst, 

coordinating agencies are usually HEW 

Regional Offices and the State or local 

Association for Retarded Citizens. 

So communication is established on all levels 

and across governmental and private lines as well. 

The testimony presented at these forums on 

progress and problems in the mental retardation 

field has formed the base on which PCMR has 

built many of its recommendations to the 

President in the Committee's annual reports. 

The forums, however, have been but one of 

the strategies used by the Committee to meet the 

terms of its Executive mandate to combat mental 

retardation on all fronts. 

Conferences 

PCMR has sponsored, cosponsored and 

participated in countless conferences that touch on 

every one of the broad range of subjects that 

make up the complex entity known as mental 

retardation, usually spearheaded by a Committee 

task group and assigned staff member. 

PCMR members from the start have taken an 

active role in initiating Committee involvement. 

Most of them already had a vital interest and 

relevant background in the field of mental 

retardation. Assigned by choice to task groups 

dealing with specific aspects of the problem, the 

members have utilized to the full the talents of 

professional and support staff in promoting, 

arranging, advocating, developing and otherwise 

moving on the assigned tasks: Prevention, 

Public Information, Community Services, Citizenship and the Rights of Retarded Persons, and 

International Affairs. The array of tasks has 

changed from year to year in detail, but the main 

issues have had a continuity that has given the 

Committee an increasingly solid feeling of 

coming to grips with substantial issues presenting a 

continuing challenge. 

In conjunction with each major conference, the 

Committee publishes a report on the proceedings, to 

increase the awareness of both professional and 

general audiences.* In addition, PCMR prepares 

TV and radio messages, films and magazine articles, 

intensifying the message and broadening the 

impact. Committee members and staff also 

frequently appear as speakers on targeted subjects. 

The PCMR conference on problems of 

education of children in the inner city, held in 

1969, broke new ground in this area. The 

subsequent report, The Six-Hour Retarded Child, 

has been widely used not only in this country but 

in many other countries as well, for its insight on 

the educational needs of the environmentally 

deprived child, functioning poorly in the hours of 

school but adapting well within his own familiar 

world. 

Because of the interest generated by the inner-city 

education conference, PCMR held a follow-up 

meeting two years later on placement of children 

in special education programs for the mentally 

retarded, which dealt with mislabeling. A Very 

Special Child was published as a result of this 

conference. 

*See PCMR Publications List for currently 

available reports. 

129 
The Report of the International Symposium 

on Volunteers was PCMR's publication on a 

cosponsored conference with the International 

League of Societies for the Mentally 

Handicapped, held in 1971. 

In the same year, the Committee joined in the 

support of a New England Seminar on retarded 

youth and the law enforcement process. The 

Naive Offender was the publication that resulted. 

This conference was an early indication of 

PCMR's interest in the legal rights of retarded 

persons. The Committee has since held numerous 

meetings and several major conferences on the 

subject, involving people on all levels of law 

enforcement and judicial process. 

These explorations led to the first national 

conference on the mentally retarded citizen and the 

law, held at Ohio State University in 1973. From 

that conference have come two publications, 

Silent Minority, which has had wide acceptance 

and use by the general public, and a book, The 

Mentally Retarded Citizen and the Law, 

containing professional papers, published 

commercially in 1976 by the Free Press, a division 

of Macmillan Publishing Co., Inc., New York. 

Major Concerns 

The human and legal rights of retarded people 

were the theme of PCMR's first film, "A 

Little Slow." Also, April 1974 was 

proclaimed Legal Rights for Retarded Citizens 

Month by Governors of approximately 20 States, 

to the accompaniment of a widespread publicity 

campaign conducted by the Committee. 

Another major and continuing concern is 

institutional living for mentally retarded children 

and adults. One of the Committee's most 

influential documents on the subject was 

Changing Patterns in Residential Services for 

the Mentally Retarded, a monograph that 

describes the best and the worst in residential settings, 

and spells out the principle of normalization, or 

living a life as close to normal as possible for retarded persons. It was published in 1969. A new 

edition reflecting changes in institutional 

programs during the past five years has been 

published under PCMR's auspices. 

The Committee has worked closely with 

superintendents of public and private residential 

facilities over the years in a concerted effort to 

improve living conditions and training for retarded 

persons. 

Among the publications PCMR has issued as a 

result of this cooperation are Residential Services 

for the Mentally Retarded: An Action Policy 

Proposal, in 1970; Residential Programming: 

Position Statements by the National Association 

of Superintendents of Public Residential 

Facilities for the Mentally Retarded, and 

Current Trends and Status of Public Residential 

Services for the Mentally Retarded, both in 

1974. 

The main thrust of deinstitutionalization, however, 

is not just to improve the institutions—or just to 

move retarded people out—but to provide quality 

alternatives to institutions. Toward this end, the 

Committee has been deeply involved in promoting 

community living for retarded persons. 

In addition to radio, TV and print messages 

over a number of years, PCMR has held countless 

meetings on the subject and has published such 

booklets as People Live in Houses and New 

Neighbors, both issued in 1975. 

PCMR also has assisted in conferences and 

publications on architecture for group living 

arrangements. A recent Committee booklet is 

New Environments for Retarded People. 

Deinstitutionalization is now one of the top 

priorities of the Department of Health, Education, 

and Welfare. 

The best means of avoiding institutionalization is 

treatment in infancy and early childhood for highrisk babies, and training for both child and parents. 

Consequently, the President's Committee has 

130 
consistently emphasized early detection and 

treatment of the condition. A national conference on 

screening was held in 1972, followed by the 

definitive monograph, Screening and 

Assessment of Children at Developmental 

Risk 

In 1974, PCMR cosponsored a conference on 

early intervention with high-risk infants and 

children. A summary, highlighting the parents' 

role, was recently published by the Committee, 

titled What Are We Waiting For? Papers 

presented at the conference, edited by the 

National Institute of Child Health and Human 

Development, will be published commercially in 

book form, under the title Intervention 

Strategies for High Risk Infants and Young 

Children. 

Other publications of the Committee related to 

the subject of community living and community 

acceptance include: These, Too Must Be Equal, on 

employment of retarded people, published 

jointly with the President's Committee on 

Employment of the Handicapped; 

Transportation and the Mentally Retarded; 

Activity Centers for Retarded Adults; Delivery 

of Services to Mentally Retarded Children and 

Adults in Five States and Citizen Advocacy. 

On this subject, as well as every other sphere 

of PCMR activity, there is close and continuing 

contact with relevant governmental and private 

agencies. 

The Committee in 1975 contracted for a Gallup 

Poll on attitudes of the general public toward 

retarded people, especially in reference to their 

living and working in the community. The results 

showed far more acceptance and understanding 

than was indicated by a similar poll conducted in 

1970. A summary of studies of public attitudes 

toward retarded people was published by PCMR in 

1972, but there are evidences, in addition to the 

Gallup poll, of further changes taking place, 

especially with the accelerated movement toward 

new residential living alternatives for retarded 

people in the community. 

In the field of biomedical prevention of 

retardation, PCMR has long advocated improved 

prenatal care and maternal and child care, along 

with preconception genetic counseling for highrisk couples, family planning—especially for 

women under 18 and over 35—and prenatal 

detection of disorders through amniocentesis. A 

predominance of the Committee's public service 

announcements on radio and TV and in print 

have been designed to educate the public to the best 

conditions for producing healthy children. 

One pamphlet in PCMR's Professional Papers 

series is Malnutrition, Learning and Intelligence, 

by Herbert G. Birch, pointing out the effects of 

malnutrition on a child's learning ability. 

PCMR was instrumental in establishing the 

Indian Education for Health Committee, designed 

to serve retarded children and adults on 

reservations more effectively through a closer 

liaison between the Department of the Interior's 

Bureau of Indian Affairs and HEW's Indian Health 

Service. The Secretary of the Interior, Rogers C.B. 

Morton, and the Secretary of HEW, Elliot L. 

Richardson, jointly announced formation of the 

Committee in August 1972. 

Studies 

The Committee has commissioned a number of 

studies in the mental retardation field, foremost of 

which is a major work titled The Economics of 

Mental Retardation, by Ronald Conley, a 

landmark book published by the Johns Hopkins 

University Press, Baltimore, in 1973. 

Another study, not published, but widely 

circulated, was a master technical plan for a 

national mental retardation information and 

resource center, prepared for the Committee in 

1969. The findings and recommendations were a 

contributing factor in the establishment of Closer 

Look, a national mental retardation information 

and referral service, funded by the Bureau of 

Education for the Handicapped. 

131 
PCMR also supported the publication in 1971 of 

the International Directory of Mental 

Retardation Resources. A new edition is now 

being planned. 

Besides taking part in many international 

conferences in this and other hemispheres, PCMR has 

established contact with mental retardation 

professionals in practically every country in the 

world, in an on-going exchange of ideas and 

information. In 1975 the Committee sponsored the 

Second Pan American Congress on Mental 

Retardation, held in Panama. 

Beginning early in the life of the Committee, 

experts in every aspect of mental retardation have 

been brought in to inform members and staff of the 

latest developments in their respective fields. Often 

these briefings are in the form of small conferences or retreats. Selected papers have been 

published over the years as professional papers. 

Among these is Experimental Studies of 

Memory in the Mentally Retarded, by John 

Belmont. 

Reports 

The major annual publication of the President's 

Committee is its report to the President and to the 

nation, as required in the Executive Order. 

Starting in 1967, there have now been nine 

annual reports, presented to three Presidents. Each 

one presents, in varying forms, current information 

and major trends in the mental retardation field, frequently recommending action when the 

Committee feels it is needed. 

In response to many inquiries on the nature of the 

Committee, a booklet was prepared to explain the 

Committee's role: PCMR Is For People. There is 

also a periodic PCMR Message, reporting on 

news of Committee action and newsworthy 

events in the field. To keep public information 

people up to date on the subject, PCMR 

publishes PI-MR, which is also a newsletter. For 

the professional and general public, news 

clippings on mental retardation are culled and 

issued four times a year. 

The most widely distributed PCMR pamphlet 

is Hello World!, designed to give the general public 

information about mentally retarded people, causes 

of the condition, and means of prevention. Almost 

3 million have been distributed since its first printing 

in 1968. 

Fulfilling another section of its Executive 

Order, "coordination of activities of Federal 

agencies in the mental retardation field," the 

Committee conducted an exhaustive review of 

Federal departments and agencies in 1972. This 

survey stimulated action by some agencies, while 

uncovering the potential of others. The findings of 

the review were published in Federal Programs 

for the Retarded, A Review and Evaluation. 

New Executive Order 

Reinforcing these efforts, President Richard 

Nixon issued a new Executive Order (Executive 

Order 11776) on March 28, 1974, broadening the 

Committee's membership and responsibilities. 

Although the functions of the Committee remain 

basically unchanged, the section on cooperation by 

other agencies is made stronger: 

Sec. 4. Cooperation by other agencies. To assist 

the Committee in providing advice to the 

President, Federal departments and agencies 

requested to do so by the Committee shall 

designate liaison officers with the Committee. 

Such officers shall, on request by the Committee, 

and to the extent permitted by law, provide it with 

information on department and agency programs 

which do contribute to or which could contribute 

to achievement of the President's goals in the 

field of mental retardation. 

In addition to the original number of 21 

citizen members, and the former ex-officio 

members, the new Order adds the Attorney 

132 
General, the Secretary of Housing and Urban 

Development, the Director of ACTION, and 

the Director of Community Services 

Administration who replaces the Director of the 

Office of Economic Opportunity. 

In October 1975, President Gerald Ford, in a 

meeting with the Committee at the White House, 

strongly reaffirmed the national commitment in 

the field of mental retardation, in an official 

statement released by the White House. 

At the request of the Committee, the President 

also issued a proclamation for Immunization 

Action Week, calling for renewed efforts to 

immunize every American child against 

diseases for which vaccines are available. 

The principal efforts of members and staff in 

1974 and 1975 have been directed toward 

producing a major report to the President and to 

the nation, in a series of publications titled Century 

of Decision. The series reviews the past and current 

state of the mental retardation field, and looks to 

the future up to the year 2000. This book is part of 

that series. 

The Committee has served three Presidents: 

Lyndon B. Johnson, Richard M. Nixon, and 

Gerald R. Ford. Six Secretaries of HEW have 

been its Chairmen: John W. Gardner, Wilbur J. 

Cohen, Robert H. Finch, Elliot L. Richardson, 

Caspar W. Weinberger, and David Mathews. 

Three Committee members have served as Vice 

Chairmen: Robert A. Aldrich, Clair W. 

Burgener, and N. Lorraine Beebe. And there 

have been three Executive Directors: David B. 

Ray, Jr., Joseph H. Douglass, and Fred J.

Krause, who is currently in that post. 

Members 

The Committee numbers among its past and 

present members, pediatricians, psychologists, 

educators; community leaders, economists, 

geneticists, obstetricians, researchers in biomedical 

and the behavioral sciences, specialists in consumer 

affairs, psychiatrists, businessmen, journalists, 

management consultants, State program 

administrators, labor leaders, lawyers, Presidential 

assistants, State legislators, youth leaders, and 

prominent national figures. An average of over onethird of the members are parents or grandparents of 

children who are mentally retarded. 

From the beginning, there has existed within the 

Committee the dynamic tension created by strongly 

held, and often opposing points of view. These 

differences have contributed much to the vitality 

of the group. Sometimes discussions result in 

compromise, sometimes in a stalemate, but never in 

stagnation. 

In considering biomedical prevention, for 

example, the Committee in its ever-changing 

complement of members has repeatedly been 

faced with the decision of whether to combat 

congenital disorders broadly and include mental 

retardation as one of the symptoms, or to 

concentrate solely on mental retardation, while 

noting its overlap with other handicaps, such as 

cerebral palsy and epilepsy. 

Those who promote an approach that embraces 

handicaps in a broad sense, hold that mental 

retardation is not an isolated disorder, originating 

from a single cause. Rather, it is a complex 

syndrome of disorders manifested in innumerable 

ways, and stemming from hundreds of causes, 

many not yet identified. 

Cures for congenital retardation, say these 

protagonists, will come from research in 

reproductive biology, nutrition, teratology, 

metabolism, genetics, virology, and other broad 

investigations in the biomedical sciences. 

133
While agreeing with the scientific reality of 

these arguments, many others have advocated 

retaining a unique—but not exclusive—

identification with mental retardation. They point 

out that whenever the all-inclusive term handicap is 

used as the base line, mental retardation tends to 

become submerged and often shortchanged in 

the competition for funds and programs. It is so 

much easier, they argue, to show results in 

orthopedic handicaps, when a leg can be 

straightened or braced, for example, than it is to 

show a rise in IQ or improved social behavior. 

As one of the participants at the Philadelphia 

Forum expressed this situation as it applies to 

services: "We talk about umbrella agencies, but it 

always rains on the retarded. That umbrella just 

doesn't seem to be big enough." 

In the field of prevention, the Committee also 

must consider two very different sources of causal 

agents—the environment and the genes. 

In the poverty-ridden segment of the population, 

which produces the highest incidence of 

retardation, "children inherit the circumstances—

not the chemistry, not the genes, but the 

Office of Child Development 

circumstances—which cause mental retardation," 

as former PCMR member Dr. George Tarjan 

has stated. "The circumstances include poor 

prenatal, perinatal and post-natal care, unwanted 

pregnancies, often illegitimate pregnancies, no 

books, isolation during infancy, unavailable mothers, 

no intellectual stimulation." 

There are equally convincing positions on 

many sides of the question of institutions: Abolish 

them all and concentrate exclusively on 

community living; retain the institutions as 

"training grounds"; phase out the large institutions 

gradually while preparing group homes; preserve 

institutions on a scaled-down model, recognizing 

the rights of retarded people to choose— even if 

they choose institutional living. 

How does such a group reconcile these 

differences? 

How to concentrate on employment of 

retarded people while at the same time focusing on 

the vastly different subject of prevention of 

biological and environmental retardation? How to 

retain the identity with mental retardation while 

recognizing its inseparable relationship to all 

developmental disorders? How to meld a group 

into a cohesive entity when membership is drawn 

from widely divergent experience, training and 

interests, and when it changes one-third of its 

membership every year? 

Such breadth of scope as the Committee must 

encompass, and such diversity of membership has 

proven to be the strength of the Committee. There 

is a built-in guarantee that whenever one interest 

tends to become predominant, there will be strong 

voices raised in behalf of another—and equally 

important—consideration. So there is constant and 

vigorous exchange, and increasing challenge—to 

the benefit of those children yet to be born, as well 

as to those already coping with the condition of 

mental retardation. 

134 
Vice President Hubert Humphrey presents a 

PCMR Special Award to Chairman Wilbur 

Cohen in 1968, Vice Chairman, Dr. 

Robert A. Aldrich, is at right. 

PCMR meets with Chairman Elliot Richardson, in 1972. 

Mrs. Gerald Ford presents a scarf imprinted with the 

Cherokee alphabet to Viola Hovel (center), a Navajo 

student at the Children' Rehabilitation Center, Brimhall, N. 

M. On behalf of PCMR, Miss Hovel presented Mrs. 

Ford with a Navajo rug she had woven, held by PCMR 

Member Robert Collier. Vice Chairman Lorraine Beebe 

and Executive Director Fred Krause accompanied the 

group for the White House visit in 1975. 
Elwyn Institute

Early Childhood Learning Center, El Paso 
Chapter 8 

The Change of an Image 

As we review the past from the vantage 

point of 1975, it may be informative to 

compare articles of belief which guided 

practice in the early part of the century 

with those of the latter part of this century. 

These viewpoints were not, of course, 

universal at either date. Some enlightened 

individuals of 1912 spoke the language of 

1975, and we still hear expressions of view 

harking back to 1912. 

1912 1975 

1. Feeblemindedness in 85% of cases is 

inherited as a unitary characteristic, probably as a Mendelian recessive, and is not 

affected by environmental influences. 

1. General intelligence is "polygenic." The 

genetic component of mild retardation is 

inseparable from the debilitating effects of the 

poverty in which it most frequently occurs. 

Abnormal genes or chromosomes which 

generate more severe disorders account for 

5% or less of the incidence of retardation. 

2. Feeblemindedness is accompanied by 

physical debility and propensity to disease 

and early death. There is no obligation to 

prolong artificially or to ameliorate physically the life of a feebleminded individual 

since his condition is incurable and his potential contribution to society is nil. 

2. Medical services have both prolonged 

the lives and reduced the disabilities of 

mentally retarded persons, enabling them to 

become more self-sufficient. 

3. The feebleminded intelligence develops 

at a constant slower rate than the normal and 

levels off at that same proportion of 

normality. Hence the potential can be 

measured reliably at any age above 3 or 4. 

3. The I.Q. is no longer regarded as a 

measure of brain "potential" but as a comparative measure of certain aspects of performance related to intellectual functioning. 

4. Education of feebleminded children is of 

questionable benefit. Either they do not learn, 

or their learning makes them discontent and 

troublesome. At best they should learn useful 

occupations and exercise them under careful 

controls. 

4. A Federal statute mandates appropriate 

educational opportunity for all handicapped 

children, regardless of category or severity. 

The issue now is not whether, but how, 

education of handicapped children can best be 

provided. 

137 
1912 1975 

5. Even though a feebleminded person may 

learn to perform useful manual or mechanical 

work of a routine kind, he (or she) is never 

reliable, and, lacking the "common sense" of a 

normal unskilled workman, cannot maintain 

himself economically in the community. The 

feebleminded person left to himself inevitably 

sinks into poverty and becomes a charge on 

public charity. His work is therefore socially 

useful only under restricted, segregated, and 

controlled conditions. 

5. Follow-up studies show that persons 

identified as mildly retarded in special education 

classes and institutions tend to disappear from 

view as being noticeably different from others 

as adults. They tend, on the whole, to adjust to 

community life, work, marriage and conformity 

to law and moral decency. Moderately and even 

severely retarded individuals can learn to 

contribute as adults to their own economic 

maintenance through training and continued 

support under modified competitive conditions. 

The unpaid institutional labor of residents is 

now seen as "peonage" and a violation of 

constitutional rights. 

6. Feebleminded adults are adult in physique 

only, remaining mentally, morally, and 

emotionally children, therefore lacking in 

judgment, reasoning, moral understanding and 

constraint necessary for acceptable life in 

society. 

6. A retarded child becomes an adult, not only 

in body but as a total person, even though that 

total includes elements of disability. 

Measurement in mental and social age 

equivalents is useful for limited purposes but 

does not give a full picture of the total person, 

who is a product of all his years of experience 

and learning, and who, with various limitations, 

is usually adaptable to life in the social 

community. 

7. The feebleminded are prone to crime and 

delinquency, contributing to a large proportion 

of the criminal population. Since they do not 

distinguish right from wrong, their behavior 

tends to be dominated by primitive anti-social 

drives. 

7. The causes of crime and delinquency are 

complex and baffling, but sociologists and 

criminologists agree that retardation does not 

inherently generate anti-social behavior. Many 

mildly retarded individuals become entangled 

with the law because their retardation is one of 

the products of the environment of poverty and 

deprivation which also yields high rates of 

crime and delinquency. 

8. There is always danger of uncontrollable 

and impulsive brutality and dangerous 

aggressiveness even in the most mild appearing 

mental defectives, especially as they reach 

adult age. They are of essentially violent 

nature. 

8. When aggressive behavior occurs 

among retarded individuals it is usually a product 

of frustrations, just as in persons of higher 

endowment. In many moderate and severe 

cases, destructive, aggressive and self-injurious 

behavior is a feature of the condition, but these 

tendencies are subject to modification by skilled 

treatment. 

138 
1912 1975 

9. The feebleminded do not have the 

normal sensitivities, physically, emotionally, 

morally or esthetically that are characteristics of 

people who can live decently in the 

community. They are less sensitive to pain; 

their emotions are limited to primitive fear, 

rage, and pleasure; they lack moral 

conscience; they have no appreciation of 

beauty or the amenities of normal life. 

9. Mentally retarded persons generally are 

able to enjoy and to express physical, emotional, 

moral and esthetic experience as a crucial part 

of their lives. They do feel pain, both physical 

and emotional. The quality of the environment 

has marked effect on the level of general functioning. A cold, barren, ugly or hostile setting, 

with little social warmth "makes the retarded 

more retarded." Whereas, a bright, colorful, 

socially warm, friendly and supportive 

environment stimulates the human qualities of 

their lives. The potential esthetic creativity of 

many retarded individuals has been demonstrated 

in many arts and crafts. 

10. The feebleminded are devoid of personality, or their personalities are "flat," 

socially insensitive, without sense of self-regard 

or personal worth and therefore inherently 

uninteresting. They do not comprehend their 

own stupidity. 

10. Those who have lived and worked with 

retarded children and adults in positive settings 

find that they have interesting and highly varied 

personalities. They have complex patterns of selfregard, commonly reflecting the negative or 

positive attitudes expressed by other people 

toward them, and their experiences of success or 

failure. The "flatness" of personality seen so 

often in institutional residents is duplicated in 

human situations lacking in social stimulation and 

limited to narrow boundaries of individual 

freedom and expression. 

11. Since the feebleminded lack the above 

qualities, they are essentially irresponsible and 

incompetent; hence the rights enjoyed by 

normal people are inapplicable. At most their 

rights are those of children or perpetual minors 

and even this presumption may be questioned. 

11. Acknowledgement of the inherent 

human and civil rights of retarded persons is now 

upheld by the courts. Basic rights are upheld 

under constitutional guarantees of equal 

protection of the law, and of due process. Codes 

designed to protect the integrity of the person 

and provide for the positive exercise of rights 

are rapidly being promulgated by statute and by 

common practice in mental retardation programs. 

12. Feebleminded persons, especially females, 

have abnormally strong sex drives which they 

are unable to control. They tend, therefore, to 

be degenerate and prolific.

12. The hypersexuality of retarded people is 

pure myth. They may have quite normal sexual 

needs, although these are less manifest the 

more severe the retardation. The expression of 

sexuality is determined, as with intellectually 

normal people, as a product of environmental 

conditioning; its frequency of expression is 

more noticeably deviant in all types of institutional populations because of the lack of 

privacy and the conditions of congregate 

139 
1912 1975 

living. Under comparable conditions, retarded individuals have, on the average, 

lower frequencies of sexual behavior and lower 

reproduction rates than the general population. 

13. As a class the feebleminded are increasing more rapidly than the "intelligent" 

population because the fertility rate of the 

moron is at least double that of the normal 

population and their reproduction has not been 

seriously impeded by proper measures. 

13. The magnified fertility of mentally 

retarded people is another myth that has been 

exploded. If some retarded women give birth to 

many children, they are not alone in that 

exercise, nor is it attributable to their retardation. 

Education in sexual behavior, in the use of 

contraceptives and even the availability of 

abortion, while still controversial, is applicable 

to all women, not alone those who are retarded. 

14. Society has a moral obligation to provide 

charitable protective custody for those 

feebleminded who cannot care for themselves 

or whose families are too poor to provide for 

them, but only to the extent of essential shelter, 

food and minimum clothing. 

14. The obligations of society to those who 

are retarded or in other ways handicapped 

have been vastly extended beyond the scope of 

a "charity," to the legal entitlements of 

citizens. The development of Federal and 

State systems of social security and benefit 

has included mentally retarded persons as a matter 

of right. Basic rights must be secured by 

instrumental rights—e.g., education, treatment, 

protected opportunity—which give access to 

those goods and services and means of selfdevelopment which our society has declared 

to be inherent in citizenship. 

The contrast in these representative 

viewpoints between 1912 and 1975 has been 

dramatically illustrated in the developments 

described in the preceding chapters. In the past 

quarter century, practice has been rapidly 

catching up with modern knowledge, and 

knowledge itself has been expanding rapidly. 

Activity and changing patterns have 

progressed simultaneously on so many fronts 

that it is difficult to assess the totality. 

In the chapters to follow we will attempt 

to delineate the current situation with respect 

to the understanding of mental retardation as a 

disabling condition; the resources of government 

that have been brought to bear on the focal issues; 

the action in the various States to provide a more 

effective continuum of developmental, 

supportive and protective services; the role of 

higher education in training, research and service 

functions; and the economic factors which 

underlie the costs and benefits of the total effort 

to prevent and ameliorate mental retardation at 

the present time. This review sets the stage for 

delineating the issues that should be met and 

resolved in the last quarter of this "century of 

decision" for mental retardation. 

140 
141 

Chapter 9 

What Is Mental 

Retardation? 

Mental retardation presents itself in so many 

forms, degrees, and conditions, from so many 

known and unknown causes, with so many 

questions unanswered, that it is difficult to say 

clearly: these are the people who are retarded 

and this is what they can do, and this what we 

can do for them, and this is how we can eliminate 

the problem. 

To reach into the problem we have to 

know what it is. 

To reach the people who have the problem 

we have to know who they are, how to 

understand them and how to help them. 

Who Are They? 

Mental retardation refers to significantly 

subaverage general intellectual functioning 

existing concurrently with deficits in adaptive 

behavior, and manifested during the developmental period. 

This is the formal definition published by 

the American Association on Mental 

Deficiency in 1973 and widely accepted today. 

It identifies mental retardation with subnormality 

in two behavioral dimensions—intelligence and 

social adaptation—occurring before age 18. The 

definition is a culmination of long debate and 

revision, and may well be modified in the 

future. 

The severely retarded person has an obvious 

incapacity to exercise the expected controls of 

reason and of personal management necessary 

for normal living in any human culture. Left to 

himself, anyone so impaired cannot easily 

survive. The great majority of severely 

retarded individuals also have physical 

characteristics which suggest a central nervous 

system defect as the basis of the 

developmentally retarded behavior. 

In many cases no detectable physical pathology 

accompanies the deficiency of intelligence and 

adaptation. The limited ability to learn, to reason 

and to use "common sense" is often unexplainable. 

Can undetected physical pathology be assumed? 

Further questions arise when we discover that 

milder degrees of intellectual and adaptive 

deficit are commonly associated with particular 

families who have serious social and economic 

problems. Do poor living conditions produce 

mental retardation, or is it the reverse? Or does 

each condition compound the other? Still further, members of certain minority groups tend to 

be highly represented among those identified as 

having intellectual and adaptive problems, 

especially in the school-age years. Is such 

overrepresentation of certain groups a product of 

racial inferiority or of racial and ethnic 

discrimination and disadvantage? 

For a long time, mental retardation (or its 

earlier terms idiocy, feeblemindedness and the 

like), was thought to have much in common with 

insanity, epilepsy, pauperism and social 

depravity, all of which were lumped together. 

And so, a concept of mental deficiency in 

terms of social deviance developed. 

Then, as knowledge advanced, retardation 

was identified with congenital brain defect or 

damage, and assigned to heredity. This 

approach led to redefining mental deficiency in 

medical terms as an organic defect producing 

inadequate behavior. Mild forms of 

intellectual "weakness" became associated with 

forms of immoral behavior and social 

disturbance (the "moral imbecile"), and ascribed 

to more subtle defects of inherited character. 

Legal definitions in terms of social behavior 

began to appear. 

During the 19th and early 20th century 

what we now call "mild" retardation was 

not recognized except as associated with 

disturbed or delinquent behavior. There 

was no simple way of diagnosing the more 

143 
mild or incipient forms of mental retardation 

until the development of psychometrics around 

1910. Then the "IQ" rapidly became a universal 

means, not only of identifying mental 

deficiency, but also of measuring its severity. 

Goddard, in 1910, in applying the new 

techniques of Binet and Simon in the public 

schools, discovered there were ten times as 

many feebleminded as anyone had suspected, and 

promptly coined the term "moron" to cover 

them! Thus a psychometric definition of 

retardation came into being. 

The intelligence test actually measured 

behavioral performance on tasks assumed to be 

characteristic of the growth of children's ability 

at successive ages, but it was interpreted as a 

measure of capacity for intellectual growth and 

therefore as a predictor of future mental status. It 

was assumed to represent an inherent and usually 

inherited condition of the brain with a fixed 

developmental potential. 

Persistent debate over the nature and 

composition of intelligence finally led to an 

operational definition that it is "whatever an 

intelligence test measures." Since intelligence 

measurements are scalar, and degrees on the 

scale were found to correlate rather well with 

other clinical and social evidences of mental 

proficiency, low IQ became virtually the sole 

basis for a diagnosis of mental retardation and 

for its classification at levels of severity from 

"borderline" to "idiot." 

This measurement was especially important in 

schools for which, in fact, the first tests were 

devised by Binet and Simon. IQ tests became the 

standard means of determining school eligibility 

and classification. Intelligence tests also were 

used extensively as sole evidence for 

determining legal competency and institutional 

commitment, as well as the subclassifications of 

institutional populations. The leading authorities, 

Tredgold, Goddard, Porteus, Penrose, Doll, 

Clarke and Clarke, all rejected a strictly 

psychometric definition, but it nevertheless became 

standard practice in diagnosis and classification. 

In the meantime, research in twins, siblings 

and unrelated children had shown that general 

intelligence (i.e., measured IQ) is strongly 

inherited as a polygenic characteristic, following 

a normal Gaussian curve of frequency 

distribution in the general population. A slight 

negative skew was attributable to brain damage 

or genetic mutation. This deviation led to a 

theory of mental retardation which divided it 

into two major groups on the basis of presumed causation. One group consisted of the 

more severely deficient type with brain 

damage or gross genetic anomaly characterized 

by various physical abnormalities and IQ 

generally of 55 or less. The other group 

consisted of the lower portion of the negative 

tail on the normal curve of distribution of 

polygenic intelligence with IQ between 50 or 

55 and 70 or 80 and not otherwise abnormal 

(Kanner, 1957, Zigler, 1967). This theory could 

explain the association of milder forms of 

low intelligence with low socio-economic 

status and its concomitants In other words, the 

less competent tend to sink to the bottom of the 

social scale in a competitive society. The issue 

of cultural bias was raised immediately, 

however, with respect to racial and ethnic 

groups who scored consistently lower on the 

standard tests. 

Evidence began to accumulate which 

generated a variety of additional controversial 

issues. The "constancy of the IQ" was 

questioned on both statistical and experimental 

grounds. The pioneering work of Skeels, 

Skodak, Wellman, and others, in the 1930's (e.g., 

Skeels, et al., 1938) had indicated that measured 

intelligence as well as other observable behavior 

could be substantially modified by drastic 

changes in the social environment of young 

children. 

144 
The quality of the infant's nurture was found 

to have enduring effects of intellectual 

functioning, especially in the absence of 

detectable brain pathology. 

Follow-up studies of persons released from 

institutional care and of those who had been 

identified in school as retarded showed high 

rates of social adaptation, upward mobility and 

even substantial increases in measured 

intelligence in adult years (Cobb, 1972). 

Epidemiological studies have consistently 

shown a "disappearance" of mildly retarded 

persons in the adult years. 

Explanations for these findings could be 

offered without abandoning previous assumptions: Improvement in low IQ scores over 

several repetitions simply exemplifies the 

statistical regression toward the mean, inherent in 

errors of measurement: those who improve 

with stimulation and environmental change 

were never "really" retarded, but exhibit 

"pseudo-retardation" which masks true 

capacity. 

Eventually, evidence converged to show 

that measured intelligence is modifiable within 

limits, that it is not in any case a measure of 

fixed capacity, but of the continuity of a 

developing intellectual and social competence 

in which "nature" and "nurture" are inseparable 

components and individual "growth curves" 

may take a variety of forms and may be 

influenced by many factors. 

A gradual trend developed toward the 

definition of mental retardation in functional 

rather than in structural terms and not tied either 

to specific cause or to unchangeable status. 

There were those, however, who continued to 

find a dual view of retardation more credible 

than a single continuum. 

The Stanford-Binet and similar measures of 

intelligence came to be recognized as 

primarily predictive of school performance of 

an academic or abstract nature requiring language 

skills, and less predictive of other non-verbal 

types of behavior. Consequently, the need 

developed to measure other dimensions of 

behavior. The Army "Beta" test of World 

War I anticipated this development. New tests, 

such as the Wechsler series, combined linguistic 

with non-linguistic performance or quantitative 

elements and yielded a "profile" of distinguishable mental traits. Factor analysis of 

measures of intellectual behavior had demonstrated 

that "intelligence" is not a single trait but a 

composite of many distinguishable functions. 

The measurement of adaptive behavior 

presented even greater difficulty. Such 

measures as the Vineland Social Maturity Scale 

were extensively used but had only a limited 

validity. The Gesell Infant Development Scale, 

the Gunzburg Progress Assessment Chart, and 

subsequently, the AAMD Adaptive Behavior 

Scale all attempted to measure the nonintellectual dimensions of developmental 

adaptation but they lacked the precision and 

reliability of the intelligence measures. 

Consequently, there has been a continuing 

reliance, especially in the schools, on measures 

of IQ alone as the criterion for mental 

retardation. This practice is defended by some 

authorities as legitimate in the absence of better 

measures of adaptive behavior (Conley, 1973.) 

In the meantime the issue of cultural bias 

became an increasingly serious problem. All 

measures of either intelligence or of adaptive 

behavior reflect social learning, hence tend to 

be culture-bound. Their validity, therefore, is 

dependent on the cultural population on which 

the norms have been standardized. No one has 

succeeded in developing a universally applicable "culture-free" test of behavior. Attempts 

to devise "culture-fair" tests which employ 

comparable but culturally different elements 

have as yet failed to yield valid bases of 

comparison. 

Recent studies by Mercer (1973 and 

1974) and others have shown the extent to 

which cultural bias affects the frequency 

with which members of minority cultures 

are labeled "retarded" and assigned to 

145 
special education classes. This is especially true 

when only measures of IQ are used; 

representatives of lower socio-economic and 

of Black, Mexican-American, Puerto Rican, 

Indian and other ethnic groups are identified as 

retarded far out of proportion to their numbers 

in comparison with middle-class Anglo 

children. Social evaluations of such children 

show that a high proportion are not 

significantly impaired in their adaptation in 

non-school environments. 

This discovery has led to a coining of the 

term "Six-Hour Retarded Child," meaning a 

child who is "retarded" during the hours in 

school, but otherwise functions adequately 

(PCMR: The Six-Hour Retarded Child, 

1970). 

Mercer has called such persons who are 

identified in one or two contexts but not in others 

the "situationally retarded," in contrast to the 

"comprehensively retarded," who are 

identified as such in all the contexts in which 

they are evaluated. "Situational retardation" 

occurs by far most frequently in school 

settings, and next most frequently in medical 

settings, and much less frequently in ratings by 

families or neighbors or in settings officially 

responsible for the comprehensively retarded. 

"We conclude," Mercer says, ". . . that the 

situational retardate is primarily the product of 

the labeling process in formal organizations in 

the community, especially the Public 

Schools" (Mercer, 1973). 

The work of Mercer and others has led to 

litigation and legislative action, especially in 

California, limiting the use of IQ tests as the 

sole criterion for labeling and special class 

placement, on the ground that such practices 

systematically penalize minority groups and 

violate their rights to equal educational 

opportunity (Mercer, 1974). 

The present tendency is to accept the 1973 

AAMD formulation by Grossman which 

requires both an IQ of less than 70 and 

substantial failure on a measure of adaptive 

behavior. The requirement of age of onset 

prior to 18 is more open to question and not 

always regarded as critical. The Grossman 

formulation differed from the AAMD 

definition of Heber (1961) principally in 

requiring a criterion of more than two standard 

deviations below the mean, rather than more 

than one s.d., as Heber had proposed. This was 

an extremely important difference because it excluded the "borderline" category which 

accounted for about 13% of the school age 

population! 

Mental retardation, by any of the proposed 

criteria, occurs with varying degrees of 

severity. Many attempts were made in the past 

to classify differences of severity, usually on the 

basis of social adaptation or academic learning 

criteria. Social adaptation criteria distinguished 

borderline feebleminded, moron, imbecile and 

idiot. Academic Criteria distinguished slow 

learner, educable, trainable (with no term 

suggesting learning capability for the still lower 

category). Heber (1958) proposed using neutral 

terms to indicate standard deviation units on the 

continuum of the IQ and any other scales 

employed. This is continued in the Grossman 

(1973) AAMD system to categorize levels of 

intellectual functioning, thus: 

Level of 

Function

Upper 

S.D. 

Limit

Stanford 

Binet IQ/ 

(S.D.=16) 

Wechsler

IQ

(S.D.=15)

Mild —2.0 67-52 69-55 

Moderate —3.0 51-36 54-40

Severe —4.0 35-20 39-25

(extrap.)

Profound —5.0 19 and 

below

24 and 

below

(extrap.)

Note that the borderline category (-1.0 to —2.0 

s.d.) is not included under the definition. 

Mercer has identified still another variable of a significant sociological nature. A 

majority of children who rated low on 

146 
both IQ and adaptive measures by the 

Grossman criteria, and therefore technically 

"retarded," came from homes that did not 

conform to the prevailing cultural pattern of the 

community (socio-culturally nonmodal). This 

group appeared to be identified as retarded more 

because of cultural difference than because of 

inadequate developmental adaptation. Further 

evidence showed that members of this group 

who were identified as retarded children tended 

more than the socio-cultural modal group to 

"disappear" as identifiably retarded on leaving 

school. 

Mental retardation, as an inclusive concept, is 

currently defined in behavioral terms 

involving these essential components: 

intellectual functioning, adaptive behavior 

and age of onset. The causes of retardation are 

irrelevant to the definition, whether they be 

organic, genetic, or environmental. What is 

indicated is that at a given time a person is 

unable to conform to the intellectual and 

adaptive expectations which society sets for 

an individual in relation to his peers. In this 

sense, mental retardation is a reflection of social 

perception aided by a variety of clinical and 

nonclinical techniques of identification. 

Within this broad functional definition, the 

deficits indicated in a diagnosis of mental 

retardation may or may not be permanent and 

irreversible. They may or may not be 

responsive to intervention. They may persist 

only so long as the person remains in a culturally 

ambiguous situation, or at the other extreme, 

they may be of life-long duration. Or perhaps 

only their consequences may be ameliorated in 

greater or lesser degree, not the condition itself. 

Consequently, it is difficult to estimate how 

frequently mental retardation occurs and how 

many retarded people there are. 

How Big Is the Problem? 

The incidence of a disorder refers to the 

frequency of occurrence within a given period 

of time. For example, the incidence of 

smallpox in the United States might be 

expressed as the number of cases in a specific 

year per 100,000 population; the incidence of 

Down's syndrome might be expressed as the 

average number of cases per year per 1,000 live 

births. The purpose of determining incidence is to 

yield information as to the magnitude of the 

problem with a view to its prevention and to 

measure the success of preventive programs. 

The prevalence of a disorder refers to the 

number of cases existing at a specified time in a 

specified population and is usually expressed as a 

percentage of that population or as a whole 

number. Thus, the prevalence of diabetes 

mellitus in the United States might be 

expressed either as the percent or as a whole 

number of the total population known or 

estimated to have the disease in a designated 

year. The prevalence of people crippled from 

poliomyelitis can be expressed as a gradually 

decreasing figure as the result of the greatly 

reduced incidence of the disease following the 

discovery of the vaccines. This shows that 

prevalence is derived from incidence, but 

modified by the extent to which cases disappear 

by death, recovery or inaccessibility. The value 

of prevalence rates is in determining the 

magnitude of the need for care, treatment, 

protection or other services. 

Incidence 

By definition mental retardation can be 

diagnosed only after birth when appropriate 

behavioral indices have developed sufficiently 

for measurement. During gestation the 

identification of certain conditions usually or 

invariably associated with mental retardation 

may be detected and potential retardation 

inferred. 

From the examination of spontaneously 

aborted fetuses, it is estimated that probably 

30 to 50 percent are developmentally 

abnormal and that if they had survived many 

would have been mentally deficient; but this 

information gives us only an incidence of 

fetal mortality and morbidity, with an 

estimate of some types of developmental 

147 
deviation, not an incidence of mental retardation 

itself. 

The mortality rates of the potentially or 

actually retarded vary with severity of defect, which means that many developmentally 

impaired infants die before retardation has been, 

or even can be, determined. Anencephaly, for 

example, is complete failure of brain cortex to 

develop; the infant may be born living and 

exhibit a few responses typical of the neonate, 

but survival is brief. Is such a case to be 

counted as an instance of incipient mental 

retardation or only of anencephaly in particular 

or birth defect in general? 

Since mental retardation manifests itself at 

different ages and under different conditions, 

there is no single time—e.g., at birth or at one 

year of age—when it can be determined of 

every child that he is or ever will be identified 

as mentally retarded. 

Mildly mentally retarded persons are 

most frequently identified, if at all, during 

school years, and frequently disappear as 

recognizably retarded after leaving school. 

The methods of identifying retardation are 

still highly varied; consequently, surveys of 

incidence or prevalence are frequently not 

comparable. 

The degree of subnormality employed as 

criterion for identification as retarded greatly 

affects the count of incidence. For example, the 

1961 AAMD defmition used a criterion of 

standard deviation greater than one (S.B. IQ 

<85). The 1973 version uses a more restricted 

criterion of more than two standard deviations 

(S.B. IQ <68). This change in criterion reduces 

the incidence of mild mental retardation 

automatically by 80%! 

A similar problem is created by the use of 

multiple dimensions rather than a single 

dimension. If only IQ is employed, say at two 

standard deviations (IQ <68 or 70), a global 

incidence of about 3% of school-age 

population will be found (cf. Conley 1973). 

But if a second dimension of impaired adaptive 

behavior is also required, then some with IQ 

below 70 will not be classified mentally 

retarded, and some with low adaptive scores, 

but IQ above 70, will not be classified as 

retarded. This reduces the obtained 

prevalence rate to more nearly 1%. If, 

following Mercer, a still further determination 

is made on the basis of "socio-cultural 

modality" the rate may be still further reduced 

in some heterogeneous communities. 

Taking many such considerations into account, 

Tarjan and others (1973) estimate that 

approximately 3 percent of annual births may be 

expected to "acquire" mental retardation at 

some time in their lives, of which 1.5% would 

be profoundly, 3.5% severely, 6.0% 

moderately and 89% mildly retarded. 

Currently, however, in view of the problems 

of arriving at truly meaningful estimates of the 

incidence of mental retardation on a global basis, 

emphasis for purposes of prevention is placed on 

the incidence from specific known causes. 

Unfortunately, these comprise only a small 

proportion of the total identified as retarded 

(Penrose, 1963; Holmes et al, 1965). The 

following are examples. 

One of the earliest success stories in the 

reduction of the incidence of mental retardation 

was in the case of endemic cretinism. This 

condition occurred rather frequently in 

certain localities, notably some of the Swiss 

alpine valleys. The problem was attacked in the 

second half of the 19th century. The first step 

was to identify the condition with the 

occurrence of goiter, an enlargement of the 

thyroid gland. The next step was to relate this 

condition to the people's diet, and finally to 

the absence of trace iodine in the soil and 

water supply. Iodine was found to be necessary 

to the functioning of the thyroid gland in its 

production of the hormone thyroxin, the 

absence of which can cause cretinism. 

148 
The addition of iodine to table salt resulted 

in reducing mental retardation caused by 

endemic cretinism to near zero. It also led to the 

preventive and therapeutic use of extract of 

thyroxin in the treatment of myxoedema or 

hypothyroidism from other causes (Kanner, 

1957). 

The incidence of Down's syndrome is 

well-documented. It has been identified with a 

specific chromosomal abnormality which 

occurs most frequently as an unpredictable nondisjunction of autosome 21, but infrequently 

also as the Mendelian transmission of a 

translocated portion of autosome 21. The 

former type is definitely related to maternal age, 

occurring at about .33 per thousand live births to 

mothers under age 29 but rising sharply after 

age 35 to a rate of about 25 per thousand to 

women over age 45. 

Overall, the incidence of Down's syndrome is 1 in 600 to 700 live births, with over 

half occurring to women over 35 (Begab, 

1974). The overall incidence of gross 

chromosomal malformation of children born to 

women over 35 is 1 to 2 percent (Lubs and 

Ruddle, 1970; Begab, 1974). The existence of 

the condition is detectable by amniocentesis 

(analysis of a sample of amniotic fluid) 

during pregnancy. 

This knowledge creates the possibility of 

reducing the incidence of Down's syndrome 

substantially by: a) limiting pregnancy after 

age 35; b) detecting the transmissable 

karyotype of translocation in either the male or 

female and limiting reproduction; c) identifying 

the condition early in gestation and 

terminating pregnancy.

A third example of incidence is more 

problematic, but nevertheless significant. From 

prevalence studies, it is known that mild 

retardation is more frequently found in. 

families of low socio-economic status, 

especially in families in which the mother is 

mildly retarded. Heber and others have 

determined that the incidence of retardation in 

such families can be reduced by early 

intervention in providing stimulation to the 

child and home assistance to the mother. 

These examples are sufficient to illustrate 

the values of pursuing the study of incidence to 

identifiable causes or correlative conditions as a 

means of identifying preventive measures (see 

Stein and Susser, 1974; Begab, 1974). Further 

discussion of currently known preventive 

measures appear in later chapters on prevention. 

Prevalence 

The principal problems of obtaining reliable 

prevalence estimates relate to definitions, 

criteria and administrative procedures on the 

one hand, and to the absence of uniform and 

centralized data collection, on the other. The 

former problems are gradually becoming 

resolved. The latter requires vigorous and 

sustained efforts by Federal and State 

governments to establish an effective data bank. 

Prevalence is a product of cumulative 

incidence modified by loss. Loss may be the 

result of death or cure or unaccounted 

disappearance. Whereas measures of incidence 

are important to the problem of prevention, 

measures of prevalence are important to the 

provision of service resources. As prevention 

requires differential classification by identifiable 

cause, so service provision requires differential 

classification by types of need. 

Overall estimates of prevalence of mental 

retardation have been made by two methods: by 

empirical surveys and by selection of a cut-off 

point on a Gaussian curve for the distribution 

of intelligence scores. The latter has led to a 

widely used estimate of 3%, ambiguously 

referring to either incidence or prevalence. This 

would correspond to an IQ level of 

approximately 70 and is, in fact, an average 

general prevalence found in some surveys of 

children (Conley, 1973; Birch et al, 1970). 

However, it is possible to select a 9% 

cutoff at about IQ 80 or 16% at IQ 85, the 

1961 AAMD criterion. All surveys, however, show that mental retardation does not 

represent a simple portion of the lower tail 

on a general Gaussian curve. It is far 

149 
from being normally distributed, varying 

widely by age, by socio-economic and ethnic 

factors. The use of an IQ cut-off alone also 

assumes a one-dimensional definition of mental 

retardation, contrary to the AAMD formula 

and other leading authorities (Tarjan, 1973; 

Mercer, 1973). 

Tarjan (1973, p. 370) points out that the 

estimate of 3% prevalence, or 6 million 

persons in the United States, makes four dubious 

assumptions: "a) the diagnosis of mental 

retardation is based essentially on an IQ below 

70; b) mental retardation is identified in 

infancy; c) the diagnosis does not change; and 

d) the mortality of retarded individuals is 

similar to that of the general population." The 

first assumption ignores the adaptive behavior 

component; the second holds only for a small 

portion, nearly always organically and severely 

impaired; the third holds only as a generality for 

those of IQ below 55, and the fourth holds 

only for the mildly retarded. 

As a statement of potential incidence, 

Tarjan (1973) is probably quite conservative in 

estimating that 3% of all infants who survive 

birth will at some time in their lives be 

identified as mentally retarded in some 

context—most probably in the public schools. 

Epidemiological surveys conducted in 

various parts of the United States and abroad 

show comparable prevalence rates for the more 

seriously retarded—i.e., moderate, severe and 

profound levels on the AAMD classifications 

or IQ below 50. Fifteen such studies converge 

on an average rate of approximately .46% or 

4.6 cases per thousand population (Stein and 

Susser, 1974). These surveys generally covered 

ages roughly 10 to 20, obscuring the high 

mortality rate in early childhood. When the 

surveys are divided between general and rural 

populations, the three rural studies average at 

more than double the general rate, or 9.84 per 

thousand, while the remaining twelve cluster quite 

closely around 3.6. 

Penrose (1963) suggests that prevalence of 

malformation predictive of profound retardation 

at birth might be as much as 1 percent, Conley 

(1973) suggests 1.5 to 1.7 percent, including 

severe and moderate levels. The rate among 

prematurely born infants is much higher than 

among full-term babies. The rate among lowerclass nonwhites is higher than among middleclass whites, but the differences are not so striking 

as is the case in mild retardation levels. Higher 

rates of prematurity, higher health risk and 

inferior maternal and child health care could 

account for the difference at the more severe 

levels. 

In any case, the presumption of actual 

prevalence of the severe forms of defect 

predictive of mental retardation would be 

highest at birth, declining rapidly by mortality 

to a relatively low rate of .2% in adult life. 

Prevalence rates of the severely retarded 

have been affected by a number of tendencies in 

the past 20 years. On the one hand, modern 

medicine has made enormous strides in its 

ability to preserve life. Infant mortality rates 

have fallen markedly; survival of prematures at 

progressively younger ages has become 

possible, with correspondingly increased risk of 

developmental damage; recovery from infectious diseases by use of antibiotics has become 

commonplace. Consequently, along with other 

infants and young children, severely and 

profoundly retarded children now have a better 

chance of prolonged survival. 

On the other hand, improved health care, 

especially for mothers at risk, immunization, 

protection from radiation exposure, 

improved obstetrics, control of Rh 

isoimmunization and other measures have 

prevented the occurrence of some abnormalities and reduced the complications 

which formerly added to the incidence 

150 
and prevalence of retardation. New hazards 

appear, however, in environmental toxic 

substances, strains of microorganisms more 

resistant to antibiotics, new addictive and 

nonaddictive drugs, new sources of radiation, 

environmental stress, all of which are potential 

producers of biological damage and mental 

retardation (Begab, 1974). 

On balance, it is possible that incidence of 

severe retardation is falling while prevalence is 

continuing to rise. 

The high birth rate of the post World War 

II period produced a record number of 

severely retarded children who are surviving 

longer than ever before. The future, envisioning 

more control of the causes with a lower birth 

rate more limited to optimal conditions of 

reproduction may in time yield lower 

prevalence rates of the moderate, severely and 

profound retarded. Currently, a very 

conservative estimate of their number in the 

United States is approximately 500,000 (Tarjan, 

et al, 1973) but may actually be nearer a .3% 

level or 660,000 surviving beyond the first year 

of life. 

The prevalence of mild retardation is quite a 

different matter. Where the severely retarded 

show a declining prevalence by age, based 

wholly on mortality, the mildly retarded show 

a sharply peaked prevalence in the school 

years (6-19) and a rapid falling off in the adult 

years. This phenomenon cannot be a product of 

mortality, because the mildly retarded have 

shown longevity very nearly that of the 

general population. There are two possible 

alternatives, both of which may be the case. 

Large numbers remain retarded but cease to be 

the objects of attention; or they in fact cease 

to be retarded. In any case, no survey has yet 

found prevalence rates of mild retardation 

remotely approaching a constant across ages, 

such as would be expected on the assumption 

of unchanged relative mental status. Tarjan 

suggests that the rate of 3% traditionally 

projected as a constant across all ages, actually 

holds only for the school-age, with rated 

prevalence in selected age groups of .25% in 

the 0-5 group, 3.0% from 9-16, .4% from 20 

to 24, sinking to .2% in the population over 25; 

the overall prevalence being approximately 1% 

(Tarjan, et al, 1973, p. 370). This would yield 

a total of approximately 2.2 million retarded 

persons in the United States, as against 6.6 

million if an overall 3% is assumed. 

In studies of the Riverside, California, 

population, Mercer (1974) showed that the 

prevalence and social distribution of mild 

mental retardation differed markedly according to the definition and methods of 

identification employed. She compared the 

application of a "social system" definition 

("mental retardate" is an achieved status, and 

mental retardation is the role associated with the 

status) with a "clinical" definition (mental 

retardation is an individual pathology with 

characteristic symptoms which can be 

identified by standard diagnostic procedures). 

It was found that the use of a onedimensional clinical definition (IQ less than 69) 

yielded an overall rate of 2.14% retarded, with 

Blacks showing a rate 10 times and MexicanAmericans 34 times the rate of Anglos. When a 

two-dimensional definition is used (IQ less than 

69 plus deficient adaptive score) the overall 

rate shrank to .9% which is the "clinical" rate 

predicted by Tarjan. The distribution now 

showed Blacks approximately at the same rate as 

Anglos, but Mexican-Americans still 15 times 

greater. When pluralistic, culturally adjusted 

norms were used for both IQ and adaptive 

behavior, the overall rate reduced still further to 

.54% but the total shrinkage in this case was 

accounted for in the Mexican-American group 

where sociocultural nonmodality (a cultural 

pattern distinctly different from the predominant 

mode) and bilingual background were most 

prominent. Furthermore, when higher criteria 

for IQ and adaptive behavior were used, the 

disadvantage to both Blacks and MexicanAmericans, as compared with Anglos, was 

markedly increased. 

The social distribution of mild mental 

retardation has been found by all investigators 

to be inversely related to socio-economic 

151 
status. It is, according to Conley (1973) 13 times 

more prevalent among poor than among 

middle and upper income groups and found 

most frequently among rural, isolated or ghetto 

populations. Controversy persists concerning the 

contribution of constitutional and social 

learning factors to this distribution, but it is a 

question of the relative weight rather than an 

exclusive alternative. No one doubts the 

multiple effects of environmental deprivation 

on both physical and psychological 

development. Nor is there much doubt that 

social learning enables the great majority of 

those with mild intellectual limitations to assume 

normal social roles in adult life. It is evident 

that what might appear to be a manifestation of 

the normal distribution of polygenic general 

intelligence is really a complex product in 

which the genetic component is only one 

among many factors yielding varying degrees 

and rates of retarded behavior, among varying 

populations at varying ages. 

There is little point, then, in arguing who 

is "really" retarded. There is great point in 

determining who is in need of developmental 

and supportive assistance in achieving a 

reasonably adequate adult life, in determining 

the relationships between identifiable 

characteristics and the kinds of services that will 

be profitable, and in employing terminology 

that will aid rather than obscure these 

relationships. A critical issue is the degree to 

which cultural pluralism is reflected in the 

educational process. 

The classification suggested by Mercer 

(1973) involves a four-dimensional matrix in 

which potentially handicapping conditions, 

including mental retardation defined in either 

"clinical" or "social system" terms, may be 

identified: 

a) The dimension of intellectual functioning, measurable on a continuous scale 

represented by IQ. On this scale, following the 

1973 AAMD standard, an IQ of 69 or less is 

regarded as potentially handicapping and is one 

clinically defining characteristic of mental 

retardation. Mercer terms the person with only 

this dimension of disability as quasi-retarded. 

Ordinarily this will be reflected in learning 

difficulties in the school setting and justifies 

individually prescriptive educational assistance. 

b) The dimension of adaptive behavior, 

measurable on a developmental scale of 

behavioral controls accommodating the person 

to his environment. On this dimension a person 

falling substantially below age norms (perhaps 

in the lowest 3% of a normative distribution) is 

regarded as potentially handicapped. This 

constitutes a second clinically defining 

characteristic of mental retardation of the 1973 

AAMD standard. Mercer terms the person 

who has only this dimension of disability as behaviorally maladjusted, but she identifies the 

person with disability in both a) and b) as 

clinically mentally retarded, requiring 

services in both school and non-school settings. 

c) The dimension of physical constitution, 

describable in terms of the health or pathology 

of the various organ systems of the body. While 

not a defining characteristic of mental 

retardation, physical impairment may be in itself 

potentially handicapping and may be the cause 

of or magnify the handicapping limitations of a) 

and b). The probability of organic impairments 

being present increases with the severity of mental retardation, from 3% at mild retardation 

levels to 78% at moderate levels and 95% at 

severe and profound levels (Conley, 1973, pp. 

46-7). Individuals characterized by only c) may 

be termed generically as physically impaired, 

and in combination with a) and b) as organic 

mentally retarded. The term "multiply handi152 
capped" is commonly used, but this would apply 

equally to persons with more than one substantial 

physical impairment. 

d) Sociocultural modality is a fourth dimension which is distinguishable from the other 

three. It refers to the extent to which 

sociocultural variables of family background 

conform or do not conform to the modal culture in 

which the individual is assessed. When the family 

background is substantially non-modal, in this sense, 

the individual may be potentially handicapped in 

relation to the prevailing cultural expectations 

because of lack of opportunity for the appropriate 

learning. Such a person may be termed culturally 

disadvantaged. Mercer found that non-modality 

yielded effects which, to the dominant culture, appeared as low IQ, low adaptive behavior, or 

both when measured by the norms of the 

dominant culture. Utilizing a pluralistic model of 

mental retardation, sensitive to socio-cultural 

differences, Mercer found a substantial reduction 

in the prevalence of mental retardation in the 

Mexican-American as compared to the Anglo 

population of Riverside. Throughout the 

investigation, the Anglo sample yielded a 

constant rate of 4.4 per thousand identified as 

mentally retarded (i.e. no Anglos in this sample 

were judged either quasi-retarded or non-modal 

culturally). The Mexican-American population 

yielded the following succession of rates per 1,000: 

a) One dimensional—only standard IQ norms, 

149.0 

b) Two dimensional—standard IQ + standard 

adaptive behavior norms, 60.0 

c) Partial pluralistic two dimensional—standard 

IQ, pluralistic adaptive behavior norms, 30.4 

d) Pluralistic two dimensional—pluralistic 

norms for both IQ and adaptive behavior, 15.3 

(Mercer, 1973, pp. 235-254) 

The residual differences between the rate of 

4.4 for Anglos and the 15.3 rate for culturally 

adapted assessment of Mexican-Americans may be 

attributable to the pervasive effects of their 

bilingual status. 

Granted that Mercer's research is based on a 

single local population sampling and is a first 

approach to a "social systems" definition of mental 

retardation, it suggests the need for much more 

highly refined procedures in the definition and 

epidemiology of mental retardation as a basis for the 

adequate and appropriate delivery of developmental and supportive services where they 

are needed. 

There is complete agreement that it is impossible, 

at our present state of knowledge, to determine 

accurately either the incidence or the prevalence of 

mental retardation. There is far less agreement on 

what we can do to remedy this situation. Among 

the most urgent issues in classification: 

1. Definition. The formulation adopted by the 

American Association on Mental Deficiency 

involving two-dimensional deficit in the level of 

behavioral performance unquestionally is 

responsive to many problems arising from older 

definitions. But a number of issues remain: 

a) The two dimensions are not independent, but are, 

in fact, highly correlated, the degree of correlation 

being related to severity of deficit, suggesting the 

distinction of intellectual and adaptive measures 

has not been sufficiently refined. In practice, more 

reliance is frequently placed on IQ measures than 

on measures of adaptation or other bases of 

clinical judgment. 

b) The cultural contamination of standardized tests 

as currently used makes their findings suspect. 

Mercer and others require a corrective for cultural 

insensitivity of the instruments employed. 

c) The use of a global IQ measure which may be 

adequate for epidemiological purposes obscures 

the complexity of intellectual functioning and the 

variability of individual profiles which is the 

basis of service provision. Global IQ measures 

are rapidly losing favor among professional providers of service but are maintained for 

administrative convenience and ease of 

determination. 

d) Differences in the conditions associated with 

mild retardation as compared to the more severe 

forms in terms of organicity, comprehensiveness 

of impairment, resistance to modification, 

relatedness to cultural norms, etc., suggest to 

some that the two types are sufficiently different 

as to require separate classification, probably 

based on organic (or presumed organic) versus 

psychosocial etiology. 

2. Services. Since the instruments for the 

measurement of intelligence and adaptive behavior 

are scalar, with continuous variation on both sides 

of central norms, the relationship between a 

specific level of deficit and the need for specific 

types of service and treatment may be highly artificial. This appears to be the central question 

153 
underlying the controversy over the criterion 

level in the AAMD definition which now 

excludes persons with IQs from 70 to 85 

who formerly were included. The fact that 

relatively few scoring above 69 IQ manifest 

significant deficits in adaptive behavior may 

miss the point. Adaptive behavior may be 

quite specific and situational, especially where 

culture modality may also be in question. The 

real issue is to determine individual need, 

which cannot be derived from the IQ or 

adaptive behavior. This issue has been 

exacerbated by legislation which requires 

categorical classification as a condition of 

eligibility for service. 

3. Labeling. Titles are necessary for any 

scientific system of classification, and may be 

useful for certain administrative purposes; but 

their use in human service systems is a different 

matter. The attachment of a label to a species of 

plant or a type of rock makes no difference to 

the plant or the rock. The label assigned to 

classify a human being does make a difference. 

To label a person mentally retarded has consequences of a psychological nature if the person 

is cognizant of it and can assign a meaning to it; 

it has consequences of a social nature insofar as 

other persons assign meaning and respond in 

terms of that meaning. This is especially the 

case with the label of "mentally retarded" 

because all terms associated with deficiency of 

intelligence are, in our culture, highly charged 

with negative values. 

There have been many attempts to use 

systems of intellect classification as a means of 

adapting school and other programs to 

individual differences without making those 

differences appear invidious. These have not 

been entirely successful because value systems, 

even for children, tend to filter through the 

most subtle of euphemistic terminology. 

This is a difficult issue to resolve. Success 

is possible only if: a) classification for 

epidemiological purposes is entirely separated 

from need-evaluation for purposes of social 

grouping and prescriptive treatment, b) all 

treatment is person-centered rather than systemcentered, c) cultural value systems are recognized 

and respected, and d) eligibility for categorical 

assistance is based, not on global statistical 

criteria, but on the individual's need. 

4. Recording, Registering and Information Control (corollary to labeling). Obviously, the best data base for the 

epidemiologist would be a computerized data 

bank including all information on every case. 

This has, in effect, been advocated since Samuel 

Howe's first attempt to catalogue the "idiotic" 

population of Massachusetts in 1848, long before 

modern systems of information storage and 

retrieval were dreamed of. However, rights 

of privacy and confidentiality have become a 

critical issue. The problem is one of 

reconciling the needs of the service delivery 

system and the individual recipient, so that he 

will neither be "lost" as an anonymous number 

nor stigmatized for having his needs recognized. 

5. "Negativism." The nature of retardation 

lends itself to definition and assessment in the 

negative terms of deficit from desirable norms. 

The individual person, however, is not made up 

of deficits but of asset characteristics, however 

meager or distorted some of them may be. All 

treatment rests on the positive capacity of the 

person to respond, whether physiologically or 

psychologically. The issue of negatively versus 

positively defined traits and classifications is a 

basic one between the purposes of 

epidemiology and the purposes of service 

assistance. 

Who are the people who are mentally 

retarded? They are individuals whose assets 

for effective living in their cultural and 

physical environments are insufficient 

without assistance. The screen by which 

they are brought into view to be identified 

154 
and counted is composed of a mesh of intellectual 

and adaptive behavior norms. But the screen is a 

somewhat crude and abrasive instrument and 

requires to be refined and softened by concern for 

the individuals it exposes. 

How many mentally retarded people are there? 

The loss of potential for normal development and 

even survival affects a high proportion of those who 

are conceived, and probably 3% of those who 

survive birth. In addition to those hundreds of 

thousands who are not wellborn, there are millions 

who are not well-nurtured by the world in which 

they live. How we sort out these millions, how many 

will be called "mentally retarded" will depend on our 

definitions and our perceptions of need. The roots of 

these needs are not yet under control, nor have we 

sufficiently provided for their assuagement. 

REFERENCES 

Begab, M.J.: "The Major Dilemma of Mental 

Retardation: Shall We Prevent It? (Some Social 

Implications of Research in Mental Retardation)," 

American Journal of Mental Deficiency, 1974, 78:5, 519-

529. 

Birch H., Richardson, S., Baird, Sir Dugald, Harobin, G., 

Illsley, R.: Mental Subnormality in the Community, Baltimore: The Williams and Wilkins Co., 1970. 

Cobb, H.V.: The Forecast of Fulfillment: A Review of 

Research on Predictive Assessment of the Adult Retarded 

for Social and Vocational Adjustment, Teachers College, 

Columbia University, N.Y. and London: Teachers 

College Press, 1972. 

Conley, R.W.: The Economics of Mental Retardation, 

Baltimore and London: The Johns Hopkins University 

Press, 1973. 

Heber, R.: A Manual on Terminology and Classification 

in Mental Retardation, A Monograph Supplement to the 

American Journal of Mental Deficiency, Second Edition, 

1961. 

Heber, R., Garber, H., Harrington, S., Hoffman, D., 

Falender, C.: Rehabilitation of Families at Risk for Mental 

Retardation, Rehabilitation Research and Training Center 

in Mental Retardation, Progress Report, University of 

Wisconsin, Madison, December 1972. 

Holmes, L., Moser, H., Halldorson, S., Mack, C., Pant, F., 

Matzilevich B. (Eds.): Mental Retardation: An Atlas of 

Diseases with Associated Physical Abnormalities, N.Y.: 

MacMillan, 1972. 

Kanner, Leo: The History of the Care and Study of the 

Mentally Retarded, Springfield Ill.: Charles C. Thomas, 

1964. 

Lubs, H.A., and Ruddle, F.H.: "Chromosomal 

Abnormalities in the Human Population: Estimated Rates 

Based on New Haven Newborns Study," Science 1970, 

169, 495. 

Mercer, J.: Labeling the Mentally Retarded, Berkeley: 

The University of California Press, 1973. 

Mercer, J.: "Psychological Assessment and the Rights of 

Children," Harvard Educational Review, February 1974, 

44:1, 328 ff. 

Penrose, L.: Biology of Mental Deficiency, N.Y.: Grune 

and Stratton, 1963, P. 197. 

President's Committee on Mental Retardation: The SixHour Retarded Child, A Report on the Problems of 

Education of Children in the Inner City, Washington, 

D.C.: U.S. Government Printing Office, 1970. 

President's Committee on Mental Retardation: Mental 

Retardation: The Known and the Unknown, Century of 

Decision Series; DHEW Publication No. (OHD) 75-

21008, Washington, D.C.: U.S. Government Printing 

Office, 1975. 

Skeels, H.M., Updegraff, R., Wellman, B.L.: "A Study of 

Environmental Stimulation, An Orphanage Preschool 

Project," Studies in Child Welfare, Iowa University, 

Published by the University, Iowa City, Iowa: 1938, 15:4. 

Stein, Z., and Susser, M.: "The Epidemiology of Mental 

Retardation," Chapter 31 in American Handbook of 

Psychiatry, Second Edition, Volume Two, N.Y.: Basic 

Books, 1974. 

Tarjan, G., Wright, S.W., Eyman, R.K., and Keernan, 

C.V.: "Natural History of Mental Retardation: Some 

Aspects of Epidemiology," American Journal of Mental 

Deficiency, 1973, 77:4, 369-379. 

Zigler, E.: "Familial Mental Retardation: A Continuing 

Dilemma," Science, 1967, 155, 292-298. 

From Pictorial Completion Test II, reprinted from the 

Journal of Applied Psychology, September 1921. 

PLATE I 

Sketch from the colored illustration of the simplest picture 

in the series, the demonstration picture, with the inserts 

which particularly relate to this picture. Of course only 

one is quite correct, but the others can be inserted with 

some show of reasonableness. 

155 

Chapter 1 0 

Federal Resources in 1975 

This chapter indicates in broad terms where 

Federal resources exist in terms of authority and 

funds applicable to mental retardation, and 

appraises the adequacy, utilization and impact 

of those resources. 

Because of the increasing trend away from 

categorical legislation and funding since 1970, 

and the interpenetration of mental retardation with 

many other human conditions, it is as difficult to 

state a precise dollar value of the total Federal 

resources involved as it is to define the precise 

range of activities which impact on retardation. 

There is an enormous gap between authorized funding for enacted legislation and 

actually appropriated funds for implementation. 

Also, the Executive Branch has a good deal to 

say as to the actual flow and disbursement of 

funds. And the Executive agencies themselves 

issue regulations and administer funds. 

As a result, any catalogue of Federal resources applied to mental retardation is bound to 

be misleading, containing a mixture of on-going 

active programs and real expenditures, initial 

start-up exploratory efforts, token commitments, 

unfunded authorizations, shelved projects of 

out-going administrators and hoped-for projects 

and programs of incoming ones. 

Conley (1973) has estimated that the cost 

of all resources devoted to the mentally 

retarded population in 1970 was probably in 

the range of 20 to 30 billion dollars. This figure 

included all commonly required resources 

involved in the well-being of any group of 

people of equal numbers. A more useful 

concept is the value of special programs 

designed specifically to meet the problem of 

mental retardation, which Conley estimated to 

have been approximately $4.9 billion in 1970. 

This does not include the economic burden borne 

by families outside of the service systems. Of 

all the costs of direct services to the retarded, including both residential care and 

community care, Conley estimated the distribution in 1970 to have been 12.2% Federal, 

79.3% State and local, 5.9% from client fees 

and 2.6% from insurance and philanthropy. The 

Federal share had increased from 9.6% in 1968. 

In addition, Federal sources provided substantial 

research, training and construction expenditures. 

Since 1970 total cost and investment in mental 

retardation have increased substantially at all 

levels, Federal, State, and local; public and 

private. 

Prior to 1955 no Federal funds had been 

specifically earmarked for mental retardation. 

With the growth in Federal involvement, the 

expenditures for mental retardation by 

DHEW increased from $129 million in 1963 

to $735 million in 1972, or nearly sixfold. This 

figure represented only four tenths of one 

percent increase in share of the Department's 

total annual outlays, however. 

Within the Federal budget as a whole, 

mental retardation occupies a proportionately 

minor position, although the funding level now 

approaches $2 billion. Those dollars have been 

significant in stimulating and supporting the far 

greater outlays by State, local and private 

efforts. 

There is considerable overlap in the 

agencies responsible for some aspects of mental 

retardation, and many gaps in coordination. 

Similarly, where the legislative language has been 

unclear on authority to deal with certain phases of 

mental retardation, there are broad gaps in 

resources. Some efforts have been made to 

provide for such contingencies; for example, 

the Developmental Disabilities Act was designed in part to provide flexibly applicable 

resources to the States in order to fill gaps in 

program development not otherwise provided 

for. 

157 
In recent years Federal legislative authority 

and the appropriation of funds have covered 

inclusive needs rather than narrow categorical 

concerns. The legislative language or 

statements of congressional intent may identify 

the range of specifics intended and will 

generally set boundaries of applicability. We 

therefore see much more legislation directed 

toward "developmentally disabled" or "handicapped" persons than specifically toward 

"mentally retarded" persons. This tendency is 

most apparent on the broadest levels of 

"generic" services, such as income maintenance, 

social services, education and health services. 

The net effect has been to multiply the 

resources, but to make it more difficult to 

evaluate their impact on the specific problem. 

Consolidation of agencies, programs and 

budgets has managerial advantages and in the 

long run may result in economy and efficiency. 

The advocates of particular interests, such as 

mental retardation, however, are concerned that 

increasing anonymity within broad-gauged 

legislation will blunt the sharp edge of attack on 

the problem, and that the ebb and flow of 

politically and socially popular causes will 

undermine the sustained resolution of the 

problem. 

The target elements in mental retardation 

may be divided broadly into two groups: a) 

those dealing with broad basic strategic elements 

such as basic research, applied research and 

development, preventive strategies, planning and 

coordination, information and data analysis, 

manpower and personnel training, and facilities 

improvement and construction; and b) those 

relating to individual services and supports 

including income maintenance, residence, 

personal and social services, health, developmental and educational services, work 

training and employment, legal and protective 

services, and social integration. 

Health, Education, and Welfare 

Office of Human Development 

The Assistant Secretary for Human Development has been assigned responsibility for a 

number of significant programs related to 

mental retardation: 

The President's Committee on Mental Retardation (PCMR). PCMR exists by Executive 

Order and reports to the President through its 

chairman, who is the Secretary of DHEW; but 

for housekeeping purposes it is assigned to the 

Assistant Secretary for Human Development. 

The committee's major functions are: 

(1) to advise the President on the adequacy of the 

effort to combat mental retardation, (2) to 

provide liaison among Federal, State and local 

governmental and private organizations, (3) to 

inform the public and enlist their support. 

Presidential goals set for the committee are: (1) to 

reduce the occurrence of mental retardation by 

one-half before the end of the century, (2) to 

return to the community one-third of the retarded persons residing in institutions, and (3) to 

assure retarded individuals full status as citizens 

under the law. 

In carrying out its mandate, the Committee 

acts as a focal point for the circulation of 

information, the coordination of activity and 

the stimulation of effort. (See Chapter 7). 

The Office for Handicapped Individuals 

(OHI) implements Section 405 of the Rehabilitation Act of 1973 and is charged with 

the interagency coordination, projection and 

program development of all efforts within 

DHEW concerning handicapped individuals. It 

evolved from a Departmental Committee on 

Mental Retardation originally established in 

1955, but with broadened scope of responsibility 

and with a special charge to serve as a central 

clearinghouse for information and resources 

available to all handicapped populations. 

158 
The Office of Child Development (OCD) 

was established in 1969 to serve as a point of 

coordination for all Federal programs serving 

the interests of children and their families, and 

to act as advocates for such services. In 1973 it 

became a part of the Office of Human 

Development which focuses on groups of 

Americans with special needs. 

OCD harbors two agencies of special 

concern to mental retardation. One is the 

Children's Bureau with special responsibility 

for children at risk. The Bureau funds 

research and demonstration activities for (1) 

children with physical and mental handicaps, 

and (2) institutionalized children who are being 

returned to community and home settings—

important constituents in the achievement of the 

Presidential goals for mentally retarded 

persons. These functions need to be fully 

coordinated with all other efforts to provide 

alternatives to institutional residence and 

supporting service for those who are mentally 

retarded. 

The other OCD program of concern to the 

retarded is Headstart, which since 1972 has been 

required to make 10% of its enrollment 

available to handicapped children. A number 

of experimental and demonstration projects, 

some in collaboration with the Bureau of 

Education for the Handicapped, are exploring 

the most effective approaches and techniques of 

integrating handicapped and non-handicapped 

children in these pre-school developmental 

programs. Again, a crucial issue is in the 

coordination of these programs with others in 

early intervention and developmental 

stimulation of children at risk of mental 

retardation. The necessity of collaborative 

research and field testing cannot be minimized. 

Vocational Rehabilitation programs have 

been in operation since 1923 but made available 

to mentally retarded persons since 1943. 

However, the number of mentally retarded who 

have been "rehabilitated" increased very 

slowly, comprising only 3% of the total in 1960, 

but accelerating to 11.8% (30,000) in 1970 and 

12.9% (46,000) in 1974. In relation to the number 

of mildly and moderately retarded in the general 

population emerging from the schools, this means 

that only a small fraction is currently receiving 

VR services. 

The VR staff, however, has been considerably strengthened in its competency to 

handle the special needs of mentally retarded and 

mentally ill persons in comparison with those 

orthopedically and sensorially handicapped. 

Statutory authority of 1973 emphasizes 

"serving first those with the most severe 

handicaps," especially "those who have been 

under-served in the past." (There was no 

additional funding provided for this 

responsibility, and the emphasis is modified by 

restriction to those who have "potential for full 

employment.") The stipulation on serving 

severely handicapped is not strongly reflected 

in practice for severely retarded clients. 

Though a large proportion of mildly retarded 

people make their way unaided into the 

employment market, for many who are 

marginally employable, personal-social factors 

limit their vocational adaptability and make 

them vulnerable to labor market fluctuations. In 

addition, it should be noted that the 1973 

revision of the AAMD definition of mental 

retardation excludes the "borderline" groups 

originally covered. 

 VR operates through seven programs: 

1. Grants to States for Basic Support 

Program. This requires a 20% State 

matching share. Of a total $609 million appropriated in 1974, $82 million was 

obligated for mentally retarded individuals. 

2. Innovations and Expansion Grants. At 

90% of costs for not more than 3 years, these 

allow expansion to new clientele but focus on 

those on Public Assistance. 

159 
3. Facility Improvement Grants. This allows 

for upgrading existing rehabilitation facilities on 

a 90% matching basis. In 1974, $600,000 of $2.9 

million appropriated was used for mental 

retardation facilities, or 20.7%. 

4. Training Services Project Grants. 

These are 90% grants for special projects to 

improve the services provided in approved 

vocational rehabilitation facilities. In 1974, 

approximately 10% of the $5.3 million 

appropriated was awarded to MR facilities. 

5. Initial Staffing Grants. Phase-out 

grants over a period of 4 years 3 months start at 

75% and reduce to 30% in the final year, in 

order to facilitate the start-up of new facilities. 

MR facilities received $40,000 of $550,000 

appropriated in 1974, approximately 7%. 

6. Technical Assistance to Rehabilitation 

Facilities provides teams of experts to meet 

special problems encountered in the 

development and operation of facilities. Most 

frequently requested are consultations in 

administration, program, production, contract 

procurement and fiscal management. Twenty 

percent, or $40,000, of this budget in 1974 was 

directed to mental retardation facilities. 

7. Rehabilitation Research and Training 

Centers. Authorized by the VR Act of 1961 

as a mechanism to provide multi-disciplinary 

research in the dissemination of new knowledge 

and exemplary methods, there are now 19 

Research and Training Centers based in 

universities with proven capabilities of 

supporting quality programs. Twelve of these 

concentrate on medical rehabilitation, three in 

general vocational rehabilitation, one in deafness, 

and three specialize in rehabilitation of the 

mentally retarded. Of the total 1974 appropriation 

of $14 million for this program, a bit less than 

$1.5 million was allocated to the three MR 

Centers at the universities of Oregon, Wisconsin, 

and Texas Tech, slightly more than 10% (See 

chapter 12). 

Overall, mental retardation was reflected in 

12.9% of the total 1974 vocational 

rehabilitation services budget of $648 million, 

precisely in proportion to the number of retarded 

client case closures reported. 

Problems and issues facing the VR programs 

for the retarded appear to fall into three areas: 

 coordination of effort with other 

agencies working with retarded clients, especially the retarded adult. Gains have been 

made in the transition between special education 

and vocational training and placement, but links 

with other community services need 

strengthening, especially provision of resources 

to support the movement of retarded individuals 

from institutions to community; 

 advancement of research-based technical 

knowledge and skill in developing and utilizing 

productive capabilities of more severely 

retarded clients. This is a mandate, but there is a 

lag in methods of assessing and programming 

for persons who are substantially retarded. The 

issue raises concern whether VR is the proper 

agency for such services, since the requirements 

of "potential for full employment" contradicts 

the intent of Congress that severely 

handicapped clients be served. In fact, many 

moderately, and virtually all severely or 

profoundly retarded persons are excluded from 

services of vocational rehabilitation; 

 resolving the problems of full integration of 

those receiving rehabilitation services into the 

mainstream of society. 

160 
A recent study was done for the Secretary of 

HEW on congressional mandate concerning 

"The Role of Sheltered Workshops in the 

Rehabilitation of the Severely Handicapped," 

(Greenleigh Associates, Inc., July, 1975, 

Contractor's Executive Summary, and Secretary 

of HEW's Summary report to Congress). It 

indicates that not more than 10% of workshop 

clients out of 410,000 served annually are 

placed in competitive industry; that while rehabilitation, in the sense of the reduction of 

individual problems, is relatively high, the 

outcomes in terms of either external competitive 

or internal sheltered productivity is quite low. 

The study also indicates problems relating to the 

business management of workshops, the wage 

levels and types of job training provided, and 

the identification of realistic labor markets for 

workers of limited productivity. 

Half of the workshop clients had a primary 

diagnosis of mental retardation, according to the 

study. A number of action steps to improve the 

outlook have been proposed by RSA and the 

HEW Secretary. 

There are additional problems related to 

identification of eligible clients and their 

labeling in terms of standard definitions and 

clinical judgments. A recent study by the Urban 

Institute indicates that 50% of clients rejected 

for services by VR were capable of living 

independently if given appropriate support. 

Those who can function relatively independently 

find that being identified as retarded is an added 

handicap to employment. There are problems 

also in the availability of fall-back services for 

those who encounter subsequent problems, 

especially for those with severe limitations. 

The Developmental Disabilities Office 

was designed to provide comprehensive 

planning and coordination of service 

delivery systems in the States to meet the 

needs of mentally retarded, epileptic, or other 

seriously neurologically handicapped 

individuals. The 1975 amendments also 

include "autism" and other developmental 

problems associated with mental retardation 

within the scope of developmental disabilities. 

The program was conceived to reduce the 

number and broaden the 

coverage of categorical programs, to improve the planning capacity at State and local 

levels, to utilize all resources provided to 

aid developmentally disabled persons and to 

provide supplemental funds to "fill the gaps" 

in comprehensive service delivery systems, 

with emphasis on the more severely 

disabled who have been underserved. 

The legislative authority of DDO is P.L. 

91-517, the Developmental Disabilities 

Services and Facilities Construction Act of 

1970, as amended by P.L. 94-103 of 1975. 

Major objectives of the program are (1) 

the improvement and expansion of supportive 

community services, (2) improvement in the 

quality of residential care for the 

developmentally disabled, and (3) provision of 

community-based alternatives to institutional 

forms of care, with a target objective of 

moving one-third of the peak 

institutionalized population into 

community-based residential alternatives by 

FY 1978. 

The Division carries out its assigned responsibilities through State grants and support 

of University Affiliated Facilities (UAF). 

1. State grants are authorized on a 

formula basis for comprehensive 

planning, administration, services and 

construction for the developmentally 

disabled. The purpose of these grants is 

to provide for the planned integration of 

services with maximum flexibility and 

local determination by the States. An 

agency coordinating council and a State 

Advisory Council with strong consumer 

representation are required. The 

objective is to provide Federal support 

for a range of diversified services 

161 
in terms of the life-time needs of severely 

developmentally disabled persons. Comingling of funds with those of other State 

programs is provided for. Such funding makes it 

easier to develop comprehensive services 

through integrating specialized and generic 

services of State agencies representing such 

diverse areas as health, welfare, education, 

rehabilitation and residential services, without 

imposing a set pattern on any State. 

State plans are required which must show the 

integration of all relevant programs, 

maintenance and stimulation of effort, new 

program developments and expansions and the 

specific planned uses of DD funds in "filling the 

gaps" and stimulating new resources for the total 

comprehensive program. The 1975 amendments 

require extensive reporting and exacting 

accountability on the "progress of persons with 

developmental disabilities" based on individual 

program planning. 

Although the legislative authority provided 

for funds that would escalate from $60 to $130 

million, appropriations for the first three years 

were limited to $11.2 million in 1971. They 

expanded to $30.9 million in 1974. Continuing 

resolutions sustained operations while amending 

legislation was held up in Congress. For FY 

1975 State Planning and Advisory Councils 

allocated 73.7% ($21.2 million) of the formula 

grant funds for services, 26.2% ($7.4 million) 

for administration and 1% ($243,000) for 

construction which was limited to four States. 

Services supported through the States on the 

basis of intermingled funding covered the full 

range of evaluational, treatment, training, living 

arrangements, employment, counseling, protection 

and informational functions. 

2. Special Projects. Developmental Disabilities legislation provides for the Secretary 

to withhold a portion of the appropriations 

under Title I (State Grants) for allocation to 

projects of national significance in 

demonstrating new techniques for advancing 

the purposes of the law. In FY 1974, 5.2% of 

the appropriation was so used, and in FY 1975, 

9%. The Developmentally Disabled 

Assistance and Bill of Rights Act of 1975 

changed the previous arrangements to specify 

authorizations for special grants increasing in 

amount from $18 million in FY 76 to $25 

million in FY 78. No less than 25% of the 

funds appropriated under these authorizations 

are to be used for projects of national significance, as determined by the Secretary in 

consultation with the National Advisory 

Council on Services and Facilities for the 

Developmentally Disabled. 

3. Title II of the Developmental Disabilities Service and Facilities Construction Act 

of 1970 authorized amended continuation of the 

construction authority granted under Part B of 

88-164 for university affiliated and community 

facilities. Renovation of existing university 

affiliated facilities and construction of satellite 

facilities is authorized in the 1975 amendments, 

with authorized funding limited to $3 million 

annually from 1976 to 1978. Demonstration and 

training grants were authorized under funds 

limited to $15 million in FY 1971 and 

escalating to $20 million in FY 1973. Actual 

appropriations were steady at about $4.25 

million per year. These funds have been used 

for administrative costs of University 

Affiliated Facilities which now number more 

than 40, with a mission of providing interdisciplinary training at all levels for personnel in 

mental retardation and developmental disabilities, 

applied research and exemplary services. The 

DD Amendments in P.L. 94-103 of 1975 

define and develop the UAF concept and 

authorize expanded supports for construction 

and operation, including the development of 

satellite centers. 

162 
A more detailed account of the UAF 

operations is given in Chapter 12. The role of 

the UAFs appears to be critical in the 

stabilization and development of programs for 

mentally retarded and developmentally disabled 

persons, through manpower development, 

research applications and exemplary multidisciplinary service delivery. 

Social and Rehabilitation Services (SRS) 

Established in 1967, SRS was designed to 

consolidate all income support programs for 

needy Americans with the social and 

rehabilitation programs, including services for 

the mentally retarded. Subsequently, the 

Rehabilitation Services Administration 

(RSA), along with Developmental Disabilities, 

was shifted by Congress to the Office of 

Human Development. 

Aged, Blind and Disabled assistance 

programs were shifted by Congress to the 

Social Security Administration as a new 

"Supplemental Security Income" (SSI) 

program. 

Currently, three major components of SRS 

have responsibility for providing income 

maintenance, medical services and social 

services for economically, physically and 

mentally handicapped persons. 

The Assistance Payments Administration 

has primary responsibility for grants to States 

for public assistance (welfare) programs under 

the Social Security Act Title IV Part A, Aid 

to Families with Dependent Children 

(AFDC) and Emergency Welfare Assistance. 

The incidence of mental retardation in families 

eligible under this authority is higher than 

normal expectation, amounting to approximately 

5%, according to an agency estimate based on 

1970 data. Funds obligated for mentally retarded 

persons in 1975 under the Assistance Payments 

Administration were approximately $523,000. 

There is real concern that assistance payments 

are not really reaching the retarded child in 

many of these families, that the highly vulnerable position of children within the environment of poverty is not being effectively 

mitigated by the assistance programs as currently 

administered. 

Public Services Administration formerly 

had responsibilities for the Social Services 

Programs and Child Welfare Services under 

Titles I, IV A, IV B, X, XIV, and XVI of 

the Social Security Act. The 1974 Social 

Security Act amendments provided a new 

Title XX which authorized grants to States 

for services to eligible persons based on need, 

replacing the previous provisions under the 

former titles as of October 1, 1975. Individual 

eligibility is based on the extent of need 

determined by available income and resources 

and includes mentally retarded individuals who 

meet eligibility requirements. All but one 

State in their required plans under Title XX include a wide range of community-based 

services which assist MR individuals to 

achieve goals of self-support, selfsufficiency and protection, and to prevent 

unnecessary institutionalization by providing 

appropriate community care and service 

alternatives. 

Services in this program may include: 

1) Day Care services which help the 

child or adult to remain in his own home in 

lieu of institutionalization. 

2) Short term foster family care following 

periods of crisis, and long term foster care to 

provide benefits of family and community 

living in lieu of institutionalization. 

3) Services on institutional placement 

where needed and services to move individuals out of institutions were feasible. 

4) Protective services, including homemaker services, chore services, transportation and 

health support services, which will reduce the 

danger of neglect, exploitation and abuse, and 

assist where feasible, the individual to attain or 

retain maximum capacity for self-care and 

independence. 

163
5) Counseling services to expectant mothers, 

which will help reduce the incidence of mental 

retardation. 

The total available Federal funds for social 

services is $2.5 billion annually, providing 

desperately needed supplement to State 

resources. The States have qualified for $2.4 

billion in FY 76. 

Child welfare services (Title IV B of the 

Social Security Act) under PSA are designed 

to protect children from social hazard and 

promote normal development. These services 

are available to retarded children from all 

socio-economic levels, not only for lowincome people. 

Medical Services Administration (MSA) 

under SRS, operates the Medicaid program 

under Title XIX of the Social Security Act, 

providing Federal matching payments for 

State health care of eligible low-income 

persons. All jurisdictions except Arizona now 

participate in the Medicaid program with 

various optional arrangements in relation to 

the SSI program. All mentally retarded persons 

who qualify under the income limits of the 

State program are eligible for Medicaid. 

Mental retardation facilities (ICF/MRs) 

must meet specially designed standards by March 

1977, in order to participate in Federal funding. 

Thirty-five States had responded to the new 

Title XIX authority by the planning deadline 

of March 1975. 

Under Medicaid plans, States must provide 

seven of twenty services including such things 

as inpatient hospital care, outpatient care, 

physician's services, skilled nursing facility 

services for individuals 21 years and older; early 

and periodic screening, diagnosis and treatment 

services for children under 21; lab and X-ray 

services and home health services. Under 

ICF/MR eligibility, health and rehabilitation 

services are covered for individuals under active care and treatment. The estimated funds 

obligated to mentally retarded individuals under 

this program for FY 1976 is $480 million. This 

legislation has caused a flurry of activity in 

many States to improve institutional services. 

There are concerns, however. For example, 

the standards (derived from the Residential 

Institutions portion of the Accreditation 

Standards for Facilities for the Mentally 

Retarded, promulgated by the Joint 

Commission for Accreditation of Hospitals) are 

designed primarily for large public institutions, 

and they have a medical orientation. Because of 

the physical facilities required, it is difficult for 

existing—and particularly the older—residential 

establishments to meet the standards. In addition, 

some elements of the standards are already 

obsolete. 

AC/FMR standards are designed to be 

flexible but, embodied in official regulation, 

are now being rigidly administered. Another 

problem is that some States, in order to qualify 

for Federal Title XIX support, have been 

pouring funds into upgrading institutions and 

neglecting community service facilities. As a 

consequence, the effects of Title XIX, 

laudable in principle, may in fact run 

counter to the government's avowed policy of 

"deinstitutionalization." 

Social Security Administration (SSA) 

Mentally retarded individuals may receive 

benefits under the social security insurance 

programs. 

The Old-Age, Survivors and Disability Insurance (OASDI) programs under Title II are 

a contributory form of social insurance, 

financed by a tax on earnings that is paid by 

workers, their employers, and the self-employed. 

Benefits are provided for retired and disabled 

workers and their dependents and for the 

dependents of deceased workers. Retarded 

persons may be covered under any of these 

categories without being so identified, hence 

their number is not known. 

164 
Since 1956 an adult who has been permanently and totally disabled since childhood is 

eligible to receive benefits on the account of a 

retired, deceased or disabled parent. Mental 

deficiency is stated to be a factor in more than 

72 percent of such adult-child disabled 

beneficiaries. In 1974 approximately 230,400 

mentally retarded adults received more than 

$298 million in such benefits. 

Medicare benefits (Title XVIII) also derive 

from the contributory insurance program and, 

since 1973 extend to disability beneficiaries 

under 65 years of age who have been 

receiving disability benefits for 24 consecutive 

months. 

The Supplemental Security Income program (SSI) makes monthly cash payments to 

people in financial need who are 65 or older or 

blind or disabled. Administered by the Social 

Security Administration, SSI is financed with 

funds appropriated from general revenues. 

Mentally retarded persons who have little or no 

income and resources may receive monthly 

payments under this program, which went 

into effect on January 1, 1974. For the first time 

the age limit for eligibility of disabled persons 

was eliminated and children became eligible. 

Payments to eligible individuals or couples 

are intended to supplement whatever income 

they may have from other sources, including 

social security insurance benefits. The program 

provides a nationally uniform income floor 

which was $157.70 a month for an individual 

and $236.60 per month for a couple beginning 

July 1, 1975. The basic Federal payment levels 

are designed to increase with rise in the cost of 

living. Many States supplement the Federal 

benefit level, so that monthly payments to 

some beneficiaries may be as high as $300. 

Medicaid benefits are also available from the 

State to all persons eligible for SSI benefits. 

Disabled persons who receive supplemental security income payments, and who 

might benefit from vocational rehabilitation 

services, are referred to the State rehabilitation 

agency. The cost of rehabilitation services 

will be paid for by the Federal Government. 

However, a recent survey and report by the 

Secretary of HEW to Congress concerning 

the role of sheltered workshops in the 

rehabilitation of severely handicapped clients 

indicated the need to revise the systems of wage 

supplements provided to individuals of low 

productivity, including provision to allow 

them to retain benefits from SSI and OASDI 

regardless of income earned in a sheltered 

workshop. 

In July 1975, over 4.1 million persons were 

receiving supplemental security income 

payments and approximately 30,000 new 

applications were being received each month. 

Total Federal and State supplementary 

spending for payments amounted to $5.5 billion 

in FY 1975. 

Social Security Administration estimates that 

there were over 400,000 mentally retarded 

persons receiving SSI payments by July 1975. 

Office of Education—Bureau of Education 

for the Handicapped (BEH) 

Since the efforts within the U.S. Office of 

Education to provide effectively for the 

handicapped acquired Bureau status in 1968, the 

growth of that program has reflected its 

recognized importance on the national 

educational scene. The series of legislative 

acts described in Chapter 5, from P.L. 83-531, 

of 1954 to P.L. 94-142 of 1975 has established 

a substantial authorization, if sufficient funds are 

appropriated, to guarantee adequate educational 

opportunity for all handicapped children, both 

in the public schools and in residential 

institutions. The authorizations extend from early 

childhood to late adolescent education of 

mentally retarded and other handicapped 

children of all degrees of ability. They 

provide support for resources, research and 

personnel training. Fulfillment of the 

authorizations depends upon actual 

appropriations. 

165 


In cooperation with the Developmental 

Disabilities Office, BEH has provided support 

moneys to special education components of 16 

University Affiliated Facilities in 

interdisciplinary training programs. This takes the 

form of supporting a special educator on the 

UAF faculty (not a member of any 

department of the university) specifically to 

train personnel for education of the handicapped. 

Funds allocated total about $500,000 annually. 

Special projects of the Division of Personnel Preparation support modifications of 

existing personnel training programs. Currently 

there are about 50 such projects totaling $5.8 

million, of which one-third are concerned with 

mental retardation. 

Under Innovation and Development, the 

Research Program of BEH promotes and 

supports research and related activities to 

improve the education of handicapped children. 

Support is available for research, dissemination, 

demonstration, curriculum and media projects. 

Recent emphasis has been on "noncategorical" projects for educating 

handicapped children. BEH is now initiating 

research on such extensive studies as the 

effects of teacher behavior on pupils, methods 

of matching learning characteristics of 

retarded children with teaching methods and 

environments, new methods and materials for 

severely and profoundly retarded children, the 

integration of handicapped children into 

regular education programs, and techniques for 

integrating community services available to 

retarded and other handicapped children. All 

of these issues reflect long-range investigative 

objectives of the Bureau; most of them are 

embodied in currently supported research 

programs and will be continued into the future. 

Fiscal year 1976 funding is expected to be 

approximately $11 million. 

Public Health Service (PHS) 

The Public Health Service has the primary 

Federal responsibility for health programs, a 

number of which relate to mental retardation. The 

programs to be described are organized under 

the Health Services Administration, are the 

Center for Disease Control; the National 

Institutes of Health; and the Alcohol, Drug 

Abuse, and Mental Health Administration. 

While these four PHS agencies have some 

interests in areas of common concern to mental 

retardation, e.g., immunization and phenylketonuria, each has its own particular focus, from 

basic research to the delivery of services. 

The Bureau of Community Health Services 

(BCHS) and the Indian Health Service (IHS) are 

the two components of the Health Services 

Administration that have concerns in mental 

retardation. 

Within BCHS, basic services designed to assist 

States with formula grants for maternal and child 

health and crippled children's programs are 

managed by the Program Office for Maternal 

and Child Health (MCH). The programs of 

MCH encompass the years from preconception 

through adolescence, including maternity 

nursing services, family planning services, 

prenatal and pospartum care in maternity clinics, 

nursing, dental services, early identification of 

special problems, and well-child conferences. 

By improving nutrition, preventing illness and 

disease, and promoting corrective measures, 

these programs reduce many of the hazards that 

may produce or aggravate mental retardation. 

Crippled Children's Services provides early 

case finding, diagnosis, and corrective care for 

over half a million children a year, covering 

many children with multiple handicaps who are 

also mentally retarded. Crippled Children's 

funds, which had been earmarked by Congress 

between 1963 and 1975, continue to support 20 

projects providing cytogenetic and biochemical laboratory services and genetic 

counseling at selected medical centers. 

168 
Since the mid-1950's MCH has supported 

diagnostic and evaluation clinics especially 

directed toward mental retardation and 

associated conditions. Currently, 166 clinics are 

supported by MCH funds in all but two States, 

many of them now operating as the core 

service facility in UAFs. Ten clinics are 

specially designed to work with multiply 

handicapped children and as models for the 

type of staffing and services needed to meet the 

total requirements of such children in a single 

setting. 

Preventive services are a basic concern of 

MCH. The Maternal and Infant Care (MIC) 

program is crucial to reaching into 

neighborhoods with the highest incidence of 

mental retardation. It currently supports 56 

projects in localities with higher rates of 

infant and maternal mortality than the United 

States as a whole. Newborn screening for 

phenylketonuria (PKU), and screening for 

other inborn errors of metabolism reach over 

90% of the live newborn infants. Screening for 

lead poisoning, utilization of anti-Rh immune 

globulin in risk cases, and immunization 

against rubella are other preventive programs 

of MCH. Collaborative studies of outcome of 

dietary treatment of PKU infants are being 

conducted by 18 medical centers with MCH 

support. These studies are accumulating data 

on "safe" levels of management, the impact of 

late detection, etc. 

Approximately $130 million of MCH 

funding was provided to 20 UAFs from 1965-

1975 to support training stipends, core facilities, 

and the model clinics serving mothers and 

young children. Many of these UAF programs 

utilized previously established diagnostic centers 

supported by MCH. 

A significant portion of MCH-CC (Crippled 

Children) service-directed research funds have 

been directed to problems relating to both 

biologic and socio-economic factors which 

increase the risk of handicapping conditions in 

the critical prenatal, perinatal and postnatal 

periods. 

MCH grants to States and obligated to 

mental retardation amounted collectively to 

$1 million in FY 1957 and increased in the 

following 16 years with the addition of new 

programs to $34.2 million in FY 1973 or 

23.3% of MCH funds for these purposes. The 

MIC program, although non-categorical for 

mental retardation, increased from $4.6 million 

in FY 1964 to $47.2 million in FY 1973. 

Reductions in FY 1974 and threatened in FY 

1976, have made serious inroads on all of these 

programs, amounting to projected loss of 35% 

from peak funding. This is already having 

serious effects on the momentum of attack on 

urgent problems in the prevention and treatment 

of mental retardation. 

The Indian Health Service (IHS) does 

not have categorical programs in mental 

retardation, but its strong public health emphasis, 

especially on services for mothers, infants, and 

children, has important implications for the 

reduction of retardation and associated 

developmental disabilities. The Service 

operates 51 hospitals with out-patient, pre- and 

post-natal care and counseling. Located on the 

major Indian reservations, the IHS encounters 

great difficulties in maintaining adequate 

personnel, especially since the PHS service 

option as an alternative to military service for 

doctors has ceased to be a factor. 

The training of Indian physicians is making 

some headway, from 4 American Indians in 

medical schools in 1970, to 140 in 1975. This 

number is increasing each year; but the number 

in actual practice is still negligible. There is 

greater progress in the training of nurses, 

counselors, and other health-related professions 

with emphasis on the training and use of paraprofessionals. 

IHS has been considering offering professional training more appropriate to the 

Indian cultures. 

169 
A serious unresolved problem is the delivery 

of services to widely scattered populations on 

vast land areas. Mobile units and traveling 

teams have not solved the problem. Some 

Indian people on the reservations rank high 

among American communities in maternal and 

infant mortality and morbidity, including high 

rates of birth defects as well as high rates in all 

categories of human problems related to 

poverty. 

The Center for Disease Control, through 

its Bureau of State Services, is responsible, among 

other assignments, for lead-based paint 

poisoning prevention and for immunization 

programs. These are relatively new but potent 

efforts in the prevention of mental retardation. 

During 1974, 41 lead project communities 

found a 4% frequency of elevated blood 

levels, 3,800 requiring treatment. Other surveys 

by MCH have shown elevated levels in 

children not in dilapidated housing or with a 

history of pica. These findings suggest the 

importance of airborne lead in areas with high 

concentrations of leaded gasolines. In the 

southwest, in areas where adobe clays are used 

in housing or other lead-bearing clays are used in 

cooking-pots, lead hazard is also high. 

The rubella immunization program, initiated 

in 1969, has administered over 48 million 

doses of rubella vaccine to susceptible 

populations. This effort has resulted in a 

reduction of reported cases from 56,552 in 1970 

to 11,917 in 1974. It is estimated that as many as 

3,000,000 cases of rubella and 30,000 cases of 

congenital rubella syndrome have already been 

prevented. Since the licensure of rubella live 

virus vaccine in mid-1969, there has been a 

steady rise in the trend line of the proportion of 

vaccinated children in the 1-4 age group. But in 

1974 the line had reached only 60%, leaving 

5,000,000 children untreated. 

Unvaccinated females of child-bearing age 

who have not acquired natural immunity should 

be vaccinated if: 1) it has been determined that 

they are not pregnant; 2) and they agree not to 

become pregnant within 60 days of receiving 

the vaccine. (Approximately 15% of postpubertal women have not acquired natural 

immunization.) 

Two of the National Institutes of Health, 

the National Institute of Neurological and 

Communicative Disorders and Stroke 

(NINCDS) and the National Institute of 

Child Health and Human Development 

(NICHD), manage programs of great significance to mental retardation. 

The NINCDS conducts, coordinates, and 

funds, directly or by contract grants, research on 

prevention, diagnosis, and treatment of 

neurological, sensory, and communicative 

disorders. The Institute also funds basic research 

and research training programs for the related 

scientific disciplines. Two hundred or more such 

disorders afflict 20% of the U.S. population. It 

is estimated that from 1.0 to 1.7% of children 

born alive in the U.S. have malformations 

predictive of profound retardation. Most of 

them die young. About 3% of surviving 

children will at some time in their lives be 

identified as mentally retarded (See chapter 9). 

Mental retardation and many of these diseases 

are caused by or associated with a number of 

biological, psychological, and social factors. A 

substantial percentage of moderately to 

profoundly retarded persons show neurological 

impairment resulting from biological factors. 

The remainder, constituting the great majority, 

are more mildly retarded, without demonstrable 

damage to the brain but in most instances have 

histories associated with poverty, malnutrition, 

and generally unfavorable developmental 

environments. 

170 
NINCDS is involved both intramurally and 

extramurally in studies involving the following 

areas of biologically caused mental 

retardation: 

 Inborn errors of metabolism which damage 

the brain, are genetically determined, and 

which if untreated, often produce mental 

retardation and/or fatal diseases. In some, such 

as PKU, the underlying enzymatic defects 

have been discovered, making possible early 

case detection, intrauterine monitoring of high 

risk pregnancies, and the genetic counseling of 

parents. Treatment by diet or enzyme 

replacement has actually prevented or reduced 

mental retardation and mortality in relation to 

some of these disorders, but many more such 

diseases await further research to arrive at 

similar results. 

 Down's syndrome (Mongolism) which 

involves disorders of the brain and other 

systems of the body. The discovery of the 

underlying chromosomal abnormality 

opened the way for appropriate marital 

counseling and testing needed to reduce the 

incidence; but continuing research is required 

in order to understand and prevent the 

underlying chromosomal deviations. 

 Kernicterus, and Rh incompatibility which 

damages the brain of the infant. Immunizing 

Rh negative mothers with Rh immune 

globulin during the first 72 hours after birth of 

the first child protects future children from 

kernicterus. 

 Hydrocephalus and commonly associated 

spina bifida. There may be brain damage as 

well as paralysis of the lower limbs without 

prompt surgery. A surgical shunt operation, 

which provides a drain for accumulating 

cerebrospinal fluids prevents intracranial 

pressure. 

Because mental retardation is a consequence of 

many factors and often is determinable only 

over an extended period of time, longitudinal 

studies are crucial. Recognizing this need, 

NINCDS has supported and conducted 

numerous prospective and retrospective 

longitudinal studies. These have pointed to 

several factors that retard intellectual 

development and have led to the detection of a 

variety of indicators of future retardation, and to 

the development of tests to measure these 

indicators. 

There is a need to continue such long-range 

studies, especially in relation to low birth-weight, 

nutrition and impoverished environments. 

Longitudinal studies, however, are expensive 

and difficult. They are particularly vulnerable 

to changes in research policies and funding. 

Protection of this type of research is of great 

importance. 

NINCDS plans to continue and to increase 

its research focused on neurological diseases and 

their psycho-sociological correlates. Although the 

mission is broad and basic it involves many of 

the root problems of mental retardation.

The National Institute of Child Health and 

Human Development was authorized by 

Congress in 1962, and has been assigned 

primary responsibility within the NIH for 

mental retardation research and training. Its 

broad mission is to contribute to the good 

health of all citizens through efforts to 

understand the many biological and behavioral 

factors related to human development, from 

conception through all the stages of life, and to 

promote optimal development. 

The establishment of the NICHD was 

hailed by the Kennedy Panel on Mental 

Retardation in 1962 as a focal instrument in 

carrying out its recommendations on research 

and scientific manpower. The 12 mental 

retardation centers which were established under 

P.L. 88-164 are supported in large part by 

NICHD. This conjunction of the Institute, the 

centers and the UAFs with which ten of the 

research centers are administratively allied, has 

created a unique and powerful approach to the 

prevention and amelioration of mental 

retardation. 

The collaborative effort: 1) recognizes the 

fact that fundamental research expressed in 

preventive and ameliorative practice is 

essential to progress, and 2) points up the 

necessity to utilize the best interdisciplinary 

talents, especially those bridging the gap 

between the biological 

171 
and behavioral fields. These concepts are 

fundamental to the organization and operation of 

NICHD and the key to its productive history 

of the past dozen years. Further aspects of 

research by the centers are discussed in Chapter 

12. 

NICHD responsibilities in this field are 

implemented primarily through its Mental 

Retardation and Developmental Disabilities 

Branch, a part of the Institute's Center for 

Research for Mothers and Children (CRMC). 

The Institute fosters a close working 

relationship among the different programs 

located in the Center—the Pregnancy and 

Infancy Branch, the Growth and Development 

Branch, and the Mental Retardation and 

Developmental Disabilities Branch. The 

Mental Retardation Branch also serves as the 

focal point at NIH for liaison with other 

agencies with interests in mental retardation. In 

addition to the mental retardation research 

centers, the Branch supports individual research 

projects. 

NICHD's Mental Retardation and Developmental Disabilities Branch focuses its 

research support on basic and clinical studies 

which contribute to techniques for prevention 

and amelioration of mental retardation. 

The institute has maintained strong interest in 

genetic problems. One aspect of this relates to 

the single gene disorder, of which errors of 

metabolism in general and PKU in particular are 

examples; while another aspect relates to 

chromosomal abnormalities of which Down's 

syndrome is the most notable. Reducing the 

incidence of these genetic deviations is a primary 

objective, together with the application of all 

effective methods of alleviation. Advances in 

genetics, cytogenetics, and obstetrics have now 

made intrauterine diagnosis feasible. A number 

of genetically determined disorders may now 

be identified by early fetal diagnosis, presenting 

the choice, with counseling, of termination or 

continuation of pregnancy. 

Maternal age is associated with Down's 

syndrome and other developmental abnormalities. 

Studies are attempting to determine the nature 

of the correlation of Down's syndrome 

incidence with advanced maternal age (35 

and over). NICHD initiated a national health 

education campaign to reduce the incidence of 

Down's syndrome, involving a series of 

pamphlets and holding a science writers' 

conference on the subject. 

The complex subject of nutrition and its 

effects on intellectual growth is another major 

concern of the Institute. It is increasingly clear 

that the effective reduction of the behavioral 

and intellectual effects of long term 

malnutrition requires combined socio-economic, 

educational and public health intervention, as well 

as innovative research approaches. 

The National Institute of Mental Health 

(NIMH), now one of the constituent institutes of the Alcohol, Drug Abuse, and Mental 

Health Administration, has supported research 

on mental retardation for over a quarter of a 

century. Although in the 1960's major 

responsibility for mental retardation was shifted 

to other Federal agencies, primarily NICHD 

and SRS, NIMH has continued to support 

selected studies in the area. Some of these 

projects deal directly with mental retardation; 

others have indirect or potential significance. 

Studies related to the prevention of mental 

retardation have focused especially on 

environmentally induced mental retardation 

among children and youth. 

172 
Other studies focus on the complex 

interrelatedness between mental retardation and 

emotional development. Early detection and 

accurate classification of retardation have been 

found to be key factors in successful treatment 

and rehabilitation. NIMH is supporting research 

to assess the capabilities of low-IQ children in 

order to differentiate better among them, and 

to determine the component factors which limit 

learning behavior, especially in relation to the 

objectives of educational programs. 

Longitudinal studies of the epidemiology of 

impaired competence are currently of special 

concern, especially in relation to sociocultural factors, the effects of classification and 

labeling, and other social-psychological 

problems in the management of deviant 

children. 

Another area of NIMH support is the 

training of mental health personnel in effective 

techniques for rehabilitating mentally retarded 

individuals. 

The Institute's research program in mental 

retardation, while not currently extensive, 

covers important and relevant investigations. 

Especially in basic research efforts, ranging 

from studies of the effects of environment on 

behavior to analysis of nervous system tissue, 

knowledge is accumulating that will result in a 

more thorough understanding of the 

phenomenon of mental retardation, and of ways 

to prevent it. NIMH devotes approximately $1 

million annually to research efforts with implications for mental retardation. 

Department of Agriculture (USDA) 

The USDA has no programs that are 

categorically directed toward retarded people. 

Nevertheless, at least three major operations 

provide direct or indirect benefits to mentally 

retarded persons or have an effect on the 

incidence of retardation. Other USDA 

programs aimed at relieving rural poverty 

affect those conditions in which socio-cultural 

retardation is likely to occur. The programs 

having most direct and identifiable effects are 

these: 

Agricultural Research Service. A variety 

of research programs with implications for 

mental retardation are carried on in the Human 

Nutrition Research Division. These have 

concentrated on protein deficient diets, trace 

elements in children and pregnant women, 

effects of the diet of pregnant women on 

developmental characteristics of children. The 

Consumer and Food Economics Division has 

studied differential phenylalanine content of 

fruits and vegetables in relation to diets of 

phenylketonuric children, and vitamin 

deficiencies in pregnant women. Cooperative 

State Research Service has assisted in nutritional 

and other research studies at State Agricultural 

Experiment Stations. 

Extension Service. As the educational 

arm of USDA, Extension Service provides 

educational assistance for adults and youth through 

the 52 land grant universities and the 3,150 

counties. 

Programs reach people through individual or 

group contacts, mass media, publications, direct 

mail, exhibits, etc. 

Extension Service home economics and 4-

H youth development programs are designed 

to serve the needs of families (adult and youth) 

at all income levels. Programs are adapted to 

meet different needs among the population, such 

as the different approaches required for 

mentally or physically handicapped individuals. 

Although specific data are needed to report 

accurately the extent to which Extension 

Service programs serve retarded young 

people, it is believed to be extensive. 

173 
Extension Service homemakers have 

volunteered time and effort to work with 

individuals in communities and in special 

schools for retarded children and youth. 

Financial assistance has been provided for 

equipment, furnishings, recreational equipment, 

and space. For example, Extension Service 

home economists in Rhode Island ARC over 

a six-months period conducted 20 classes on 

nutrition education, meal planning, etc. 

In one Georgia Community 16 Extension 

Service homemakers volunteer 100 hours per 

individual per year to work with mentally 

retarded individuals in a special school. 

4-H projects are part of 120 special education classrooms, 20 day activity centers, 12 

institutions and 12 organized 4-H clubs in 

Minnesota. New Jersey Teenage 4-H'ers have 

served as big brothers and sisters to 36 

neurologically impaired children at a State 

Senior Camp over the past two years. In 

Utah 20 4-H Clubs are active at the State 

Training School for the Mentally Retarded. 

Projects involving young people include 

gardening, raising animals, cooking, sewing, 

rock collecting, arts, nature study and home 

improvement. Texas has conducted 4-H 

programs for the mentally handicapped in 

personal grooming, recreation, care of pets, 

safety, shopping and creative arts and crafts. 

The examples represent a potential that 

could be greatly expanded, especially valuable 

in stimulating increased normal interaction of 

retarded youth in integrated community 

activities of young people. 

Food and Nutrition Service. A substantial 

number of retarded persons have received Food 

Assistance through USDA's Family Food 

Assistance Programs (Food Stamps and Food 

Distribution) which serve needy households. 

Child Nutrition Programs (School Lunch, 

School Breakfast, Special Food Service, 

equipment assistance, and Special Milk) have 

fed children in schools, day-care and special 

educational settings across the country. The 

1975 Amendments to the Child Nutrition 

Programs specifically extended these services 

to institutions for the mentally retarded. 

The Special Supplemental Food Program 

for Women, Infants and Children (WIC) of 

the Food and Nutrition Service began 

operations in January 1974. It is intended to 

provide suitable nutrition to pregnant and 

lactating women and their infants and children 

up to five years of age who might otherwise 

not receive it. Eligible participants must live 

in approved project areas, be eligible for free 

or reduced cost health care, and have been determined by a qualified staff member of a 

local health department to be at nutritional risk. 

The benefit received is a prescription food 

package containing nutrients lacking in the 

applicants' diets. With the assumption that 

nutritional deficiency may contribute to 

mental retardation, the program is viewed as 

potentially significant for the prevention of 

retardation. The 1976 budget is$250 million. 

The program is authorized to serve 830,000 

mothers and children and currently has 600,000 

enrolled. Present legislation will continue the 

program through September 1978. 

174 
The Department of Agriculture Food 

Assistance programs are an excellent example 

of the flexible use of generic public programs 

to serve the needs of special populations such 

as those who are mentally retarded on an 

equitable basis. The total Department effort in 

food and nutrition, housing and education 

which affects retarded people has increased 

rapidly since 1969. Such efforts must continue 

and expand to meet the need. 

Department of Commerce 

Three divisions of the Department of 

Commerce are involved in programs which 

affect retarded citizens. The Social and 

Economic Statistics Administration publishes 

a broad range of economic, social and 

demographic data. The Bureau of the Census 

has published data on persons receiving care in 

homes and schools for the mentally 

handicapped, on the number and characteristics 

of mentally retarded persons, and 

classifications of families with mentally 

retarded members by selected demographic 

characteristics. However, much information 

concerning mentally retarded citizens is 

lacking. The Economic Development 

Administration, Facilities Construction, has 

provided public works grants for a 

rehabilitation center in McMinville, Oregon, 

and for the National Children's Center in 

Washington, D.C. EDA is one among a 

number of potential sources of construction 

funding whose efforts should be coordinated 

with HUD in national and State planning for 

service development to meet the needs of 

retarded citizens. 

The National Bureau of Standards has 

developed analytic techniques for the detection 

of lead in paint and the control of the lead 

paint hazard in housing. NBS has also 

established a Fire Research Center which is 

conducting programs of basic and applied 

research in the biological, psychological and 

physiological factors of fire affecting human 

victims; initiated a program of Life Safety 

Systems funded by DHEW: and provided 

consultation on fire safety on projects involving 

disabled and mentally retarded people. There is 

great need to coordinate these studies with the 

program developments of HUD and other 

agencies in the provision of housing that meets 

appropriate standards of health and safety. 

Department of Defense 

The Defense Department's principal involvement in mental retardation is in providing general medical care to service 

personnel dependents—among them, a 

number of retarded children. 

Overseas schools for dependents usually 

include special education programs for mildly 

retarded children. Military members stationed 

overseas whose dependents are more 

moderately or severely retarded are 

encouraged to place them in appropriate care 

in the United States, rather than taking them 

overseas with them. 

Those on duty in the United States are 

expected to use available community resources for their retarded children. However, 

since most service members cannot qualify as 

residents for State services, the Civilian 

Health and Medical Program of the 

Uniformed Services (CHAMPUS) helps 

those on active duty defray the costs of such 

services. 

CHAMPUS assists in paying for diagnosis; 

inpatient, outpatient, and home treatment; 

training, rehabilitation, and special education 

services. Institutional or out-of-home care 

costs are defrayed in public or private nonprofit facilities except when a State purchases 

care for its citizens from a proprietary facility, 

or the covered costs are limited to inpatient 

treatment in a proprietary hospital, nursing 

home or similar facility. 

175 
The financial aid is on a sliding scale based 

on salary, with a deductible of from $25 up to 

$250. The Government then shares in the cost 

of a particular case up to $350 a month, with the 

member paying the remainder. 

CHAMPUS is now attempting to limit 

eligibility to only more severely disabled 

dependents, and to establish quality control 

over the services financed. Conditions 

generally classified as learning problems are 

being excluded. 

Among volunteer programs operated in 

conjunction with the Defense Department, 

though not Government-sponsored, is 

Children Have a Potential (CHAP). 

CHAP was started by interested individuals 

to help military families locate appropriate 

local services for handicapped dependents. 

Similar programs are underway in the Army 

and Navy. 

On practically all military installations there 

is a Health Benefits Counselor or CHAMPUS 

Advisor at the medical center who can 

provide information on CHAMPUS, 

CHAP or other services available for 

retarded dependents. 

Department of Housing and 

Urban Development 

The primary requisite for a decent and 

constructive life for a retarded person is a 

satisfactory place to live. The Department of 

Housing and Urban Development (HUD) 

has an important role to play in the current 

movement to find alternatives to either the 

family home or congregate institutional 

residence, especially for adult retarded citizens. 

The programs of HUD do not include 

categorical provisions for retarded people, but 

within the present authorization, especially in the 

1974 Housing and Community 

Development Act (P.L. 93-383) are 

important potentials for such services. They 

are now in a preliminary stage of 

development. 

An Assistant to the Assistant Secretary for 

Consumer Affairs and Regulatory Functions 

is responsible for monitoring Programs for 

the Elderly and Handicapped. (HUD has 

instituted a specific policy for hiring 

handicapped persons, including those who are 

mentally retarded. Numbers actually hired 

under this program are not known.) 

The Block Grant Program authorizes 

grants to metropolitan cities and urban counties 

for meeting community needs in planning, 

housing and development. Plans must estimate 

the needs of elderly and handicapped persons, 

including provision of the necessary activities 

for mentally retarded persons that normally 

are included in a comprehensive service 

delivery system. 

Section 232 of the Housing Act provides 

for mortgage insurance for the "development, 

construction, renovation or replacement" of 

facilities for those who need long-term 

nursing care and for those "who, while not 

needing nursing care and treatment 

nevertheless are unable to live fully 

independently and who are in need of 

minimum but continuous care provided by 

licensed or trained personnel." This would 

include group homes for moderately to 

severely retarded persons. 

Under the 701 Program of the Housing Act, 

"Grants may be made to States, large cities, 

urban counties, metropolitan clearinghouses, 

Councils of Government, Indian Tribal 

Councils ... for planning assistance that cannot 

otherwise be met." Grants would include the 

planning, not the construction of a wide 

range of services and facilities appropriate to 

mentally retarded citizens. 

The Community Design Research Program and the Office of Equal Opportunity 

and Special User Research Program are coordinating their efforts pertaining to housing 

problems of elderly and handicapped persons. 

The possible scope of relevant research is wide 

enough to cover the numerous residential 

options desirable for those who are retarded in 

varying degrees. 

176 
The New Communities Administration 

provides mortgage guarantees for the creation 

of new communities which meet stipulations 

insuring balanced environments, including 

conditions which facilitate the free 

movement and self-sufficiency of those 

who are elderly and handicapped. 

Section 231 of the original Housing Act 

provides assistance in the form of insured 

market-rate loans to non-profit, profit-motivated 

or public agencies for the construction or 

rehabilitation of rental housing for the elderly 

and handicapped. 

Section 202 of the Housing Act of 1959, as 

amended by the Housing and Community 

Development Act of 1974, provides direct, 

long-term loans (40 years) to private, nonprofit sponsors for the construction or 

rehabilitation of rental housing for the elderly 

or handicapped. 

To date, attention has focused primarily on 

housing for the elderly, and secondarily, for 

the physically handicapped. Discussions on 

having a fair allotment of housing for 

mentally retarded and developmentally 

disabled persons have led to the suggestion 

that HUD set aside a certain percentage of all 

housing built for the elderly to be accessible to 

handicapped or mentally retarded persons. This 

suggestion was put aside for fear the 

handicapped would be isolated with the elderly 

in inappropriate settings. HUD has been 

encouraged to recognize the full age and 

disability range of people with mental or 

physical disabilities and their need for social 

integration. 

Currently HUD is considering earmarking 

a specific allotment of funds within Section 

202 to be set aside for application to 

handicapped persons including those mentally 

retarded and developmentally disabled. HUD 

has now added a representative of the 

developmentally disabled group, which 

includes mentally retarded persons, to the 

panel which reviews applications for 202 funds. 

Current information indicates that as of 

December 1975, construction under this 

section for occupancy by mentally retarded 

persons has been limited to some group homes 

in Michigan. 

Section 8 is an example of the failure of 

coordination between government 

departments which results in nullifying 

legislative intent. Section 8 of the 1974 

Housing Act provides a rent subsidy or 

"housing assistance payments" for low income 

groups, including handicapped individuals. 

Many low income retarded adults are 

recipients of Supplemental Security Income 

(SSI) administered by the Social Security 

Administration of HEW. The regulations 

governing eligibility for SSI payments and 

for HUD's Section 8 housing assistance both 

involve consideration of "unearned income" 

and have the net effect of cancelling each 

other out! That is, SSI assistance is 

unearned income so far as Section 8 is 

concerned, and housing assistance is unearned 

income so far as SSI regulations are concerned, 

each making the individual in need ineligible 

for the other. This "Catch-22" dilemma is 

well understood by both HUD and HEW but 

as of present writing (February 1976) a 

solution has not yet been found. Legislative 

proposals have been advanced to resolve it. In 

the meantime, Section 8 housing assistance is 

not available to many low income mentally 

retarded adults.

Department of the Interior 

The Bureau of Indian Affairs is the main 

component of the Department of the 

Interior that administers and allocates 

resources of direct benefit to mentally 

retarded persons. These are divided 

between the Social Services and the Office 

of Education Programs. The former 

includes arrangements for the protection and 

care of dependent, neglected and 

handicapped children, planning for 

adoption and securing appropriate 

institutional care when these services are not 

available from established child welfare 

agencies. 

177 
During FY 1974, the Bureau provided for 

institutional care for a monthly average of 

379 retarded Indian persons at a cost of $1.5 

million ($11 per diem). The Division of 

Social Services has cooperated with the 

Office of Education Programs and the 

Indian Health Service in establishing evaluation 

criteria and test instruments appropriate to 

reservation Indian children. 

The Educational Services of BIA are 

funded in general on the basis of a pupilteacher ratio of 30-1. Since adequate special 

education services for retarded children 

require a much lower pupil-teacher ratio, 

they are more expensive, and there is no 

categorical funding available. Hence, special 

education classes can be conducted only at the 

expense of general education classes. The 

result is that virtually no special education 

classes have been established on the basis of 

BIA funding alone. 

However, the Bureau receives a small 

fund from BEH in the Office of Education for 

pilot programs ($240,000 from Title VI in FY 

74 and $970,000 from P.L. 93-380 in FY 

75). It also receives Title I funds from the 

U.S. Office of Education. About 7% of these 

funds ($1.3 million in FY 1974, $1.5 million 

in FY 75) were used in special education for 

handicapped and mentally retarded children. 

There is urgent need to include realistic ratio 

provisions in BIA Educational Services to 

achieve equal educational opportunity. The 

cultural factors indigenous to the Native 

American communities must also be 

carefully considered in the development of 

special education programs. 

The Department of the Interior also 

provides indirectly for mentally retarded 

citizens by emphasizing the use of its programs 

by handicapped persons, under statutory 

provisions regulated by the Civil Service 

Commission. 

Department of Justice 

Three organizational units of the Department of Justice involve programs affecting retarded citizens. 

1. Law Enforcement Assistance 

Administration assists States and localities by 

making grants for the improvement of their 

criminal justice systems. The National Institute 

of Law Enforcement and Criminal Justice 

makes grants for research and demonstration 

projects relating to improvements in the 

criminal justice system. Both of these 

activities are potentially of great importance to 

mentally retarded citizens to assist in correcting 

the abuses and inadequacies now current in the 

handling of mentally retarded persons who 

become involved in the criminal justice 

process. 

2. The Bureau of Prisons supervises Federal correction institutions and community 

treatment facilities and has, therefore, responsibility for mentally retarded persons who 

may be charged with or convicted of Federal 

criminal offenses and placed in the custody of 

the Attorney General. There is need to 

develop national policies on: (1) adequate 

protection and treatment of those who have been 

charged but not convicted, either because of 

incompetency to stand trial or because charges 

have been dismissed; (2) alternative treatment 

that will be habilitative rather than merely 

punitive for those convicted; and (3) 

diversionary programs to keep mentally 

retarded persons, at risk for crime and 

delinquency, out of the criminal justice system 

and into more constructive paths. 

3. On September 1, 1974, the Civil Rights 

Division created the Office of Special 

Litigation to operate its litigation program to 

protect the constitutional rights of children and 

mentally and physically handicapped persons 

of all ages, including mentally retarded 

persons. The Office as of December 1975 is 

litigating in 17 cases concerning these classes 

of persons, nine of which concern the 

constitutional rights of mentally retarded 

persons. 

178 
The Office has filed suit against two State 

facilities for the mentally retarded based on the 

Attorney General's authority to sue for relief 

of "serious and widespread" deprivation of 

rights. In United States v. Soloman, et al. 

(D. Md.), the Office alleges that officials at 

Rosewood Center at Owings Mills, Maryland 

have failed to recruit and train adequate staff, to 

provide a safe residential environment and to 

provide a realistic habilitative program 

designed to meet the individual needs of 

Rosewood residents. United States v. 

Kellner, et al., (D. Mont.) alleges failure to 

provide care, treatment, training and education 

to residents in Boulder River School and 

Hospital at Boulder, Montana. 

The United States, represented by the Office, 

intervened in North Carolina Association 

for Retarded Children v. North Carolina 

(E.D. N.C.), involving four State institutions 

and the right of all mentally retarded persons of 

school age to free public education. In 

Halderman and the United States v. 

Pennhurst, et al., (E.D. Pa.), the United 

States charges that Pennhurst State School in 

Spring City, Pennsylvania fails to provide its 

1,450 mentally retarded residents with adequate 

care and treatment programs, decent living 

conditions and sufficiently trained staff to 

insure their constitutional right to be free from 

harm. The Office intervened in Horacek v. 

Exon, (D. Neb.) involving Beatrice State 

Home in Nebraska and negotiated a consent 

decree which currently awaits signature by 

the judge. 

The Office of Special Litigation in its 

cases has acted to assist the court in the 

evaluation of particular institutions via 

presentation of expert testimony, data analysis 

and factual evidence pertaining to the issues of 

the case. The United States was a litigating 

amicus curiae in Wyatt v. Stickney, 344 F. 

Supp. 373 and 387 (M.D. Ala. 1972), affd 

sub nom, Wyatt v. Aderholt, 503 F. 2nd 

1305 (5th Cir. 1974) in which the Fifth 

Circuit Court of Appeals unanimously 

confirmed the constitutional right to 

treatment. As litigating amicus curiae in 

N.Y.S.A.R.C. and Parisi v. Carey 

(E.D.N.Y., 1975) the United States secured 

relief for the mentally retarded residents of 

Willowbrook Developmental Center via 

consent decree. Willowbrook is the largest 

facility for mentally retarded persons in the 

country.

The Office of Special Litigation represents the United States in all litigation to 

protect the civil rights of mentally retarded 

persons. 

Department of Labor 

Two major divisions of the Department of 

Labor are actively involved in programs 

affecting mentally retarded citizens. Since the 

Department is charged with administering and 

enforcing statutes designed to promote the 

welfare of wage earners in the United States, 

only those retarded persons who acquire a 

wage earning status come under the 

Department's concern. 

1. The Employment Standards Administration (ESA) is involved with mentally retarded workers through the Wage and Hour 

Division, Branch of Handicapped Worker 

Problems and Child Labor Branch, and 

through the Handicapped Workers' Task Force, 

responsible for administering Section 503 of 

the Rehabilitation Act of 1973. 

179 
The subminimum wage certification programs 

of ESA are designed to protect employment 

opportunities for handicapped workers by 

permitting them to be employed at wages lower 

than the minimums applicable under the Fair 

Labor Standards Act, but commensurate with 

those paid nonhandicapped workers on the basis 

of productivity. (The following figures are 

estimates since no exact counts are kept on specific 

disabilities of handicapped workers.) 

Approximately 60,000 mentally retarded 

workers were employed by sheltered 

workshops certificated in fiscal 1975 and about 

1,250 employed under certificate in competitive 

employment; about 2,500 temporary certificates 

were issued through State DVRs to on-the-job 

trainees. The vast majority of over 8,700 mentally and physically handicapped students 

certificated for school-work programs were 

mentally retarded. About 250 mentally retarded 

persons were certificated under a special 

program for training workshop clients in 

industry. Approximately 30,000 sick, aged, 

mentally ill and mentally retarded patients 

working in hospitals and institutions are 

certificated, with the mentally retarded probably 

constituting the largest group. 

A Work Experience and Career Exploration 

Program (WECEP) is conducted by ESA in 

cooperation with the education departments in 

several States. Designed for potential dropouts, 

it includes some handicapped youngsters. 

The Office of Employment Standards for 

Handicapped Workers is responsible for 

ensuring that government contractors and 

subcontractors make reasonable accommodation to the physical and mental 

limitations of workers, in all employment 

practices. It is also responsible for Section 503 

requiring equal opportunity in the employment 

of the handicapped. 

Despite these provisions, it remains extremely difficult for retarded individuals 

identified and trained as such to obtain appropriate 

employment in the general community. It is 

difficult for workers certified under special 

training and work programs to change status. 

Employers are reluctant to include individuals 

labeled mentally retarded within their "quotas" 

of handicapped persons, and when they do include 

them for purpose of compliance with equal 

opportunity laws, they are reluctant to 

"normalize" their status and replace them with 

newly hired handicapped persons. 

A recent study of the role of sheltered 

workshops in the rehabilitation of severely 

handicapped persons undertaken by 

Greenleigh Associates for DHEW, shows how 

few individuals with more than mild retardation 

are employed. Mildly retarded persons seem far 

more likely to obtain steady employment if 

they are not identified, labeled and trained under 

categorical programs than if they are. 

Traditionally, and still today, the great majority 

of mildly retarded adults simply disappear 

into the work force. They constitute, however, 

a marginal fringe most vulnerable to layoffs 

and other social and economic hazards. 

Paradoxically, identification and training could 

alleviate these problems. 
2. Manpower Administration formulates 

and executes the nation's manpower policies, 

national programs, and systems; administers 

the manpower special revenue sharing 

program among the States and prime sponsors 

(cities and counties of 100,000 population or 

more) in local programs of work training, 

work experience, and public service 

employment, with special emphasis on the 

needs of the disadvantaged, unemployed, and 

underemployed; administers apprenticeship, 

employment security, residential institutional 

training and related programs. Mentally 

retarded persons who meet the criteria of 

employment status and disadvantage fall 

within the Manpower Administration's 

mission. 

The Office of Manpower Development 

Programs (OMDP) includes handicapped 

persons in all of its programs without categorical identification. In fiscal year 1974, 2.8 

percent (1,613) of those served in the 

Neighborhood Youth Corps out-of-school 

program were handicapped; as were 12.8 

percent (5,286) of the participants in Operation 

Mainstream, which provided work and 

training opportunities for low income adults in 

rural areas and small communities. 

Approximately 8,850 (17.6 percent) 

handicapped persons were enrolled in the 

MDTA training programs for underemployed workers, 1,113 (4.4%) and 4,674 

(11.4%) respectively in JOBS and JOBS 

Optional programs functioning in private 

business. Ten percent of those in the Public 

Service careers program were handicapped, 

while 3,990 individuals with handicaps were 

included in the Public Employment Program. 

The WIN program, which provides 

manpower and social services, including 

training and job placement to recipients of 

AFDC, does not require participation by 

those who are mentally or physically incapacitated, but nearly 33,000 did so voluntarily—8.6 percent of the total. Numbers of 

mentally retarded in these programs are not 

available. 

The Comprehensive Employment and 

Training Act (CETA) is also administered 

by OMDP. Under this Act, the Secretary of 

Labor makes block grants to about 500 State 

and local units of government, the prime 

sponsors under the Act. Various programs 

related to identified manpower needs by the 

prime sponsors are then developed. These may 

include institutional training, on-the-job 

training, Operation Mainstream, 

Neighborhood Youth, public service careers, 

Job Corps and the Concentrated Employment 

Program. The goal of CETA programs is to 

encourage and develop the employment 

potential of disadvantaged, unemployed and 

underemployed individuals to enable them 

to become self-sufficient, contributing participants in the economy. It constitutes, therefore, a 

promising resource to mentally retarded 

individuals. 

Handicapped people have not been well 

represented in CETA programs, however. 

As of September 30, 1975, of the new participants in Title I, which includes work 

experience and on-the-job training, only 5.7% 

were handicapped. Of those in Titles II and 

IV, public service employment, only 2.7% 

and 2.4%, respectively, were handicapped. 

Mentally retarded participants would be a 

fraction of all the handicapped persons served. 

It seems apparent that the promise of CETA 

for retarded individuals has not been realized. 

181 
A contract was signed in 1974 with the 

National Association for Retarded Citizens to 

provide through subcontracts in 32 States for 

on-the-job training for 1,867 mentally retarded 

workers. 

Several R and D projects are funded by the 

Office of Policy, Evaluation, and Research 

dealing with employment related problems of 

mentally retarded citizens. Typical of these is 

a grant to the State of Wisconsin to test the 

operation of a sheltered workshop within the 

State's Civil Service System. Synectics 

Corporation is preparing a handbook to aid job 

placement and counseling personnel in making 

appropriate jobs available to persons having 

only basic or minimal skills. Project Volunteer Power has completed a three-year effort 

to demonstrate ways in which local volunteers 

can aid physically handicapped, mentally 

retarded and mentally restored persons in 

finding employment. 

The Employment Service (USES) of 

Manpower Administration assists States in 

maintaining 2,400 local employment offices. 

Their services include job placement, 

counseling and special services to youth, 

women, older workers and handicapped 

persons. Statistics for fiscal year 1974 show a 

total of 819,087 new and renewal applications 

of handicapped job-seekers of whom 34,600 or 

4.2% were mentally retarded. The total 

placement of all applicants was 26%; but for 

mentally retarded applicants, 36% or 

approximately 12,500 were placed. 

Services of USES are enhanced by use of 

computerized Job Bank, Job Matching and 

Job Development Systems. Cooperative 

working relationships are maintained between 

USES and vocational rehabilitation agencies. 

New guidelines were issued in fiscal year 

1975. 

The Employment Service staff serving 

the handicapped have worked closely with the 

new Office of Compliance for the Rehabilitated Handicapped in ESA, to provide 

technical assistance in the problems of 

serving and employing handicapped job 

seekers. In December 1974, a new interviewing guide on mental retardation was 

published, which puts less emphasis on medical 

aspects of retardation and more on job-related 

training and independent living skills. There is 

also an expanded section on aptitude testing.

Despite these efforts to upgrade the quality 

of service to the mentally retarded, a 

significant decline has occurred in the number 

of applicants served and the proportion placed 

in 1975. As compared to 1974, the total 

number of handicapped applicants increased to 

906,000, while the number of retarded applicants 

decreased to 24,000. The number of retarded 

persons placed dropped from 36 to 28% or 

from 12,500 to 6,800 individuals; while the 

proportion of all applicants placed dropped 

from 25 to 20%. The placement declines can 

be attributed to the economy, but the drop in 

the number and proportion of mentally 

retarded applicants, in the face of upgraded 

procedures, is not accounted for. It is possible 

that many individuals formerly identified as 

mentally retarded are no longer so labeled. 

182 
Department of Transportation 

Mass transportation between residence and 

work or service facilities is frequently one of 

the most difficult problems for the retarded 

person, in rural as well as urban areas. The 

problems of bringing client to service or 

service to client are formidable. 

The Urban Mass Transportation Administration (UMTA) administers several major 

programs which can assist in meeting the 

transportation needs of the handicapped, 

including the retarded. UMTA's planning 

assistance program makes available financial 

resources which may be used to study needs 

and suggest appropriate solutions. The capital 

assistance program can provide funds to assist 

in the acquisition of suitable vehicles and 

facilities. The demonstration program provides 

financial assistance for projects, limited in 

number, to employ or test new services, 

methods, and techniques. The Federal share for 

planning and capital assistance projects is 80%. 

For demonstration projects, the Federal share 

varies depending on the nature of the 

demonstration. 

The Federal-Aid Highway Act of 1973 

contained provisions which allowed 

UMTA, for the first time to make grants to 

private nonprofit organizations for the 

purchase of equipment to meet the transportation needs of handicapped and elderly 

persons in areas where regular services are 

unavailable, inappropriate, or insufficient. 

In November 1974, Section 5 of the Urban 

Mass Transportation Act of 1964 was 

amended to provide funds for urbanized areas 

to be used for transit capital and operating 

assistance projects. Under this program, funds 

are apportioned by formula to all urbanized 

areas and programmed at local discretion for 

eligible capital and operating assistance in an 

annual program of projects. Section 5 funds 

can be used to cover 80% of capital project 

costs and up to 50% of operating project 

expenses. 

The problems of transportation for the 

retarded in rural areas present greater difficulty 

under present statutory authority. 

In addition to the provisions of UMTA, 

the Department of Transportation is currently 

authorized to undertake activities in relation to 

the needs of the retarded under programs for 

improvement of transportation safety and for 

research and development. The following 

units are in some degree involved: 

Office of Environmental Affairs. This office is concerned with reducing adverse 

social environmental effects of transportation 

and increasing beneficial effects. Reduction of 

lead emission into the air is an objective with 

bearing on the incidence of mental defect. 

Office of Personnel and Training. The Office of Personnel and Training has developed 

an employment program aimed at creating 

and increasing an awareness of the abilities of 

handicapped citizens to perform in a variety of 

positions with the Department. The program 

currently operates on two fronts: (1) 

encouraging supervisors and managers to 

consider otherwise qualified handicapped 

applicants (especially the mentally retarded), 

and (2) finding and assisting in the selection and 

appointment of handicapped applicants for 

appropriate positions in all components of the 

Department. While the Department states that 

a number of mentally retarded persons have 

been employed successfully, no detailed information is available. 

Technology Sharing Office. This office 

plans, coordinates and implements a program 

of technical assistance to State and local 

governments in the areas of transportation 

systems planning and technology. In 1974 the 

Office issued a document focusing on the role 

and promise of demand responsive bus systems. 

These systems could constitute an effective 

means of meeting the extremely critical 

transportation needs involved in service 

delivery to mentally retarded individuals. 

The Office is currently drafting a document 

addressing the 

183 
special needs of persons with limited mobility 

living in rural environments. 

Office of Highway Safety. Among the efforts to promote highway safety, the Office 

developed a program directed toward 

providing uniform application of control 

devices which have simple, clear meanings; 

the use of symbol signs, for example, should be 

more understandable to the mentally retarded. 

For the mentally retarded, most of whom do 

not drive, this has significance only if 

combined with measures to improve 

pedestrian safety especially for those with 

limited mobility. This will aid mentally 

retarded persons provided their special needs 

are carefully studied and implementing 

technology developed. 

The Transit and Traffic Engineering 

Branch directs its efforts to the improvement 

of urban and rural transportation services and 

facilities. It provides funds to local and State 

applicants for demonstration programs of 

rural highway public transportation and 

encourages applicants to consider the special 

needs of handicapped persons including those 

who are mentally retarded. Imaginative 

planning for transportation services to the 

sparsely settled rural areas, the Great Plains, 

and the Indian reservations, for example, could 

combine new technologies of communication 

with new systems of transportation to bring 

services and people together. This 

achievement would overcome the chief 

obstacle to service provision for retarded 

citizens and others in isolated areas. 

The Office of Driver and Pedestrian Programs has initiated efforts which could be of 

value to the retarded through provision of 

guidelines and assistance to States for traffic 

safety activities. Projects which respond to the 

needs of mentally retarded individuals include 

curriculum guides with instructor workshops 

leading to mentally retarded students becoming 

licensed drivers; modifying kindergarten 

through grade 12 traffic safety education 

materials to meet the special needs of those 

who are mentally handicapped; audio-vidual 

aids in traffic safety education for mentally retarded children; construction of a driving 

range for mentally retarded students. The full 

possibilities of this area of service are only at 

initial stages of development. 

The Office of Driver and Pedestrian Education and Licensing. The charge to research, 

develop, test and evaluate safety program 

curricula and training techniques is of concern 

to administrators of programs for mentally 

retarded students. Audio techniques are being 

developed for disseminating driver 

knowledge and license testing for functionally 

illiterate populations. There is also need for a 

well-designed study of the skills and judgment 

required for driving, and the development of 

training techniques to teach these skills to 

mentally limited persons. 

Executive Agencies of Government 

In addition to the foregoing Departments of the Executive Branch of the 

Federal Government, a number of independent Executive agencies conduct programs that affect the problem of mental 

retardation and the needs of mentally retarded 

citizens. 

ACTION 

ACTION was established in 1971 as the 

Federal advocate of voluntary citizen activity at home and abroad. Among its programs are the Peace Corps, Volunteers in 

Service to America (VISTA), the Foster 

Grandparent Program (FGP), the Retired 

Senior Volunteer Program (RSVP), the 

184 
Senior Companion Program (SCP) and 

University Year for Action (UYA). They 

are divided between the Office of International Operations and the Office of Domestic and Anti-Poverty Operations. 

Domestic programs relating to mental retardation are all in the latter organizations. 

The Foster Grandparent Program not 

only brings needed love and individual attention to children, but also provides lowincome older Americans with meaningful 

activity and satisfaction in their retirement years. 

Each Foster Grandparent receives a modest 

stipend and devotes two hours a day to each 

of two children assigned to them. They serve 

in schools, day care programs, correctional 

settings, pediatric wards of hospitals, 

institutions for the mentally retarded, and 

other childcaring facilities. Of the 

approximately 13,000 Foster Grandparents 

currently serving, approximately 58%, more 

than 7,500 serve in 203 mental retardation 

settings, caring for 15,000 retarded children. 

Although by statute this service is limited to 

children (to age 21), regulations make it 

possible to continue service begun in 

childhood to ages beyond 21 for retarded 

individuals. 

Recent regulations recognize the importance 

of this program for mentally retarded persons. 

Sponsoring agencies are now required to 

provide such services to children with special 

or exceptional needs, such as mentally 

retarded children. 

The Senior Companion Program provides 

opportunities for low-income older Americans 

to serve adults with special needs, with 

particular attention to other older persons 

living in their own homes, nursing homes and 

institutions. It is designed to mitigate the 

need for more restrictive types of residential 

settings for those needing some degree of care. 

By December 31, 1974, there were 800 

volunteers in this program, with an estimated 

5% serving mentally retarded people. The 

volunteers receive a small stipend for their 

service. As a supplement to the Foster 

Grandparent program which has proven of 

great value to retarded children, it is hoped that 

the Senior Companion program can be greatly 

expanded to serve adult retarded persons of all 

ages. 

The Retired Senior Volunteer Program 

has no income qualification and no remuneration, but is limited to citizens aged 60 and 

over. They are provided out-of-pocket 

expenses such as transportation (or a hot meal 

where feasible) and serve a minimum of five 

hours a week. In 1974, over 120,000 RSVP 

volunteers served in a wide variety of settings, 

as diverse as the interests and experiences of 

the volunteers themselves. Although accurate 

data is lacking, it is estimated that 3% or about 

3,600 are serving in mental retardation settings. 

VISTA volunteers provide full-time 

service to local communities, attacking 

poverty-related problems identified by the 

community. They serve for one year and are 

maintained at subsistence level through an 

allowance provided by ACTION. The 

sponsoring organization provides transportation 

and other necessary emoluments. Of a total of 

4,300 VISTA volunteers, 400 are providing 

services and assistance to retarded citizens in 

39 projects. 

University Year for ACTION is a servicelearning program for full-time student volunteers involved in anti-poverty activities in 

local communities. Projects are sponsored by 

colleges and universities which allow credit to 

the student. Approximately 1,900 UYA 

volunteers are now serving, of whom about 87 

are involved in 31 projects serving mentally 

retarded children or adults. 

185 
Youth Challenge Program is designed to 

test the full range of part-time volunteer 

service models for young people, 14 to 21, 

serving poverty communities. As of this 

report, 25 projects had been initiated, with an 

indication that a number of project sponsors 

will provide services to mentally retarded 

citizens. 

Extensive liaison between voluntary citizen 

organizations, such as NARC and its State and 

local units, and the programs of ACTION 

could greatly expand the common objective 

of each in serving mentally retarded citizens. 

Civil Service Commission 

The U.S. Civil Service Commission as 

part of the government's selective placement 

responsibilities has established a program to 

provide full employment opportunity for 

mentally retarded persons in Federal agencies. 

The program encourages agencies to 

determine which jobs could be performed by 

retarded individuals, and then helps 

rehabilitation agencies to recruit and place 

applicants. 

In 1963 the Commission established a special 

appointing authority permitting a retarded 

person to be appointed to a position without 

the usual competitive examination, a 

rehabilitation counselor's certification being 

sufficient. In the succeeding ten years over 

7,500 such appointments were made, with 

more than 50% still employed by the 

government. In 1968 the Commission 

established the Worker-Trainee Examination 

designed for people with limited work 

experience. No written test is required; and 

appointments are made at entry level. Many 

retarded persons have been appointed from this 

examination, with placement assistance from 

vocational rehabilitation counselors who 

determine eligibility under the Federal selective placement program for mentally retarded persons. 

While these steps have had positive results 

in opening government employment 

opportunity to mentally retarded persons, there 

are limitations. In complying with Federal 

regulations regarding affirmative action in 

employment of the handicapped, some 

agencies have hired very few retarded 

persons. Special certification for 

employment may open the way to a job but 

it also can stigmatize the employee and restrict 

opportunities for advancement or merit. 

Agencies in many cases have made an 

honest effort to give the citizen of limited 

endowment a chance to earn a living. But on 

the whole, there has been much windowdressing and more complacency than is 

consistent with avowed objectives. 

National Aeronautics and Space Administration 

Through the Biomedical Applications 

Program of the Technology Utilization Office 

NASA makes its aerospace technology, 

techniques and management methods available 

to solve problems related to the delivery of 

health care and medical research. Two 

Biomedical Application teams work directly 

with institutions responsible for the care and 

training of the mentally retarded. 

The Research Triangle Institute Team has 

developed a new method of attaching 

electrodes for EEG examinations of disturbed 

and severely retarded children. This employs 

a cap made from a stretchable polymer, with 

specially contrived electrodes attached and 

held firmly against the skin. 

The Southwest Research Institute Team 

devised a nocturnal activity monitor which 

will record the activity of gross bodily 

movements of retarded individuals during 

sleep. It is being used in developing improved 

routines for rest/activity cycles in group living 

situations at various institutions for the 

retarded. The Southwest Team has also 

developed a rate monitor for self-injurious 

behavior. This is a device for the 

instrumentation of behavior modification 

techniques to suppress self-injurious behavior—

such as head pounding—in severely retarded 

individuals. 

186 
Such projects indicate the almost unlimited 

and unexploited possibility of applying modern 

technology—especially through 

miniaturization techniques in information 

management, communications, biofeedback, 

and many other applications—to compensate 

for intellectual limitation in mentally retarded 

citizens. 

NASA also has an affirmative action program to hire mentally retarded persons within 

the general category of handicapped persons. 

National Science Foundation 

The NSF Directorates of Research and 

Research Applications support many 

projects of importance to mental retardation. 

Conservatively estimated, about $4 million 

was awarded by The Foundation for such 

activities in 1974. Some examples in various 

programs follow: 

The Psychobiology Program includes 

basic studies of perception, memory and 

problem-solving and other human cognitive 

processes. Studies of psychological 

development involving genetic and environmental influences are being pursued, with 

complementary information from studies of 

animals and humans. 

The Social Psychology Program includes a 

field investigation of reactions toward stigmatized persons, physically or mentally 

handicapped. 

The Linguistics Program includes studies 

of the specific language capacities of mentally retarded persons (e.g., a longitudinal 

study of the speech of Down's syndrome 

children), and the sources of language deficits, 

be they linguistic (codes used) cognitive, 

socio-culture, or physical. The speech of 

disadvantaged groups has been studied to 

determine more about the social structure of 

language and the role of the socio-cultural 

environment. The indication is that what are 

often taken to be language deficits, indicating 

cognitive deficiency, are better explained as 

cultural differences. Other projects with deaf 

and visually handicapped persons have 

implications also for mental retardation. 

The Neurobiology Program conducts a 

great deal of research relevant to mental 

retardation. One of current interest involves 

the hazards of methyl mercury pollution, a 

toxic substance that penetrates both the bloodbrain barrier and the placental barrier with 

severe neurological consequences. There are 

on-going studies of the biochemistry of 

epilepsy and seizure-propensity, and nutrition 

and nutritional deprivation and their impact on 

the brain and behavior. 

Adequate funds for research are fundamental to NSF's continued contribution to this 

problem. It is especially important to carry 

through long-range investigation and 

longitudinal studies and to recognize mental 

retardation and other forms of developmental 

disability as an area of national concern. 

President's Committee on Employment 

of the Handicapped 

The President's Committee on Employment of the Handicapped (See chapter 5) has 

been actively promoting employment of 

retarded persons as an integral part of its 

efforts since 1960. Within PCEH there is a 

standing committee on the Mentally 

Handicapped. The goals and objectives of this 

Committee focus on the needs of retarded 

people as related to employment. 

The Committee has practiced an affirmative policy on employment of the retarded within its limited resources. Model 

policies have been developed and shared with 

all levels of government—State, county and 

local, and are steadily being adopted. 

187 
Included among activities of PCEH are: 

mass media promotion, such as magazine 

articles, radio and television public service spot 

announcements, conferences on employment 

of the retarded, speeches before groups of all 

kinds, exhibits and demonstration projects. 

PCEH publications are distributed widely. 

Among these are Guide to Job Placement of 

the Mentally Retarded, Jobs and Mentally 

Retarded People, How to Get a Job 

(written for retarded persons) and How the 

Retarded are Trained for You. These 

publications are reinforced through a monthly 

Newsletter and frequent Special Reports. 

PCEH, in cooperation with the U.S. Employment Service, has encouraged the development of a special edition of the 

Dictionary of Occupational Titles to include 

jobs which retarded persons can perform. A 

manpower grant has been approved and the 

project is well underway. 

The Committee is currently regionalizing 

its field staff. The first region to have a 

regional PCEH representative is Federal 

Region IV (Atlanta). The major objective 

of the experiment will be to strengthen 

volunteer involvement at all levels of activities to promote employment of handicapped people. The employment of retarded 

people will be a top priority. Continuing 

cooperation with NARC units is necessary 

for success of the experiment. 

Postal Service 

The U.S. Postal Service has a long and 

noteworthy record of hiring mentally retarded persons in positions for which they 

qualify. These positions are made available 

under a special program which requires 

certification of employability by a State 

vocational rehabilitation official. The procedures are essentially those outlined and 

authorized by the Civil Service Commission 

and are in conformity with the Rehabilitation 

Act of 1973. In fact, the Postal Service 

provided procedures for hiring retarded 

persons in February 1964, and had by 1975 

hired 2,058 mentally retarded employees. 

Recent union agreements now divide the 

work force into two groups: regular (career) 

employees and supplemental (casual) 

employees. 

The retarded employee who is not already 

in career status, and the retarded applicant for 

employment are termed casual employees 

under the following conditions: the union 

agreement provides that handicapped 

individuals can qualify for a special 

employment register made up of persons 

certified by their State vocational rehabilitation 

agencies as being suitable for Postal Service 

employment. A Postal Service hiring authority 

may select a retarded person from such a 

register. The retarded person is allowed two 

90-day tours of duty plus an additional 21 

days for the Christmas holidays, as is the case 

with any other casual employee. If his work is 

satisfactory and a position is available, the 

Postal Service hiring authority may then 

select him for a career employee status after 

180 days of casual status employment. 

(Veterans have priority.) 

If job opportunities are limited, the 

readiness to hire retarded persons rests significantly with postmasters and other hiring 

authorities. 

Small Business Administration 

SBA's basic mission, as mandated by the 

Congress in the Small Business Act of 1953, 

"is to aid, counsel, assist, and protect" the 

nation's small businesses. Such assistance 

includes 19 kinds of financial loans, 

management and technical assistance, the 

procurement of government contracts, and 

legislative advocacy to assure small business 

of fair treatment in government programs and 

policies. 

188 
Within that structure, assistance to the 

mentally retarded is incorporated in the 

program for the physically handicapped, 

which was instituted in November 1973. In 

that program, small businesses owned by 

handicapped persons, whether new or existing, 

are eligible for a maximum of $350,000, up to 

a 15-year term, and at an interest rate appropriate 

to the market rate under the SBA "guaranty" 

program, which means that a bank would be a 

participant together with SBA. 

The same rules apply to public or private 

non-profit organizations employing the 

handicapped, such as sheltered workshops, 

providing the funds are used only in the 

production or provision of goods and services. 

Previous to November 1973, such 

organizations were not eligible for such loans. 

A "direct" loan, i.e., entirely government 

funds, may be obtained at 3% interest, but is 

limited to $100,000. 

Such loans can be applied for in any one of 

100 field offices throughout the United States. 

Since November 1973, the Agency has 

made 156 such business loans in the program for 

the physically handicapped in the amount of 

$13 million through June 1975. Of this total, 

nearly $7 million has been approved during 

the past fiscal year. It is not known whether 

any such loans involving the mentally retarded 

have been implemented. 

Veterans Administration 

The mission of the VA is characterized in 

the simple but elegant phrase of Abraham 

Lincoln "to care for him who shall have 

borne the battle and for his widow, and his 

orphan." Education and training for mentally 

retarded dependents of veterans who died or 

became totally disabled as a result of a 

service-connected disability are provided 

under the general provisions of the War 

Orphans and Widows' Educational Assistance 

Act, Chapter 35, Title 38. The Veterans 

Health Care Expansion Act of 1973 also 

liberalized the eligibility for medical care 

benefits to wives and children of such 

veterans through CHAMPVA, a program 

similar to CHAMPUS in which cost-sharing 

health care services are made available 

through private providers. A second 

provision of this law permits outpatient mental 

health services to the family of any 

hospitalized veteran where necessary or 

appropriate to the effective treatment of the 

veteran. Mentally retarded dependents will be 

able to benefit from these expanded services. 

The VA health care system is the largest 

employer of health care professionals, 

technicians, and other health-related personnel. 

Currently more than 170,000 are employed in 

all types of positions, including a proportion 

of physically and mentally handicapped 

individuals. Special Civil Service Commission 

procedures for selecting and employing the 

mentally handicapped are utilized in VA as 

are those for the severely physically disabled. 

No specific number of mentally retarded 

employees of the VA is available. 

189 
Services to mentally retarded individuals are 

carried through the Department of Veterans 

Benefits and the Department of Medicine and 

Surgery. VA has no programs specifically 

for the mentally retarded. Those Services with 

organizational responsibilities within DVB 

and DM & S are knowledgeable about the 

needs of the mentally retarded and individually 

develop plans based on a comprehensive 

assessment of psychological characteristics, 

environmental factors, existing intellectual 

abilities, training potential, interest and 

motivation. 

Conclusion 

It is apparent that in governmental administration as vast and complex as that of the 

United States, mental retardation is subject to 

the common effects of "bureaucratic sprawl." 

There is duplication of effort, despite strong 

congressional intent and administrative 

policy. More frequently, however, the 

division of authority fragments integral 

programs, with the components going in 

mutually incompatible directions. 

The proliferation of administrative levels 

often places final authority at a great distance 

from the program objectives. Top level 

initiatives can get so diluted as they pass 

through different administrative levels that they 

produce but a trickle of impact by the time 

they reach the consumer. Each successive 

level frequently adds administrative detail 

until regulations received by direct service 

agencies are unmanageable. All of these 

tendencies, inherent in bureaucratic 

organization, produce waste, inefficiency and 

ineffectiveness. The answer is not entirely in 

decentralization to State and local decisions; 

centralization of authority, general policy and 

fiscal control is one of the necessary 

conditions of equity. Of prime importance is 

continued vigilance in maintaining 

simplicity and coherence of structure, clarity 

in lines of communication, both vertical and 

horizontal, and full accountability in terms of 

end products. 

The role of the Federal Government in the 

alleviation of mental retardation is so new and 

has developed at such a rapid pace that 

currently programs are at relatively immature 

stages of development. They tend, therefore, 

to lack stability and the means of fully 

effective evaluation. In general, programs are 

vulnerable to premature curtailment or 

elimination without sufficient trial or 

effective evaluation. 

Between 80 and 90% of the jurisdictional 

authority and fiscal responsibility for mental 

retardation lies with the States and its local 

subdivisions, yet these are fundamentally 

dependent on the resources of the Federal 

Government, which serves as the catalyzer, 

equalizer and ultimate guardian of the needs 

of American citizens. Failure at the interface 

means failure and frustration at the human 

level where the problems really exist. 

The next chapter will review what is 

happening in the States to make use of the 

resources at the Federal level of government.

190 


Chapter 11 

Action in the States 

Everyone is aware that something is 

happening in the States of considerable import; 

but what precisely is going on, is difficult to 

define. 

For many years fairly uniform data was 

collected by the Federal Government on the 

population of public institutions for the retarded; 

but with agency reorganizations and the slippage 

of budgets and personnel, that practice has been 

discontinued. The change occurred at the very 

time when Federal activity in mental 

retardation had moved into high gear and the 

response of the States was developing rapidly 

following the planning period of 1964 to 1967. 

In this chapter we rely most heavily on a 

report by Robert M. Gettings, Executive 

Director of the National Association of 

Coordinators of State Programs for the 

Mentally Retarded. (Mental Retardation: 

Trends in State Services, U.S. Government 

Printing Office, Washington, D.C. 1976.) 

Gettings conducted a survey at the request 

of PCMR through structured interviews with 

designated State mental retardation 

coordinators in the 50 States and the District 

of Columbia. While its findings are in large 

part factual, they are also in part impressionistic 

and evaluative, as Gettings is careful to point 

out. 

This survey material will be supplemented 

from other sources of information, including 

the regional forums conducted by PCMR in 

various parts of the country where many 

voices have been heard, and the recent survey 

of current trends in public residential institutions 

by R. C. Scheerenberger, President of The 

National Association of Superintendents of 

Public Residential Facilities. (Scheerenberger, 

R. C. Current Trends and Status of Public 

Residential Services for the Mentally Retarded: 1974, National Association of Superintendents of Public Institutions for the Mentally 

Retarded, 1975.) 

Organization of State Services 

It has been recognized since the mid-1950's 

that State governments must play a central role 

in any nationwide attack on mental retardation. 

This recognition has been coupled with an 

awareness of the complex organizational 

problems involved in developing, in any State, 

a comprehensive, integrated statewide delivery 

system which addresses itself to the varied 

service needs of mentally retarded children and 

adults with differing degrees and types of 

handicaps. 

This system obviously requires not only 

delineating role responsibilities within each 

department serving retarded people, but also 

an effective mechanism to plan and coordinate 

State services as a whole. 

The dual requirement was emphasized in 

the recommendations of President Kennedy's 

Panel on Mental Retardation in 1962, and 

reflected in the statewide planning legislation 

enacted by Congress in 1963 (P.L. 88-156). 

The planning that ensued from 1964 to 1967 

together with numerous forces external to the 

field have resulted in a wide diversity of 

organizational structures and coordinating 

methods. 

The structures as they evolved were described, State by State, in the report of a 

previous survey by Gettings and Ziegler in 1973. 

(Gettings, R. M. and W. A. Ziegler, 

Organization of State Services for the Mentally Retarded: A Source Book, National 

Association of Coordinators of State Programs 

for the Mentally Retarded, Inc. 1973.) The 

purpose of the 1975 survey was to determine 

overall trends in State organization and some of 

the characteristics of the changes which are still 

taking place. 

193 
Many factors, of far greater potency than 

mental retardation, have led to the reorganization 

of State governments over the past 15 years. 

Overall, State government expenditures in the 

areas of public welfare, education and related 

human services have increased at a greater rate 

than those of the Federal Government. 

(Statistical Abstract of the United States, 

1974, 95th Edn., U.S. Dept. of Commerce, 

Bureau of the Census, U.S. Govt. Printing Office, 

1974.) 

Mental retardation has been one of the issues 

in which organizational focus has been lacking. 

The rising demand for community services and 

the concurrent uncertainties over the 

appropriate role of institutions have contributed 

to the overall diversity in organizational structures. 

Gettings' survey showed that of the 51 

jurisdictions reporting, 43 States and the District 

of Columbia have undergone at least one major 

reorganization of State mental retardation services 

in the past 15 years. Twenty-nine States have made 

major realignments in the past five years and others 

are still in process. 

Major trends in State government, however, 

are apparent, including: 

 Consolidation of administrative authority. 

This is reflected in the establishment of administrative units to plan, coordinate and manage 

statewide mental retardation service programs. 

Thirty-seven States have created or strengthened 

separate units on mental retardation since 1960, 

which indicates significant progress, even though 

these units differ widely in authority and 

effectiveness. 

 Establishment of Human Service Agencies. 

The most pronounced trend is the creation of 

umbrella State human services agencies. This has 

occurred in 28 States and the District of 

Columbia. Twenty-two of these States include in 

these agencies responsibility for planning, 

coordination and administration of day and 

residential services for the retarded. In the 

remaining States, responsibility is spread among 

separate health, mental health, welfare or independent agencies. (See Table 2)

Table 2 

Classification of State Agencies Responsible for Administering Day and Residential Services to 

the Mentally Retarded 

Type of 

executive agency 

Community 

services 

Residential 

services States 

Health 3 3 Connecticut, Hawaii, North Dakota. 

Mental Health or MH/MR 14 14 

Alabama, Indiana, Illinois, Massachusetts, Michigan, 

Mississippi, Missouri, New York, Ohio, Rhode 

Island, Tennessee, Texas, Virginia, West 

Virginia. 

Mental retardation 1 1 South Carolina 

Umbrella agency (combined 

with health). 15 16 

Alaska, California,* District of Columbia, 

Georgia, Iowa, Kansas, Kentucky, Maine, 

Maryland, Nevada, New Hampshire, North 

Carolina, Oregon, South Dakota, Vermont, 

Wisconsin, Wyoming. † 

Umbrella agency (separate 

from mental health). 

14 12 

Arizona, Arkansas, California,* Delaware, 

Florida, Idaho, Iowa,* Louisiana, Minnesota, 

New Jersey, Oklahoma, Pennsylvania, Utah, 

Washington. 

Institutions 4 5 

Colorado, Montana, Nebraska, New Mexico, 

Wyoming . ** 

*Only public institutional services for the retarded are under the mental health agency. 

†Only community services for the retarded are under the mental health agency. 

**Only public institutional services. 

Source: Gettings, 1975, p. 13. 

194 
• Decentralization of administration of 

operating agencies. The counterpart of centralized overall State planning and coordinating 

authority for day and institutional services, is 

decentralization of operational authority in substate regions. Thirty-six States have established or 

are in process of establishing such operational subdivisions. These sub-units are generally either 

regional or county oriented, rather than being 

attached to municipal units of government. 

• Acceptance of the "developmental disabilities" concept. This trend is represented by 

name changes in 13 States and by the expansion 

in most jurisdictions of agency responsibility to 

encompass cerebral palsy, epilepsy and related 

neurological disabilities. Gettings senses that 

many States are simply complying with the 

letter rather than with the spirit and philosophy 

of the Federal Developmental Disabilities Act 

of 1970 (P.L. 91-517). Other testimony reveals 

a rather widespread dissatisfaction with the 

effects of the DD Act on Federal funding 

patterns, but a tendency to agree with its intent. 

Advocates for mentally retarded clients are 

concerned that the broadening of scope may 

result in the loss of identity and visibility of 

retardation. 

While responsibility for planning, coordination and administration of mental retardation services is increasingly identified with 

a designated office, the agencies responsible 

for related services remain highly diversified. 

Special education services in the public 

schools are under the State educational authority, 

and there is a trend toward extension of this 

authority also to education in State institutions. 

Vocational Rehabilitation often comes 

under human services, but is still most frequently 

attached to education agencies, occasionally to 

departments of labor, welfare, vocational 

education boards. In four States the 

rehabilitation program functions as an 

independent executive agency.

Welfare, social service and Medicaid are 

consolidated in 46 States, in 28 under an 

umbrella human service agency. In the remaining four States the health department runs 

the medical assistance program. Health and 

Mental Health, including maternal and child 

health, crippled children, comprehensive health 

and mental health are increasingly moving 

under the human services umbrella, but 18 States 

still maintain separate mental health departments. 

Many organizational structures are still in a 

"shake-down" phase, and many are still in 

transition from one structure to another. The 

coordinators interviewed by Gettings tended 

to be critical, with 21 expressing dissatisfaction 

with the present organization, 20 speaking 

positively overall, and 10 with mixed views or 

no opinion. 

Those under the umbrella type of organization found advantages in improved coordination, and quicker access to Federal 

funding; but disadvantage in more layers of 

bureaucracy, and various internal sources of 

confusion in a big multipurpose agency. The 

chief difference in satisfaction appeared to rest 

on the degree of distance from operating 

facilities and programs. Dissatisfaction 

appeared to be most deep-rooted in situations 

where day-to-day administrative responsibility 

had been delegated to generalists in regional 

offices, leaving the central office program 

officials with only policy-making and program 

coordination authority. More satisfaction appeared when there was a clear line of 

reporting authority—covering both staff and 

line responsibilities—among the central office, 

regional offices and local service agencies. 

195 
Views from the other end of the organizational continuum were not obtained, but in 

regional forums dissatisfaction was frequently 

expressed both with bureaucratic "remoteness" 

and inaccessibility and with overcontrol from 

"upstairs." 

The degree to which State coordinators felt 

that their interagency coordination was 

effective was encouraging in view of past 

discouragement. Currently, 29 felt that, on 

balance, relationships among agencies were 

relatively effective, especially in terms of 

informal working relationships at top levels and 

through an effective interagency coordinating 

committee or council. The activities of the 

State DD Advisory Council were less 

frequently cited in this regard, and only three 

attributed effective coordination to the umbrella 

human services agency itself. Nineteen 

coordinators felt that interagency coordination 

was rather ineffective in their States. 

It is surprising to find that such factors as the 

expanding authority of the Governor's office 

and the growing power of State budget and 

planning offices did not loom large in the 

minds of State directors as forces shaping 

changes in retardation services. Each was 

cited only six times as a general 

organizational trend affecting services to the 

mentally retarded, while the consolidated 

human services agency was cited eleven times. 

Thirty-two directors gave answers more 

related to program trends than to organizational 

trends. 

Yet in response to questions concerning 

management techniques, there was unease with 

management-by-objective, program-planningbudgeting and zero-based budgeting, which are, 

indeed, a reflection of the expanding authority 

of State budget and Planning offices. 

A growing number of States are, however, 

attempting to implement client-based 

management information systems, using 

computerized client data. These include 

Arizona, California, Connecticut, Florida, 

Illinois, Louisiana, Rhode Island, Texas and 

Vermont. 

Regional and Local Service Patterns 

Few States are small enough or simple 

enough in their operations to handle the 

administration of human services out of their 

hip pockets in the State capital. Education has, 

of course, been decentralized traditionally with 

control in the local or county school board; 

only recently has consolidation taken place. 

Public assistance and other welfare agencies 

have long operated out of county, area or 

district offices. 

Increasingly, however, for many other 

human service functions, the complexity of 

management has led to dividing States into 

regions or sections with delegated responsibility for services and management. Regionalization has occurred as an 

outgrowth of the mental health and mental 

retardation planning activities of the 1960's as 

well as from a growing awareness of the need 

to bring decision making in complex human 

service agencies closer to the people being 

served. 

Forty-three States have developed some form 

of sub-state system for delivering mental 

retardation services. Of these, 36 rely on a 

regional system and seven on a county-based 

system; some of the latter (New York, Ohio, 

Pennsylvania and Minnesota) have 

superimposed a regional structure on a county 

system. 

In general, States have found that the 

most effective organization is one which 

does not place responsibility in an established political subdivision, such as municipal or county government, where the press 

of other demands is likely to submerge the 

programs for the retarded. The 

governmental subdivisions are frequently 

called upon to provide tax-based funds, but 

operational responsibility is delegated from 

the State agency to the regional operation. 

196 
This enables the State to maintain reasonable 

equity across its total jurisdiction and to 

provide service catchment areas of optimal 

size, in terms of both cost effectiveness and the 

best use of scarce resources. 

The forms of regional delivery systems, 

though varied, tend to take one of four basic 

forms: 

1) The discrete regional service center, 

which provides a comprehensive array of 

direct MR/DD services in a catchment area 

designed to make services easily accessible and 

sufficiently staffed. These centers, which usually 

place strong emphasis on alternatives to 

traditional institutionalization, employ an 

interdisciplinary approach and provide for 

diversified, individualized program planning 

and follow-along. Ten States have now 

adopted this system. Alabama, Connecticut, 

Idaho, Illinois and Missouri utilize Stateoperated facilities. California, Kentucky, North 

Dakota, Rhode Island and Vermont use nonprofit corporations or specially formed board 

under contract with the State. In Alabama, 

Connecticut, Illinois, regional centers operate 

residential services. Centers in other States 

provide only non-residential direct services, 

although they often have authority and funds to 

purchase residential services for their clients. In 

Illinois, Kentucky and Vermont, the centers 

also serve the mentally ill. 

2) Arizona, Florida, Louisiana, South 

Carolina and Tennessee utilize existing 

institutions as the administrative focus for 

the regional service system. This arrangement 

has the advantages of providing concentrations 

of professional and technical resources and of 

breaking down the traditional barriers between 

institutional and community programs. 

3) At least twelve States (Alaska, 

Georgia, Iowa, Maine, Massachusetts, 

Minnesota, Nebraska, New Jersey, New York, 

North Carolina, Ohio and Pennsylvania) use a 

regional, district or multi-county 

administrator/coordinator whose office does not 

provide direct services but, with varying 

degrees of authority, directs, coordinates or 

facilitates the development of services within 

the catchment area. 

The relationship of the regional 

MR/DD administrator to other human service 

programs varies. In Nebraska and New Jersey, 

the administrator reports directly and 

exclusively to the central office of the State 

mental retardation agency. In Minnesota, 

Mississippi, New York, Ohio and 

Pennsylvania, mental retardation and mental 

health are combined at the regional and central 

office levels. In Arkansas, Georgia, Iowa and 

North Carolina, the regional MR/DD 

administrator is part of a regional office of a 

State human services agency and may either 

report directly to his counterpart at State level 

or through the chief regional administrator. 

4) In Delaware, and tentatively in South 

Dakota and Iowa, a regional human services 

center has been tried, which brings together a full 

spectrum of services required to meet the 

responsibilities of the umbrella State agency. 

These and other combinations of regionalized 

service delivery illustrate the present state of 

flux which characterizes direct service systems. 

Only seven States have had a regional system 

for ten years or more, ten have been started in 

the past two years. The average time for such 

a system for 36 States is a little more than five 

years. 

197 
Virtually every State director of mental 

retardation services reported marked growth 

and development in the past few years. 

South Carolina, for example, moved in 

eight years from practically no communitybased services to a 1975 total of 55 day-care 

programs, 38 adult activity centers, 12 

community homes and 60 family-care homes; 

with plans to open 14 more day-care programs, 

10 adult activities centers, 75 community-homes 

and 4 new summer training programs in the 

next fiscal year. 

Since 1970 the community services budget in 

Maine has grown from $70,000 to $5 million 

($3 million State, $2 million local matching) 

in 1975. 

The California Developmental Disabilities 

Program was reorganized under the State 

Department of Health in 1973, and now 

combines in a concerted program in 20 

regions the functions of the residential 

institutions, community services and counseling 

and advocacy services with a total budget of 

$197 million. There is a headquarters staff of 

55, and over 9,000 field staff, working in 60 

offices and settings. In 1974-5 over 30,000 

clients were served. But California still feels 

the pressure of monumental problems and 

challenges in fully developing this massive 

system. In 1975 the Health Department split 

responsibility for institutions and for the 

regional centers into two separate units. 

The Role of Private Organizations 

Since the early 1950's NARC, United 

Cerebral Palsy Inc. and, later, the Epilepsy 

Foundation of America have been influential in 

providing services to retarded or cerebral 

palsied citizens and in helping to shape public 

policy. 

What is their role now as the States begin to 

evolve extensive patterns of publicly 

supported services? 

In the days when virtually no services were 

available, associations for retarded citizens, in 

particular, provided direct service. In 1965, 

NARC's official policy was to "obtain not 

provide" services and to encourage State and 

local units in that direction. The policy 

remained controversial with many ARC State 

and local units involved in service operations. 

Gettings' survey explored the views of the 

State coordinators with respect to the efforts of 

volunteer organizations and their effectiveness. 

Twenty-two coordinators said that ARC 

groups in their States had either adopted or were 

moving toward the "obtain not provide" 

policy. Thirteen reported that ARC units in 

their States were moving in the opposite 

direction, i.e., toward the primary role of 

service agencies. Seven indicated that the 

associations were continuing the long-standing 

role of a provider agency. In relation to their 

role as pressure groups on State legislatures 

and in the local or regional community, 26 

coordinators felt the ARCs were an important 

force in shaping public policies, 13 felt they were 

largely ineffective in this area. 

A few State coordinators felt that the UCP 

and Epilepsy groups were playing a growing 

role, but most failed to mention them. 

The Gettings survey was, of course, only 

one sampling of opinion and represents 

individual reactions. The local strength and 

type of role played by the voluntary 

organizations vary considerably. Other 

evidence available to PCMR confirms this 

impression, but also supports an observation that 

the voluntary groups constitute, on the whole, a 

substantial force in the evolution of services for 

developmentally disabled clients in most States 

and communities. 

198 
There was a surprisingly scanty response from 

the State coordinators on the role of private 

vendors in the provision of direct service to the 

retarded, either in terms of purchase of service 

contracts by State agencies or on an individual 

proprietary basis. In view of the reported indiscriminate use of nursing homes in an effort to 

reduce institutional populations, and the increasing 

search for foster homes, boarding homes and 

other types of domiciliary care homes, it was 

surprising that only seven coordinators detected 

such a movement. A few expressed concern 

about the quality of these services and the degree 

of supervision. 

There is either a lack of knowledge on the 

part of State directors of services, or else the 

development of privately operated facilities has 

not been of sufficient concern to the developers 

of comprehensive community service supports to 

the retarded. It may be that this development is, as 

Gettings suggests, concentrated in a relatively 

small number of States and that it has been slowed by 

the unfavorable public notice of scandalous 

conditions prevailing in some proprietary 

establishments. 

Trends in State Service Budgets 

The Gettings survey concentrated attention on 

recent and projected budgetary trends in the area 

of day and residential services to the mentally 

retarded, in contrast to services provided through 

generic education, health, rehabilitation and social 

services. 

Twenty respondents reported that the 

area of community services has been the 

fastest growing segment of their budget in 

the past few years. Twelve reported the 

institutional budgets to be faster growing, 

while four said the State's special education 

program had grown faster than either of the others. 

It is not clear whether these comparative growth 

rates were in dollars or in percentages; but it is 

clear that in all three areas there is significant 

growth as a whole. 

In virtually all States the dollar outlay for 

institutional care is still considerably greater than 

that for community services. The growing 

volume of service to retarded persons channeled 

through generic agencies is also evident. 

In the absence of comprehensive, comparative 

data, examples showing expenditure trends in day 

and residential services must substitute for more 

definitive information. 

In Arkansas, the State community service budget 

rose from $500,000 to $2.1 million between 

1971 and 1974. In ten years, the total MR/DD 

budget increased from $1 million to $17 

million, or 1700%. 

Total expenditures in California for 

prevention and service in developmental 

disabilities is expected to top $335 million in 

1975, a 20% increase in two years. 

In Connecticut the budget of the Office of 

Mental Retardation has increased 43% in three 

years. 

In Louisiana the number of State residential 

facilities has grown from two to eight in the 

past ten years, while the budget of the state 

MR division has increased from $10 to $37 

million. 

In the past five years in Georgia the budget for 

day training centers for mentally retarded 

citizens has grown from $50,000 in 1970 to 

$24 million in 1975. 

Idaho doubled its State budget for mentally 

retarded citizens, from $3 million to $6 

million in five years. 

In 1969 Nebraska adopted its new regional plan 

with a budget of $600,000 which provided 

services for 85 clients that first year. In 1975, 

3000 clients are served on a budget of $14 

million. 

The Ohio division of Mental Retardation and 

Developmental Disabilities presently serves 

five times as many persons in community as in 

residential settings, a reversal from 1968. In 

that period the budget has increased 400%, with 

70% of the total supporting institutions, down 

from 90% seven years ago. 

In two years, the Pennsylvania Office of Mental 

Retardation budget for the Family Resources 

Services program has grown from $800,000 to 

$4 million, while support for the State's group 

homes program has zoomed from $2 to $13 

million. 

While the population of the Ladd State School 

in Rhode Island has been reduced from 1200 

to 840 in eight years, the school's budget has 

increased from $5 to $15 million. This means 

an increase in per diem cost from $11.40 to 

$42.30!

199 
The South Carolina budget for the 

Department of Mental Retardation has grown 

from $9.5 million in the 1969-70 biennium to 

$26.8 million in the current biennium, with an 

additional $8 million in Federal funds. 

The budget for Developmental Disabilities in 

South Dakota, not including institutional 

support, has grown from $60,000 in 1971 to 

over $1 million in 1975.

Not every State can report these rates of 

fiscal growth, nor are budgetary increases 

synonymous with quality improvement or the 

absence of problems and frustrations. The 

unmistakable fact is, however, that States have 

been showing real progress in the development 

and expansion of services to mentally retarded 

individuals over the past ten years. This growth 

has been greatly stimulated by Federal 

programs and matching Federal dollars. 

However, in terms of overall outlay, the costs 

of such direct service borne by the States and 

their subdivisions exceed by many times the 

contribution of Federal agencies. 

Program Trends in the States 

National policies and trends are not always 

reflected uniformly in what happens on the 

local scene. In recent years, national attention 

has focused on a number of goals for special 

education, rehabilitation, residential services, 

community services, and health and preventive 

services as they relate to mentally retarded 

people. In general there has been an assumption 

that these projections reflected the thinking of 

people in most parts of the country. 

Yet, PCMR has frequently heard comments 

in its Regional Forums to the effect that 

decisions are made by small groups of ivorytower "experts" who are not really in touch 

with the active scene of human need and 

service delivery. 

What is the real situation? What are the trends 

in the States in these major areas of service and 

concern for individuals with mental 

retardation? Here again, because of the lack of 

adequate information processes, it is impossible 

to obtain and to summarize all the facts. 

Here are some of the findings from the 

Gettings survey and from other sources: 

Education 

All States, with exceptions of Ohio and 

Mississippi, now have mandatory special 

education laws, 34 of which have been 

passed or revised in the past two years. 

(Mississippi and Ohio, despite the absence of 

mandatory legislation are not without 

significant educational programs. Ohio, in 

particular, has made impressive strides in 

extending services to moderately retarded 

children over the past eight years through a 

network of county mental retardation service 

boards.) But the statutes differ in their 

coverage of handicapped children, the ages 

and qualifications for eligibility, the quantity 

and quality of schools, and the extent and 

speed with which laws are being implemented. 

In terms of coverage, 37 States require 

educational services for all retarded children—regardless of degree of their handicap. In 

six States education is mandatory only for 

those classified as "educable" or "trainable" 

(Georgia and New York exclude only the 

profoundly retarded). The Council for 

Exceptional Children has reported that the 

mandatory laws of six States have exclusionary 

language with regard to certain categories of 

children with retardation. The Council for 

Exceptional Children, Digest of State and 

Federal Laws, 3rd Edition 1975.) 

Eligibility age ranges show no lower limit 

in nine States, ages 2 to 3 in nine States, 4 to 

5 in fourteen, 6 to 7 in thirteen, while six 

States did not respond. As to the upper age 

limit on eligibility, there is more uniformity, 

with 32 States setting age 21 as the upper 

limit. Three have none, three specify age 18, 

three at 20, four allow retention to 23 or 25, 

and six made no response. 

200 
There is some evidence of a trend in recent 

years to widen the age range at both lower and 

upper limits, with variations in what is 

permissive and what is mandatory in the various 

statutes. In general there is greater recognition 

of the value of early education below the 

traditional "school age" than of continuing 

education beyond traditional "school age." 

The question of "mainstreaming" evoked 

a wide variation of response from the State 

coordinators, and other sources suggest that this 

is an area of concern both controversial and 

lacking in clarity. What is generally meant by 

"mainstreaming" is the placement of 

exceptional children in regular classes with 

special assistance geared to individual needs 

through the use of resource persons. 

Since special education does not usually come 

under the direct jurisdiction of mental 

retardation coordinators, many of Gettings' 

respondents did not feel competent to give 

expert testimony in this area. However, 22 

stated that very few school districts in their 

States were mainstreaming retarded children, 

11 indicated mainstreaming to some extent and 

9 reported considerable use. 

Several felt that it was being applied inappropriately, especially in reported cases of 

wholesale placement of children with 

substantial educational and adaptive handicaps in 

regular classrooms. Other evidence suggests 

that the principle is understood quite 

differently from place to place and that school 

administrators are generally conservative in 

initiating programs which require considerable 

recasting of established practices. On the other 

hand, the growth of specialized resource 

personnel in the public school as a whole has 

interested many administrators in exploring 

more extensive integration of children with 

academic limitations in normal classroom 

situations. 

The concept of "zero-reject," or the 

policy of providing public educational services 

even to severely and profoundly retarded 

children has now achieved some status as a 

constitutional and statutory right. Of Gettings' 

respondents, 35 reported that it was the public 

schools' responsibility to serve severely and 

profoundly retarded children or to see that such 

services were provided. 

However, of the 35, 22 saw scant progress 

towards actual programming for such children, 

while ten said they had observed what they 

regarded as "reasonable" progress with regard 

to severely retarded children. Most progress 

appears to have been made in California, 

Illinois, Minnesota, Pennsylvania, Texas and 

Washington. In any case, this development is 

too new to have made a strong impact on the 

practices of most States. 

There is a distinct trend toward shifting the 

responsibility for the education of children 

in institutional settings from the institutional 

administration to the State educational 

authority. Twenty coordinators reported that 

this change had occurred in their States, while 25 

replied that responsibility still remained with the 

institution. Six did not respond. 

Rehabilitation 

Relationships between State divisions of 

vocational rehabilitation and other agencies 

serving retarded individuals vary greatly. 

Mentally retarded persons initially became 

eligible for rehabilitation services by Federal 

statute in 1943. Liberalizing amendments 

governing eligibility and training were enacted 

by Congress in 1954, 1965 and 1968. This 

legislation led to more mentally retarded clients 

being served by the DVRs, but they remained 

a low minority in the total reported as 

"rehabilitated" in comparison with their 

estimated prevalence. 

In 1973, Congress rewrote the Vocational 

Rehabilitation Act, placing stronger emphasis 

and priority on persons with more severe 

disability. Gettings surveyed the State 

coordinators with respect to the impact of the 

1973 amendments on the goals and activities of 

rehabilitation agencies. 

201 
Responses were sharply divided between 

those who saw evidence of changes and those 

who did not. In the former group, seven 

reported a continuation of strong cooperative 

relations with the rehabilitation agencies. An 

additional 15 coordinators also saw noticeable 

changes in the agency as they related to more 

severely retarded individuals. On the other 

hand, the remaining 27 coordinators who responded perceived little or no change in the 

policies and priorities of the vocational 

rehabilitation agency in their State. These 

respondents were divided between those who 

reported past cooperative efforts but no new 

initiatives from DVR, and those who bluntly 

stated they had never received much assistance 

from the rehabilitation agency and did not see 

the situation changing. 

In general, over half of the respondents (22 

of 40) who gave a definitive answer said that 

mentally retarded clients were not being 

offered equitable access to vocational 

rehabilitation services. Responses to the 

question regarding the 1973 amendments 

seemed colored by long-standing differences 

in interagency relationships; these differences 

are illustrated by the wide variations among 

States in federally reported case closures 

involving mentally retarded clients. 

Gettings notes, however, that "Congress has 

placed vocational rehabilitation agencies in the 

difficult (some would say impossible) situation 

of improving services to the severely retarded 

while maintaining services to existing clients—

all of this without any substantial increases in 

Federal appropriations and during a period of 

serious inflation," and, we add, of high unemployment. 

On the positive side were indications of new 

developments in California, Louisiana, Illinois, 

Nebraska, New Jersey, South Carolina and 

South Dakota in the provision of State 

rehabilitation services to mentally retarded 

clients. 

Residential Services 

The issue of residential services for mentally 

retarded persons has been at the core of recent 

developments. Two terms signify the transition 

from old types of residential service to new and 

more desirable ones: "normalization" and 

"deinstitutionalization." Both terms have been 

subject to such a variety of interpretations and 

misinterpretations that one hesitates to use them 

without qualification, but they derive from a 

past heritage of treatment that is now 

recognized to be dehumanizing, degrading and 

totally obsolete. PCMR is working under a 

Presidential goal to reduce the institutional 

population by one-third, and is committed to 

changes that will be conducive to a more 

normalized life experience than was afforded 

by the traditional institution. 

In one sense, "deinstitutionalization" means 

more than a simple change of residence, it 

means avoiding the institutional route by early 

care and treatment, providing alternative living 

arrangements, or changing the life style and 

environment of an institutionally molded patient. 

Scheerenberger has reported that total 

institutional populations began to decline for 

the first time in 1969 and show an estimated 

8.9% decrease from the peak by 1974. In 

addition, most States have been active in 

improving the quality of institutional services, 

utilizing both State and Federal funds (HIST, 

HIP, Medicaid, ESEA, and VR). 

Gettings reports that 33 State respondents 

indicated that their highest priority goal was 

reduction in institutional population. Six

202 
stated their top priority as improvement of 

conditions in existing institutions. Five cited 

the need for improved screening, referrals and 

reduction of waiting lists, while six reported 

the need for additional institutional beds. The 

remaining States mentioned need for technological improvements, improved physical 

structures, humanization, expansion in regional 

systems, and reorientation of the institutional 

role. 

It is quite apparent that consumer interest is 

not a one-way rush to avoid or leave the 

institutions. There is probably consensus on the 

need to improve the quality of older institutions 

and reduce their size, but strong interest still 

persists in the security of the residential 

institution. 

The number of institutions continues to 

increase, despite an overall reduction in total 

residential population, but newly constructed 

facilities are now being wedded to 

comprehensive community-based service 

systems. 

In Gettings' survey, 30 respondents reported 

an overall decrease in daily average population 

over the past five years, four reported an 

increase and nine indicated no change. A 

comparative analysis of the 1975 institutional 

population estimates and 1970 statistics reported 

by HEW gave Gettings a slightly different 

picture. Twenty-six States decreased their 

populations by 10% or more, nine states 

increased by 10% or more while fifteen 

remained relatively static (i.e., within plus 

or minus 10%). The total decrease was 

shown to be 9.8% over the five-year period. 

When Gettings' findings are expressed in 

terms of rate per thousand in the general 

population, still different results are 

forthcoming (see Table 3). With correction 

for population changes from 1970 to 1974, the 

rate of institutionalization drops from .92 per 

thousand to .79, a reduction of 14.1%.

Nanda Ward Haynes, CEC 

203 
Table 3

Population Trends in Public Residential Facilities for the Mentally Retarded: 1970-1975 

Resident population 

as of 1970 

Resident population 

as of 1975 Percent of change 

State Number 

Rate per 1,000 

pop. Number

Rate per 1,000 

pop. Number 

Rate per 1,000 

pop.

Alabama 2,300 .68 1,762 .50 -23.4 -26.5

Alaska 109 .36 110 .33 +0.9 -.8

Arizona 971 .54 1,050 .49 +8.1 +9.3

Arkansas 1,294 .68 1,620 .78 +25.0 +14.7

California 11,483 .58 *10,000 .48 -12.9 -17.2

Colorado 2,113 .96 *1,700 .67 -19.5 -19.8

Connecticut 4,074 1.36 3,500 1.13 -14.0 -16.9

Delaware 568 1.03 575 1.00 +1.2 -.3

District of Columbia 1,242 1.63 1,364 1.88 +9.8 +15.3

Florida 6,128 .90 5,509 .68 -10.1 -24.4

Georgia 1,864 .40 3,568 .73 +91.4 +82.5

Hawaii 747 .97 712 .84 -4.7 -13.4

Idaho 654 .92 465 .58 -28.9 -36.9

Illinois 7,877 .71 6,800 .61 -13.7 -14.0

Indiana 3,604 .69 3,000 .56 -16.7 -18.8

Iowa 1,623 .58 1,460 .51 -10.0 -12.1

Kansas 2,016 .88 1,658 .73 -17.7 -17.1

Kentucky 989 .31 945 .28 -4.5 -9.6

Louisiana 2,959 .82 *3,800 1.01 +28.4 +23.2

Maine 799 .81 586 .56 -26.7 -30.8

Maryland 3,215 .82 2,800 .93 -12.9 +13.4

Massachusetts 7,554 1.33 6,000 1.03 -20.5 -22.5

Michigan 11,834 1.33 7,100 .78 -40.0 -41.3

Minnesota 4,321 1.14 3,600 .92 -16.7 -19.3

Mississippi 1,340 .61 2,332 1.00 +74.0 +63.9

Missouri 2,535 .54 2,567 .54 +1.3 0

Montana 944 1.37 550 .74 -41.7 -45.9

Nebraska 1,759 1.17 *1,000 .65 -43.1 -44.4

Nevada NR ................ NR ................ ............ ................ New Hampshire 970 1.31 740 .92 -23.7 -29.7

New Jersey 6,846 .95 7,500 1.02 +9.5 +7.4

New Mexico 708 .71 780 .70 +10.1 -1.4

New York 26,551 1.45 19,854 1.09 -25.0 -24.8

North Carolina 5,068 .99 4,300 .80 -15.1 -19.2

North Dakota 1,497 2.41 950 1.50 -36.5 -37.8

Ohio 9,462 .88 *8,000 .74 -15.4 -15.9

Oklahoma 1,934 .74 *2,100 .78 +8.6 +5.4

Oregon 2,836 1.35 2,160 .96 -23.8 -28.8

Pennsylvania 10,621 .90 *10,000 .84 -5.8 -6.6

Rhode Island 851 .90 839 .90 -1.4 0

South Carolina 3,633 1.40 4,275 1.54 +17.7 +10

South Dakota 1,197 1.79 1,180 1.73 -1.4 -3.3

Tennessee 2,785 .71 *2,500 .60 -10.2 -15.5

Texas 11,037 .99 *13,200 1.10 +19.5 +11.1

Utah 863 .78 850 .72 -1.5 -7.7

Vermont 628 1.43 466 .99 -25.7 -31.8

Virginia 3,661 .80 *4,900 .99 +33.8 +23.8

Washington 3,738 1.10 *2,500 .72 -33.1 -34.5

West Virginia 461 .27 *500 .28 +8.4 +3.7

Wisconsin 3,781 .86 *3,000 .66 -20.6 -23.2

Wyoming 699 2.12 *600 1.70 -14.1 -19.8

Total 186,743 .92 168,327 .79 -9.8 -14.1

*Estimated. 

NR Non-reporting. 

204 
Interestingly, States showing the greatest 

decrease were consistently in the northern tier 

from Maine to Washington, while those 

showing the sharpest increase were in the 

southern tier, from Maryland south and across 

to New Mexico. A number of factors have 

influenced these population trends. 

Gettings points out that in the past ten years 

the number of State facilities has increased 80%, 

from 135 in 1964, to 246 in 1974, which means 

a sharp drop in the average size of institutions. 

Many States had substantial waiting lists. 

For example, South Carolina reduced its waiting 

list in four years from 1,385 to 140, while 

increasing its residential population by 642, or 

only half as much. States differed widely in the 

institutional rate per thousand population. 

Aside from Nevada, which is now in 

process of opening two small, specialized 

institutions for the retarded, West Virginia had 

the lowest rate of .27 per thousand and 

showed virtually no change over the past five 

years. 

North Dakota, with the highest rate of 2.41 

per thousand in 1970, showed a remarkable 

decrease to 1.50 in 1975. 

Georgia, which had the highest percentage 

increase in both number and rate in the five 

year period, was still below the average rate 

of .79 per thousand in 1975, rising from .40 to 

.78. 

The State with the largest percentage 

decrease, Nebraska with 43.1 percent, dropped 

in rate per thousand from 1.17 to .67. 

Eight States dropped their rate from above 

1.0 to below 1.0 in five years (Michigan, 

Minnesota, Montana, Nebraska, New 

Hampshire, Oregon, Vermont and 

Washington), while four increased from below 

1.0 to above 1.0 (Louisiana, Mississippi, New 

Jersey and Texas). 

No conclusions can be drawn from these 

population trends regarding the quality of 

services in the State institutions or the real 

movement of the States toward the ultimate 

goals of moving residents to less restrictive 

community environments. The data show that 

most States are in a transitional phase. Roles are 

changing, with much more permeable 

institutional walls. Nonresidents are increasingly 

served in the institution and residents are served 

in the community. Training functions, both 

for the facility's residents and its own staff, 

have greatly increased and expanded to the 

training of other groups to work in community 

settings. Relationships with universities in terms 

of training, research and service activities are 

increased. According to Scheerenberger, 

superintendents estimate that 53% of present 

residents, including all levels of disability, could 

be returned to the community if appropriate 

community programs were available. 

Gettings, on the basis of his survey of State 

coordinators, sees three currently developing 

models of public residential institutions: 1.) the 

newer institutions, situated in urbanized areas, 

balancing residential and community-based 

functions and serving as one among many 

services offered to the public. The regional 

centers in Connecticut and around Chicago are 

examples. 2.) Older residential facilities 

converted to a specialty facility within an 

integrated service delivery system, either on a 

State or sub-State regional basis; the emphasis is 

on short-term specialized services from which 

the resident returns to an alternative 

community setting. California institutions fit 

this model. 3.) Older facilities being 

converted to the administrative hub of a 

regional or area-wide service delivery system 

with strong emphasis on outreach activities. 

Florida, Tennessee, Louisiana, South Carolina 

and Texas are moving in this direction. 

Community Services 

Since many State coordinators reported 

that community services had been the fastest growing area of their States' budgets in 

recent years, the question naturally arises

205 
as to the composition of these services. 

Gettings reports adult activities as the most 

frequently cited for the fastest growing type of 

service, followed by day training, group homes 

and sheltered workshops, with recreation, 

preschool programs and family home service 

trailing further behind. 

The regional offices, State institutions and 

Associations for Retarded Citizens are the 

principal resources for information and referral, in 

that order. Five States reported the use of a 

"Hot-Line" telephone service as a growing 

means of providing information. 

Some States were able to report the effects 

of new mandatory special education laws on 

day training programs for severely retarded 

children outside of the school system. The 

effect has so far been to shift emphasis to preschool or post-school age retarded individuals, 

but the new school programs for severely 

retarded children are still too new and 

unsettled to have had a definitive effect in 

many jurisdictions. 

Thirty-five States reported the lack of 

adequate transportation systems to be one of the 

principal barriers in the operation of community 

programs. Various devices have been 

employed to meet this problem: reimbursement 

to parents, five-day live-in centers in rural areas, 

a special budget for busing in urbanized areas. 

However, no State has found the complete 

solution to this problem. 

Health and Preventive Services 

States are nearly evenly divided in the 

reported adequacy of diagnostic and evaluation 

resources, 22 reporting them adequate, 24 

inadequate. Georgia, Louisiana, and New 

Mexico are making good use of mobile 

clinics or traveling diagnostic teams. 

Early intervention and case finding does not 

show up strongly in State reports. Only ten 

mentioned the Early Periodic Screening, 

Diagnosis and Treatment Program (EPSDT) 

under Medicaid; few had any well defined 

programs. California has a statute now in the 

process of being implemented requiring that 

every child receive a comprehensive 

physical and mental assessment before entering 

public school. Only nine States mentioned preschool classes and five, infant stimulation 

programs; Connecticut is experimenting with 

pilot programs in three different settings. Most 

respondents stated that there was little or no 

activity in early intervention programs. 

State sponsored prevention programs were 

reported to be funded only in California and 

Pennsylvania, with $1 million and $2 million 

respectively. 

Federal Assistance 

The growth of federally obligated funds in 

mental retardation has been described in the 

preceding chapter. A large part of such funds 

has been expended through the States in a wide 

range of programs, with a recent tendency 

toward the consolidation of formerly separate 

categorical funds. There has also been an 

increasing effort to decentralize Federal 

decisionmaking by expanding the role of 

regional offices—with the intent also of 

allowing States within the region to adapt the 

use of funds to their own unique conditions. 

Despite the growth of Federal involvement 

in the support of State operated programs for the 

mentally retarded, the States themselves continue 

to bear the main burden. 

A survey conducted by the National Association of Coordinators of State Programs 

for the Mentally Retarded in 1972 showed total 

State expenditures for day and residential 

services alone to have grown from $375 

million in 1963 to over $1.4 billion in 1972. 

206 
Conley, using a different grouping of 

budget elements showed 1970 expenditures for 

residential and community care services to be 

$388 million from Federal and $2.5 billion 

from State and local sources. (Conley, R., The 

Economics of Mental Retardation, op. cit.) 

The Federal income maintenance and health 

insurance programs contributed an amount 

approximately equal to funds obligated by the 

Federal government for personal services to 

the developmentally disabled. 

When asked to indicate the three most 

important sources of Federal assistance, the 

State coordinators overwhelmingly agreed 

that welfare related programs (Medicaid, 

social services and public assistance) were by far 

the most important, with 31 ranking social 

services (Title XX, Social Security Act) and 

29 ranking Medicaid (Title XIX, Social 

Security Act) as either first or second. SSI 

(Title XVI, Social Security Act) was 

considerably downgraded, as was vocational 

rehabilitation. Title I of the Elementary and 

Secondary Education Act and Developmental 

Disabilities were given moderate ranking, usually appearing in third place. 

Asked their views on the major obstacles to 

obtaining and properly utilizing Federal 

assistance funds, State coordinators voiced 

sharp criticisms. Fourteen cited lack of clear 

Federal policies, 12 pointed to discontinuities 

in Federal funding policies. Ten mentioned the 

uncertainties surrounding annual appropriations, 

and one said the mountains of Federal "red 

tape" were a significant obstacle. Twelve 

coordinators indicated that most problems 

involving Federal funding can be traced back 

to the responsible State agency, while eight 

others pointed to the lack of consistency in 

policy among Federal regional offices. 

In general, it seemed clear that State 

program directors now spend a major portion of 

their time dealing with problems surrounding 

various Federal programs. They revealed a 

high level of frustration generated by the 

interaction between Federal and State 

governments, which is growing at a rapid rate as 

the number and complexity of Federal 

resources expand. 

Legal Rights 

There has been a virtual explosion of 

litigation and legislation in the past few years 

aimed at assuring the legal and human rights of 

mentally retarded citizens. No States have 

been unaffected by this wave. 

When asked for an opinion on the most 

important developments in the area of legal 

rights of the retarded in their States, most 

coordinators cited recent court cases (9 

responses), new State laws (12 responses), and 

changes in administrative policies (16 

responses). The following were among the 

examples cited: 

California has established an administrative 

appeals process for residents in State 

institutions. 

The Michigan and New York legislatures 

recently adopted revised mental health codes 

which spell out the rights of mentally ill and 

mentally retarded clients and offer them 

additional due process safeguards. Similar 

"patient rights" legislation has been adopted in 

Colorado, Indiana, Kentucky, Nevada, Ohio 

and Virginia among other States. 

At least seven additional States (Alabama, 

Illinois, Nebraska, New Hampshire, South 

Carolina, Texas and Vermont) had 

legislative study groups working on 

revisions to the State's mental retardation 

codes at the time of the interview.

207 
Office of Child Development 

Three States have developed legal advocacy 

units for agency clients. Georgia, for example, 

has established a statewide advocacy unit 

within the Division of Mental Health and issued a booklet spelling out patient rights. The 

Rhode Island Division of Mental Retardation 

has contracted with the Rhode Island Legal 

Aid Society to provide a full-time attorney to 

represent clients, while the State of New 

Jersey has set up a cabinet-level advocacy 

office (with a section specializing in mental 

health and mental retardation). 

Citizen advocacy services, only partially 

concerned with legal rights, have become 

well developed in regions of Nebraska, Texas, 

and Pennsylvania.

Nineteen States have instituted new 

guardianship or protective services programs 

in recent years. Thirty States reported no 

recent changes in State guardianship laws 

or programs; however, in at least three of the 

latter States, efforts were underway to 

develop new guardianship statutes. 

A total of 13 State coordinators felt that the 

States' current protective services/ 

guardianship system was meeting the needs of 

retarded citizens in their States. Twenty-four 

respondents said the current system was not 

functioning well and needed to be changed. 

Significantly, 10 of the 19 States which have 

recently instituted new guardianship plans 

rated their current system "adequate" while 

four others said it was too early to judge.

208 

Nanda Ward Haynes, CEC 

Nanda Ward Haynes, CEC 
Chapter 12 

The Role of Higher 

Education 

From the beginning of the present era of attack 

on mental retardation, it was clear that the higher 

education system of America had a vital role to 

play. Without the advancement of knowledge 

through highly diversified and intensive research, 

no significant inroads on the prevention of retardation would be possible. But there were few 

scientists to do research and few trained 

professionals to provide the services necessary 

to improve the lives of retarded children and 

adults. 

In the 1950's colleges and universities were 

giving only incidental attention either to the 

preventive or to the ameliorative sides of mental 

retardation. Textbooks in psychology dismissed 

it with a few paragraphs under "Abnormal 

psychology," describing the general 

gradations and the hopelessness of the condition. 

Pediatricians, in their training, learned that the 

defective are condemned to helplessness and 

that the kindest treatment was to urge the parents 

to place the child in institutional care, dismiss it 

from their lives and turn to the future 

production of healthy children. 

Nevertheless, Masland, Sarason and Gladwin 

(1958) after an extensive survey, found that 

work was going on in scattered places among 

geneticists, biochemists, and neuropathologists 

which would have side implications for some 

of the causes of retardation. Psychologists had 

been occupied for some time with the analysis 

and measurement of intelligence in such 

operations as the Iowa Child Welfare Research 

Station, under the leadership of Stoddard and 

Lewin, the Yale Institute of Human Relations 

and the work of Arnold Gesell, the Berkeley 

Child Development Center with Nancy 

Bayley's pioneering studies, Terman's projects 

on intelligence at Stanford among others. All 

these had been developing new insights into the 

nature/nurture concepts of intellectual 

development and adaptive behavior that were 

milestones for mental retardation research. A few 

schools of education were beginning to train 

special education teachers, and concern was 

developing in a few schools of social work and 

public health nursing. 

It was evident to Masland and his associates, 

and to NARC and the governmental agencies 

that sponsored their historic survey, that strong 

stimulus would be necessary to bring the 

problems and challenges of mental retardation 

sharply into academic focus. In the 1950's the 

National Institute of Neurological Disease 

and Blindness and the National Institute of 

Mental Health provided increasing support for 

research and training in areas at least tangential to 

the problem. Also the Children's Bureau, MCH 

Division, undertook the support of diagnostic 

and evaluation clinics, many of which were 

located at universities. 

In the 1950's also, NARC launched its 

research program concentrating on the "support 

of persons" not projects. These Distinguished 

Scientist and NARC scholar awards did much to 

increase the visibility and provide spin-off 

developments in academic interest in mental 

retardation. Among others, these awards led to 

the great development of the Johns Hopkins 

University Department of Pediatrics under 

Cooke, the mental retardation research program 

at Yale under Zigler, and the invention of the 

bacterial inhibition assay test for PKU by 

Guthrie at Buffalo. 

The Office of Education acquired authority for Cooperative Research Grants, many 

of which were in the area of mental retardation; 

and, in 1957, for supporting the training of 

special education teachers. The pioneering work 

in special education, teaching and research on 

mental retardation by Kirk at Illinois, 

Cruikshank at Syracuse, De Prospa at City 

College of New York, and subsequently Dunn

211 
and Hobbs at Peabody were potent currents in a 

rising tide. 

The Division of Vocational Rehabilitation 

expanded its authority to support R and D 

grants for the study and development of 

vocational rehabilitation of retarded persons. 

The files of the American Journal of Mental 

Deficiency show an increase in quantity and 

improvement in quality of studies coming from 

University settings. The constant cry of the 

advocates for mentally retarded persons was 

for more and better research, more and better 

training of needed manpower, more and better 

experts to guide the development of services to 

the mentally retarded children, youth and adults 

of American families. 

It was not, therefore, surprising that the 

President's Panel in its report of 1962 recommended strong measures to stimulate the 

development of research and the training of 

expert manpower in the universities. The result 

was that Congress authorized and the executive 

departments and agencies implemented 

programs of planning, construction, 

development and support which greatly 

stimulated research and training in mental 

retardation in institutions of higher education. 

The legislation tied the involvement of the 

universities to the construction and development 

of community facilities and the delivery of 

services to retarded persons; it anticipated the 

outcome of research in improved techniques of 

prevention and treatment. 

These developments led to the construction at 

University sites of 12 Mental Retardation 

Research Centers; 20 constructed (and an 

additional number of supported) service 

facilities affiliated with universities for 

interdisciplinary training and for demonstration 

of the required continuum of services; 20 

Rehabilitation Research and Training Centers, of 

which three were designated for mental 

retardation; and greatly expanded programs of 

university training and project development 

under the Bureau for Education of the 

Handicapped, Office of Education. 

In addition, Federal training and research 

funds made it possible for individual 

departments and schools of many colleges and 

universities, not under major mental retardation 

programs, to develop research and training 

programs which greatly expanded the role of 

higher education in the field of mental 

retardation. 

It was an opportune time for these developments to occur. Higher education was 

in a period of euphoric expansion such as it 

had never before known. The expansion had its 

roots in a variety of circumstances: a) educational 

benefits to veterans of World War II and the 

Korean War attracted serious and mature 

students; b) it became a matter of national interest 

to develop American technical capability to 

counter the growth of Soviet technology; c) 

the population wave from the high birth rate of 

the post-war period crested in the colleges in the 

late 1960's; d) the academic degree became 

increasingly a symbol of upward economic 

mobility, drawing unprecedent numbers of 

high school graduates into the colleges, so that 

college education took on more and more the 

nature of a natural right, to be subsidized at 

public expense. 

The effect of this expansion on higher 

education was revolutionary. All institutions, 

public and private, were caught in the spiral of 

rising expectations. Already big universities 

became megaversities, or multiversities with 

networks of multiple campuses. Every former 

normal school became a State college, every 

junior college aspired to become a four-year 

municipal college, and every college set its 

sights on university status with a full array of 

professional schools and Ph.D. programs. 

Budgets expanded, the State appropriations for higher education began to rival 

the appropriations for public welfare. Faculty in most fields was in a seller's market, 

commanding greatly increased salaries, reduced teaching loads, and retirement security—moving, in effect, from the 

traditional academic posture of intellectual 

212 
aloofness to the bargaining position of the 

marketplace. 

Administrations, as well, had undergone 

profound change, responsible for balancing 

multiple interests which, in providing the funds, 

required an influence on governance and 

operations. 

Federal and State programs needed the 

knowledge and talent which only the universities 

could provide and poured billions into the higher 

education budgets in direct proportion to the size 

and prestige of the universities, but at the price of 

shaping their curricula and research productivity 

and reaching deeply into managerial policy. The 

threat of losing Federal funds became a powerful 

leverage on university operations. Even Harvard, 

despite its assertions of independence, and its 

endowments into the hundreds of millions, 

derives half of its operating budget from 

governmental sources. 

Changes in student culture have been as 

profound as the changes in other features of 

higher education. Gone is the tolerance of: 

students to indifferent teaching and doctrinaire 

authority. The underlying evolution of value 

systems is of greater long-range consequence than 

the volatile and sporadic militancy which 

accompanied the changes. 

Higher education was eventually forced to heed 

the warning of difficulties ahead. Fiscal 

overextension of "soft" funds, with even the 

distinction between "hard" and "soft" money 

becoming tenuous; academic overproduction and 

satiation of manpower needs in most specialties; 

changes in Federal operations, programs and 

priorities; decline in students both from the passing 

of the war-baby wave and from the exploding 

myth of the economic value of a degree—these 

were the warnings and the changes, accompanied 

in the 1970's by upheavals in government and a 

drastic downswing in the economy, and upswing 

in inflation. 

Revenue has now fallen off, but inflation 

continues; government programs are curtailed, 

phased out, suspended; research funds are more 

restricted, less accessible and more productdirected; training grants have nearly disappeared 

from all but a few fields. Government, footing the 

bill, is calling the tune and requires an 

accountability on its own terms—not always sweet 

to the academic ear. 

All of which is background to the role of 

higher education in the field of mental 

retardation. The changes have thrown the 

universities into some disarray and have brought 

about searching questions regarding the 

purposes of higher education and its role in 

society. These issues are reflected, among others 

in the massive reports of the Carnegie 

Commission on Higher Education (1973), the 

Assembly on University Goals and Governance 

(1971) and the Newman Report (1971). 

Among the considerations bearing on the 

mental retardation programs which developed in 

the universities in the late 1960's are: 

 The professions, especially medicine, law, 

research science, psychology and social work, are 

showing some trends away from a monolithic and 

isolated professionalism to more flexible, pluralistic 

and socially responsive concepts of training and 

practice. 

 The American university, its associated colleges, 

community colleges and technical schools are 

beginning to reach out to new constituencies 

distributed in more varied types of communities 

and seeking a variety of new services from postsecondary education. 

 The insularity of higher education from the 

actualities of community life is breaking down 

with an increase in the mix of academic and field 

experience at all levels of training and in virtually 

all fields of learning. 

 The demands for "accountability," while 

frequently confused, nevertheless are placing 

constraints on the traditional autonomy of higher 

education. The focus and definition of "academic 

freedom" has undergone some shift from the right 

of the professor to state his knowledge and belief 

without fear of threat to his employment, to the 

broader grounds of the defense of socially 

responsible action as a citizen. 

 While the colleges and universities are once 

more drawing less than a majority of graduates 

directly from high school, they are experiencing a 

wider age range of diversified students seeking 

occupational change, advancement, specialized 

training, secondary occupation, or continuing 

education. 

 The evolution of society, despite its political and 

economic ebb and flow, is toward moving toward 

careers in providing services rather than producing 

goods. Among the service occupations are all those 

which relate to the health and well being of the 

general population, including those

213 
whose disabilities make them more 

vulnerable to the pressures and demands of 

social life. 

• Maintaining adequately distributed 

manpower for both established and emerging 

service occupations is becoming a matter of 

public interest to which government must be 

responsive in order to avoid more economic 

imbalance and mass unemployment. 

From these and other considerations, it is 

possible to view the present functioning and 

current issues facing the participation of higher 

education in the field of mental retardation. 

University Affiliated Facilities (UAF) 

The central concept of a "university affiliated facility" was stated in the 1962 Report 

of the President's Panel in terms of the need for 

"programs of interdisciplinary training 

centered on models of service" (PPMR, 1962, 

p. 175). The Panel emphasized that 

professional training should reflect the 

interdisciplinary teamwork required in the 

delivery of service as a "continuum of care." It 

suggested that the critical time for such 

training is when the trainee begins to apply 

his knowledge, e.g., internship, residency, 

practicum and field work training. 

Furthermore, the settings in which this 

teamwork training occurs should exemplify 

the most advanced models of practice and 

management. Hence the university-based 

program should serve also as a means of 

demonstrating adequate management practices as 

well as new concepts of providing services. 

It was emphasized, however, that care 

should be taken to relate the university 

programs to the initiatives of community and 

State in identifying needs, working out 

appropriate solutions and sharing in the costs 

of service. 

Some elements of this concept were not 

new. Medical education had its historic roots 

in the intimate relation of the apprentice student 

to the established doctor through his daily 

rounds, and with long nights spent in reading 

and study. With the Flexnerian model of 

medical education, the teaching hospital 

became an adjunct to the scientific 

laboratory. In education, the laboratory 

school had at one time been a popular means of 

combining classroom theory with practice 

and still exists in some universities. The traditional period of supervised practice teaching 

has been supplemented in more advanced 

colleges by increasing contact with the active 

scene of learning during every stage of 

preparation. Similarly in the professions of 

social work, clinical psychology, nursing, 

physical and occupational therapy, the 

practicum, field work and clinical internship 

phases have been integral to training. 

The evolving UAF concept was not a 

new device for giving professionals access to 

practical material. It came to involve three 

unique elements beyond the traditional 

matching of clinical to didactic learning. 1) it 

required explicit interdisciplinary interaction in 

the process of diagnosis and evaluation, the 

development of individual program plans and 

follow-through in treatment (person-centered facilitation of development, rather than diseasecentered treatment). 2) No single professional 

discipline was singled out as having primary 

jurisdiction or ultimate responsibility for case 

management, nor was the training in one 

discipline regarded as more critical than in 

others ("continuum of care" implies a 

multidimensional process in terms of the 

manifold characteristics of the person at any 

given time and as a changing pattern with 

varying emphases over time.) Every case is 

unique, evolving, requiring a carefully 

designed plan in which the roles of providers 

are determined by the person's needs rather 

than by protocol. The objectives of training go 

beyond the university setting to the grass roots 

community in which full service provision 

will be a long time reaching fulfillment. 

Hence, the concept included a centrally 

important aspect of outreach, of assistance 

to the community. This means a close 

working relation of the university training 

214
centers, their staffs, their students and their 

graduates, with the service delivery planners 

and providers in community, State and region. 

The general concept of a "university affiliated facility," therefore, includes four 

essential ingredients: 1) training involving 

multidisciplinary experience; 2) demonstration 

of service delivery of a multidisciplinary, 

exemplary nature; 3) applied research in the 

context of service delivery; and 4) 

community outreach, assistance and affiliation 

with external service delivery. The central 

thrust of the concept was in the training of 

manpower along lines consistent with 

progressive service concepts. 

This total concept of the UAF was not, in 

fact, spelled out in the initial legislation which 

gave it life. Part B Title I of P.L. 88-164 

authorized project grants for construction of 

university affiliated facilities which were to 

be "clinical facilities providing clinical 

training of physicians and other specialized 

personnel," and "a full range of inpatient and 

outpatient services for mentally retarded . . 

." which would "aid in demonstrating 

provision of specialized services for the 

diagnosis and treatment, education, training 

or care of the mentally retarded." 

The construction authority was put into the 

hands of the Division of Hospital and 

Medical Facilities (Hill-Burton) of PHS, 

which in September 1964, published the 

regulations defining eligibility and construction requirements. In 1967, after several 

construction grants had been approved, the 

authority was transferred to the Division of 

Mental Retardation shortly before that agency 

was moved from the Public Health Service 

into the newly reorganized Rehabilitation 

Services Administration, eventually 

becoming the Division of Developmental 

Disabilities under the Office of Human 

Development. This political history, with the 

transfer of administrative authority from 

Public Health to Human Development, 

explains in part some of the confusion of 

trends apparent in the UAFs and some of the 

issues which the program now faces. 

The great majority of UAF construction 

projects were developed in conjunction with 

university medical centers which already had 

established on-campus MCH-supported 

multidisciplinary Diagnostic and Evaluation 

Centers under required medical direction. This 

was not only consistent with the language of 

P.L. 88-164 but also subsequently made the 

UAFs eligible for Maternal and Child Health 

grants (under Title V of the Social Security 

Act, for training personnel for health care and 

related services for mothers and children) as a 

principal source of support. 

There were two consequences of this 

eligibility: a) it perpetuated the concept of 

mental retardation as primarily a pediatric 

problem with the implication that the total 

training program should be under medical 

direction, and b) it limited the UAFs to 

giving priority—in fact, almost exclusive 

concern—to young children with moderate 

to severe disability. 

The language of Section 516, Title V, of 

the Social Security Amendments of 1967, did 

not specifically authorize support for UAFs, 

but it was the intent of Congress, with the 

understanding of Maternal and Child Health, 

that the new authority would lend significant 

support to the new UAF programs. Thus, the 

bulk of the funds appropriated under this 

authority have been allocated to the larger 

"constructed" UAFs with the minimum required array of 11 participating disciplines. The 

funds from this source may be substantially 

reduced in the general budget cuts in Federal 

health programs contemplated by the 

Administration. 

The Developmental Disabilities Services 

and Construction Act of 1970 (designed as 

an amendment to P.L. 88-164) provided the 

first authorization for administrative and 

operating grants to institutions of higher

215 
learning for demonstration facilities and 

interdisciplinary training programs for 

personnel to provide quality services to the 

developmentally disabled. This enactment 

deleted from P.L. 88-164 the reference to 

"inpatient" and "outpatient services." It 

substituted "interdisciplinary training" for 

"clinical training" and in other ways made 

the implications less strictly medical. 

The DD Act thereby: a) broadened those 

served from the mentally retarded to those with 

"substantial" developmental disability; b) it 

reduced emphasis on the medical model and 

expanded emphasis on the equality of 

professional service components required in 

interdisciplinary operation; c) it related the role 

of the UAF to the evolution of the total 

program for the developmentally disabled in 

the States; d) it extended the applicable service 

population from children and their mothers 

only, to persons with developmental disabilities 

of all ages; e) DD funding capability was 

restricted to the support of administrative and 

operational costs of the UAF, disallowing 

support for teaching faculty salaries, trainee 

stipends or service functions. It thereby 

provided regulatory control of the total 

program while giving direct support to only a 

fraction of the costs. Although the Act 

continued the UAF construction authority, no 

funds for this purpose were budgeted or 

appropriated. The law itself and especially the 

legislative history, including committee reports, 

urged that existing UAFs be given preference 

for funding under the new law, and that the 

authorization should not be used to expand the 

number of UAFs. 

A significant consequence of the DD Act 

was that it opened a funding umbrella broad 

enough to cover a wide range of operations 

with the designation of "university affiliated 

facility." Section 122 provides for grants to 

institutions of higher education "to cover costs 

of administering and operating demonstration 

facilities and interdisciplinary training programs 

for personnel needed to render specialized services to persons with developmental disabilities." 

The language emphasizes "new kinds of 

training" and gives priority to programs which 

include the participation of a junior college, 

thus providing for training the lower as well as 

the higher echelons of service personnel. 

This change greatly increased the diversity 

of "UAFs," with a marked difference 

between the "constructed," medically oriented programs and those which came in 

under the new dispensation. The latter were, 

of course, subject to the same DD funding 

limitation as the former, but they were less 

frequently qualified for funding under MCH 

regulation and were forced to develop 

programs with quite different "mixes" of 

objectives and support. To a much greater 

extent, the new UAFs tended to be tied 

more closely to cooperating and participating 

departments and tended less to take on the 

character of free-standing institutes with more 

tenuous ties to disciplinary departments. 

A third major source of core support for 

UAFs appeared when the Bureau of 

Education for the Handicapped began in 1967 

to provide specified staff support in addition to 

project grants to selected UAF programs. The 

funds for staffing are allocated from the BEH 

general budget rather than by specific 

legislative language and are limited to the 

support of one special education staff position, 

including ancillary supports, to provide the 

special education ingredient in the 

interdisciplinary training structure. 

The role of this person is specifically 

limited to providing direct training in educational procedures to students and faculty from 

other disciplines, coordinating the participation 

of special education students within the total 

interdisciplinary training programs, and serving 

as liaison with the Department of Special 

Education which must be responsible for 

generic training of students in that discipline. 

Approximately 17 UAFs are supported in this 

fashion, or less than half of the recognized 

UAF operations. 

216 
BEH project grants are awarded on the basis 

of quality, qualification and appropriateness to the 

program, usually reflecting the strength of the 

special education component in the total UAF 

operation. Some of the newer "nonconstructed" UAFs could qualify for BEH 

support, but not the support of MCH, by 

reason of having stronger educational and weaker 

health-related components. 

In summary, core support of UAFs derives 

from three Federal sources, Maternal and Child 

Health, Developmental Disabilities, and Bureau 

of Education for the Handicapped, in descending 

order of magnitude, and in various combinations 

supplemented by supports from State, 

university and community sources. In virtually 

all cases, special project funds from a number 

of Federal sources, including MCH, DD, and 

BEH, round out the budgetary patterns of the 

programs. 

What, then, is a UAF? Taken literally, a 

"university affiliated facility" could be any 

operation attached to but not a part of the central 

organization of an institution of higher 

education. The actions of Congress had 

provided, however, authorizations for a 

particular sort of facility addressed to 

manpower development and training in a 

setting that would exemplify interdisciplinary 

services to individuals with developmental 

disabilities. Under this Federal stimulus such 

diverse programs had developed that it became 

an issue, exacerbated by limitations and sources 

of funds, as to the proper criteria that should 

identify qualification for Federal support under 

the designation of UAF. 

An obvious source of confusion was that 

no official definition of a UAF existed in any 

statute, although several statutes had 

authorized grants for construction, administration, component operation and project 

development with the understanding that they 

all related to what had come to be known as a 

University Affiliated Facility. Yet each 

statutory authority involved its own criteria 

for qualification. The focal authority has 

shifted from Public Health, to Social 

Services, to Human Development. There 

were other university-related programs in the 

same field (MRRCs, RRTcs, BEH training 

programs, and others) which were obscurely 

interrelated. The facilities supported by 

construction funds and presumed to be the 

prototypes of the UAF concept and therefore 

most highly qualified for funds, found a host 

of strange bedfellows clamoring for the same 

limited monetary favors. 

The Association of University Affiliated 

Facilities (AUAF) was designed as a 

means of working out problems of common 

concern and developing objectives of common 

interest. The association also identified criteria 

for eligibility, which was accomplished with 

considerable latitude for variations in origin, 

funding sources and program. 

Finally, in the Developmentally Disabled 

Assistance and Bill of Rights Act of 1975 

(P.L. 94-103) the following statutory 

definition was promulgated. 

The term 'university affiliated facility' 

means a public or non-profit facility which 

is associated with, or is an integral part of, a 

college or university and which aids in 

demonstrating the provision of specialized 

services for the diagnosis and treatment of 

persons with developmental disabilities and 

which provides education and training 

(including interdisciplinary training) of 

personnel needed to render services to 

persons with developmental disabilities. 

(sec. 102(10)) 

Under this broad definition, administrative regulation may make some finer distinctions on grant qualification, but it is clear 

that the UAF concept is now sufficiently 

217 
flexible to include a wider range of operations 

than have as yet used the label or joined the 

AUAF. An estimated 300 facilities in the United 

States would meet the conditions of such a 

definition. 

To indicate the present diversity, some of 

the facilities are single, comprehensive "underone-roof" operations, others form a complex of 

facilities constituting a community delivery 

system. Only 20 of the total number have been 

"constructed" with Federal funds as UAFs, but 

others function no differently and are similarly 

funded. Many do not receive core funding from 

the three Federal sources previously referred to; 

many are supported by State appropriations or 

university budgets. 

One variable of considerable bearing on the 

way a UAF operates is the nature of its 

affiliation with a university. From a sampling of 

organized UAFs, it was possible to distinguish 

four principal types of operation: 

1. Those established as an integral part of a 

medical complex in a university. In a few of these, 

for example, the University of North Carolina or 

Yeshiva University, the Director of the facility 

reports to the Dean of the School of Medicine; 

more frequently, for example, at University of 

Colorado, or University of Washington, to the 

Vice President for Health Affairs; but some are 

attached to a particular medical department, for 

example, Georgetown to pediatrics, UCLA to 

psychiatry, while the director at Johns Hopkins 

reports both to the chairman of pediatrics and to a 

Board of Trustees for the J.F.K. Institute. 

2. Those attached to central university 

administration maintain the same ties with the 

departments of medicine as to non-medical 

departments. In such cases, the director, as at the 

University of Wisconsin, may report directly to 

the chief administrator (Chancellor, or President), 

or to a subordinate central administrator, illustrated 

by the University of Michigan where the director 

reports to the Associate Vice-President for IntraUniversity Programs. In a few cases, attachment 

is through the Dean of the School of Education to 

central administration. 

3. Some facilities have been established in a 

residential institution or hospital with affiliation with 

one or more universities or colleges. The principal 

example of this is the Eunice K. Shriver Center, 

located at Fernald State School, principally 

affiliated with the Department of Neurology at 

Massachusetts General Hospital and secondarily 

with Harvard, Boston University, Brandeis and a 

dozen other colleges and universities in the area. 

Another example is the UAF at Children's 

Hospital, Los Angeles, affiliated principally with 

the University of Southern California and 

secondarily with sixteen other colleges and 

universities. 

4. A number of UAFs are actually multiple units. 

These involve separate but related facilities at 

two or more sites. The most complex is Kansas, 

with three distinct units; the Director of the overall 

Center reports to an Administrative Board. This is 

comprised of the Vice-Chancellor for Research 

and Graduate Studies, representing the KU at Lawrence component, the Executive ViceChancellor of the Kansas University Medical 

Center, representing the Kansas City, Kansas, 

medical component, and the Superintendent of 

Parsons State Hospital and Training Center, 

representing the residential institutional 

component. In Georgia, the principal unit is at the 

Georgia Rehabilitation Center in Atlanta, the 

Director of which reports to the Assistant Director of the State Department of Mental Health; 

while academic program units are located in 

Athens at the University of Georgia, with a 

program coordinator under the Assistant Dean of 

the College of Education. Both Oregon and 

Indiana have two centers, one at the University, 

the other at the Medical Center in another city. The 

two components at Indiana are coordinated by 

their directors, through a steering committee to the 

Vice President for Research and Advanced Studies. 

The two components at the University of Oregon 

remain, apparently, independent of one another; 

the one, involving a medically related approach, 

reporting to the Dean of Medicine in Portland; the 

other involving a more educational and 

rehabilitational approach, being a component of the 

Center for Human Development under the School 

of Education in Eugene. 

In the academic world a table of institutional 

organization tends to reflect the relative status 

and the budgetary and administrative leverage 

of operating units. Traditionally in the American 

university, the Schools of Medicine and Law 

usually occupy relatively autonomous positions 

of more political power than other divisions. The 

UAF was designed to cut across disciplinary 

boundaries to provide a common ground in which 

the interaction among equally competent 

professionals would provide the training milieu 

for individuals preparing to participate 

professionally in the care, treatment and 

rehabilitative development of mentally retarded 

persons. Inevitably this concept has resulted in a 

variety of arrangements of convenience, 

concession and compromise, as well as of 

amicable cooperation in the organization of 

something so essentially novel to university

218
traditions. Faculty and staff in the UAF must 

represent not only disciplines needed in the 

service delivery complex but also be officially 

responsible for granting degrees to students in 

the program. 

The location of UAFs in medical centers 

reflects the persistent tendency to regard mental 

retardation as essentially a disease, even though 

90% of the treatment is non-medical. 

In the reports of some of the medically 

administered UAF programs, the interdisciplinary staff is often divided into the 

"medical" and "para-medical" categories. 

Speech and hearing, psychology and 

sometimes social work as well as nursing, P.T., 

O.T. and dentistry are included in paramedical. 

Education usually escapes this rubric. In 

facilities more directly attached to central 

university administration, the disciplines are 

more often represented in their own right and 

are on an equal footing. 

Most of the directors of medically administered UAFs insist that full parity is 

practiced. In fact, a number of UAFs attached 

to a medical center have non-medical 

administrators but retain medical directors of 

programs. There is always the danger that 

unrecognized influences of professional valuesystems will prevail, however. 

The architecture of UAFs shows the 

changing perspectives of UAF development. 

The early structures reflect the strong medical 

orientation of the original legislation. The 

design is frequently exciting, the decor 

appealing to the children who will constitute 95 

percent of the users, but the organization and 

utilization of space and the general environment is 

more like an outpatient clinic in a general hospital 

than a developmental milieu for a continuum of 

care. 

"Exemplary" service varies greatly in the 

concepts being exemplified. These concepts have 

evolved over a dozen years, and will doubtless 

continue to evolve. Premature obsolescence, 

however, must constantly be guarded against, 

especially when large amounts of money are 

being spent on highly durable structures. 

Some facilities designed to demonstrate 

exemplary service seem less concerned with the 

environment of those being served than with the 

interests of staff and administration. 

All of the UAFs provide a program in 

which students can gain experience and skill in 

working with developmentally disabled persons 

in conjunction with members of other 

disciplines. Most UAFs offer a broad range of 

experience, but differ widely in the emphasis 

placed on the training levels, procedures, and 

student time. 

The graduate level professional trainee, who 

spends not less than five months in the facility, 

is regarded as the heart of the program. These 

may be at pre-masters, pre-MD, pre-doctoral, or 

post-doctoral levels, or may be a rotation in 

internship or a portion of a residency program. 

In all these cases, the student is expected to have 

sufficient background in a generic discipline to 

be able to function with some degree of 

competency. His advancement in such generic 

competency is the responsibility of the 

department from which his degree is to be or 

has been awarded. The center program 

generally concentrates on two principal features 

of training: becoming acquainted with the roles 

and functions of other disciplines involved in the 

treatment program, and acquiring skill by direct 

experience in participating as a member of such 

interdisciplinary service operations. 

The first of these is usually handled through 

a course of orientation seminars conducted by 

the joint faculty; the second by working under a 

preceptor at advancing levels or responsibility 

in the service facility. 

219 
The length of time spent in the program, in 

terms of clock hours, is generally a function of 

the level of training: the least by pre-masters 

students, the most by post-doctorals; although this 

will vary by discipline and the terminal degree 

that is characteristic, the field work normally 

expected, and the nature of practicum, rotations or 

resident practice traditionally required. 

Although practices vary, most UAFs offer 

undergraduates at baccalaureate or associate 

levels formal courses, 

observation/demonstration sessions, or other 

relevant orientation to the interdisciplinary service 

delivery process. In-service training is often 

provided to personnel of area facilities. 

Some UAFs conduct all service training inhouse; others utilize a number of service settings. 

The number of clients varies widely. At one 

extreme, the J.F.K. Institute at Johns Hopkins 

University, with a large inpatient and outpatient 

capability, treated 3,767 patients from January 1 

through December 31, 1975. Among "constructed" UAFs, the J.F.K. Center at the 

University of Colorado sees approximately 700 

children a year. (The Johns Hopkins Institute has 

a budget four and a half times greater than the 

Center at Colorado). Among the newer and 

smaller centers, such as Temple or South 

Dakota, the intensive case load might be less than 

100 annually, supplemented in part by extensive 

outreach or other program features. These 

variations reflect differences in the philosophy 

of training, in the pressures to provide service 

and in the geographic and demographic 

characteristics of the area. 

The role of research and development is 

likewise variously conceived and practiced in 

the UAFs. In some, the UAF is intimately 

related to the activity of a Mental Retardation 

Research Center, with close interaction (e.g., 

Wisconsin, UCLA). At others, there may be 

an MRRC on the same campus, and under a 

common administrative authority, but the 

interaction is minimal. In some, there is no 

appreciable research of any kind. At still others 

(e.g., Utah) the responsibility for developing materials and applying them in widely scattered 

and resource-poor areas of the region is a vital 

element. 

The potential role of the UAFs in training 

manpower to serve developmentally disabled 

persons is essential to the development of 

adequate service delivery. The Association of 

University Affiliated Facilities regards the 

need to develop this role as sufficiently serious 

to have appointed a blue-ribbon Task Group 

under the chairmanship of Dr. George Tarjan 

to develop a plan on the future of UAFs for 

the next decade. With a supporting grant to 

finance the project, the Committee will report 

in 1976. 

PCMR believes that the UAF concept is of 

the utmost importance in reaching the objectives 

for the next 25 years, provided the following 

issues can be resolved. They reflect the problems 

most frequently noted by respondents to an 

enquiry directed to UAF directors as well as 

issues arising in conferences, interviews, and 

direct observations. 

1. Identity. The question "what is a UAF?" asks 

for more than a formal definition. It asks: what is 

the most effective plan for utilizing the resources 

of higher education in training people from a wide 

range of disciplines to work interactively at many 

levels of skill in the delivery of needed services 

to developmentally disabled persons? 

a) How can the existing investment in 

governmentally supported construction of 

facilities provide maximum yield? 

b) Is additional construction on similar or on 

entirely different models desirable? 

c) How can the geographic and population 

distribution of UAFs be best effected? 

d) How can the resources and the redirected 

objectives of educational institutions be best 

utilized in the development of new 

interdisciplinary service professions? 

2. Funding. A complex plan of multiple 

funding from Federal sources to sustain and 

develop the UAF concept was planned in 

1965 but was never coherently authorized 

or sufficiently funded, either for those 

facilities constructed with Federal funds 

with a 20-year commitment for use as a 

220 
personnel training facility, or for others involved in the 

same type of operation. Funding for support was 

presumed to be a joint affair, with several Federal 

sources involved, together with State and university 

contributions and revenue from purchases of service 

sources or fees where that might be allowable under 

Federal regulation. Support was obtained for some 

health-based facilities in unevenly distributed amounts 

from MCH, increasing in total from $3.9 million in 1967 

to $14.3 million in 1974. Fiscal 76 maintained the same 

level of funding. In the meantime, Developmental 

Disabilities entered the picture in 1972 with $4.25 

million which has remained nearly constant since, and 

which provided core administrative support. BEH has 

provided a modicum of core support for the involvement 

of special education. Meanwhile, States and universities 

have experienced increasingly stringent financial pressures from declining economy and unstable 

enrollments; inflation has continued, and the core 

funding has shrunk in value. Meaningful comparisons of UAF budgets are difficult because of the differences in 

size and composition of operations. Virtually all report 

consequences such as the following: 

a) Reductions in faculty, staff, support personnel and 

traineeships. 

b) Insufficient State appropriations reducing ability to provide matching for Federal funds and also preventing 

sufficient independence from Federal funds to make 

establishment of a fee system permissible. 

c) Inflationary shrinkage forcing reliance on special 

projects not necessarily in conformity with best pro- gram design. This also fragments UAF operations and 

leads to loss of goal vision as a result of fiscal opportunism. "Seed" money grants are counterproductive 

when they yield the wrong crop and there are no buyers of the follow-up. 

3. Program. The UAFs have been characterized from 

the beginning by high enthusiasm, with visions of new 

and exciting configurations in the training of professional 

service personnel, new and vitalized relationships between university and community, a breaking down of 

the barriers of insularity between the disciplines, 

especially between the medical and non-medical 

enclaves. Partly because of the heterogeneous way the 

UAFs came into existence, partly because of the fiscal problems noted above, partly because of the 

conservatism of existing academic structures, there is a 

danger of retrenchment into programmatic compromises 

which threaten the original vision. If that vision was 

wrong, it should be proven so and abandoned. If it had 

the merit claimed for it, then any threatening 

retrogressive tendencies should be halted and new 

advances made. Most of the difficulties cited by 

respondents related to their inability to move forward in 

such matters as: 

a) Working through affiliations with community and 

junior colleges, and community-based clinics to train 

personnel for interdisciplinary work in poverty areas, 

among minority groups, and with outreach into rural 

poverty areas. 

b) Follow-up monitoring of handicapped persons served in the UAF and the training of personnel to 

perform such follow-up service. 

c) Production and distribution of educational materials 

for use in the in-service training of personnel away 

from the UAF center. 

d) Addition of new disciplines to UAF, law, internal medicine, clinical pharmacy, public administration. 

e) Research and demonstration programs. f) New professions and service occupations develop- ment: development specialist, human environment specialist, personal advocate. 

g) Development of new audio-visual, 

communications, direction signaling guidance systems 

technology for adaptive behavior support. 

4. Federal regulatory coordination and consistency. Aside 

from the complaints about funds, the most frequent 

comments referred to the conflicting expectations and 

regulations of supporting Federal agencies. Each of the funding agencies, whether Federal or State, places its own conditions on the granting of funds, in terms which extend 

beyond the immediate use of the funds themselves, to the 

milieu in which they are used. Thus each exerts a leverage 

on the structure and operation of the total facility. Naturally, 

there can be only two outcomes to this situation, either the 

facility foregoes some support funds or it hedges on the 

conflicting regulations. Neither of these is satisfactory. The 

general demand is for a coordinated, consistent policy within HEW with consistent monitoring of essential 

regulations and sufficient funding to stabilize the base operation. Supplemental funding can then be dependent on 

specific program components and would be competitive from all available resources. 

A related problem frequently mentioned is that while funding decisions of most Federal agencies supporting UAF 

core operations are made in Washington, those of the Divi- sion of Developmental Disabilities were administratively 

decentralized to the regions. This super-imposed regional 

contingency on the interagency contingency. Recently the 

policy of DD is being changed with the Washington office having the responsibility to approve any regional decisions 

on the creation of new UAFs or changes in funding 

patterns. 

5. Training. UAFs have treated the concept of "interdisciplinary" training in various ways. Some have defined 

it in the operational terms of specific programmed and 

measured achievements; others have assumed it occurs 

when members of various disciplines work in 

juxtaposition with one another. On the whole, most UAFs 

seem to have worked out a procedure by which joint 

contribution with mutual understanding is made to the solution of problems represented by a service case. 

A second problem, however, is that of depth of effect in 

training. Usually, the criterion is one of contact hours under 

some arrangement for supervision and evaluation. Depth of learning is a function of many components and by no 

means easy to measure. This is not unique to the UAF and 

its particular training objectives, but may be more difficult 

in the absence of clear criteria of competency. Associated 

with this is the question of how many and which 

disciplines are necessary to constitute effective "interdisciplinary" training. MCH prescribes 13 disciplines which 

must be present as a basis of eligibility for support funds. 

Variations in objectives and conditions might require a degree of flexibility. 

6. Relations with the university. Universities are 

undergoing change, but they are essentially conservative in the protection of the established collegial prerogatives of 

departmental autonomy in curriculum, teaching, student evaluation, recommendations for tenure and advancement 

and voice in academic governance. Non-academic units are

221 
welcomed if they enhance the opportunities for 

departments to pursue their own interests, tolerated if they 

neither add nor detract, but vigorously opposed if they 

constitute a competitive threat to the faculties' prerogatives 

or interests. 

The UAF has been somewhat ambiguous in this regard. 

Many departments have welcomed a setting which provides a clinical or field experience for their students at undergraduate or graduate level and appreciate the 

importance of interdisciplinary interaction. Problems, 

when they arise, are apt to emerge at one of three points: 

in the control of the student's curriculum, in the faculty 

status of staff members of the facility, in the influence 

exercised by the facility in competing for university funds 

and in influencing university policies. 

UAFs draw their students from many sources. At the 

most advanced levels of training—residency, postdoctoral—they are generally drawn from the national 

scene by competitive application; at lower levels, they are 

likely to be candidates for degrees in programs at the 

UAF home university or at other affiliated colleges or 

universities with whom formal or informal agreements 

have been made. 

To be eligible for MCH support, teaching faculty in the 

UAF must be accepted as members of the appropriate 

departmental faculties in the affiliate university. This involves qualification, selection, and tenure eligibility, rank 

and promotion and comparative salary levels. These 

issues affect the recruitment and retention of quality staff. 

Jointly funded appointments have been tried but are not 

frequent, and usually lead to problems. Most UAFs 

employ their own teaching and clinical staff and fully 

fund them, with an arrangement for courtesy faculty 

appointments without tenure in the department housing 

the discipline. This gives legitimacy to the credits for 

training received in the facility, and.

 a degree of 

professional recognition to the staff person. Frequently 

these values are nominal and do not resolve underlying 

problems. 

The issues of intrusion of the UAF into the decision and 

policymaking process of the university are more 

complicated and subtle. At the present time the majority 

of UAFs are housed within the medical sciences division 

of the university, but usually not attached to the medical 

school per se or to a specific department within it. The 

politics of most university medical centers are such that an 

institute or specialized program is more readily 

administered under the top official than by an academic 

dean or department head. But this may serve to isolate the 

operation from departments and students of importance to 

its purposes, and may give it a somewhat alien status. 

Only UAFs which have a close attachment within the 

medical school appear to have had much success in 

establishing a rotation of undergraduate medical students 

in the program. UAFs attached to the central 

administration of the general university appear to have the 

most degrees of freedom in developing an inclusive interdisciplinary structure, but with the added problems of 

academic distance from the component schools and 

departments. In any case, the problem is one both of 

university administration and of internal politics and is 

highly dependent on the adroitness of the Director of the 

UAF and the political climate of the particular setting. 

7. Operations. The UAF is a uniquely complex organization, combining the diversity of the academic world with 

the practical urgencies of the community and its problems, 

focused on the population with developmental diabilities. 

Problems referred to by respondents included: 

a) The constant flux of relationships with teaching departments of the university and other affiliated institutions. 

b) The multiple commitments of staff to teaching, 

clinical practice, research and consultation. 

c) The problems of case selection and limitation by 

type for best teaching purposes, versus the service 

needs presented by the community. The conflict of 

expectations: is the UAF primarily a teaching facility 

or primarily a service center? 

d) The need for continued change and evolution of 

the UAF to provide leadership to a rapidly evolving 

service delivery complex in the community. 

e) The responsibilities of UAF follow-up into the 

home and community. Many appeared to limit case 

contact to the client's visits to the center; others 

regarded follow-up as integral to continuum-of-care 

service. Most found their resources strained to do both. 

f) Critical space needs for some UAFs, especially 

those not federally constructed. But some of the 

constructed centers are having second thoughts 

concerning the kinds of space and quality of 

environment needed for evolving programs. Some are 

already locked in by architectural rigidity. 

g) The continual, growing volume of time-consuming 

paper work in grant applications, reports, records, and 

information output. 

8. State, local and regional coordination. The UAF, 

although involved in the higher education system, is also a 

part of the total community process of dealing with the 

problems of developmental disability. It therefore interacts 

with all other phases of that effort in the widening circles 

of its environment. 

a) The local community is likely to provide the bulk 

of service clientele to the UAF, but the character and 

milieu of the community service system generates 

unique problems of relationship for each UAF. 

b) The State system of services, especially in the 

nature and interaction of community-responsible and 

institutional-responsible elements, is of special 

concern to the UAF. State systems are highly variable, 

with highly variable relationships between the public 

higher education authorities and the State 

administrative departments. Of particular importance 

to the UAFs are relationships with State DD agencies 

and advisory councils. 

222
c) As mentioned earlier, the UAFs have had 

special problems arising from the regional 

responsibility of the DD funding process, in 

contrast to the nationally centralized funding from 

other agencies. This may now be modified in a 

more satisfactory way. Special problems arise in 

relation to the degree of agreement and coordination between the regional DD office and the 

UAF because of DD's leverage through its funding 

of administrative costs. Part of the problem reflects 

the personnel market which the UAF seeks to 

serve. In some cases, it may intend to train only the 

highest level professional personnel for the 

national market—which makes regional 

considerations appear irrelevant. In other cases, the 

UAF seeks to supply the manpower needs of the 

service delivery system of the region or simply of 

the State, in which case it must be guided in its 

program development by the particular needs of 

that narrower geographic boundary. 

9. National coherence. The UAFs feel themselves to 

be a heterogenous group of operations and 

organizations, bound by somewhat tenuous common 

objectives and by representing in each case the 

conjunction of advanced academic training and 

service delivery of an interdisciplinary nature. Are 

they, or should they be, parts of a nationally organized 

network of such operations? Should they be designed, 

collectively, to meet the total national manpower need 

in the areas of concern? Should they be regionalized, 

to speak to the special character of regional 

environments? Should they be distributed in some 

more rational pattern across the country than they now 

are? Should they serve the States or the regions on a 

center-satellite basis to include the training resources 

of a broad range of colleges, universities and service 

settings? Should the diversity of UAFs be encouraged 

and enhanced, or should there be more emphasis on 

uniformities of objective and operation? 

These questions revert back to the first issue with 

which we began: What is the mission of a UAF and 

what should be the role of the system of UAFs in 

national policy relating to mental retardation? 

The passage of P.L. 94-103 in October 1975, moved 

national UAF policy forward on three major counts: a) 

"University affiliated facility" was formally defined; b) 

grant authority was extended to the feasibility study 

and development and operation of satellite centers, 

either by a UAF singly or by two or more jointly; 

funding is authorized for this purpose. This has the 

effect of laying a foundation for a broader extension of 

the UAF into the community service system and a 

wider utilization of the higher education resources in 

States and regions for this purpose. At this writing, 

appropriations have not been made to implement this 

authority, but it provides necessary training of 

personnel at all levels. c) Authority for additional 

construction and renovation for both UAFs and 

satellites is extended for three years at a modest level 

of $3 million per year. 

The work of the Long Range Task Force on the future 

of the UAF program for the next decade is of the 

greatest importance. In its review and 

recommendations with regard to the role of higher 

education in the training of personnel for service to the 

developmentally disabled, the Task Force will, of 

necessity, relate that role to other roles of higher 

education in the field of disability and to the 

community processes which constitute the scene of 

life for the disabled and the locus of primary service 

delivery. It is to be hoped that the Task Force may find 

in the recommendations of the President's Committee 

as a whole a frame of reference that will be useful in 

its own deliberations. 

Mental Retardation Research Centers 

Part A of P.L. 88-164 authorized the 

construction of research centers in mental 

retardation, to be established in university or 

other settings having demonstrated research 

capability in the disciplines pertinent to mental 

retardation. On the basis of appropriate funds of 

$27 million, matched by $17.5 million from 

other sources, a total of 12 such centers was 

established, the first, at George Peabody College, 

in 1967. One of them, at Wyler Children's 

Hospital of the University of Chicago Medical 

School, involved a grant of only $59,300 for 

movable equipment to complete a total project 

already begun independently. At the other 

extreme, the University of Washington was 

allocated $6.6 million on a $10.5 million 

construction project which in effect created both a 

University Affiliated Facility and a Mental 

Retardation Research Center wholly on the 

basis of Part A funding. All of the MRRCs, 

with the exception of Peabody and Chicago, 

were established in institutions which also have 

constructed UAFs. As previously noted, 

however, there is a wide range in the interactive 

relationships between these two types of centers 

at the various locations. 

The complete list of Research Centers is given 

in Table 4.

223 
Table 4 

Construction Awards for Mental Retardation Research Centers, December 31, 1970 

Institutions 

Total 

cost

Federal 

share 

Estimated

and/or

completion

date

University of Washington, Seattle, Wash ......................... $10,581,204 $6,610,809 4/69

Children's Hospital, Cincinnati, Ohio................................. 3,127,597 1,724,000 10/68

Walter E. Fernald State School, Waltham, Mass ............. 1,790,000 827,000 1969

George Peabody College for Teachers, Nashville, Tenn.. 3,543,547 2,492,900 11/67

University of California, Los Angeles, Calif..................... 3,295,483 1,710,000 7/69

Children's Hospital Medical Center, Boston, Mass........... 4,140,337 2,470,000 11/70

University of Kansas, Lawrence, Kans.............................. 2,921,978 2,150,000 1971

University of Colorado, Denver, Colo............................... 440,000 330,000 7/68

University of North Carolina, Chapel Hill, N.C ............... 3,423,241 2,439,400 1971

University of Chicago, Chicago, Ill.................................... (Movable Research 59,300 1967

Equipment Award)

University of Wisconsin, Madison, Wis............................ 3,219,474 2,263,000 1972

Yeshiva University, Bronx, N.Y ........................................ 8,000,000 4,010,000 2/70

$44,482,861 $27,086,409 

Constructions of the Centers was the joint 

responsibility of the Division of Research 

Resources and Facilities, NIH, and NICHD. 

Continuing support responsibility was given to 

NICHD and its Mental Retardation Branch, 

one of three components in the Child Health 

Program of the Institute, as a mission 

oriented task: "to develop and support 

research aimed at the prevention of mental 

retardation and, when this is not possible, to 

effect its amelioration." (NICHD, 1973, p. 2). 

The support format includes three elements 

specific to the programs, the center grant, 

program project grants and training grants, in 

addition to regular research grants, contracts, 

fellowships and career awards in the standard 

NIH pattern. Although major financial support 

was thus provided by plan from NICHD, it 

was assumed that the centers would 

successfully seek support from other sources 

and would not be wholly federally dependent. 

Nevertheless, the program was developed as 

a massive national effort on the principle, 

exemplified by the National Institutes of 

Health, as well as by the National Science 

Foundation, the National Aeronautics and 

Space Administration, the National Environmental Protection Agency and the 

Department of Defense, that a successful 

attack on problems of broad national 

importance requires strong Federal initiative 

and sustained Federal support. The projection 

embodied in the MRRC planning was for an 

initial period of 20 years of vigorous effort 

on many fronts. 

The center core grant provides support 

for administrative costs, common equipment 

and supplies and allows for support of new 

program development personnel and other 

start-up costs for initiating new programs. This 

form of support was considered so vital to the 

stability of the total program that NICHD 

succeeded in having it earmarked in budgetary 

appropriations, beginning at $2.0 million in 

1969 and rising to $5.6 million in FY 1972. By 

borrowing from the regular research grants 

funds, the core support was increased to $6.5 

million in 1973. In 1974, this borrowing at the 

expense of other program elements was discontinued, which required a 15% reduction in 

center core awards.

224 
The program project grant is designed to 

implement and stimulate the collaborative 

research programs of the centers. They are 

predicated on the complex nature of mental 

retardation, its causes and means of 

prevention. These grants are competitive 

but designed for continuation over a period 

of years with a number of constituent related 

projects sufficient to make significant effort 

possible; merit review and priority rating for 

funding is stringent and requires the highest 

standards of research capability. 

Unfortunately, the funds available have been 

insufficient to make awards for more than a 

fraction of applications with high 

meritorious ratings. A combination of policy 

regulations within NICHD made it 

impossible for the MR Branch to develop 

the program project grant to the extent it had 

proposed to do. In FY 73 the 12 MRRCs 

held a total of 11 program project grants, 4 

held none, with 7 approved meritorious 

projects unfunded. The centers themselves are 

so designed as to be program project oriented, 

and are therefore hampered by the barriers to 

the funding of this approach. 

The regular research grant is made to an 

individual scientist, under NIH procedures for 

merit review by scientific boards organized 

by discipline. 

Table 5 gives the distribution of NICHD 

funds to the MRRCs by type of mechanism 

for FY 73, 74, 75 and 76 projections.

225 
Table 5 

Mental Retardation Research Centers: Budget Summary (in thousands) 

Earmarked fund: 

Core support, 

administration 

research support, 

program 

development

Program projects, 

regular grants, 

research career 

program training 

fellowships, contracts, 

conferences Total 

Fiscal year 1973 ....................................... 5,608 7,777 $13,385 

Fiscal year 1974 ........................................ 5,608 8,875 14,483

Fiscal year 1975 ........................................ 5,608 8,968 14,566

Fiscal year 1976 estimated requirements.. 1 5,608 12,921 18,529

President's budget ................................... 5,608 7,492 13,100

1 The fact that this figure is held constant means core support is actually reduced 30 percent over time due to 

inflation.

Although not alone among federally 

supported programs to suffer reduction of 

funds, the cuts occur at a critical period in the 

development of the program. Research of any 

merit on as complex a set of problems as 

mental retardation requires time and 

continuity. Mental retardation, as a 

developmental disorder must be studied in the 

context of developing human lives, i.e., 

longitudinally over periods of years. Because 

long-term longitudinal studies are difficult and 

expensive and require the long-term 

commitment of scientific personnel, they have 

become extremely unpopular among funding 

sources. Yet, given a 20-year mission target, 

what better opportunity could present itself 

for the kind of project design that would 

really test critical hypotheses over time and the 

course of human development? 

Development of the MRRCs, from the 

initial passage of the legislation enabling 

construction, to the occupation of the last of 

the constructed facilities, took nearly ten 

years. The start-up phase of program 

development utilizing such a facility requires three to five years, involving 

recruitment of scientific staff, application 

and awarding of major research funds and the 

first stages of the projects themselves. 

Twenty years is a short time to come up 

with answers to such complex problems. In 

the first years of the MRRC program much 

was accomplished, supported by a reasonable 

growth in resources as the centers gained 

momentum. The leveling off and decline of 

supporting funds, especially in the restriction 

of the number and funding level of program 

projects from 1973 on, coupled, of course, 

with continuing inflationary costs, has 

enforced a critical reexamination of the 

programs. If funding levels cannot be 

provided commensurate with the legitimate 

requirements of high quality research, then 

hard decisions will be necessary in order to 

prevent quality from deteriorating in the 

effort to maintain a desirable quantity and 

coverage of research. 

The diverse development of the various 

research centers has resulted in supported grants 

and contracts covering virtually every area of 

mental retardation research concern. In terms of 

mission relevance, its range includes three 

levels: 1) basic research, the implications of 

which extend far wider than the special 

problems of mental retardation, yet are 

fundamental to their solution; a wide range of 

programs in such areas as brain development and 

function, the biology of reproduction, cytogenetic processes, learning process, has been 

supported, frequently in collaboration with 

scientists in affiliated departments and laboratories; 2) the attack on problems specifically

226 
and immediately relevant to the known and 

suspected causes and conditions of mental retardation; 

this is the main thrust of the program project grants, 

bringing together a cluster of related projects 

involving a variety of disciplines, directed toward 

a single program target; 3) the clinical and social 

techniques of prevention and amelioration, which 

affect the individual, his family and his community; 

this thrust has been particularly facilitated by 

association of MRRC and UAF in the same 

university in 10 of the 12 centers and sometimes in 

the same building, where translation of 

fundamental research findings into the means of 

human betterment can be brought about. 

In terms of focus, also, the centers vary widely, 

but cover the full spectrum of relevant aspects of 

retardation. It has been emphasized ever since the 

pioneer survey, Mental Subnormality by Masland, 

Sarason and Gladwin in 1958, and the recommendations of the President's Panel in 1962, that 

research in mental retardation cannot be limited to 

either the biomedical or the behavioral aspects but 

must embrace both. The research problems of 

greatest importance require the close interrelation 

of a number of scientific disciplines, not only 

within the biological or within the behavioral, but 

between these two hemispheric sectors of the full 

problem. Hence, in its support of mental 

retardation research, NICHD has, from the 

beginning, recognized the full multidisciplinary 

nature of the problem and the fallacy of developing 

separate programs and sources of support for the two 

hemispheres. 

Yet it is difficult for universities, even the 

most advanced, to muster top quality research 

resources and skills equally in all fields. Each will 

have its specific area of greatest strength and 

should have the opportunity to develop 

interdisciplinary organization around its strongest 

assets. As a consequence, three prototype centers 

have evolved: (1) broadly based programs involving medical schools, other graduate schools 

and basic biological and behavioral departments; 

these would include UCLA, Einstein, Fernald, 

Kansas, Washington, Boston, North Carolina, 

and Wisconsin; 

(2) more narrowly focused programs in the 

biomedical sciences, with the behavioral in a more 

ancillary position, exemplified by Cincinnati, 

Colorado and Chicago; (3) more narrowly focused 

programs in the behavioral sciences with 

secondary involvement of biological fields, 

typified by Peabody. Overall, the biomedical 

emphasis has been somewhat preponderant in a 60 

to 40 ratio of distribution of space, manpower and 

other resources. 

The quality of research reflects the quality of 

talents in the research scientists. Money, space and 

other resources help to obtain the best talent, but do 

not guarantee it. The overall quality of the 

MRRCs has been a consequence in no small 

measure of the role played by the Mental 

Retardation Research Committee as a stable, 

continuing, scientific review body established by 

the NICHD MR program in conjunction with 

the center grant mechanism of core support. 

A representative sampling of research reports is 

given in a special issue of Am. J. Ment. Def. 77, 5, 

March 1973, and in NICHD, The First Decade, 

a report prepared for the National Advisory 

Child Health and Human Development Council, 

March 26, 1973. 

The Search for Causes 

Many of the centers are concerned with 

the exploration of genetic and biochemical 

aspects of the problem. Work at Fernald, 

Boston, UCLA, Cincinnati and Chicago is 

illustrative of ongoing work conducted also 

at other centers. At Fernald and Boston there 

is basic research on the structure and 

functions of brain RNA, together with 

clinical and genealogical observations of 

retarded persons and their families, with 

related metabolic studies. At Boston techniques of amniocentesis have been devel227 
oped to identify genetic defects predictive of 

mental retardation early in pregnancy. At 

UCLA specific quantitative studies of 

populations at high risk for genetically determined 

metabolic abnormalities are being carried out by 

new methods of mass spectrometry. Analytic 

studies of data derived from national screening 

for PKU are nearing completion at UCLA. 

The work at Cincinnati on agents producing 

congenital-malformations, begun many years ago, 

is continuing to yield new information. At 

Chicago investigators have found abnormal 

metabolism of certain carbohydrate substances 

related to syndromes involving severe mental 

retardation. 

Studies at Washington, UCLA, Cincinnati 

and elsewhere on the effects of lead, mercury 

and other toxic environmental agents are 

exploring the biological and behavioral effects 

of subclinical levels of these substances found in 

the blood of persons living in high-pollution 

environments. 

The search for biological causes of retardation 

has led many researchers into the still very cloudy 

area of nutritional deficiency. Scientists at 

Colorado have identified a possible mechanism 

underlying the effect of poor nutrition on 

formation of amino acids and myelin in the 

developing brain. Other investigators at 

Wisconsin have concentrated on the effects of 

high phenylalanine on brain development. 

Studies of nutrition and low birth weight are 

also being done at UCLA and Yeshiva. 

Human cytogenetic research has direct 

application to diagnosis, genetic counseling and 

prevention, and is of concern in the Research 

Centers. It is firmly established that Down's 

syndrome, the most frequent form of viable 

chromosomal anomaly, involves a specific 

chromosomal deviation, but determinants are still 

unknown. Studies are ongoing at a number of the 

centers to attempt to isolate these factors. 

The great majority of mentally retarded 

persons do not exhibit the features of biological 

damage but rather of mild levels of mental 

impairment. The causes appear to be associated 

with social and economic disadvantage and with 

recurrent low intelligence in the extended 

families to which they belong. 

The relative bearing of polygenic determiners of intelligence and of environmental 

depressants on normal intellectual development 

is being debated. A landmark study at Wisconsin 

is attempting to determine whether systematic 

intervention, before the age of six months, 

involving both mother and child living in 

poverty can alter the probability of retardation 

in the child. Positive findings over a six-year period strongly indicate cultural stimulation to 

mother and child under these conditions, can, 

indeed, prevent retardation from occurring. 

The continuation of this investigation and the 

pursuit of similarly targeted projects is of 

paramount importance in the development of 

strategies to reduce the incidence of culturally 

induced retardation. 

Ongoing early intervention studies are part 

of the programs at Peabody College and 

Chapel Hill, North Carolina. At Kansas a 

project has been developed in a public housing 

project for Blacks, attempting to change parentchild interaction styles, promote new teaching 

strategies in ghetto schools and induce stronger 

motivation and achievement among 

disadvantaged adolescents. 

North Carolina has initiated a program 

project on language development in children 

selected before birth from low-income 

families; involving a cluster of six projects, the 

program will attempt to identify which abilities 

are crucial to later success and to develop 

techniques to strengthen these abilities. Kansas 

has concentrated heavily on communication 

factors in children, demonstrating among other 

findings, the selective sensitivities of newborns to 

auditory stimulation. 

228 
Early identification of mental retardation 

or conditions which may lead to it are a 

priority consideration at a number of centers. 

Some—e.g., Boston—have been concerned 

with techniques of diagnosis prenatally. 

These techniques make it possible to detect a 

number of chromosomal disorders, errors of 

metabolism and kernicterus, as well as gross 

deformity such as anencephaly. Other 

centers—e.g., UCLA, North Carolina—

have been concerned with perinatal 

screening methods that can be applied 

routinely to every live birth. 

Techniques of Amelioration 

When prevention of retardation is not 

possible because of lack of knowledge of 

causes or techniques of timely intervention, 

then the problem focuses on ameliorating the 

condition as much as possible. A major 

research emphasis of the MRRCs is on the 

development of the knowledge and 

techniques necessary to maximize the child's 

assets for growth and minimize the practical 

effect of development deficits. 

North Carolina has approached the 

problem of ameliorative intervention 

through a program emphasizing special rewards, incentives and positive learning opportunities. UCLA, working with children 

with manifest neurological and physiological 

deficits has explored the means of 

minimizing the effects of early injury and 

deprivation. George Peabody College and 

others have found parent training to be one 

of the most effective channels in helping 

mildly retarded children escape their 

retardation. The Universities of Washington 

and Kansas, as well as Peabody, have 

concentrated on new teaching strategies. 

Yeshiva has conducted special studies to 

discover the neurological basis for sensory 

integration. Washington has worked especially with the Down's syndrome child to 

increase language development, motor skill 

and self-help. Fernald has developed an 

automated technique to teach severely retarded children simple reading skills, not 

hitherto believed possible. 

Research Utilization 

The NIH organization of federally sponsored research as a whole is concentrated on 

basic or fundamental research and has 

assumed that other sources would supply 

backing for translation of findings into 

clinical and other applications. The dichotomy between scientist and engineer or 

scientist and clinician has been traditional in 

the academic world and frequently in the 

industrial/professional world as well. Such a 

division is less practical in the field of mental 

retardation in which fundamental research is 

mission-oriented and the arena of practice is 

desperately seeking foundations of 

knowledge. This was recognized in part in 

the establishment of all but two of the 

MRRCs in universities also harboring 

University Affiliated Facilities for training 

of service-oriented personnel. 

The hope was that through collaborative 

and communicative processes the findings of 

the scientists would be translated into fieldtestable procedures in the training programs 

and exemplary service models and hence 

disseminated to the service community as a 

whole. To a degree, this has been successful, 

but only where the UAFs and MRRCs have 

formed a truly collaborative alliance as at the 

Universities of Washington, UCLA, 

Wisconsin and Kansas. Elsewhere, the 

MRRC has developed its own programs of 

application, field testing and dissemination, as 

at North Carolina, with little 

communication with the UAF, or at 

Peabody College which has no UAF but 

is closely linked to the application-oriented 

programs of special education training. 

As a total research enterprise, the MRRC 

program has supported grants and contracts 

which cover virtually every area of mental 

retardation research concern, biological and 

behavioral. We still lack much of the 

knowledge of biological and 

229 
behavioral phenomena needed to provide 

practical solutions, however. We must not be 

misled by such spectacular discoveries as the antipolio vaccines and penicillin. Mental retardation 

is not a disease entity traceable to an infectious 

organism which may be brought under control. 

Only that small but significant segment of 

retardation resulting from measles, rubella, 

congenital syphilis and similar infections has 

responded to immunological and antibiotic 

techniques—and, in turn, immunological 

reactions themselves have become a new 

source of neurological damage, signifying the 

still unplumbed depths of human biochemistry 

and physiology. 

The issues that face the MRRCs in particular 

and the mental retardation research functions of 

universities in general revolve around financial 

support, and mission orientation. 

The research role of universities over the 

past quarter century has become increasingly 

dependent on Federal support. Even in medical 

schools, the contributions from State or private 

contributory sources have been largely for 

buildings, not for research. 

The graduate schools, both in and out of the 

medical centers became increasingly dependent 

on training grants and research grants for the 

conduct of research programs during the 1950's 

and 1960's. Among criteria for the retention, 

promotion and tenure of faculty, efficiency in 

procuring grants became second only to the 

list of published works. 

Several factors have resulted in severely 

reduced Federal supports to research in the 

universities: 

a) Training grants rapidly began to disappear, 

beginning about 1969, as the supply of Ph.D. 

level manpower in most fields began to meet the 

level of demand. NSF and NDEA fellowships 

and traineeships phased out; most of the NIH 

traineeship programs either phased out or reduced 

to minimum levels or were channeled to areas 

still in short supply or representing an area of 

new critical national need. 

b) Research funds became more and more difficult 

to obtain because appropriated funds were reduced 

and competition increased. More and more 

constraints appeared on the types and targets of 

research projects likely to receive priority ratings. 

c) The prevailing disposition of Congress and 

of many of the granting agencies shifted away 

from individualized, scientist-related grants to 

mission-oriented and problem targeted grants 

within designated areas of national significance. 

The attempt of universities to replace lost 

Federal support with increased State and private 

supports has been largely unsuccessful. Subsidy 

by industry came under some suspicion of 

subversion of academic objectivity; State 

legislators, harassed by mounting costs of 

higher education and reacting to campus disruption, were not prone to pick up the tab for 

research which often appeared more esoteric 

than practical. Even in medicine, pressures 

mounted to concentrate more on health service 

delivery and less on the production of 

research products and personnel. 

Because mental retardation research was 

targeted or at least mission-directed, it received 

relatively favorable growth in support over a 

period of years. Scientists were often 

reluctant to yield to the constraints of programtargeted projects, but have generally shown a 

change of attitude, if only because the money 

was there. 

One of the problems with mission-oriented 

programs is that they are subject to the ebb and 

flow of public and official concern. It was in 

order to safeguard against this danger that the 

MRRCs were developed on a 20-year format 

of agreement with the universities. The 

universities, of course, assumed Federal 

commitment to support the operations over 

that period of time. But no government 

subject to periodic reconstitution by election is 

irrevocably bound by the commitments of its 

predecessors. Hence, changing administrations 

bring changes in priorities. 

The MRRC program is largely but by no 

means wholly supported by NICHD. Within 

the Institute, the MR program is one of three 

constituting the Child Health Program, and 

has developed to equitable status within that 

group of programs. The MR program, 

differing somewhat from other NIH 

operations, has emphasized mission230 
orientation, a balance of biomedical and 

behavioral research, collaborative studies 

constituting targeted program projects, and a 

responsibility for the translation of fundamental 

research into field testable applications for prompt 

insertion into the arenas of practical prevention 

and amelioration. 

Current issues are developing which are a cause 

for concern in relation to all these elements: 

a) The mission orientation of the MRRCs has 

been conceived as relevant to prevention and 

amelioration of mental retardation, and therefore 

covering all investigations which are 

demonstrably in such a direction. But there is a 

current tendency to limit supported research to 

certain critical aspects of the developmental 

process—e.g., the perinatal period of interaction 

between mothers and infants, in terms of low 

birth weight, nutrition, etc.—at the expense of a 

broad-gauge attack on the multiple critical areas 

that generate or exacerbate mental retardation. 

b) NICHD's MR program has considered 

biomedical and behavioral problems as inseparable 

and complementary; but there is a possibility that 

the Institute will conceive its mission to be 

wholly biomedical with linkages to behavioral 

processes sought through collaboration with other 

agencies (e.g., NIMH) responsible for behavioral 

phenomena. 

c) The mechanisms by which research grants are 

reviewed for priority rating appear to militate 

against the program project in relation to the 

regular individual grant; a current regulation 

restricts the awarding of program projects to no 

more than 25% of available research funds, 

whereas 80% of the operations of MRRCs 

tend to be of a program project nature. Loss 

of this type of resource would seriously cripple 

the development and mission effectiveness of 

the MRRCs. 

d) The distinctions between pure and applied, 

between fundamental or basic and clinical research, 

are to a degree artificial. The MRRCs have 

conceived these types of research to be 

continuous not dichotomous. A tendency to 

limit Federal funding of MRRCs in such a way as 

to prevent or seriously impair the transition from 

discovery of basic process to application in 

prevention would be a serious setback to the 

objectives of the MRRCs as now constituted and 

to their developing linkage with the UAFs. It 

would appear that in such eventuality the 

margin of MRRC and UAF operations would be 

a necessary step. 

e) Of even greater significance to the role of 

universities in mental retardation, is the 

maintenance of the integrity of programs which 

have been based on a time–effective commitment 

and mutual agreement of at least a 20-year period. 

The changes of personnel and perspectives in 

both the higher educational institutions and in the 

Federal agencies produce temptations to divert 

effort to new missions. When this occurs at the 

expense of missions which have not yet run their 

course, the result is not only economically and 

scientifically wasteful, but a gross breach of faith. 

When resources are in limited supply, the 

multiplication of specialized research entities 

which divert resources from missions already in 

place serves no useful purpose. Modification of 

presently existing programs is to be expected as 

time and successive discoveries bring new 

problems and prospects into view—that is how 

scientific inquiry progresses. But discontinuity 

of effort can be fatal. 

The problems of mental retardation and 

associated disabilities will not be solved without 

continued, intense, broadly based and highly 

skilled research effort in the universities of the 

world. The United States has developed the 

research capabilities of its major universities to a 

level where now, for the first time, a united attack 

on the fundamental problems of mental 

retardation is really possible. To lose momentum 

just as the summit is in view would be tragic. 

University Rehabilitation Research and 

Training Centers 

A third product of the President's Panel 

recommendations of 1962 involving higher 

education was the development of three University 

Rehabilitation Research and Training Centers 

devoted specifically to the rehabilitation of 

mentally retarded persons. The panel expressed 

urgency for new knowledge and trained 

professional and para-professional personnel to 

provide dynamic leadership in assisting mentally 

retarded persons to reach their fullest levels of 

social, emotional, educational, and vocational 

competencies. 

The authorization for the establishment of 

Research and Training Centers at universities had 

been embodied in Section 4 (a) (1) of the 

Vocational Rehabilitation Act of 1961. 

Appropriation for the first two centers, with 

emphasis on medical rehabilitation, occurred in 

1962 with grants to New York University and 

the University of Minnesota. From this 

beginning, a total of 19 RRTCs have been 

developed. All are operative under the 

Rehabilitation Services Administration with 

supporting grants ranging from $250,000 to over 

$1 million annually. Twelve centers specializ231 
ing in medical rehabilitation are affiliated with 

university medical schools. Three specialize 

in vocational rehabilitation, three in mental 

retardation rehabilitation, and one in deafness 

rehabilitation. The latter seven are attached to 

non-medical units of universities. The three 

Mental Retardation Centers were established on 

the basis of appropriated funds in 1965, at the 

Universities of Oregon, Wisconsin, and Texas 

Tech. 

Each of the RRT centers is located at a 

University with sufficient resources in the 

appropriate departments to support multidisciplinary research and training in a variety of 

rehabilitation-related specialties; but the university 

must also be in a setting that encompasses 

sufficient service delivery facilities to provide 

the clientele and practicum resources 

appropriate to the programs. 

While each Center has its own unique 

concentration of interest they have fundamental 

responsibilities in common, as mission-directed 

operations. The goal sought is the development 

of new knowledge and its reflection in expertly 

trained people, that will help mentally 

retarded persons to develop and utilize their 

potential abilities, to gain personal independence, vocational employment and social 

acceptance in the home and community. 

Research emphasis is therefore of an applied 

and clinical nature, encompassing the psychosocial-educational-vocational-behavioral aspects 

of preparing persons for life. 

Training responsibilities emphasize the wide 

dissemination and application of research 

findings and new knowledge through longand short-term instruction of professional, paraprofessional and other personnel working in the 

wide variety of rehabilitation-related areas. 

More specifically, the training functions may 

concentrate on: expanding and strengthening 

training in rehabilitation fields with personnel 

shortages; training of researchers as well as 

service personnel; incorporating rehabilitation 

education into all rehabilitation-related university 

undergraduate and graduate curricula; improving 

the effectiveness of service delivery by 

conducting a variety of inservice and continuing 

education programs to enhance the knowledge and 

skill of students, professional and volunteer 

workers, consumers, parents and any others 

involved in the rehabilitative process. Public 

information and education is also an 

important responsibility. 

It is evident that there are areas of interconnection and overlap in the objectives and 

program conceptualization of the RRTCs, the 

UAFs, and to some degree the MRRCs. At 

Wisconsin, all three are housed in the same 

physical setting, the Waisman Center, and 

interact closely in the overall development 

of that University's mental retardation programs. 

At Oregon, the main focus of the UAF is 

at the Medical Center in Portland; on the 

Eugene campus, the RRT Center is one of a 

group of operations included in a Center on 

Human Development which also embraces 

the Eugene UAF and a number of educational 

projects. 

Of the medical schools with Medical 

Rehabilitation Centers, only the University of 

Washington and the University of Colorado 

also have Mental Retardation Research Centers. 

This suggests a recurrent problem of relating 

government supported programs concentrating 

on more "basic" research to those concentrating 

in applied research in the same general field. 

University of Wisconsin 

The University of Wisconsin Rehabilitation 

Center was inaugurated in 1964 as the 

Interdisciplinary Mental Retardation 

Training Center. In April 1965, it was 

broadened to become the Regional Reha232 
bilitation Research and Training Center in 

Mental Retardation, and in 1974 moved into 

the new facilities of the Harry A. Waisman 

Center on Mental Retardation and Human 

Development, where the administration of all 

of its operational programs is now located, in 

conjunction with the UAF and MRRC 

programs of the Center. Retaining the Center's 

categorical focus on the development of 

mentally retarded persons, its core personnel 

are administratively organized under the 

Department of Studies in Human Disabilities, 

which houses all of the university's programs in 

rehabilitation and special education and contains 

the university's major concentration of personnel 

whose professional interests are in the 

behavioral aspects of human disability. The 

center's program participants, however, include 

personnel from a broad spectrum of professional disciplines, including psychology, social 

work, communicative disorders, rehabilitation 

counseling, educational psychology, psychiatry, 

pediatrics, neurology and genetics. 

The major research focus of the Wisconsin 

program has been on (a) problems requiring 

interdisciplinary collaboration in long-term 

longitudinal research studies, (b) applied 

behavioral analysis and modification and (c) 

variables related to the education-rehabilitation 

needs of the mildly retarded adolescent. 

Some relevant examples: The "Milwaukee 

Project" (a) has engaged the full resources of 

the UAF, MRRC and RRTC units of the 

Center. This has been, as we noted earlier, a 

landmark research project, now in its seventh 

year, which has found strong evidence to 

support the hypothesis that mild "culturalfamilial" retardation is a result of the 

conditions of poverty, and related to the low 

intellectual functioning of the mother. 

After six and a half years of carefully 

designed experimental research, the Milwaukee 

Family Rehabilitation Project has demonstrated 

that the status of families at risk can be markedly 

improved through techniques of total family 

rehabilitation and that the cultural familial 

retardation of children occurring with high 

frequency in inner-city families with retarded 

mothers can be prevented by appropriately designed intervention. 

The Laboratory of Applied Behavior 

Analysis and Modification (b) the second 

research focus of the Wisconsin RRTC, 

concentrates on technologies to rehabilitate 

mentally retarded adults with unusually difficult 

rehabilitation problems of a behavioral nature. 

The laboratory is designed in five research and 

development sections and related supportive 

services involving: instrumentation and 

environmental design; remediation of 

behavioral deficits; development of workrelated behaviors; techniques of behavioral 

change; and utilization of laboratory findings in 

applied settings. 

The third research focus (c) is carried out 

in the Laboratory of Client, Family, School 

and Community Variables Related to the 

Education-Rehabilitation Needs of the Mildly 

Retarded. This project has been recently 

inaugurated as a longitudinal study of 

programming processes and practices for the 

mildly retarded adolescent at the critical phase of 

education and training leading to the securing of 

employment. The main focus is on the current 

lack of knowledge about educationally retarded 

adolescents who, upon leaving school, have not 

received or been exposed to services related to 

training and vocational opportunities. 

233 
The training program of the Wisconsin 

Rehabilitation Research and Training Center 

involves on campus, short-term interdisciplinary training for professionals; a field 

institute program assisting State rehabilitation 

agencies in the development of one-to-threeday institutes on a statewide basis within the 

region served by the Center; and an 

interdisciplinary leadership training program for 

full-time graduate students in any of the 

rehabilitative disciplines. The first two 

programs are conducted in collaboration with 

the RRTC in mental retardation at the 

University of Oregon. 

A new venture in outreach training is a 

general orientation course, "Introduction and 

Orientation to Mental Retardation," 

conducted over a four-month period on 

statewide educational television. 

University of Oregon 

The University of Oregon Rehabilitation and 

Research Center in Mental Retardation is 

currently in its tenth year of operation. The 

outreach of the Center's program is primarily 

to the rehabilitation and social service agencies 

of HEW Regions VIII, IX, and X. 

The programs of the Oregon center are 

ordered to four major goals: 

 to implement multidisciplinary programs of 

research focusing on the major community 

adjustment problems in the life span of 

mentally retarded individuals. 

 to contribute to the education of advanced 

graduate students and service providers who 

work in the area of mental retardation. 

 to provide rehabilitation services to mentally 

retarded clients as part of, and in support of, 

Center research and training programs. 

 to provide consultative research and training 

services to rehabilitation agencies in the 

Western United States. 

The research program has been both 

multidisciplinary and programmatic in nature, 

and has completed 61 research projects. During 

the first years of operation, a number of basic 

experimental research programs were 

developed, centering on the learning 

characteristics of retarded people and on 

application of behavior modification principles 

to the vocational training needs of severely 

retarded adults. These were followed by a shift 

in research emphasis to deal with a broader 

spectrum of the problem of community 

adjustment. 

Current research programs emphasize 

various aspects of the evaluation of rehabilitation services to mentally retarded 

people: 

 The identification and measurement of social 

and prevocational competencies that are 

critical to post high school community 

adjustment of mildly retarded young adults. 

This project has led to the development of the 

Social and Prevocational Information Battery 

(SPIB), a set of nine tests designed to assess 

knowledge of skills and competencies regarded 

as important for the community adjustment of 

mildly retarded people. The SPIB has been 

developed to the stage of broad utilization in 

both individual and program evaluation. 

 A nationwide survey of community 

residential facilities for developmentally 

disabled people. This is a counterpart aspect of 

the national goal of reducing significantly the 

proportion of retarded individuals residing in 

comprehensive institutions. The present 

project was scheduled for completion in July 

1975. 

 The development and implementation of a 

planning and evaluation strategy that can be 

used by State developmental disabilities 

councils throughout the country. This phase in 

collaboration with the Oregon DD Council 

was completed in July 1974. In the current 

phase, center staff members are responding to 

requests for assistance from State DD Councils throughout the country in collaboration 

with the Development Disabilities Technical 

Assistance System (DDTAS) of the 

University of North Carolina. 

A new grant to the Oregon RRT Center will 

initiate a substantial research and demonstration on 

the analysis, dissemination, utilization and 

adoption of deinstitutionalization resources. 

The Oregon RRTC training program 

consists of both long- and short-term elements. 

The long-term program is directed towards 

university graduate education through regular 

course offerings and a doctoral fellowship 

program intended to attract students in training 

for any of the helping professions in the field 

of mental retardation. 

234 
The short-term program constitutes the main 

training thrust of the Oregon Center in terms of 

numbers involved and direct effect on 

rehabilitation practices. Its main purpose is to 

disseminate new research findings to agency 

practitioners in the field, through either offcampus field workshops or on-campus 

seminars and institutes. 

The field workshops program provides 

inservice training at the request of State agencies 

for the benefit of personnel employed by public 

or private agencies at State or local level, at a 

site selected by the collaborating State agency. 

Forty-six such short-term workshops have been 

conducted in 18 States, many sponsored jointly 

by the RRTCs at Oregon and Wisconsin. 

Campus seminars have consisted of three to five 

days of intensive training, bringing to the 

Oregon campus participants from the 12 western 

states. The 43 campus seminars have served a total 

of 1,056 trainees, representing the range of 

helping disciplines, the largest group being 

rehabilitation counselors. 

Texas Tech University 

Texas Tech University at Lubbock was 

established in 1971 as the RRTC site to serve 

the area comprising HEW Region VI. It has 

developed to an active center with a staff of 18 

full- and part-time personnel and a combined 

annual budget of $284,000. The center works in 

coordination with the academic staffs in 

psychology, special education, engineering, business administration, speech and home economics 

as well as with public and private agencies 

serving mentally retarded persons in the region. 

Research activity is developing in four 

primary areas of priority: 

 Development of an empirically-based 

curriculum in mental retardation with emphasis 

on substantive content and methods. The first 

phase of the project has been to define and 

analyze the need; the second will be to develop 

materials and methods to meet the needs and to 

test them in the field. 

 Rehabilitation of the multiply handicapped. 

Emphasis here is with deaf retarded and the 

blind retarded individuals. A completed project 

has demonstrated that retarded persons who are 

also blind can be trained to participate in 

productive work. A national survey is now in 

progress of the prevalence of deafness among 

the retarded population. Returns indicate that 

between 2.5 and 3.2% of retarded persons in 

residential facilities are classified as deaf, and 

5.4 to 6.3% as hearing-impaired. An analysis of 

expressed needs is being made as a basis for 

positive program development. 

 Vocational evaluation. This project involves 

the development of an automated vocational 

assessment battery designed to provide 

information concerning presently existing 

individual work skills of retarded clients in 

rapidly prepared and concise reports to 

vocational counselors. It attempts to match a 

description of skills to specific job 

requirements and develop an efficient, 

conveyor-belt form of presentation of tasks 

with automated scoring and reporting. Another 

project explores the physical work capacities 

of the client in terms of energy expenditure—a 

significant factor in determining suitability of 

certain types of work. 

 Community adjustment and training. The 

Texas RRT Center has launched three related 

projects: development and evaluation of a 

halfway house to prepare retarded persons for 

community living; exploration of the nature 

and effectiveness of group homes as 

environments assisting retarded persons to 

maintain jobs in the community and develop 

toward greater independence; analysis of patterns 

of adjustment and factors which underlie success 

and failure in moving from institution to 

community. 

The training program at Texas Tech has 

concentrated on deinstitutionalization. Five 

training conferences were held for 

approximately 160 individuals employed by 

rehabilitation and mental retardation agencies in 

the five-State region. These conferences were 

centered on the themes: 

Extended Living (group homes) 

Interdisciplinary Programming for the 

Multiply Handicapped 

Developing Social Skills in the Developmentally Handicapped 

Protective Services for the Developmentally Handicapped 

Structured and Unstructured Employment of 

the Mentally Retarded 

235 
Texas Tech has recently been awarded a 

multiagency grant for the training of voluntary 

agency personnel as a means of facilitating 

services to the developmentally disabled by 

insuring the most effective and efficient 

deployment of appropriate federal-state 

programs. This will be accomplished by 

developing a nationwide cadre of trained 

volunteers and staff within NARC, UCP, EFA, 

state DD Councils and other DDconsumer 

groups who have demonstrated expertise in 

understanding, implementing and monitoring 

major federal programs which benefit developmentally disabled persons.

Contributions of Rehabilitation Research and 

Training Centers other than those specifically 

designated for mental retardation have been 

frequent, illustrating the recurrent thesis that 

mental retardation is interconnected with every 

other category of disability. Projects of 

significance to the field of mental retardation 

rehabilitation have been conducted at New 

York University R and T Center in Deafness in 

cooperation with Yeshiva University involving 

deaf mentally retarded children; at Temple and 

Northwestern Universities in a collaborative 

study by RT Centers in Medical Rehabilitation 

on systems of service delivery; and at George 

Washington University R and T Center in 

Medical Rehabilitation in a developmental 

stimulation training program at Forest Haven, a 

D.C. facility for the mentally retarded. 

Special Education Research and Training 

The most extensive involvement of higher 

education in the field of mental retardation is in 

special education. Although special education 

programs of training, research and technical 

assistance cover the spectrum of exceptionalities, 

including the gifted, the largest single component 

has been mental retardation, accounting for the 

training of approximately one-third of all special 

education personnel and for a large share of the 

research development. In recent years, special 

education has been less categorical in its general 

approach, while increasingly recognizing the 

need for carefully prescriptive management of 

teaching and learning in relation to individual 

disability characteristics and needs. 

More than 300 higher educational institutions in 

the United States are involved in special education 

personnel training programs, most of them 

including mental retardation. These programs are, 

as noted in Chapter 10, heavily supported by 

Federal funds from the Bureau of Education 

for the Handicapped, and in most instances work 

in close association with the corresponding 

divisions of State departments of public instruction. 

The profession of special education has grown 

enormously over the past quarter century with 

increasing recognition of the right of handicapped 

persons to educational development and the 

responsibility of the public schools to provide it. 

The recognition that the teaching of disabled 

children requires special training and talent grew 

with the increasing demand that special education 

be taken seriously as a worthwhile and necessary 

enterprise. Such recognition has gradually 

extended from providing educational opportunity 

to the least handicapped to those more severely 

disabled. 

At the present time, by court judgment and by 

statute, it is becoming well established that all 

children have a right to publicly supported 

education regardless of the severity of disability. 

There has also been an increasing expansion 

downward to the early childhood years, and 

upward into the adult years. The growth of 

public awareness of these needs, reflected in State 

program development and appropriations, 

together with expanded Federal involvement 

and support, has placed increasing pressures on 

colleges and universities to provide the required 

professional leadership, personnel training and 

new knowledge and resources to meet the demand. 
Although personnel in the general field of 

education has more than met the demand in recent 

years, special education personnel is still in short 

supply. The Bureau of Education for the 

Handicapped estimates that at present only 

50% of handicapped children and youth are being 

served, with a large share of them served 

inadequately. The Bureau estimated in 1974 that 

an additional 260,000 teachers would be required 

to provide full service, with current output (about 

20,000 new teachers per year) sufficient only to 

maintain present program levels. The extent of 

development of the "mainstreaming" program 

may cause revision in the composition and 

volume of personnel needs. The expansion of 

program in the public schools will depend on the 

complex of factors which govern program 

change and fiscal operations in the public 

domain—usually conservative and currently 

under heavy financial burden. Nevertheless, 

there are signs of growth which indicate that 

there will be overall positive response to 

Federal and State incentives now being 

provided. 

New developments in Schools of Education 

across the country have profound implications 

for special education. Increasing emphasis is being 

put on student career development, so that entry 

into education is based more on personal and social 

considerations than heretofore. Some, but not 

enough, schools offer earlier and more extensive 

field experience, which assists in making career 

decisions more realistic. Entry into a special 

education major is increasingly based on the 

student's initial and favorable contact experience 

with handicapped children. This experience will 

become more important as universities train 

personnel to work educationally with severely and 

profoundly retarded children. 

A second trend in teacher education is in the 

development of competency-based norms for 

qualification and certification in specialties. This 

means less haphazard methods of assigning 

teachers to specialized programs where unique 

competencies are required. 

A third trend is toward field-based team 

experience in which, for example, the student in 

special education of the mentally retarded 

develops competency in conjunction with other 

persons training for other interactive roles in the 

school and community educational setting. This 

makes for a training that better integrates the 

special educator with the educator of the nonhandicapped, and is a foundation for the 

integration of handicapped children into normal 

social and learning situations. 

A fourth tendency in teacher education is 

toward the implementation of individualized 

instruction to which lip-service has been paid for 

many years. It would appear that some movement, 

at least, is being made to shape learning experience 

to the learner. This has been recognized as essential 

in special education, where individual variants in 

learning need and capability are critical. It may well 

be that the success of special education in this 

regard has been influential in breaking through 

the lockstep barriers of prevailing educational 

practice in general. 

BEH's increasing leadership and support is 

being felt in university and college special 

education programs. BEH policy is to work with 

State departments of public instruction and higher 

educational institutions as a catalyst in 

increasing the effectiveness of direct programs 

being conducted by State and local educational 

agencies. Fifty-six State and territorial 

education agencies have a working arrangement with BEH in developing quality 

programs for handicapped children; and the more 

than 300 training and research institutions in special 

education are linked with both BEH and the State 

agencies to form a national network for the 

production of quality personnel, program resources 

and more effective practices. 

237 
The primary role of the colleges and 

universities is in meeting manpower needs 

through the training of quality personnel for 

professional leadership in higher education, 

classroom supervision, consultation and 

administration, as well as paraprofessional 

assistance in State and local programs, and the 

training of regular educators to work with 

handicapped children. 

Since Public Law 85-926 was passed in 

1958, approximately 32,000 Federal 

traineeships have been awarded to individual 

students preparing to work with mentally 

retarded children. The traineeships have been 

awarded both through participating colleges and 

universities and through State agencies, with 

support funds accompanying the student stipends 

to assist the training institution in program development. State agencies in recent years have 

used their allocations largely for inservice 

upgrading training of special educators. 

Emphasis in the training programs currently 

focuses on three principal objectives: 1) to 

provide professional leadership and teaching 

personnel adequately trained in sufficient 

numbers to provide proper educational services 

for all handicapped children and youth by 1980; 

2) to increase the availability and quality of 

personnel and programs of early childhood 

education as a means of minimizing educational 

retardation; 3) to develop personnel training and 

educational programming for the severely 

handicapped. These three goals are listed in 

order of their current advancement. 

The numbers of career teachers and 

administrators in special education has increased 

substantially, and, although a considerable gap 

remains to realization of the full goal, the 

movement has acquired a momentum that can 

carry it forward if sustained at Federal, State and 

institutional levels. 

The concern with early childhood education 

is relatively recent and still is not generally 

accepted as the responsibility of public education 

systems. Recent research findings on the effects 

of early intervention, especially in 

disadvantaged populations, has increased 

pressure on educational authorities to assume 

early childhood education as their legitimate 

concern. Head Start, which has been controversial in terms of its operations and its effects, 

nevertheless opened the door to serious 

consideration of early programming. 

Experimental "Home-Start" programs, 

providing assistance to mothers in creating a 

more stimulating learning environment in the 

home show great promise of effectiveness. 

However, both the programming and 

personnel preparation for work with very young 

children are still in early developmental stages. 

Recent developments in the courts upholding 

the right of the handicapped to educational 

opportunity, have been followed by Federal 

legislation (P.L. 93-380, Education 

Amendments of 1974, Title VI B, and P.L. 

94-142, Education for All Handicapped 

Children Act of 1975) underscoring the 

responsibility of the States to protect the 

educational rights of the handicapped not now 

being served, and by legislation in a number of 

States instituting a "zero-reject" policy of 

educational opportunity. This means, among 

other consequences, that public agencies must 

now take seriously the problem of teaching severely and profoundly mentally retarded 

individuals whose learning capabilities have 

hitherto been largely ignored except in a few 

State residential institutions. 

The educational movement, designed to 

reduce the degree of dependency of severely 

handicapped children is also linked to the 

deinstitutionalization movement in an effort to 

retain these children in the community. The 

problem, from the educator's standpoint, is twofold: how can effective learning be brought 

about and who is sufficiently skilled to do it? 

238 
During the past decade techniques of training 

lumped under the general rubric "behavior 

modification" have become rather widely used 

in institutional settings and have found their way 

also into departments of special education. The 

fairly sophisticated and complex techniques of 

operant and classical conditioning were 

developed in experimental psychology as a 

behavioristic approach to learning. Popularized 

by B. F. Skinner, many of the techniques were 

applied to the shaping of deviant behavior 

patterns in severely retarded persons. 

Mingled with theoretical elements and 

operational techniques from a variety of 

sources, "behavior modification" has become 

a catch-all term for almost any teaching 

technique which employs "reinforcement" 

by rewards or punishment in a systematic 

way. Practices vary from rigidly 

controlled, automated and depersonalized 

use of electronic teaching mechanisms, to 

highly personalized, flexible interaction of 

teacher and child in which the social 

milieu provides the principal cues and 

reinforcements. Unconscious eclecticism, 

combining elements of Piagetian 

developmental concepts with Skinnerian 

behaviorism, plus common sense, 

characterizes a great deal of the "behavior 

modification" currently being taught and 

practiced in special education departments 

and in the training programs for the severely 

and profoundly retarded. This is not to 

disparage the theory of operant conditioning 

and its practice in "behavior shaping" under 

appropriate conditions. It is to point out that 

there is currently a great deal of naive 

enthusiasm for procedures not clearly 

defined nor well understood and a groping 

for the solution to problems that have been 

quite foreign in the past to the professional 

educator. 

What is called for is a broadening of the kind 

of experience exemplified in the best of the 

University Affiliated Facilities, of interdisciplinary collaboration of psychologists, 

special educators, social workers, occupational 

and physical therapists and others needed to 

help severely handicapped children to develop. 

Nor can the necessary research background in 

learning process, personality development, 

sensory-motor-cognitive functioning and all the 

correlative processes be ignored. 

Unless basic and applied research is continued 

and adequately supported, it will hardly be 

possible to meet projected educational goals. 

The newly augmented emphasis on educational 

opportunity for the severely mentally disabled 

person reveals the great gaps in knowledge and 

technique lying behind the need to train teachers 

and other workers to do an effective job in this 

area. It has been amply demonstrated that even 

the most profoundly retarded human being can 

learn. Knowledge of how learning occurs, and 

the skills to channel that learning is a task for 

higher education, in which the interdisciplinary 

methods of the UAFs have shown the most 

promising approach. 

The Bureau of Education for the Handicapped has, as indicated earlier in this chapter, 

participated in the UAF operations, providing 

supports in seventeen or more institutions to 

provide the linkage for training between the 

service facility and the department of special 

education. There is hope that this program can be 

expanded and linked with the traineeship program 

to provide broader experience than is now 

possible in many special education 

departments. 

Obviously, the universities have broad and 

urgent research exploration facing them in 

relation to the learning and educative 

processes. Much, indeed, is currently going on, 

not only in the MRRCs, UFAs and RRTCs, 

but also in schools of education and other 

disciplines relating to these problems. Of 

special importance to the educator is 

increasing knowledge of the sensory 

modalities and their complex inter239 
action in cognitive development; social 

stimulation and its role in early cognition and 

communication; developmental staging and the 

modifiers, inhibitors and accelerators of stage-tostage advancement; the clarification of the 

"critical period" concept in bio-cognitive 

development. Many more problems of an 

essentially fundamental nature remain to be 

explored and illuminated. 

As in all research having urgent practical 

objectives, there is a need to translate new basic 

knowledge into the means of forging new 

tools to improve the lives of retarded persons. 

There is also a need to test promising leads 

over a period of time, in order to protect 

against mass application of unverified 

techniques and also to determine the 

implications of the individual developmental 

schedules of retarded persons. We actually 

know very little about the developmental 

differences between a Down's syndrome 

individual and a person with the normal 

chromosomal complement. Persons with 

Down's syndrome have obvious delays in 

language and motor development, apparent 

learning plateaus at certain stages, an earlier than 

usual onset of physical aging (they now have a 

better chance of surviving to later age), and 

occasionally observed late spurts in cognitive 

capability. We lack the longitudinal studies that 

would guide the educative process, although 

studies at the University of Washington 

suggest that much of what we assumed to be 

maturational delay in the Down's individual 

was a result of environmental factors and subject to acceleration by stimulation. 

BEH has actively supported research in the 

educative process, with concentration on the 

improvement of educational practice. By 1974 

over 500 BEH-supported projects relating to 

mental retardation were in the ERIC 

information system. At the same time, 

reflecting the advancement of knowledge, 

validated curriculum materials developed 

largely in the universities and designed for 

mentally retarded groups have been developed 

and are available in the areas of social learning, 

arithmetic, science, physical education, and selfhelp skills. 

A major development fostered by BEH as 

an outgrowth of the research program is the 

development of Area Learning Resources 

Centers and of Regional Resource Centers. 

These two methods for disseminating 

curricular information and providing technical 

assistance to State and local school systems 

have now been merged into a total of 13 

Regional Resource Centers covering all State 

and territorial jurisdictions. 

The RRCs concentrate their service-tosystems effort on appraisal of handicapped 

children, diagnosis of learning disorders and 

prescription of educational programs for 

handicapped children. The intent is to develop 

data-coded information systems that will assist 

the classroom teacher as well as other direct 

service personnel to respond effectively to 

individually diagnosed educational need. The 

RRCs are concentrating their efforts on 

development of resources and services for the 

unserved, underserved and difficult to serve 

segments of the handicapped population, for 

example, the inner-city and rural poor 

populations, including a high percentage of 

ethnic minority individuals, the very young 

and the severely and multiply handicapped. 

Some RRCs are attached to higher education 

institutions, others to State educational agencies. 

Table 6 identifies the RRCs as currently 

constituted.

240 
Table 6 

Regional Resource Centers 

Title, contractor, location: States served:

1. Northwest Regional Resource Center, University 

of Oregon, Eugene, Oreg. 

Alaska, Hawaii, Samoa, Guam, Trust Territory, 

Washington, Idaho, Oregon, Montana, 

Wyoming. 

2. California Regional Resource Center, University of 

Southern California, Los Angeles, Calif. 

California. 

3. Southwest Regional Resource Center, University of 

Utah, Salt Lake City, Utah. 

Nevada, Utah, Colorado, Arizona, New 

Mexico, B.I.A. Schools. 

4. Midwest Regional Resource Center, Iowa 

Department of Public Instruction, Des Moines, 

Iowa. 

North Dakota, South Dakota, Nebraska, 

Kansas, Oklahoma, Iowa, Missouri, 

Arkansas. 

5. Texas Regional Resource Center, Texas 

Education Agency, Austin, Tex. 

Texas. 

6. Great Lakes Regional Resource Center, Wisconsin 

State Department of Public Instruction, Madison, 

Wis. 

Minnesota, Wisconsin, Michigan, Indiana. 

7. Illinois Regional Resource Center, Peoria Public 

School District, Peoria, Ill. 

Illinois. 

8. Ohio Regional Resource Center, Ohio State 

Department of Education, Worthington, Ohio. 

Ohio. 

9. Northeast Regional Resource Center, New Jersey 

State Department of Education, Highstown, N.J. 

Maine, Vermont, New Hampshire, 

Massachusetts, Rhode Island, Connecticut, 

New Jersey. 

10. New York Regional Resource Center, City 

University of New York, New York, N.Y. 

New York. 

11. Pennsylvania Regional Resource Center, 

Pennsylvania State Department of Education, 

King of Prussia, Pa. 

Pennsylvania. 

12. Mideast Regional Resource Center, George 

Washington University, Washington, D.C. 

Delaware, District of Columbia, Maryland, 

Virginia, West Virginia, Kentucky, 

Tennessee, North Carolina. 

13. Southeast Learning Resource Center, Auburn 

University at Montgomery, Montgomery, Ala. 

Louisiana, Mississippi, Alabama, Georgia, South 

Carolina, Florida, Puerto Rico, Virgin Islands. 

We have concentrated in this chapter on activity 

stemming from Federal programs, the UAFs, the 

MRRCs, the RRTCs and the special education 

supports by BEH. While these various centers 

undoubtedly represent institutions in the forefront of 

the field, they by no means constitute an exclusive 

club of mental retardation advocates. In many 

universities particular departments have made 

outstanding contributions either in research or training—various departments in medical schools, 

departments of psychology, schools of social work, 

departments of speech pathology and audiology—in 

all the disciplines, in short, touching on the concerns 

of mental retardation. 

In present perspective, the need to sustain this 

active interest and to expand and develop it is a first 

priority. The contributions of higher education are 

absolutely indispensable to progress in the field. 

A second priority, however, is to bring the 

departments, schools and institutes where interest in 

retardation exists into closer touch with one another 

to provide the perspectives of interdisciplinary 

interaction. 

Closely allied is the development of closer 

interrelationship between the academic centers of 

research and training and the arena of service 

delivery where the true object of concern is the 

disabled person in need. 

A fourth, and final priority requires close 

relationships among all concerned agencies—public 

and private, Federal, State and local, academic and 

professional—to concentrate on the really central 

problems of mental retardation. These problems 

include the isolation and control of biomedical 

causes; the relief of environmental conditions which 

breed cultural familial retardation in pockets of 

poverty and developmental disadvantage; the coordination and development of service delivery 

systems which integrate the mentally retarded person 

into the life of the community to ameliorate his 

disadvantage and to augment his independence and 

self-sufficiency as a human being. 

241 
References 

UAFs 

Masland, R., Sarason, S., and Gladwin, T. Mental 

Subnormality. New York: Basic Books, 1958. 

President's Panel on Mental Retardation. A Proposed 

Program for National Action to Combat Mental 

Retardation, 1962. 

MRRCs 

This section relies heavily on NICHD: Mental 

Retardation, The First Decade, a report 

presented to the National Advisory Health and 

Human Development Council, March 26, 1973; 

NICHD: Mental Retardation, A Program 

Perspective, presented to the same Council, June 24, 

1974; testimony presented to the House Committee 

on Appropriations, by J. J. Gallagher, and personal 

sources. 

RRTCs 

The principal source of information for this section is 

a series of four articles by Joseph Fenton: "Research 

and Training Centers in Mental Retardation, Parts I, 

II, III, IV" in Programs for the Handicapped, Office 

for Handicapped Individuals, Washington, DHEW 

Publ. OHD 75-22000, 74-6 to 75-4; Nov. 1974 to 

June 1975; and Fenton, J. "Contributions of University 

Rehabilitation Research and Training Centers to the 

Rehabilitation of Mentally Retarded Citizens," 

Education and Training of the Mentally Retarded, 

CEC/MR 10-1, Feb. 1975; also Research Directory of 

the Rehabilitation Research and Training Centers, 

Fiscal Year 1974, DHEW, 1974. 

Nanda Ward Haynes, CEC 

242 
Office of Child Development 
244 
Chapter 13

The Economics of Mental 

Retardation 

In current economic values, each severely 

or profoundly retarded child who survives birth 

represents a potential economic liability of 

nearly a million dollars in combined costs of 

lifetime care and loss of normal lifetime 

productivity.* There are other liabilities which 

cannot be expressed in monetary terms—the 

diminished attributes of human experience, the 

pain of wounded and disappointed parenthood, 

the stress of family life, the constant burden of 

care, anxiety, perhaps guilt or shame, the 

perpetual frustration. 

Severely and profoundly retarded people 

represent the extremes of economic and 

human cost, but with a current prevalence in the 

United States of approximately 300,000, the 

aggregate is a staggering economic and human 

burden. The human waste is less for those of 

moderate to mild impairment, but there are 

many more of them, so again the aggregate 

loss is impressive. 

The economic problem of mental retardation 

centers on the methods by which society 

attempts to reduce the liabilities in both monetary 

and humanistic terms, and the means by which the 

cost is distributed among the constituents of 

social organization. 

The problem of human waste resulting from 

disabilities was not treated as a matter of major 

concern by economists until the time of the 

Great Depression of the 1930's. 

That era saw the beginning of a new 

American ideology, elements of which 

included setting the rights of survival, income, 

health and other basic needs over 

classical property rights, with government 

as the setter of community goals and the 

*Conley, Ronald W. The Economics of 

Mental Retardation. Baltimore: The Johns 

Hopkins University Press, 1973. 

arbiter and provider of individual and community 

needs. 

The Social Security Act of 1935 assured 

minimum income not only for economically 

deprived children and old people—two groups 

regarded as economically most dependent—but 

also for a handicapped group, the blind. These 

provisions later extended to all types of 

disability affecting economic security. A 

protective approach was thus reflected in the 

Social Security Act amendments which 

created the Aid to the Permanently and Totally 

Disabled program and the "adult disabled child" 

provision of Social Security Insurance. A 

rehabilitative approach found expression in the 

Vocational Rehabilitation Act and its 

numerous amendments. A developmental 

approach took the form of subsidized special 

education in the Education for the 

Handicapped Program. These approaches all 

represented distinct economic strategies on a 

public scale for dealing with mental retardation 

as one form of personal, social and economic 

disability. 

Mental Retardation in the Economic Process 

Economic behavior involves mechanisms 

that are familiar features of everyday life: 

productive work, the marketplace, money and 

price. Economics is concerned with the manner 

in which goods and services are created, 

provided and used. Goods and services are the 

embodiments of value that are traded in the 

economy. The locus of distribution where 

transactions take place is the marketplace. The 

common carrier of value in the transactions of 

the marketplace is money. The mechanism 

which regulates the money-values of exchange is 

price. Entry into the marketplace requires the 

possession of money (or its equivalent in 

credit) or the ability to work, which is a 

primary commodity of value having its price in 

the marketplace. 

245 
Mentally retarded and other disabled 

 ability to 

he 

 of others for the goods and 

ire to live and to satisfy other 

human needs. 

re 

 at degrees of 

di

nly 

until they are worn 

ou

e 

eing 

vices 

of education and training. We purchase 

commodities as protection against anticipated 

losses which would be greater than the cost of 

protection. We build dams to prevent 

disastrous floods; but we may also use the dams 

reproductively in generating hydroelectric 

uce 

y 

ose 

in 

 differently, and the question 

e 

e 

f 

persons are likely to be deficient in

work and are therefore dependent on t

work and wealth

services they requ

The marketplace in modern industrial 

society is a vast matrix in which commodities of 

virtually unlimited variety are bought and sold

through such complex labyrinthine processes 

that only the invention of electronic computers 

has kept it within the bounds of human 

management. 

Despite the colossal magnitude of the Gross 

World Product, there are many who cannot 

find a market for their labor. Those who a

mentally retarded are

sadvantage in being able to contribute a 

significant productivity to the economy and at 

great disadvantage in obtaining the necessities 

of life or the means of improving their 

condition. To the degree that the normal 

economic means are lacking, retarded persons 

depend upon the external community, not o

for the immediate necessities of life but also for

the means of reducing their dependency. 

Both tangible materials and useful acts are 

bought and sold in the marketplace; we call 

them goods and services, respectively. Some 

goods and services are bought as 

commodities simply to be consumed for the 

satisfaction they give and are used up in the 

process. Clothes are worn 

t or no longer desirable. They may be handed 

on to satisfy more marginal desires, eventually 

become rags, and finally are carried away by th

refuse collector. 

Other commodities have the effect of r

producing or increasing their value in be

consumed. Life-sustaining goods and services 

renew the energies by which we work. 

Machine tools and technological devices 

increase human productivity; so do the ser

power. Investments in reproductive or 

protective commodities are regarded as 

economically desirable if the outcomes prod

or conserve more value than their cost. 

In the field of mental retardation, custodial 

care represents non-reproductive expense. The 

goods and services are used up, with the end 

product of keeping people alive and in 

minimally good health, perhaps with some

further consummatory satisfactions included. It 

may also satisfy the family's desire to have a 

retarded member in a place of security, or a 

community desire to have the deviant person out

of sight and out of mind. Consummatory satisfactions are not to be despised. They constitute a

great part of the joy of living and the qualit

of life. Some of the greatest values are th

which are intrinsic with no end beyond 

themselves. One of the errors of the past was 

the belief that mentally retarded people were 

incapable of esthetic enjoyment, hence money 

spent on pleasant surroundings, comfortable 

furnishings, on music, art and the means of recreation were thought to be pure waste. We

now know

becomes one of priorities, not absolutes. 

Developmental, rehabilitative and supportiv

services and the foods required for them hav

reproductive value in increasing the selfsufficiency and productivity of otherwise 

dependent and non-productive people. Here, 

again, present knowledge requires the revision o

old assumptions. 

Retarded people do not have constant, 

unchangeable levels of ability. Learning is 

possible even in the most severe cases, al246 
tho just 

n increased competency, which 

dim

re not 

conomic savings and economic 

inc

 and 

abs s 

f 

led individuals and their 

fam ures 

fficient 

h 

s to 

s—

n 

llar 

bseugh the limits of learning vary greatly

as they do in the general population. Babies 

with congenital impairments do not remain 

babies; they develop and grow and respond to 

stimulation. Development and learning yield 

consequences i

inishes dependency costs and increases

productive potential. Supporting services and 

prosthetic contrivances assist in making potential 

productivity actual. 

Hence, educational, rehabilitative and 

supportive services for retarded people a

wasted. The e

rements are real. The questions to be 

considered involve the relationship of 

investment to outcome in terms of the most 

effective and efficient means of obtaining the

most desired ends. 

Investment in research into the causes of 

retardation and into programs of prevention 

have the effect of reducing occurrence

thereby the economic and human waste

incurred by every case of human disability. 

Compared to the savings in the eradication of 

endemic cretinism, the cost of the research that 

led to the discovery that it results from the

ence of trace iodine in the human diet, plu

the cost of producing iodized salt is infinitesimal. The savings, if they could be calculated, 

would be in the order of millions to one. The 

question is one of priorities, organization and 

public understanding of the nature of this kind o

investment. 

In general, then, the economics of mental 

retardation involves the question of the extent 

and the manner in which the limited economic 

resources of disab

ilies are supplemented by public expendit

and investments in consumable goods and 

services, developmental and rehabilitative 

programs with supporting services, and 

programs of research and prevention. The

issues involve the definition of outcome values 

in both humanistic and economic terms, the determination of the most cost-effective and e

means of attaining those values, and an analysis 

of the marketplace for such goods and services 

in relation to the general economy. 

Mental Retardation in the Service Market 

As public protective and rehabilitative 

programs have grown in the American

economy over the past 25 years, mentally 

retarded individuals have secured increased 

benefits. It is estimated that in 1976 nearly 

two billion dollars will be spent by the U.S. 

Department of Health, Education and Welfare 

on mental retardation services and income 

maintenance, with eight to ten times as muc

expended by the States. 

The call for public money to support expanding demand for human services is now 

confronted, as are all social programs, with the 

limitations on such moneys and the increasing 

price of services. Economic forces far greater 

than these service programs are having a 

pronounced effect. To realize how much mental 

retardation services are at the mercy of larger 

economic forces one need think only of 

energy shortages, shifting centers of economic 

power in world markets, inflation, reduced 

national production levels with high unemployment, cries from industries and cities for

economic rescue, and confusing calls for tax 

and welfare reform. 

Today the provision of human service

meet the needs of mentally retarded persons is 

subject to prevailing conditions of scarcity. 

This scarcity is not only absolute—there not 

being enough to go around to meet all need

but it is relative as well. Some needs lose out i

competition with others, such as national defense 

over social welfare. Within social welfare 

there may be a tendency to favor social 

programs that represent an investment 

possibility such as rehabilitation, where a do

spent today may realize many dollars of su

247 
quent productivity. There may be a parallel 

tendency to limit programs for those who 

cannot themselves become productive. Th

decisions in such matters are not purely 

economic, but reflect the ethics of social 

equity. 

The market principle of economics rests on

the expectation of some balanced representation 

of consumer and supplier in the marketplace. It 

is there that money i

e 

s traded for goods and 

se be 

t 

etarded 

t 

s. One does not go to 

pu ad, 

r. 

ing 

es what is good for the consumer 

an

d 

r 

reduction or elimination of the problem of 

e 

d 

ts 

of n 

ts. 

d 

changes in price, but in this case, the 

intervening role of government with its 

complex legislative and taxing processes,

rvices. Buyers and sellers are expected to

able to negotiate on fairly even terms. 

In the human services marketplace there are a

least four special problems for mentally r

consumers. 

First, the market is not so visible as for mos

other commoditie

rchase a social service as one does bre

clothing, housing, or the services of a lawye

The transaction is more indirect and may look

to the ultimate consumer more like an 

arrangement provided for him than someth

that he directly buys and pays for. The 

purchaser may actually be the government and

the consumer may be more in the role of 

supplicant for whatever is available through the 

funding process. 

Second, the market balance is weighted on 

the side of the supplier. The handicapped 

consumer is at a disadvantage in expressing his 

demands. The social agency or the professional 

expert decid

d provides it according to some established

guidelines. 

Third, there are different consumer voices 

in the field of mental retardation. The retarde

individual rarely appears in person in the 

marketplace. He is often represented by his

family members who have needs of their own 

for services because of his condition. Thei

needs are not likely to coincide fully with his 

and may even be counter to his. There are also 

public consumers who are seeking the 

mental retardation. They may seek services to

deal with broad community problems irrespective of the effect on the needs of specific 

individuals. 

Fourth, there is a serious confusion of role 

among consumers and suppliers. A voice for th

consumer, such as an association for retarde

citizens, may become so dissatisfied with i

inability to obtain the services it seeks that it 

may decide to produce them itself. It then 

becomes a supplier as well as a consumer. In 

some cases, the government, as funding agent, 

contracts with such an advocate organization 

to act as its supply agent. The supplier may 

also have a need for some community benefit, 

which casts him also in the consumer role. All 

 this muddies up the operation of the huma

services market. 

Despite such market conditions, the position 

of the consumer has been strengthened in 

recent years by help from a neutral corner, the

courts. On Constitutional grounds the courts 

have found in a variety of cases that consumers, 

i.e., handicapped individuals, are entitled to 

public education, treatment when in institutions, 

care under least restrictive alternatives, access 

to facilities, and the exercise of other righ

The consequences have frequently been 

financially and administratively awkward for 

public suppliers. There have been delays and 

obstacles in the fulfillment of court decisions. 

By according consumer rights to numbers of 

persons previously denied service, such as 

mentally retarded children excluded from 

public schools, court action has, in effect, 

created a new volume of purchase credits on 

the supplying agency and thereby swelled 

demand. There has not been an immediate, 

responding increase in the supply of schools an

special education teachers. 

Market adjustments between supply and 

demand are ordinarily accomplished through

248 
is more concerned with procedures than with

price. It is difficult enough for public servic

to secure additional money for increased dem

but a substantial increase in demand can

inflationary and can increase significantly

amount o

es 

and, 

 be 

 the 

f funds needed. 

ool 

ed

Pr

omy, 

 is the 

tplace may exercise them at 

th

be 

ed and answered as to whether a 

do

t in 

tly 

taken place in the American economy. Under 

the general rubric of systems theory a new 

approach to economic management has 

rican space program is the most 

vi

st 

t the facts of their lives to the 

m

 

In one instance, a court has held public 

officials in contempt of its judgment. The court

argued that if resources are limited and 

consumers are entitled to equal benefits, then

the level of the benefit must be reduced for all.

Retarded children entitled to public sch

ucation should not have to wait for it until 

more public revenues are generated and all 

"normal" children provided for. 

oblems of Accountability 

and Justification 

The market process for services is highly

significant for mentally retarded individuals as 

we enter the last quarter of this century. In an 

atmosphere generated by a sagging econ

an increase in demand is not likely to get a 

favorable hearing; on the contrary, there

threat of retrenchment in social programs and 

budget. 

Retarded persons who have earned new 

rights in the marke

e expense of rights previously enjoyed by 

others. Economic resources must always 

evaluated in terms of the alternative uses to 

which they may be put. In situations of demand 

for services not governed by broad equity 

principles, such as public schooling, questions 

must be ask

llar spent on a program for retarded persons is 

more beneficial than one spent in some other 

way. 

It is therefore not surprising that the interes

the economics of mental retardation has been 

focused on costs rather than services. Critical 

questions raised today concern efficiency and 

effectiveness of services in relation to other uses 

of resources. 

A new management revolution has recen

emerged, facilitated by the technology 

associated with high speed electronic data 

processing machines and computers. The 

successful Ame

vid witness to this revolution. 

The systems approach has come somewhat 

late to the field of human services, where it 

has encountered some special problems. Of fir

importance, the essential information required

is not available. It can come only from a 

diverse body of consumers and direct service 

suppliers who represent every social, cultural, 

regional and economic group in American 

society. The means to acquire uniform and 

reliable information from such diverse sources 

has not yet been devised. This situation is 

complicated by the reluctance of many 

consumers to trus

emories of these machines for use in still 

undeveloped systems. 

A related problem is that the agencies who 

supply human services cherish sovereign 

privileges. They cannot be easily enticed into 

centralized systems of information reporting 

and control. 

A further problem is the absence of welldeveloped and accepted means of measuring 

benefits in the human services field. Without 

these, there are no ascertainable "products" by

which to judge either qualitatively or 

quantitatively the value of service outcomes. 

Correlative to this problem is the lack of specific

Univ. of Iowa, Dept. of Pedodontics 

249 
cost-benefit accounting. While cost accounting

methods are in general well developed, they 

must be applied to comparable items, and 

comparability is still lacking in the field of 

human services for mentally retarded persons. 

Program evaluation requirements of federally 

subsidize o 

r

 is 

le, 

ants to be 

countability 

fiable and 

not bas

i

nsive 

s 

d 

ch 

hat can be applied usefully only to 

val

of 

ardation 

n 

o base further 

ef

r, 

or 

omist. 

, vice-

 on 

Education, and Welfare, 

nderl 

k culminated in the 1973 

pu

dation and 

t 

Handicapped, prepared a report on benefit-cost 

analysis for mental retardation programs. This 

two-year effort produced a useful publication 

(Cohen, et al., 1971). Dr. Conley was one of the 

contributors. 

Conley, in his own major work, after estimating the social and economic costs of 

retardation, analyzed benefits of services in 

relation to costs and the relative efficiency of 

such services. He then projected future 

beneficial service policies. 

d services have only recently begun t

eflect service outcomes rather than service 

structures and operational mechanics. 

The problem of resistance to accountability

difficult to overcome without the use of coercive 

sanctions by funding sources. While 

accountability is currently supported in princip

its application to the responsible person or 

agency often generates evasion or protracted 

negotiation. The vulnerable party w

certain that any measures of ac

which might find him short are justi

ed on arbitrary bureaucratic dicta. An 

mportant factor in this mistrust is the lack of 

uniform, consistent and reasonable standards 

among government agencies themselves. 

Finally there is the problem of the cost of 

measurement itself. It will continue to give way

to estimates and myths so long as it cannot be 

accomplished with economy and efficiency. 

Mental retardation, therefore, is an expe

disability which requires effective, efficient and 

economical remedial measures. It is, however, in 

the difficult bind of all human services. It must

compete with other demands upon public fund

in a period of sagging or slowly recovering 

economy. Therefore, it must justify its demand 

for support in terms of the urgency of needs an

the efficacy of measures to meet them. It is 

caught between a dearth of information whi

must come eventually from unsophisticated 

sources, and an available, sophisticated 

technology t

id, reliable information, acquired under 

common definitions, and processed 

inexpensively. A study of the cost economics 

mental retardation under these conditions is 

understandably difficult. 

Studies in the Economics of Mental Ret

Despite the difficulties, studies of the 

economic nature of mental retardation have bee

attempted, providing potentially useful findings

and a firm experience on which t

forts. 

The first attempt at economic measurement 

in the mental disability field was by Rashi Fein 

(1958), an economist, whose monograph 

formed part of a series undertaken by the Joint 

Commission on Mental Illness and Health. Late

the National Institute of Mental Health 

expanded on Fein's approach, one collaborat

being Ronald W. Conley, an NIMH econ

In 1967, as a response to a priority set by 

President Johnson, Dr. Robert A. Aldrich

chairman of the President's Committee

Mental Retardation, in collaboration with 

William Gorham, Assistant Secretary of the 

Department of Health, 

and with members of the President's Committee, 

initiated a study of the economics of mental 

retardation. Dr. Conley was selected to u

take the project, and was loaned by the Nationa

Institute of Mental Health for this purpose. Dr. 

Conley's wor

blication of The Economics of Mental 

Retardation. This remains the major 

examination of the subject. 

In related effort, the University of Michigan

Institute for the Study of Mental Retar

Related Disabilities (ISMRRD), under contrac

from the Bureau of Education for the 

250 
Methodological Problems 

Lack of precise data forced Conley to reso

estimates. While these were thoughtfully 

developed and as fully supported as available 

information would allow, he acknowledged the

subjectivity and liability to error. He also 

acknowledged that some human values are extremely difficult if not impossible to expres

eco

rt to 

ir 

s in 

nge of 

he 

sis 

 and 

criteria 

to 

n 

and 

 grand 

ey derived 

epidemiological, benefit/cost and efficiency 

findings of potential value. Some major findings: 

With regard to prevention, the total, undiscounted 

amount of money in 1970 dollars to be saved for each 

case in which severe mental retardation was 

prevented (in this case meaning the moderately, 

severely and profoundly retarded), is almost 

$900,000. (Conley, 1973, p. 322) 

Non-whites (many of whom live below the 

poverty level) are six to seven times more likely to 

have IQs below 70 than whites. Children of the 

. (ibid p. 48) 

C

lex of 

s 

to this, 

 in 

s 

 similar. 

rded 

ges. 

L

ential. 

r 

n 

B

se 

d, 

d there 

ded persons, including 

a high proportion of moderately impaired, who could 

be gainfully employed if appropriate services were 

made available. (ibid p. 371) 

These findings point to policies that would be 

more economical than those which prevail today. 

They highlight the potential productivity of the 

large majority of retarded persons, and the 

benefits to be realized by investments in 

nomic and quantitative terms. 

In a later paper, Conley (1975) asserts that 

despite "the amazing absence of relevant data," 

careful and systematic study of available 

cost/benefit information will reduce the ra

subjectivity in decisionmaking and improve t

quality of decisions. 

The possibility of precise cost/benefit analy

depends ultimately on solving the following 

methodological problems: 

 Precise definitions of mental retardation

its subclassifications are needed with valid 

determine incidence and prevalence. 

 Reliable field information must be based o

common language identifying service delivery 

clients served. 

 Units of service must be defined and 

methods developed for quantifying the benefits 

of service. 

 Uniform accounting procedures must be 

developed. 

In the future the economics of mental 

retardation will rely heavily on the ability to 

show results. In the field of retardation such 

results must be shown either in the decreased 

incidence of retardation or in the improved 

functioning of those who are retarded. "The

allocation decisions are political. Analysis can

help by providing critically needed 

information." (Grosse, 1971) 

Some Pertinent Findings 

Despite the difficulties, Conl

poor are 13 times more likely to have IQs below 70 

than those of more affluent groups. There is a high 

prevalence of mental retardation in urban ghettos and 

isolated rural areas. (ibid, pp. 48-49) 

There are seven mildly retarded persons for every 

one who is moderately, severely or profoundly 

retarded

ustodial lifetime care costs in institutions for the 

mentally retarded are almost $400,000 in 1970 

dollars. (ibid, p. 322) Small community-based 

facilities offering various degrees of sheltered living 

would be less costly than large institutions in many 

cases. (ibid, p. 372) But these comparisons depend 

on the categories of residents and the comp

services provided within or outside of the facility. 

(1975, p. 13) 

Mental retardation accounted for a loss of $4.1 

billion in 1970 in national productivity through los

of employment and earnings. When loss of 

homemaking and other unpaid work is added 

plus the excess costs of services and the decrease

well-being, the total was estimated at $7 billion. 

(1973, p. 239) 

Almost the same proportion of mildly retarded adults 

were employed at the time of Conley's study as 

males in the general population. Their average 

earnings were estimated at 86% of the general 

average. For females the proportion employed wa

lower, but the relative earnings level was

A substantial proportion of moderately reta

were employed also but at much lower wa

(ibid pp. 239-240) 

ifetime educational costs of mildly retarded 

persons are far below their estimated lifetime 

productivity. For moderately retarded persons the 

comparisons are less favorable, but it is probable that

the data underestimated their earning pot

(ibid, p. 322) 

Lifetime earnings of retarded workers are high fo

adult males in the general population. For wome

and more severely retarded workers they are much 

less. (ibid p. 322) 

ased on 1970 values, $1 spent on the successful 

vocational rehabilitation of a retarded male may

return more than $14 in future earnings. In no ca

does it bring in less than the dollar invested. (ibi

p. 322) 

At the time of his study, Conley estimate

were 400,000 idle adult retar

251 
educational and vocational training efforts on 

the

They clearly 

ind

tantial 

Ins

mber 

. 

manizing, there is disagreement 

ative 

. 

As 

ve), 

titutionalization has decreased in 

the ousand 

e 

ly as alter

Vi

for

reducing num

pro

wh

sho of 

car is 

pro size 

and

far

S

com

un d change. In most States, 

ret

fre

hom

adu

ho

and

peo

tha

inf

ass

and

A

op

res r the retarded (Roos, 

19

hu

res

wh

the ere 

wa

me

mo

Th greement that institutions 

wi 50 

ir behalf. They establish the fact that 

substantial numbers of retarded individuals 

who have the skills, already fit into the national 

economy and produce at levels only modestly 

below those of the general population. They 

point up the areas of greater risk, among nonwhites, among residents of urban ghettos and 

isolated rural areas, and with those who have 

associated disorders or handicaps. 

icate the economic values of prevention, 

and show that institutionalization avoided 

through prevention, saves in a lifetime a subs

amount of resources that could be applied 

elsewhere in the economy. 

The Economics of Community vs. 

titutional Services 

The current movement to decrease the nu

of retarded persons in institutions and to increase the 

number residing in the community—

"deinstitutionalization"—has been promoted on 

both humanitarian and economic grounds

While there is little disagreement that the 

traditional institutional patterns of custodial care 

have been dehu

on the question of economy and the compar

quality of community services presently available

Recent studies show some interesting trends. 

reported by Gettings (1975, see Chapter 11 abo

the rate of ins

 last five years by 14%, from .92 per th

population to .79 per thousand. But this is not a 

clear-cut reduction. In many States which 

previously had low rates, new institutions hav

been built and the rate has increased. This is 

especially true in the southern States. In others, 

typically the northern plains States, the excessively 

high former rates have dropped marked

natives to institutional care have been increased. 

rtually no established institutions have been 

thrightly abolished; virtually all institutions are 

252 

bers of residents, increasing staffmg, 

viding increased services, evolving new roles 

ich interact with community programs, and 

wing rapidly rising increases in per diem costs

e. The number of comprehensive institutions

bably still increasing, but they are smaller in

 altered in many characteristics. Information is

 from complete. 

imilarly, the counterpart to institutions—

munity housing and services— is 

dergoing rapi

arded children appear to be living more 

quently or for a longer time in the parental 

e, or in alternative homes; adolescents and 

lts are more frequently residing in group 

mes in conjunction with vocational training 

 sheltered forms of work; older retarded 

ple are being accommodated more frequently 

n formerly in nursing and rest homes. The 

ormation, however, is sparse and difficult to

ess, especially in terms of the actual availability 

 access of services in the community. 

 recent Delphi-type of study, probing the 

inion of experts regarding the future of 

idential services fo

75), reveals rather strong consensus on 

man values which should be reflected in 

idential services, but shows less agreement on 

at is likely to occur. Little light was shed on 

 economics of anticipated changes, but th

s a consensus that the shift from custodial and 

dical to developmental and rehabilitational 

dels would continue and become the norm. 

ere was general a

ll not disappear but will become smaller (1
maximum), with living units of 20 or less, and w

full spectrum of services, shared in large degree 

with community agencies. Institutions will 

concentrate more on severely and profoundly 

retarded residents, and will increase short-term care. 

Institutional settings will be more homelike and w

be more concerned with human values. Profound

retarded and multiply handicapped people, 

however, are likely to be treated in somewhat les

"normal" ways, utilizing concepts of human 

engineering and sophisticated technology in 

programs designed to foster the residents' 

development and control over their environment. 

Experts anticipated the possibility of l

ith a 

ill 

ly 

s 

egal and 

ter influence 

ugh they did 

e. They foresaw, however, 

th

s. The panel 

e 

dies 

w

ill 

de

mic 

accountability, quality control and cost-sharing. 

than 

ces 

ho 

ted 

n 

 may 

le

er 

 no 

. 

However, benefits and costs may be quite different 

with respect to the residence and service require253

fiscal considerations exercising grea

on services than on programs altho

not regard it as desirabl

e enforcement of accreditation standards on both 

public and proprietary facilities in the near future, 

which will raise the costs for service

anticipated that while government funding will b

neither stable nor predictable, government subsi

ill provide full coverage for residential 

services for retarded persons requiring such 

services. National health insurance, they predict, w

provide consumers with purchasing power to select 

among services and influence their own 

velopment. 

Although the Roos study was limited in items 

covered and in its respondents, it indicates that future

decisions determining residential services will rest 

on complex factors involving the primacy of 

humanistic benefits within constraints of econo

and organizational considerations. This trend has 

already been reflected in recent Federal and State

legislation, in which humanitarian objectives 

centered in individual development have been 

accompanied by requirements for fiscal 

A recent study prepared for the Department of 

Health, Education, and Welfare, covering 

investigations in three States, drew the following 

conclusions: 

a. "The cost of services to developmentally 

disabled persons in State hospitals [sic] do not 

differ significantly from the adjusted, true costs of 

services in community settings provided both groups 

are provided with a full array of needed services 

[at acceptable quality, one should add]. 

b. "The service utilization patterns in 

community settings are different—and less—

utilization patterns of services in State hospitals. 

c. "The major, actual cost savings for servi

provided to developmentally disabled persons w

actively require nurturance and assistance are roo

in the natural home environment. The costs of 

liberal home support and special professional 

services to those living at home will not deplete 

these savings." [However, this conclusion is 

qualified by the expectation that the retarded perso

will not receive "residential living reimbursement" 

which would include, for example, Supplemental 

Security Income (SSI). Receipt of such income

ad to negligible savings.] (Mayeda, et al., 1975) 

It is possible that if one receives "residential 

living reimbursement," there are no significant 

differences in costs for quality programs, wheth

the person lives in an institution, community 

residence, or at home. 

There are two important economic considerations 

in these findings. First, if there are social and personal

advantages to the retarded individual to live in the 

community rather than in an institution, and there is

significant difference in costs, then there is no 

economic barrier to the goal of deinstitutionalization
ments of different categories of retarded 

persons. This throws the problem back to a 

differential analysis of population variables

Second, to the layman economics means mo

Money comes from various sources with variou

strings attached. The provision of money, or 

funding, is the basis of many social and clinical 

decisions in our society. The choice of where a 

retarded person lives may be a consequence of 

the patterns of funding to the intermediate 

suppliers or consumers, rather than a reflectio

of true consumer needs. 

The Funding Game 

. 

ney. 

s

e 

to 

ry. 

 of 

Federal funding with limited control, called 

revenue sharing. 

en 

d of combined inflation and 

e 

n 

ompetition 

ate. 

ce 

s. In 

 way 

ardation economy works. 

In

n 

u

Funding has become the economic game of all 

human services programs. Families seek funds 

for which their retarded members are eligible. 

When Supplemental Security Income was set 

up for indigent, aged and handicapped persons, 

there was an unanticipated volume of 

applications for handicapped persons, although 

attention was focused primarily on meeting the 

needs of the aged in this program (Levin, 1975). 

Demand for funds in open-ended assistance 

programs has been the basis for criticism and

attack on that type of program. So far, 

handicapped persons, including mentally retarded,

have not been under that sort of attack, but they

and their advocates have had to play the gam

accord

wa

ing to the conventions of contemporary 

society. 

The burgeoning costs of public programs have

led to changing policies and the changing locus of 

responsibility. Voluntary and local agencies long

ago gave over major funding responsibility for 

human service programs to the States and the 

Federal Government. The States found ways 

shift much of the burden to the Federal treasu

The impact has led to new Federal funding 

approaches, designed to control the demand on

the Federal Government, including the policy

The juggling for funding advantage can be

expected to continue into the future. Wh

public resources are under constraint, as in the 

present perio

nemployment, the struggle waxes competitiv

as programs seek advantage over one another i

access to limited financing. The latest approach

has been the provision of the 1974 Social 

Service Amendments to the Social Security Act 

which distribute fixed limit Federal funds to 

States and have the effect of forcing c

for funds among programs within each St

Some of the economic consequences of the 

funding game are counterproductive and 

steful. Funds may not go where they are 

most needed. They may not meet the needs of 

individual retarded persons. They may not 

compensate for the heavier needs of poor people,

minority group members or the multiply 

handicapped. They may lead to marked 

differences in services and service quality 

among the States, or among rural, suburban, 

urban and metropolitan areas. They may be 

wastefully applied. Lacking the critique of 

thorough benefit/cost analysis, funding may 

work in unprofitable or contradictory directions. 

One significant consequence of central sour

funding is its impact on the market for service

a straightforward transaction an eligible person 

applies for a benefit that is financed, supplied, and

tested for its effectiveness; but this is not the

the present mental ret

 a market dominated by providers, central 

source funding makes the balance of needs 

(demand) and resources (supply) difficult to 

realize. The tendency is for the 

consumer/provider to drift toward the most 

accessible sources of funding. The easy dollar 

then dominates the diagnosis and the provision of 

service. The consequences may be totally 

unproductive. 

254
To sum up the economic picture in me

retardation, we find: 

 scarcity of needed services and resources; 

 human services dominated by supplier

and characterized by confusion; 

 preoccupation with costs arising from the 

dominant position of suppliers who have a 

vested interest in maintaining their established 

positions as providers; 

d

ntal 

s 

ing not based on 

e 

er advocates, can strengthen 

the

 representatives and the 

suppliers. 

T

ion. 

e 

ing and 

, it 

do

is. 

 it, 

es as 

to the 

ith 

ay 

h 

sis 

un

nd 

its. 

ver, require quality control and 

vigilance by consumer advocates. There is a 

considerable amount of competition already in 

human services but it does not always provide

 unproductive fun

consumer needs; 

 lack of analysis of costs and benefits on 

which rational policy could be based. 

New Operations in the Service Market 

A more fundamental problem appears to be 

the market itself, for which two possibl

correctives appear promising: increased strength

of consumer entitlement and demand, and the 

encouragement of some competition among 

suppliers. 

A "caretaker knows best" psychology 

dominates today's services market. It can be 

counteracted by providing consumers with 

expert technical assistance from sources 

independent of the suppliers. The availability 

of "service brokers," or sufficiently informed 

personal consum

 right of the consumer to choose whatever is 

available while maintaining the right of the 

supplier to withhold what in his judgment is 

not appropriate. Reliance on the contract principle with clearly stipulated obligations of 

consumer and supplier can be increased. There

can be prompt redress for failure to fulfill these 

contracts through appeal by the consumer for 

benefits promised but not delivered. A contract 

can also protect resources which may be 

wasted by consumers who do not fulfill their 

plans. Service delivery thus becomes a process 

of regulated negotiation between the 

consumers or their

here is an expensive process in the human 

services market called eligibility determinat

It is linked to funding, usually through elaborat

regulations. It is designed to curtail cheat

limit sponging on public funds; but it may force

misrepresentation and inappropriate choice. 

There is a need to clarify and simplify consumer

entitlements to benefits and the bookkeeping 

procedures needed to verify such entitlements. 

A moderate amount of competition can be 

stimulated among suppliers. While competition 

has not been stressed in the foregoing analysis

es represent one of the major features of the

open market. Competition involves a political

principle that goes beyond the present analys

Should human services be considered a public

utility, or "social utility" as Kahn (1967) calls

available to everyone? And if so, should anyone 

be charged except through tax obligation? 

Although taxes usually cover such servic

police and fire they may also be linked 

extent of usage, as with some utilities, w

additional payment required. Taxation m

also underwrite social programs for whic

fees may or may not be charged on the ba

of ability to pay.

At present there is a movement toward 

iversal provision of essential human services 

based on this last pattern. There is still dialogue, 

however, over the extent to which such services

should be available to all at no charge, regardless

of means, and in regard to the liability of parties 

of secondary interest, such as relatives of retarded adults.

Among the values of competition are assurance that the consumer has a real choice, a

encouragement to provide high quality benef

Certain hazards go with these advantages: 

enticing consumers with promises of benefits 

that cannot be delivered, and marketing of lower 

quality benefits to cut costs. Competitive 

services, howe

255 
op

es 

on, 

come standard, but there 

ch 

ich 

tific 

to 

p 

be

in

th 

ontributes to the prevention 

an any 

ol. 

tions. Choice for a given consumer may be 

restricted by his means. There are enterpris

almost exclusively in the proprietary secti

such as community-based nursing homes, where 

competition from public counterparts might be 

beneficial to consumer interests. 

The rising effort to protect consumer interest in 

the field of human services has generated a 

rapidly growing movement toward licensure and

accreditation of provider agencies. This trend is 

likely to continue and be

is a danger that if procedures become too 

complex there will be a backlash against su

controls, and a danger that standards will become 

too rigid to allow necessary variability and 

innovations in services. 

Benefit/Cost Analysis 

Attempts to improve cost management are 

increasing, if not snowballing, springing up in 

many programs with little or no consideration of 

how to interface them. One system which has 

already been introduced in six States, the 

Individualized Data Base (UCLA, 1975), 

attempts to develop not only current but also

longitudinal data about retarded individuals wh

can serve case planning, administrative and scien

purposes. It includes measures of costs, and has 

already provided useful data. 

Other recent or ongoing studies seek to relate 

consumer characteristics and developmental 

changes to costs, patterns of community living 

consumer characteristics and community 

involvement, and utilization of community grou

homes to costs. Conley (1975) points out that 

these are expensive surveys with unique foci but 

that within a few years much more information 

on costs in relation to services and outcomes will 

 available. 

Along with the funding game goes an 

information game. Ad hoc information systems 

are conceived and designed for special purposes, 

often to provide operational data that will ensure the

program's continued funding. 

There is at the present time no synchronizing 

agent to require some degree of consistency and

terface among separate information systems. 

Without effective coordination, information 

development will remain costly, fragmentary and 

incomplete, forcing continued reliance on estimates, extensions and extrapolations of data wi

their attendant errors. National leadership in 

human services information development would 

help avoid such problems. The need is no longer 

a technological one but simply a problem of 

interprogram collaboration in data acquisition, 

storage, analysis and utilization. 

The economics of mental retardation has a

paradoxical quality. We have at hand the means to

respond to the demand for beneficial services and

to measure and improve services. Investment in 

these approaches c

d amelioration of mental retardation, in m

instances converting a source of human waste 

and expense into one of economic gain. Yet 

institutions which operate without a 

countervailing influence from consumers are 

resistant to change. An economics of scarcity 

encourages their conservatism with respect to 

innovations even though innovations would

improve the market and result in cost contr

These conflicts can be resolved favorably by 

effective national leadership, and in an 

atmosphere of hope in which scarcity is not the 

last word. 

256 
References 

Cohen, Julius S.; Butter, Irene; Deline, Stanley; Nutte

Ronald E., eds. Benefit-Cost Analysis for Mental 

Retardation Programs: Theoretical Considerations and

a Model for Application. Ann Arbor: The University o

Michigan, 1971. 

r, 

f 

Co

ed, 

rk: 

 Retardation: Trends in State 

n, 

s." In 

: 

ia: 

hiatric 

r the 

tes: a Delphi Study. 

19

nley, Ronald W. The Economics of Mental 

Retardation.Baltimore: The Johns Hopkins University 

Press, 1973. 

Conley, Ronald W. "Evaluating Alternative Service 

Delivery Systems." Paper given at Symposium on 

Environmental Design for the Developmentally Disabl

Ohio Department of Mental Health and Mental 

Retardation, Columbus, Ohio, April 15, 1975. 

Mimeographed. 

Fein, Rashi. Economics of Mental Illness. New Yo

Basic Books, Inc., 1958. 

Gettings, Robert M. Mental

Services, President's Committee on Mental Retardatio

U.S. Government Printing Office, Washington, D.C. 

1976. 

Grosse, Robert N. "Some Problems of Choice in Mental 

Retardation Planning." In Cohen et al., eds. 

Kahn, Alfred J. "Social Services as Social Utilitie

Urban Development, Proceedings of the XIIIth 

International Conference of Social Work. New York

Columbia University Press, 1967. 

Levin, Stanley. Presentation to a meeting of public and

voluntary national agencies concerned with 

Supplemental Security Benefits for aged and 

handicapped persons. Baltimore, June 12, 1975. PCMR 

staff notes. 

Mayeda, Tadashi; Wai, Francine; Nihira, Lily; and 

Edwards, Robert. "The Cost of Long Term 

Developmental Disabilities Care." Pomona, Californ

University of California Los Angeles—Neuropsyc

Institute Research Group at Pacific State Hospital, 1975. 

Draft of unpublished manuscript prepared for Office of 

the Assistant Secretary for Planning and Evaluation, U.S. 

Department of Health, Education, and Welfare. Unnumbered pages under "I. Introduction and Summary." 

President's Committee on Mental Retardation. The SixHour Retarded Child. Washington, D.C.: U.S. 

Government Printing Office, 1970. 

Roos, Susan. The Future of Residential Services fo

Mentally Retarded in the United Sta

75. 

University of California at Los Angeles. The 

Individualized Data Base is a program of the UCLA—

Neuropsychiatric Institute Research Group at Pacific 

State Hospital, Pomona, California

Nanda Ward Haynes, CEC 

257 
 

258 
Chapter 14 

The Shape of the Challenge 

The foregoing review of the past and 

present of the mental retardation field in the 

United States brings us to a critical point of 

appraisal. 

Where do we go from here? 

So much has happened in the past 25 years to 

reverse social policies, to change public 

attitudes, to open the way to reducing the 

occurrence of mental retardation and to 

improve the quality of life for mentally retarded 

persons that we are tempted to think the 

problem is essentially solved, that we can coast 

in on the momentum of these achievements. 

Nothing could be further from the truth. 

In truth, we have made only a beginning. 

Social policies have been only partially turned 

around, and could swing back again to repressive, 

restrictive dehumanizing methods of control. 

Public attitudes, beginning to become more 

acceptive, could once again reflect fear 

instead of faith, intolerance rather than 

acceptance of human differences. The anticipated 

reduction of incidence and prevalence of retardation could yield to new sources of 

biological or psychological damage; 

accessible knowledge could remain sterile and 

unused and the opening frontiers could close. 

The quality of life which has begun to 

improve for retarded persons could once again

deteriorate, perhaps in new forms of 

dehumanization brought about by faulty 

application of new technological resources. 

What has happened in the past quarter century 

has, more than anything else, revealed the full 

plexity of the problem of mental 

rdation and has only begun to yield 

solutions. 

We can be fairly sure of one crucial fact: 

we know the direction in which we must 

move if the principal elements in the complex 

problems are to be resolved in humanizing 

terms. We know what the goals are and some 

of the conditions necessary to achieve them. We 

have begun to devise social strategies along 

such lines. But we are a long way from fully 

developing the social policies and programs 

that will bring these goals within our grasp. 

Proliferating programs must be reduced to 

manageable order, transitions from established 

to unfamiliar procedures must be accomplished; 

and above all, public understanding must 

become far deeper than it is today. 

We are in a position expressed a century ago 

by Walt Whitman as he reflected upon the 

shaping of America: 

The main shapes arise! 

Shapes of Democracy total, result of 

centuries, 

Shapes ever projecting other shapes. 

* * * * * 

Shapes bracing the earth and braced with 

the whole earth. 

We see the main shapes of the solutions to 

mental retardation arising in a context of 

"democracy total," but the shapes are the 

shapes of challenge to bring those solutions to 

ripe fulfillment, "bracing the earth and braced 

with the whole earth." 

In the volume entitled A Report to the 

President, Mental Retardation: Century of 

Decision, the President's Committee on Mental 

Retardation projected the main issues into the 

next quarter century, with recommendations for 

their resolution in terms of long-range goals and 

intervening objectives. The considerations 

underlying the current issues have been more 

extensively detailed in the preceding chapters of 

this volume. Past and present unite to generate 

the forces leading to the future. 

com

reta

259 
Will the Incide

Retardation Be Subst

nce and Prevalence of Mental 

antially Reduced in the 

prevention depends on increasing the 

knowledge of causes and conditions of risk, 

eliminating known causes and avoiding known 

ris the 

w that the risk factors center in 

hu nce. 

Avoiding or m

e 

ntrol of 

en l 

riate 

ized. 

disabled people. The most important public 

policy decisions in these areas will affect both 

prevention and amelioration of retardation. 

Individual responsibility is the necessary 

correlate to public policy in the prevention of 

mental retardation. In a democratic society, 

collective public policy sets a framework 

e 

f 

n, 

ve 

tion 

c

he 

or pa esponsible for 

crea te the 

best 

hazard to the child. 

Th , 

then, li

expand know

impl

the best ception, gestation, 

b

e 

Next Quarter Century? 

Progress toward the goal of substantial 

ks. The unknown is still far greater than 

known, requiring continued investment in 

basic, targeted and applied research. 

We kno

man reproduction and nurtura

inimizing these risks depends 

on a combination of public policy and 

individual responsibility. 

Public policy impinges in terms of thre

massive and interacting lines of effort: 1) 

Public health services universally accessible, 

including genetic and reproductive counseling, 

maternal and child health programs, 

immunizations, nutrition control and co

vironmental contamination. 2) Public socia

services involving the environment of child 

rearing and psychological nurturance and 

ultimately the whole environment of poverty, 

deprivation and disadvantage. 3) Public 

educational services including early infant and

child stimulation, maternal assistance, approp

conditions of learning, individual assessment 

and programming, and systematic information at 

all levels concerning the hazards to normal 

development and how they can be minim

All three of these public lines of effort are 

significant, not only to prevention of 

retardation, but to the enhancement of life for 

within which individual decisions can be mad

responsibly. This is based on the principle of 

informed choice, in which public services 

provide the widest and most effective sources o

information possible and reinforce the choices 

made by individuals in relation to the risks of 

childbearing and nurturance. 

Given the best available genetic informatio

for example, prospective parents must weigh 

the hazards and choose to have or not to ha

children. Given maximum informa

oncerning the condition of the fetus, it is the 

parents' decision whether to terminate 

pregnancy or continue to full term. Given t

best information and assistance possible, parents 

rental surrogates are r

ting the nurturance which will promo

development possible with the least 

e challenge in the arena of prevention

es in the continued support of research to 

ledge and its application; the 

ementation of public policies to promote

 conditions of con

irth, childhood nurturance and learning; and in

the stimulation of informed, responsible 

decisions by individuals in safeguarding th

lives, health and development of children. 

260 
Will the Mentally Retarded Person Be Accepted as a First-Class Citizen of the Community Regardless of the Nature and 

D

visioned 

al, 

rge 

lization. 

O ple 

plications 

f 

ropic 

s of the community, 

ea e 

y 

e past 

of

retardation involves the dissemination of up-todate knowledge concerning the nature, causes and 

resultant conditions of mental retardation; the 

positive as well as the limiting characteristics of 

mentally retarded people, including their 

variability; the real prospects of their social, 

vocational and moral growth and development, 

y 

ifficult challenge. 

P

tive 

hat 

f

d, 

what one does is a counterpart of individual 

difference and group membership, involving 

custom, preference and choice. The goal sought 

for retarded people is the elimination of these 

boundaries to freedom of choice that are arbitrary 

and discriminatory or the result of thoughtless 

rigidity in the operations of the community. 

egree of Disability? 

The goal of community acceptance, en

by some of the pioneers in the field, was reversed

during the late nineteenth and early twentieth 

centuries, but has now emerged once again as the

guiding concept directing governmental, judici

professional and community policies. In la

measure it remains a concept, far from actua

nly a small minority of the American peo

fully recognize and understand the full im

of such acceptance. It is often a thin veneer o

conventional phraseology in the philanth

and service-minded sector

sily dissipated when put to the test of effectiv

community action. The established methods b

which, for a century, the community managed its

retarded citizens and which depersonalized, dehumanized and disenfranchised them, have 

diminished but not disappeared during th

quarter century of more enlightened public 

policies. 

The extent to which such efforts to control 

mental retardation have violated the principles of 

the Constitution and the professed moral ideals of 

the American people have been dramatized by 

recent judgments of the courts, sought through 

class action suits as a last resort. 

But the challenge runs deeper than court decisions; 

the real issue is in public attitudes and the social

behavior of people in everyday life. This aspect 

 public relations divides into three phases: 

public information, public acceptance and public 

accommodation. 

Public Information with regard to mental 

and their capacity for degrees of responsible 

independence. 

Public Acceptance involves attempts to 

change negative, rejecting attitudes into positive, 

accepting, realistic, tolerant and supportive ones. 

Stereotyped concepts, prejudicial judgments, 

negative expectations have tended to accompan

the discriminatory social attitudes toward 

mentally retarded people in society. 

The cure for these attitudes lies ultimately in 

direct personal contact under favorable conditions, 

far more than through persuasion. The American

tradition of volunteer service may offer the 

greatest promise to meet this d

ublic Accommodation involves "making 

room" for those whose disabilities prevent them 

from acting in fully conventional ways. Tolerance 

is not enough; accommodation requires an ac

process of adjustment and adaptation, so that the 

retarded person may develop as far as possible 

toward the conventional norm within the open 

community. The community must then provide 

modified conditions to bridge the gap between the 

individual's capability and the fulfillment of normal 

needs. This accommodation applies not just to a 

few social settings to which it may be assumed t

retarded people "belong," but is designed to 

acilitate maximum mobility and functioning 

within the community as a whole. 

There are, of course, limits to the flexibility 

with which social structures can accommodate to 

broad individual differences. Special services 

and facilities are required when these limits are 

reached. No one, including those who are disable

has access to all possible opportunities in a 

community. Selection of where one goes and

261 
Will Resources Be Available and Utilized To

Provide the Services Needed by Mentally Retarded Citizens To Provide for Their M

mum Development, Fu

axinctioning and 

Pr

, 

s an 

body of standards applying to both 

re

that 

sity 

 need, availability 

in l 

ncoordinated. There is a 

co d in 

t 

 individuals in institutions and 

di dy 

r. 

velopmental 

an

s 

t of 

rge 

ed to the 

co ile 

rd 

w, if 

f 

otection? 

The principal issues in humane service delivery

center around the content and organization of 

service delivery systems, the balance between 

generic and specialized services, the sources of 

revenue to provide adequate services to all who

need them, the regulatory mechanisms, and the 

methods of accountability that will ensure the 

most efficient and effective benefit to the 

consumer in need. 

Standards for the delivery of residential 

services to mentally retarded people have been 

well defined by the Accreditation Council on 

Facilities for the Mentally Retarded (AC/FMR)

a division of the Joint Commission for the 

Accreditation of Hospitals and by the Program 

Analysis of Service Systems (PASS) of the 

Canadian National Institute on Mental 

Retardation. The AC/FMR effort constitute

evolving 

sidential (institutional) and general community

services. The presumption in these standards is that 

all services must form a well articulated system, 

not merely an aggregate of service entities; and 

they be consumer centered, emphasizing the neces

for responsiveness to individual

 appropriate variety and quantity, accessible to al

in need, individualized and personalized in 

application, and accountable in terms of desired 

outcomes in the lives of the recipients. 

At the present time, service delivery tends to 

be fragmented and u

ntinuing dichotomy between services provide

residential institutions and those in community 

settings. Recent attempts to draw the two systems 

closer together have shown some progress, bu

leave much to be desired. 

The much-discussed "deinstitutionalization" 

movement has had the twin objectives of 

avoiding placing

scharging as many as possible of those alrea

there. 

Stated in these terms, the movement has become

confused and controversial, with opponents and

proponents assuming doctrinaire, adversary 

positions in which the real issues tend to disappea

The real issue centers around the de

d functional goals of retarded citizens and the

conditions under which the necessary services 

can best be provided. No one attempts to defend

the old style custodial institutions. The question is, 

then, whether the benefits of modernized, 

comprehensive institutions compare with the 

benefits of community-based systems of service

delivery. Given the objectives sought, the 

question of cost effectiveness also arises. In either 

case, the costs of modern, humane and 

constructive provisions are high. 

Under mounting pressures from a variety of 

sources, traditional institutions have made strenuou

efforts to reduce populations and to improve 

standards. As the Report of the States indicates in 

Chapter 11, some States are increasing 

institutional populations, mainly by building new

ones on a smaller scale, serving a more limited 

geographical area and with more involvemen

community generic services. In other States, la

numbers of residents are being return

mmunity to obtain a complex of services wh

residing in a variety of living settings. 

Two observations need to be made with rega

to what is obviously a difficult period of 

transition. One is that the cost of institutional 

residential service is rising astronomically and 

entails high cost capital investments in a new 

physical plant. The other observation is that fe

any, communities have as yet developed a 

flexible comprehensive service system capable o

meeting the need. The development of such 

services is also costly. 

262 
Tragically, at the present time, overhasty 

reduction of institutional populations has resulted in a

large number of retarded persons, especially adults, 

being under-served or experiencing a trauma

disruption of l

tic 

ife in being returned to community 

se

ly 

es, 

 and relativ t 

f 

ability. 

ed rural 

areas and in t

in

y 

l 

 is 

 the special 

in a public 

sc

 private 

 must be 

ttings and families unable and unprepared to 

provide for them. 

The present transition is complicated by the 

threatened displacement of institutional labor forces, 

by the economic interests of small communities in 

which the older institutions have been traditional

placed, by the contradictory policies of 

government in relation to institutional servic

and by the serious concerns of parents

es of retarded people, both for their mos

favorable developmental opportunity and for their 

life-time security under conditions of continuing 

disability. 

In general, at the present time the adequacy o

service delivery to retarded individuals is 

inversely related to age and to degree of dis

The young mildly retarded child is, on the whole, 

best served, although many problems still persist. 

The adult, especially the older adult with severe 

and profound disability is, on the whole, the least 

adequately served. Those of intermediate age (the

adolescent and young adult) and those of 

intermediate disability (the moderately retarded or 

"trainable") are receiving considerable but still 

insufficient attention. 

Retarded individuals are generally best served in 

cities of 100,000 to 750,000 population. They are 

most poorly served in sparsely populat

he inner-city. There is a broad inequity 

 the availability and accessibility, as well as the 

quality, of service delivery within the total 

population of retarded and developmentall

disabled persons in the United States. 

"Mainstreaming" is the contemporary term for 

the effort to integrate exceptional individuals into 

the service systems commonly available to the 

"normal" members of the community. The 

greatest effort is being made in the public school 

systems, but it is also extending to other areas. 

Developing appropriate accommodations, both 

socially and programmatically, for the exceptiona

person within integrated groups requires 

supplementary individualized assistance. 

"Mainstreaming" does not of itself provide 

equal opportunity. The critical consideration

whether the particular needs of the individual can 

be met and reinforced within a heterogeneous social 

grouping. Where individual attention is normal 

procedure, as in medical services, it is wholly a 

matter of professional accommodation to

case; in group interaction, such as 

hool classroom, it involves also the social 

accommodation of the group. 

Service provision is costly and subject to 

economic inflation and the competition of needs.

The expansion of services to meet existing and 

newly emergent needs encounters limitation of 

available resources and the clamor of diverse 

interests. 

The realization of the major objectives in 

preventing mental retardation and providing 

adequately for retarded individuals will require 

substantial expansion in public as well as

financial resources. This will be difficult in the 

current period of economic stringency and

extended over time.

Nanda Ward Haynes, CEC
A period in which massive forward 

movement is not possible may be well used 

for planning pilot projects and prototype 

programs at relatively small immediate cost. 

Extremely careful decisions must be made in 

the balance of Federal and State funding. 

Equity in providing services nationwide 

re

, 

m the States, Federal regulations are 

be

deral 

he need for accountability has become 

almost a cliche in the past several years. But 

there can be no evasion of responsibility in the 

use of public funds for a public purpose. One 

problem involved in defining and implementing 

policies of accountability is in the determination 

that funds have been used actually for the 

purposes assigned, not diverted to other ends, 

not wasted in inefficient management and not 

absorbed by the intervening levels of 

administrative distribution while only a trickle 

al 

ac

e 

pa

gram 

ber of the 

n

quires Federal sources of funding. 

Reversion of fiscal responsibility entirely to 

the States would yield gross inequities 

reflecting the variation in State economic 

resources and political climates. Federal 

incentive funds and matching formulae have 

proven to be the best, though far from perfect

guarantees of equity. 

Similarly, the responsibility for regulatory 

management must be shared. As indicated in the 

reports fro

coming increasingly complex and 

unresponsive to local need. Yet unless Fe

policies are seriously enforced, funds can hardly 

be used equitably. 

Federal regulations need to be simplified to 

basic essentials designed to guarantee that 

funds will be utilized in accordance with law 

and congressional intent. The details of 

regulation and management, however, are the 

responsibility of State and local authorities. 

Successively higher and more remote sources of 

authority should confine themselves to 

successively broader and more general principles 

of regulation. This appears the only way to 

avoid stifling effects of bureaucratic centralism 

and yet to maintain nationally just policies and 

reasonable equity of support. 

reaches the assigned destination. 

More important in the end than fisc

T

countability, however, is service accountability.

A service delivery system must be held 

accountable for the effects of services on thos

who receive them. It means in effect that 

retarded individuals become less retarded as a 

result of what is done for them. In the recent

st they were becoming more retarded as a 

result of what was done to them. 

Accountability in terms of humane service 

outcomes can leave wide scope for pro

flexibility, novelty of effort, ingenuity of 

invention. It can be stifled by requirements of 

checklist conformity to non-essentials. 

We ask three final questions: 

—Can mental retardation be significantly 

diminished as a human problem? 

—Can the mentally retarded person be

accepted as a citizen mem

community? 

—Can humane services be so effectively 

delivered that the retarded person 

actualizes his full potential for huma

living? 

These questions are the shape of the 

challenge, the shape of "democracy total" in

the century of decision. 

264 
Glossary of Acronyms 

AAHPER American Alliance for Health, Physical 

Education, and Recreation

AAMD American Association on Mental 

Deficiency AC/FMR Accreditation Council for Facilities for 

the Mentally Retarded

AFDC Aid to Families with Dependent 

Children

AJMD American Journal of Mental Deficiency 

APTD Aid to the Permanently and Totally 

Disabled

ARC Association for Retarded Citizens 

AUAF Association of University Affiliated 

Facilities 

BCHS Bureau of Community Health Services 

BEH Bureau of Education for the 

Handicapped

CEC Council for Exceptional Children 

CETA Comprehensive Employment and 

Training Act 

CHAMPUS Civilian Health and Medical Program of 

the Uniformed Services 

DD Developmental Disabilities 

DDO Development Disabilities Office 

DDSA Developmental Disabilities Service Act 

DDTAS Developmental Disabilities Technical 

Assistance System

DHEW Department of Health, Education, and 

Welfare

EPSDT Early Periodic Screening, Diagnosis and 

Treatment Program

ERIC Educational Resources Information 

Center

ESA Employment Standards Administration 

ESEA Elementary and Secondary Education 

Act 

FDA Food and Drug Administration 

FGP Foster Grandparent Program 

HEW Health, Education, and Welfare (Dept. of) 

HIP Hospital Improvement Program 

HIST Hospital Inservice Training 

HUD Department of Housing and Urban 

Development 

IASSMD International Association for the Scientific 

Study of Mental Deficiency

ICF/MR Intermediate Care Facility for the Mentally 

Retarded

IHS Indian Health Service 

ILO International Labor Organization 

ILSMH International League of Societies for the 

Mentally Handicapped 

IQ Intelligence quotient 

IRUC Information and Research Utilization Center

ISMRRD Institute for the Study of Mental Retardation 

and Related Disabilities

MCH Maternal and Child Health 

MCHCC Maternal Child Health Crippled Children 

MIC Maternity and Infant Care 

MRRC Mental Retardation Research Centers 

MSA Medical Services Administration 

NARC National Association for Retarded Children

also

National Association for Retarded Citizens 

NASA National Aeronautics and Space 

Administration

NCCC National Conference of Charities and 

Corrections 

NICHD National Institute of Child Health and 

Human Development

NIH National Institutes of Health 

NIMH National Institute of Mental Health 

NINCDS National Institute of Neurological and 

Communicative Disorders and Stroke

NINDB National Institute of Neurological Diseases 

and Blindness (now NINCDS)

NFS National Science Foundation 

OAA Old Age Assistance 

OASDI Old-Age, Survivors and Disability Insurance

OCD Office of Child Development 

OHI Office for Handicapped Individuals 

OMDP Office of Manpower Development 

Programs 

OMRC Office of Mental Retardation Coordination 

OVR Office of Vocational Rehabilitation 

PAN Political Action Network 

PARC Pennsylvania Association for Retarded 

Citizens 

PASS Program Analysis of Service Systems 

265 
PCEH President's Committee on Employ-

 ment of the Handicapped

PCMR President's Committee on Mental

 Retardation

PHS Public Health Service 

PKU Phenylketonuria

RRC Regional Resource Center

RRTC Rehabilitation Research and Training

 Centers 

RSA Rehabilitation Services AdministraPro

 tion 

RSVP Retired Senior Volunteer gram

SCMR Secretary's Committee on Mental

 Retardation

SCP Senior Companion Program

SPIB Social and Prevocational Informa-

 tion Battery

SRAB Scientific Research Advisory Board

SRS Social and Rehabilitation Service

SSA Social Security Insurance 

s 

rity Income 

lities 

n 

ation 

VISTA Volunteers in Service to America 

ilitation 

loSSI Supplemental Secu

UAF University Affiliated Faci

UCP United Cerebral Palsy 

UCPA United Cerebral Palsy Associatio

UMTA Urban Mass Transportation 

Administration 

UN United Nations 

USES U.S. Employment Service 

USOE U.S. Office of Educ

USPHS U.S. Public Health Service 

USPS U.S. Postal Service 

UYA University Year for Action 

VA Veterans Administration 

VR Vocational Rehab

WECEP Work Experience and Career Exp

ration Program 

A

Index 

AAHPER, see American Alliance for Health, 

Physical Education, and Recreation 

AAMD, see American Association on Mental 

Deficiency 

AC/FMR, see Accreditation Council for 

Facilities for the Mentally Retarded 

Accreditation Council for Facilities for the Mentally

Retarded (AC/FMR), 46, 67, 117, 164, 262; Standards, 164 

ACTION, 184-186; Foster Grandparent Program, 

184-185; Office of Domestic and Antipoverty 

Operations, 185; Office of International Operor 

r 

a 

d 

te 

Research Service, 173; Extension Service, 

173-174; Family Food Assistance Programs (food 

stamps and distribution), 174; Food and Nutrition 

Service, 174-175; 4-H Programs, 173-174; Human 

Nutrition Research Division, 173; Special Supplemental Food Program for Women, Infants, and 

Children (WIC), 174 

Aid to Fa

Aid to tly and Totally Disabled 

(A

A

A

Alcohol, Drug Abuse, and Mental Health Administration (ADAMHA), 92, 172 

Aldrich, Robert A., 49, 92, 128, 133, 135, 250 

Allen, Richard C., 120 

Alms House, 6 

American Academy on Mental Retardation, 63 

American Academy of Pediatrics, 63 

American Alliance for Health, Physical Education, 

and Recreation (AAHPER), 63, 73, 78, 79 

American Association for the Study of the 

Feeble-minded, 64 

American Association on Mental Deficiency 

(AAMD), 7, 38, 39, 53, 58, 63-69, 76, 96, 107, 143, 

159; Committee on Classification and Uniform 

tatistics, 66; Committee on Nomenclature, 66; 

-68; litigation defense, 

68; Manual on Terminology and 

Classification in Mental Retardation, 66; 

Proceedings, 64, 65; purposes, 66; revitalization, 

31; Social Issues and Public Policy, 68 

American Association of Superintendents of State 

Schools for the Feebleminded, 7

266 

ations, 185; Peace Corps, 184; Retired Senior 

Volunteer Program (RSVP), 184-185; Seni

Companion Program, 185; University Year fo

Action, 185; Volunteers in Service to Americ

(VISTA), 110, 184; Youth Challenge 

Program, 186 

Advertising Council, 53, 77, 120 

AFDC, see Aid to Families With Dependent 

Children 

AFL/CIO, 63 

Agriculture, U.S. Dept. of, 173-175; Consumer an

Food Economics Division, 173; Cooperative Sta

Aid to the nd Disabled, 89 

Aid to the Blind, 89 

milies With Dependent Children 

(AFDC), 89, 163 

 the Permanen

ged, Blind, a

PTD), 89, 245 

labama, 197, 207 

laska, 42, 197 

S

institutional standards, 67
American Journal of Mental D

(AJMD), 2, 21, 64, 65, 212 

eficiency 

e

sy

n Psy

 Voc

s

awa

n's Jo

ce, an

see A

led 

arning

a, 42, 1

s, 197,

ly on U nce P

tion fo

iation of

itutions f ns, 

; Mon s, 

5

o

7

ralia, 57 

, 161 

ry Ed

ard 

a

1 

 N.Y.

ancy

 N. Lor

Bureau of Education for the Handicapped 

ioral an

mme,

y Chil

tein, 13

 Rights

 144; Bin

of Char

s, Elizabe 96, 

125 

, 65, 88

 Univer

 Da

oa

Brussels, 58 

Buck, Pearl S., 40 

Buffalo, 211 

Bureau of Community Health Services, 168; Maternal 

and Child Health, 94, 95, 112, 168, 169, 217 

Bureau of Education for the Handicapped (BEH), 

71, 74, 87, 96, 109, 111, 114, 131, 165-168, 216, 217, 

236, 237, 239, 240, 250; Assistance to States, 166; 

Early Education Program, 111, 166; Innovation 

and Development, 168; Media Services, 166-167; 

Pe epara

Centers, 166-167 

Byers, A. G., 13 

Burgener, Clair W

Cali eph A

California, 70, 77, 119, 196, 197, 198, 199, 201, 202, 

20 07; Develo Program, 

19 A, 220

Can 79, 

Canadian National I

(CNIMR), 262 

Car ch A

Car

Car mmissi

Carter, Jimmy, iii 

CEC ouncil

Cen eral (18

Center for Disease Control (CDC), 170 

Center for Law an

Cen aw an

Century of Decisio

Cha , Naom

CHAMPUS, see Civ nd Medical Progr Uni

Changing Patterns s for 

th tally Re

CH Childr

Cha

Chicago, 79, 205 

Chi ical S

Child Wel , 29, 1

Chi o Never

Children Have a Potential (CHAP), 176 

Chi a Dem

Chi mited

Chi ith Ret

Chi nevol

ington, 38 

Chil eau, 26

C (191

Health Program,

"Ch n our C

Cin nivers

City College of New York, 211 

Civ 118-11

Civil Rights Movement, 100 

Civil Service Commission, 102, 186; Worker-Trainee 

Examination, 186 

Civilian Health and Medical Program of the Uniformed Services (CHAMPUS), 175 

Civitan, 63, 78 

Clarke and Clarke, 144 

Class action suits, 99 

American M

American P

dical Association (AMA), 63, 67 

chiatric Association, 67 

America

American

chological Association, 63 

ational Association, 73 

Amniocentesi

Angel Un

, 131, 149, 227 

re, 40 

Appleto

Scien

urnal of Popular Literature, 

d Art, 7, 9 

APTD, id to the Permanently and Totally 

Disab

Area Le Resources Center, 240 

Arizon 97 

Arkansa

Assemb

 199 

niversity Goals and Governance, 213

Assista

ia

ayments Administration, 163 

Assoc n, 47, 86 

Assoc

r the Aid of Crippled Childre

 Medical Officers of American 

Inst or Idiots and Feebleminded Perso

63, 69 g

64, 6

ograph Series, 64; Proceedin

Association 

(AUAF), 9

f University Affiliated Facilities 

, 123, 217, 218, 220 

Aust

Autism

Auxilia

Backw

ucation—The Training of 

Children, 18 

Babington, W

Baller, 2

llace K., 102 

Batavia,

Bayley, N

, 5

, 211 

Beebe,

BEH, see 

raine, 133, 135 

Behav d Social Research, 105 

Belleho

Berkele

 17 

d Development Center, 211 

Berns

Bill of , 83 

Binet, et test, 10 

Board ities and Corrections, 7 

Bogg th M., 31, 42, 51, 52, 53, 85, 93, 94,

102, 

Boston

Boston sity, 227, 229 

Braddock,

Brown v. B

vid C., 89, 90, 92, 95 

rd of Education of Topeka, 100 

rsonnel Pr tion, 167; Regional Resource 

., 133 

fano, Jos ., Jr., iii 

6, 2 pmental Disabilities

8; UCL , 227, 229, 256 

ada, 57, 70, 124 

nstitute on Mental Retardation 

eer Resear

8 

wards Program, 48 

itas, 7

negie Co on on Higher Education, 213 

, see C for Exceptional Children 

sus, Fed 80), 7 

d the Handicapped, 68 

ter for L d Social Policy, 68 

n, 259 

mberlain i, 41, 57 

ilian Health a

am of the formed Services 

in Residential Service

e Men tarded, 14 

AP, see en Have a Potential 

rles, 21 

cago Med

fare

chool, University of, 223 

11; Child Welfare Standards, 26 

ld Wh Grew, The, 40 

ldren in 

Li

ocracy, 29 

ldren 

W , 40 ldren 

ldren's

arded Mental Development, 38 

 Be ent League of the State of Washdren's Bur

onference

, 42, 51, 83, 87-88, 111, 158; 

9), 26-27; Maternal and Child 

 48 

oices o onscience," 80 

cinnati U ity, 227, 228 

il Law, 9 

267 
Cl on 

m

l am

l

l ook, 

Cobb, Henry 

Cohen, 250 

Co bur

o be

o ystem

o 207;

o , O

Co , U

75; - 6, 175 , 175; 

nd E

o S

C ty 

Co ensiv

CETA

Comprehensive Health Planning and Public Health 

s Act, 93 

ory education, 18 

4 

C

C

C

C

C

C

C

C 3 

Council for Educational Di

en (CEC), 39, 

e 

 Administrators of Special 

A Netwo ; 

sp tere

74 ate-F , 71 t C

si it 

73

Council of the Eur 8 

Cretin, vi 

Cret dem

Crim , 11

Cruikshank, 211 

Dar rles

Dar 8, 9 

Davens, Edward

Dav no

Dav 37

Day eil E.

De 1

Deaf mentally reta

Decade of Decision, 

Defense, U.S. Dept. of, 102, 175-176, 224; 

CHAMPUS, 175 

Dehumanization, 8, 14, 23 

D Defective, 9 

, 85, 96, 97-98, 117, 123, 161-

 State Advisory 

ral Laws, CEC, 200 

Division for Handicapped Children and Youth, 86 

D

D

D

D

D

D

D

D

268 

assificati

ittee on, 66 

and Uniform Statistics, AAMD ComC ements, J

inics, 42 

es D., 63 

C

C oser L 131 

V., ii, 21, 58 

hen, Wil

llier, Ro

 J., 85, 102, 133, 135 

C rt A

C

., 135 

lony s

lorado,

, 13, 28 

C U ity of, 77, 227, 228, 232 

C

nivers

lumbus hio, 6 

mmerce

Census, 1

.S. Dept. of, 175; Bureau of the 

 E elopment Administra conomic Dev

tion, 15 ; National Bureau of Standards

Social a

175 

conomic Statistics Administration,

C mmunity

ni

ervices, 205-206 

ommu

mpreh

Services Administration, 88 

e Employment and Training Act of 

1974 ( ), 44, 181 

Service

Compuls

Conference on the Care of Dependent Children 

(1909), 25-26 

Conley, Ronald W., 83, 157, 207, 250, 251, 256 

Connecticut, 4, 196, 197, 199, 205, 206 

Consolidation of administrative authority, 19

Constitution of the United States, 83, 98 

Constitutional Guarantees, 120 

Consumer Product Safety Commission, 110 

ontinuing Summary of Pending and 

Completed Litigation Regarding the 

Education of Handicapped Children, 74 

ontinuum of care, 111 

ooke, Robert E., 49, 51, 76, 211 

ooperative Research Grants, 211 

ooperative Research in Education Act, 48, 108 

openhagen, 58, 68 

ottage plan, 25 

ouncil for Developmental Disabilities, 7

agnostic Services, 71 

Council for Exceptional Childr

63, 67, 69-76, 86, 96; Association for th

Gifted, 71; Basic commitments, 72; conventions, 

73; Council of

Education, 71; deinstitutionalization, 74-75; 

Division for Children With Learning Disabilities, 

71; Division of Early Childhood Education, 71; 

Division of Mental Retardation, 71, 75-76; 

Division of the Physically Handicapped, 

Homebound, Hospitalized, 71; Governmental 

Relations Unit, 71, 73; Head Start, 74; 

Information Services, 73; Membership/Subscription, 72; Pan Pacific Conference, 73; Political 

ction rk, 74; professional standards, 74

ecial in

t

st divisions, 71; special projects, 

-75; S ederal Information Clearinghouse

; Studen

on, 71; U

EC, 75; Teacher Education Divin Development, 73; World Congress, 

opean League, 5

inism, en ic, 148 

inal law 9 

win, Cha , 9 

winism,

, 51 

idson, Le

ies, S. P.,

re, 46 

ton, N , 37, 65 

Prospa, 21

rded, 235 

31, 37, 42, 52 

Deinstitutionalization, 15, 116, 130, 202, 262 

Delaware, 70, 87, 197

Delinquency and low intelligence, 30 

emonology of the 

Denmark, 56, 57, 58, 68, 105 

Developmental Disabilities, 97-98, 113, 116, 122, 

161-163, 195; Acts

162, 207; Office, 88, 93, 109, 161;

Council, 117, 161, 196; Technical Assistance 

System, 234 

Dewey, John, 17 

Diagnostic and Evaluation Centers, 215 

Digest of State and Fede

DiMichael, Salvatore, 44, 47, 50, 51, 88 

District of Columbia, 42, 68, 77, 80, 87 

Division of Accident Prevention, 110 Division of Developmental Disabilities, HEW, 

95, 98 

Division of Education for the Handicapped, 96 

Division of Mental Retardation, 93, 98 

oll, Edgar A., 18, 19, 20, 37, 144 

oren, G. A., 63 

ouglass, Joseph H., 102, 133 

own's syndrome, 80, 147, 149, 171, 228, 240 

ublin, 58 

ue Process, 83, 120; Primer, 74 

ugdale, R. L., 9 

unn, 211 

Dybwad, Gunnar, 31, 50, 51, 53, 57, 58 

Dybwad, Rosemary, 57, 58 
Economic Opportunity Act, 110, 114 

Economics, 245-257; Economics of Mental 

74, 87 

(EIMC), 87 

 113 

ons Development Act, 109, 113 

see Special Education; see also 

, 

 of 

E

E al Resources Information Center (ERIC), 

E

wight D., 30, 84 

rs. Dwight D., 36 

2, 207 

liot, Martha, 88 

 of America, 63, 198 

ces Information 

y Education 

f Societies for the Mentally 

Exceptional Children, 20, 69, 71, 73 

cies of Government, 184-186 

ncies in Mental Deficiencies," 38 

ds Act, 180 

F

F

F

F

F

F

64; sterilization, 27 

ss, gradations of, 7 

enn, Anne, 57, 58 

F

F

Fi 51, 61 

 197, 205, 207 

ministration (FDA), 110 

G

G

e, 144 

, 47; National 

08 

, 252 

G

G 

onference of 

(1960), 30-32, 52 

G reat Society," 85, 96 

G

67 

269 

Retardation, 131 

Educable child, 42-43 

Education and Training of the Mentally 

Retarded, 73 

Education Amendments of 19

Education, Dept. of, 85

Education for All Handicapped Children Act of 

1975, 238 

Education Instructional Materials Centers 

Education of the Handicapped Act, 87,

Education Professi

Education, special, 

Bureau of Education for the Handicapped 

Education, U.S. Office of, 20, 32, 51, 85-87

108, 113, 114, 123, 211; Section on Exceptional 

Children and Youth, 51, 85; see also Bureau

Education for the Handicapped

ducational Media Research, 86 

ducation

71, 240 

instein University, 227 

Eisenhower, D

Eisenhower, M

Elementary and Secondary Education Act 

(ESEA), 71, 86, 87, 113, 20

E

Elwyn Institute, 6, 11, 13, 62 

Employment Service, U.S., 182 

England, 2, 56, 57

Epilepsy Foundation

ERIC, see Educational Resour

Center 

ESEA, see Elementary and Secondar

Act 

Eugenics movement, 9, 12, 14, 15 

Europe, 124 

European League o

Handicapped, 57 

Euthanasia, 69 

Evans, Dale, 40 

Executive Agen

Executive. Landmarks, 83-85

Executive Order 11776, 132 

"Facts and Fa

Fair Labor Standar

Falbret, 17 

Families Play to Grow, 79, 113 

arrell, Elizabeth, 69 

FDA, see Food and Drug Administration 

ederal Aid to Education, 86 

ederal-Aid Highway Act of 1973, 183 

ederal legislation for mental retardation, first, 43 

ederal property resident, 86 

eebleminded, 3-18, 27-28, 64; Control-oriented

training, 11-13, 28, 

Feeblemindedne

Fein, Rashi, 250 

F

Fernald MRRC, 227, 229 

Fernald, W. E., 2, 7, 10, 11, 12, 13, 26 

erster, E. Z., 119 

ettinger, John, 51, 55 

Fettinger Report, 55 

Finch, Robert H., 133 

tzpatrick, Vincent, 

Flame of Hope, 78 

Florida, 196,

Fogarty, John, 48, 51, 83, 88, 92 

Food and Drug Ad

Ford, Gerald, 133 

Ford, Mrs. Gerald, 135 

Forecast of Fulfillment, 21 

Forest Haven, D.C. facility, 236 

Foster Grandparent Program, 184-185 

France, 2, 17, 56, 79 

Funding unification, 33 

allagher, James, 87 

Gallup Poll, 131 

alton, 9 

Gardner, John W., 128, 133 

Gaussian curv

Geer, William, 70

George Peabody College, 92, 212, 223, 228, 229 

George Washington University, The, 47, 236; 

Human Resources Research Office

Law Center, 54 

Georgia, 197, 199, 200, 205, 206, 2

Germany, 17, 70 

Gesell, Arnold, 211 

Gettings, Robert M., 54, 193, 194, 195, 198, 199, 202,

203, 205, 206

Gettings and Zigler Survey, 193, 198, 199, 200 

ladwin, Thomas, 47, 92, 211, 227 

lueck and Glueck, 30

Goddard, H. H., 10, 11, 144 

Goldberg, Ignacy, 43 

Golden Anniversary White House C

Children and Youth

Gordon, Harry, H., 48 

Gorham, William, 250 

raham, Ray, 71 "G

Greenleigh Associates, 180 

rosse, R. M., 251 

Grossman, H. J., 

Guggenbuhl, 17 
Guide to Curricular Adjustment for the Mentally 

Disabled, 85

 33 

 10, 

es 

 on Mental Retardation, Public Health 

n, 

H

Heredity, 9, 10, 11, 26 

H

), 93, 113, 

, 202 

"H

H on 

elfare, 51, 93; SubcomU.S. Dept. of, 

6; 

n Research Program, 176; 

 1959, 177; New Communities 

unity, 

H

H

H

H

H

H

H

H

H

IC he 

Idaho, 197, 199 

Ill

Il

IL

Im

Im

Indentured servitude, 13 

 131 

lth Service, 168, 169 

base, 256 

litation Act (1920), 44, 88 

formation and Research Utilization Center, 79 

al Medical Sciences, 107 

f Mental Retardation and 

50 

 42-43, 143-155, 

e Measurement of 10 

ation Training Center, 

; Bureau 

1, 177; Education Programs, 

, 177-178 

 Re1, 164 

cientific 

ASSMD), 58, 

In

In

Io

re Research Station, 211 

Je , 58 

e, 

5 

33 

ssion on Accreditation of Hospitals, 110, 

n International Aspects of Mention, 58 

ealth, 250 

Journal of Psycho-asthenics, 2, 10, 11, 13, 64 

270 

Guthrie, Robert, 211 

Hague, The, 68 

Halderman and the United States v. Pennhurst, 

et al., 179 

Hanke, Gil, 47 

Harvard, 77, 213 

Head Start, 74, 238 

Health and Preventive Services, 206 

Health care, right to,

Health, Education, and Welfare, U.S. Dept. of,

53, 74, 77, 85, 88, 98, 101, 105, 107, 108, 120, 121, 

122, 128, 180, 247, 253; see also National Institut

of Health, Office of Education, President's Committee

Service 

Health Service and Mental Health Administratio

88, 92 

eart Association, 48 

Heber, Rick, 66, 67 

Hill, Arthur, 51, 86 

Hill-Burton Act, 93, 95, 215 

ill, Lister, 51 

Hobbs, Nicholas, 212 

Home Start, 238 

Hoover, Herbert, 27 

Horacek v. Exon, 179 

Hospital Improvement Program (HIP

117, 202 

Hospital In-service Training (HIST), 93, 117

ot-Line" telephone, 206 

ouse Appropriations Committee, Subcommittee 

Health, Education, and W

mittee on Labor, 51 

Housing and Urban Development, 

(HUD), 101, 176, 177; Block Grant Program, 17

Community Desig

Housing Act of

Administration, 177; Office of Equal Opport

176; Special User Research Program, 176 

Hovel, Viola, 135 

owe, Samuel Gridley, 3, 4, 5, 6, 7, 9, 15, 16 

ughes, Charles Evans, 99 

uman Resources Research Office, 47 

uman Service Agencies, establishment of, 194 

umanitarian beginnings, 3 

umphrey, Hubert H., 85, 135 

umphrey, Muriel, 40 

ungerford, Richard, 37, 38 

ydrocephalus, 171 

F/MR, see Intermediate Care Facilities for t

Mentally Retarded 

inois, 77, 196, 197, 201, 202, 207 

linois University, 211 

O, see International Labor Organization 

munization Action Week, 133 

provability of the Feebleminded, The, 11 

Indian Education for Health Committee,

Indian Hea

Indiana, 207 

Individualized data 

Industrial Rehabi

In

Insight, 73 

Institute of Gener

Institute for the Study o

Related Disabilities, 2

Intelligence, 9-12, 14, 19, 27, 30, 34,

251 

Intelligence, Th

Interdisciplinary Mental Retard

232 

Interior, U.S. Dept. of, 85, 102, 131, 177-178

of Indian Affairs, 13

177-178; Social Services

Intermediate Care Facilities for the Mentally

tarded (ICF/MR), 9

International Association for the S

Study of Mental Deficiency (I

68 

International Labor Organization (ILO), 58 

ternational League of Societies for the Mentally 

Handicapped (ILSMH), 55, 57, 58 

ternational Special Olympics, 78-79 

wa, 197 

Iowa Child Welfa

IQ, see Intelligence 

Ireland, 56, 57 

Itard, 17 

Jackson v. Indiana, 100 

Jaycees, 63, 78 

rusalem

Johns Hopkins University Medical School, 49, 77; 

Dept. of Pediatrics, 211; John F. Kennedy Institut

220 

Johnson, Alexander, 25 

Johnson, Andrew, 8

Johnson, Lyndon B., 85, 127, 1

Johnstone, E. R., 14, 15, 16, 18, 37 

Joint Commi

111, 164, 262 

Joint Commission o

tal Retarda

Joint Commission on Mental Illness and H

Jordan, 70 
Judicial Landmarks, 98-103 

Junior Leagues, 63 

Jukes, The, 9 

01, 178; Bureau of Prisons, 

rcement 

inistration (LEAA), 178; National 

Criminal Jusecial Litigation, 179 

Kahn, A. J., 255 

sity, 227, 228, 229 

ns 

K

on, 78; Famf Hope, 78; Goveproduction and Bioethics, 80; Internaical Ethics, 79; Public 

isory Board, 76; 

K

, 207 

6, 96, 211 

Knight, H. M., 63 

Krause, Fred J., 133, 135 

ept. of, 44, 87, 101, 115, 179-182; 

yAct, 181; Dictionary of Occu-

, 188; Employment Service, 182; 

andards Administration, 179-180; 

179; Manuth 

ance for the Rehabiliffice of Employment 

Standards for Handicapped Workers, 180; Office 

erand Hour Division, 

 Experience and Career Exploration 

Behavior Analysis and 

School and 

ucationhabilitation Needs of the Mildly Retarded, 

L ion 

 special education, 200 

forcement Assistance Adminis-

 Through 

30; Legal Rights for Reth, 130 

 85-98 

, Committee on, 68 

 sur les Enfants, 11

aladie Mentale, vi 

, 47, 48, 54, 92, 211, 227 

tts, 4, 5, 6, 9, 77, 119, 197; School for 

h, 4 

ealth and Mental Retardation 

ents (1963), 94-95 

M

M 47, 51, 53, 105, 125 

12, 117, 118, 202, 206, 207 

M wships, 80 

lian Laws, 10 

oject, 68 

M etency, 

de change, 34; biological 

8, 131, 

; clinical, 152; 

; definition, 41, 66-67, 143, 144, 

, 161; early detection, 138, 173; 

34, 138; equal protection under 

the law, 83; Facilities Construction Act (1963), 

271 

Justice, U.S. Dept. of, 1

178; Civil Rights Division, 178; Law Enfo

Assistance Adm

Institute of Law Enforcement and 

tice, 178; Office of Sp

Kallikaks, The, 10 

Kansas Univer

Karnes, Merle, 43 

Kennedy, Edward M., 78 

Kennedy, John F., 41, 52-54, 84, 86, 94, 95, 102, 107, 

124; J.F.K. Centers, 220; J.F.K. Institute at Joh

Hopkins, 220 

ennedy, Joseph P., Jr., Foundation, 49, 52, 53, 63, 

76-81, 95, 113, 120, 128; Centers for Training and 

Service, 77; Community Organizati

ilies Play to Grow, 79; Flame o

ernmental Action, 76; Institute for the Study of 

Human R

tional Awards, 77; Med

Information, 77; Scientific Adv

Special Olympics, 78-79 

Kennedy, Rose F., 40, 76, 78 

ennedy, R. J., 21 

Kentucky, 4, 6, 197

Kerlin, I. N., 6, 7, 8, 12, 63 

Kernicterus, 171 

Kirk, Samuel, 43, 8

Kirk, Winifred, 43, 211 

Kiwanis, 78 

Kreider, Michael, 58 

Labor, U.S. D

Children's Bureau, 87; Comprehensive Emplo

ment and Training 

pational Titles

Employment St

Handicapped Workers' Task Force, 

power Administration, 181; Neighborhood Yo

Corps, 181; Office of Compli

tated Handicapped, 182; O

of Manpower Development Programs, 181; Op

ation Mainstream, 181; Wage 

179; Work

Program, 180 

Laboratory of Applied 

Modification, 233 

Laboratory of Client, Family, 

Community Variables Related to the Ed

Re

233 

Labovitz, I. M., 86 

Latin America, 124 

aw Enforcement Assistance Administrat

(LEAA), 178 

Laws, mandatory

LEAA, see Law En

tration 

Legal Change for the Handicapped

Litigation, 74 

Legal Rights, 207-208, 1

tarded Citizens Mon

Legislative Landmarks,

Legislation and Social Issues

Les Idees Moderne

Lesser, Arthur, 88 

Lindeman, 120 

Levin, S., 254 

Lewin, 211 

Locke, John, 17 

London, 57 

Louisiana, 119, 196, 197, 199, 202, 205

Mackie, Romaine, 51

Maenel, B., 18 

M

Martens, Elise, 85 

Masland, Richard

Massachuse

Idiotic Children and Yout

Maternal and Child H

Planning Amendm

Mathias Amendment, 74 

Mathews, David, 133 

ayeda, Tadashi A., 253 

ayo, Leonard W.,

McDowell, Floyd E., 69 

McIntyre, 120 

Medicaid, 90-91, 111, 1

Medical Assistance, 83 

edical Ethics Fello

Medical Services Administration (MSA), 164 

Medicare, 95 

Meier, John, 88 

Mendel, Gregor, 10; Mende

Mental Health Law Pr

Mental illness, definition of, 41 

ental Impairment and Legal Incomp

119 

Mental retardation: attitu

factors, 134, 171; biomedical prevention, 12

132, 133; classification, 173

congenital, 133, 143

152, 153; diagnosis

environmental, 1
76, 95-97; Federal agencies, 137, 132; Federal 

funds, 157; Federal legislation, 43, 157; 

vate organizations, 127; 

frequency of occurrence, 147; hereditary, 144; 

33, 111, 148, 180; incidence, 147-

reventive measures, 110-111; quasi, 

and local service patterns, 196; 

7, 212, 217, 220, 223-233, 239 , 47, 227 

mily assistance, 31; FederM

laws, 42, 118-120; legal rights, 50; litigation, 108; trainable, 87 

53 

ouse Conference (1950), 30 

iversity of, 250 

ehabilitation Project, 233 

1, 205; Department of 

e Deficiency Section, 39; 

0, 205 

M 5 

M

M

M

M

M

N

l Association for Mental Health 

ed 

ace Adminntal Retardation, A 

(President's Panel Report), 

ouncil on Developmental Disabilities, 96, 123 

24; Biomedical Applications 

tilization Office, 

persons hired, 187-188; 

thwest 

7, 77, 85, 88, 96, 

0, 121, 128, 182, 198, 211, 236; Federal 

e-year Plan, 59-61; 

4; 

9; 

acy, 51-54; national policy, 50; 

ncy, 55, 59-61; Poster 

; vocational training, 44; volunteers 

nce 

National Association of Coordinators of State 

N riends of 

National Association of Private Residential FaciliN

 Directors, 96-97 

ic 

ildren's Center, 156 

6 

 Research in Neurological 

3 

ommunicable Disease Centers, 78 

ational Conference of Charities and Corrections, 2, 

e Mentally Retarded and 

N

 of Special Education, 69 

 63, 78 

ng and Resources Developnd Human De-

, 225, 227, 230; Child Health Protal Retardation and Developitute of Education, 108 

272 

foundations and pri

identification, 

149; legislative landmarks, 85-98; prevalence, 

149-153; p

153; regional 

research, 92, 10

Mental Subnormality

Mentally Disabled and the Law, 120 

Mentally Handicapped: fa

al role, 122-123, 189; health care, 33; Office of 

Vocational Rehabilitation Services, 44 

entally retarded: access to services, 112; biometrics, 123; dehumanization, 8, 13, 14; educable, 87; 

employment, 183; humanization, 34, 97; impoverished, 56; 

tion defense, 68; rights, 34, 43, 50, 55, 58; statistical 

informa

Mercer, Jane, 148, 151-1

Mid-century White H

Michigan, 205, 207; Un

Milwaukee Family R

Minnesota, 38, 70, 196, 197, 20

Public Welfar

University of, 250 

Mississippi, 197, 20

Missouri, 70, 197 

M'Naghten Rule, 100 

Mobile clinic, 206 

ontana, 20

Montessori schools, 17, 22 

Montpelier, 68 

Montreal, 58 

oron, coining of term, 11 

orton, Rogers C. B., 131 

Moss, Dorothy, 41, 57 

RRC, see Mental Retardation Research Centers 

urphy, Thomas, 53 

urray, Dorothy Garst, 37, 52 

aive Offender, The, 130 

NAMH, see Nationa

NARC, see National Association for Retard

Citizens 

NASA, see National Aeronautics and Sp

istration 

Nathan, Mark, 36 

National Action to Combat Me

Proposed Program of

76, 94, 105-125 

National Advisory C

National Aeronautics and Space Administration 

(NASA), 186-187, 2

Program of the Technology U

186; mentally retarded 

Research Triangle Institute Team, 186; Sou

Research Institute Team, 186 

National Association for. Mental Health 

(NAMH), 63 

National Association for Retarded Citizens

(formerly Children), 38-61; 63, 6

106, 115, 12

legislative program, 51; Fiv

fund raising, 50; governmental affairs, 50-5

institutions, 44-46; international relations, 56-5

legal advoc

National Residential Care Committee, 45; O

the-Job Training, 44, 182; organizational 

development, 49-50; poli

Child, 36, 61; research, 46-50; special education,

42-44

symposium, 58; White House Confere

(1960) participation, 30-31; Youth-NARC, 56 

Programs for the Mentally Retarded, 63, 96, 193, 

206 

ational Association of Parents and F

Mentally Retarded Children, 38 

ties for the Mentally Retarded, 63, 65 

ational Association of State Mental Health Program

National Association of Superintendents of Publ

Residential Facilities for the Mentally Retarded, 

63, 65, 193 

National Cancer Society, 48 

National Ch

National Committee for Mental Hygiene, 6

National Committee on

Disorders, 6

National C

N

6-10, 12, 13 

National Conference on th

the Law, 119

National Defense Education Act (NDEA), 86 

ational Education Assocation (NEA), 69; Department

National Foundation, 48,

National Health Planni

ment Act, 93 

National Institute of Child Health a

velopment (NICHD), 49, 76, 92, 95, 107, 108, 156, 

170, 171, 224

gram, 230; Division of Research Resources and 

Facilities, 224; Men

mental Disabilities Branch, 172 

National Inst

National Institute of Learning, 108 
National Institute of Mental Health (NIMH), 47, 

 172-173, 211, 250; National 

 Act, 51 

N

ational Institutes of Health (NIH), 49, 92, 109, 110, 

areer Research Awards, 49, 107 

edicine, 92 

tion Association, 63 

ommittee, 45 N

N , 199, 202, 205, 208 

N

N

N

N

N

N

titute of Child Health and 

 Institutes of Health 

 of Mental Health 

stitute of Neurological and 

ative Disorders and Stroke 

 W., 66, 67 

96, 102, 106, 116, 132, 133 

e on, 66 

orth Carolina, 197; N.C. Association for 

N

N

N

Office of Child Development (OCD), 74, 88, 159 

O

O

O

O

O , 

Old Age Assistance, 89; Old Age, Survivors and 

Om Cretinism och Idioti, vi 

 Council, 234; RRT Center, 

232, 234-235 

Panel Report, see National Action to Combat 

P

P rvice Systems), 262 

tee on Employment 

al 

, 6, 7, 196, 197, 199, 201, 206, 

ociation for Retarded Children 

nwealth of Pennsylvania, 100; Pa. 

l for Feebleminded Children, see 

itute 

eople Live in Houses, 130 

, 75 

 Test II, 155 

ies, 

P

, 48 

 on Employment of the 

, 85, 102, 187-188 

, 102-103, 116, 121, 

, 127-134, 193, 200, 202, 259 

1958), 52 

4, 

, 214, 227, 231; Chronology, 106; 

ial Services, 111-113; Education, 

-115; 

ervices, 121-125; 

areness, 120-121; 

ific Manpower, 107-109; Residential care, 

oover, 

, 

48, 51, 67, 92, 109,

Mental Health

National Institute of Neurological and 

Communicative Disorders and Stroke 

(NINCDS), 92, 171 

ational Institute of Neurological Diseases 

and Blindness (NINDB), 47, 49, 92, 211 

N

170, 224, 225; C

National Library of M

National Mental Health Act, 51 

National Rehabilita

National Residential Care C

National Science Foundation (NSF), 109, 187, 224

avajo Children's Rehabilitation Center, 135 

ebraska, 119, 197

Netherlands, 56, 57, 70 

evada, 207 

ew Hampshire, 205, 207 

ew Jersey, 14, 19, 20, 38, 70, 197, 202, 205, 208 

ew Mexico, 206 

ew Neighbors, 130 

ew York, 4, 5, 13, 18, 19, 119, 196, 197, 200, 207; 

Asylum for Idiots, 4; City College, 211; University, 231, 236 

Newman Report, 213 

New Zealand, 57 

NICHD, see National Ins

Human Development 

NIH, see National

NIMH, see National Institute

NINCDS; see National In

Communic

Nisonger, Herschel

Nixon, Richard M., 25, 

Nomenclature, Committe

N

Retarded Children v. North Carolina, 179; 

University, of, 227 

orth Dakota, 197, 205 

orthwestern University, 236 

.Y.S.A.R.C. and Parisi v. Carey, 179 

ffice for Handicapped Individuals (OHI), 88, 102, 

121, 123, 158 

ffice of Human Development, 88, 93, 102 

ffice of Mental Retardation Coordination, 102, 121 

ffice of Policy, Evaluation and Research, 182 

ffice of Vocational Rehabilitation (OVR), 51

78, 89 

Ohio, 4, 6, 38, 70, 196, 197, 199, 200, 207 

Disability Insurance, 89, 164 

Oregon, 115, 205; DD

234; University of, 

Outstanding Americans Foundation, 56 

Pacific Basin, 73, 124 

Pan Pacific Conference, 73 

Mental Retardation 

aris, 58 

Partnership for Health Amendments, 93 

ASS (Program Analysis of Se

PCEH, see President's Commit

of the Handicapped 

PCMR, see President's Committee on Ment

Retardation 

Pennsylvania, 4

208; Pa. Ass

v. Commo

Training Schoo

Elwyn Inst

Penrose, L., 144, 150 

P

Peterson, Peter, 156 

Philadelphia, 58

Pictorial Completion

PKU, 112, 211, 228

Podesta, Robert, 156 

Population Trends in Public Residential Facilit

204 

Porteus, 144 

ostal Service, U.S., 188 

Powers, Grover F., 46, 47

President's Committee

Handicapped (PCEH), 84

President's Committee on Mental Retardation 

(PCMR), 14, 54, 56, 85

122, 123, 124

President's Commission on Income Maintenance 

Programs, 89 

President's National Committee (

President's Panel on Mental Retardation, 84, 9

105-125, 212

Clinical and Soc

Vocational Rehabilitation and Training, 113

Law, 118-120; Organization of S

Prevention, 109-111; Public Aw

Recommendations, main, 106; Research and 

Scient

115-118 

Presidents: Carter, Jimmy, iii; Eisenhower, 

Dwight D., 30, 84; Ford, Gerald R., 133; H

Herbert, 27; Johnson, Andrew, 85; Johnson, 

Lyndon B., 54, 85, 102, 106, 250; Kennedy, John 

F., 41, 52, 53, 54, 84, 94, 96, 102, 107, 124; Nixon

273 
R

R Theodore, 

2

Pro

N

Ps Psy

Pu

Pu -

), 92, 168; 

-

P

R

R arch and 

C), 212, 217, 231-235, 

conomic and Social 

 Services Administration 

 231; Vocational 

t, 75, 84, 96, 113, 115, 179, 188, 

168-173; 223-242; 

ittee, 49 

115-118; 202-

ards, 111, 117 

m (RSVP), 184-

, 208 

133, 135 

ichmond, Julius, 51 

R

S

S

S 8 

S

, 102 

S

S

S

Si

S

S

S

S

S

S 234 

S

e 

S

ent on Mental 

Sp of the Handicapped and Gifted, 

S mental Security Income 

Standards for Community Agencies, 68 

ly 

S

S

S

S

ichard M., 25, 96, 102, 106, 116, 132, 133; 

oosevelt, Franklin D., 89; Roosevelt, 

5; Wilson, Woodrow, 26 

posed Program of National Action, A, see 

ational Action to Combat Mental Retardation 

ychological Methods of Testing Intelligence, 10

chometry, 9, 10, 144

blic Assistance, 83, 89 

blic Health Service, U.S., 86, 91-93, 111, 168

173, 215; Alcohol, Drug Abuse, and Mental 

Health Administration (ADAMHA

Center for Disease Control, 168; Division of 

Accident Prevention, 110; Division of Hospital 

and Medical Facilities, 215; Division of Mental 

Retardation, 93, 215; Indian Health Service, 168

169; Public Health Service Act, 91, 93; see also 

National Institutes of Health 

ublic Services Administration, 163 

adiation Control, 110 

Ray, David B., Jr., 127, 133

Recreation, 112 

Regional and Local Service Patterns, 196-198 

Regional Rehabilitation Research and Training 

Center, 232-233 

Regional Resource Centers, 240-241 

ehabilitation, 44, 89, 114, 159, 195; Rese

Training Centers (RRT

239, 241; Section of the E

Council of the UN, 58;

(RSA), 88, 163, 215,

Rehabilitation Ac

201, 231, 245

Research, 46-50; 107-111; 

Advisory Comm

Residential care, 4, 6, 18, 45, 111, 

205; Committee, 53; Stand

Retired Senior Volunteer Progra

185 

RH incompatibility, 171 

Rhode Island, 196, 199

Richardson, Elliot L., 102, 131, 

R

Right to Education Act, 71

Robinson, Kenneth, 56 

Rome, N.Y., 13 

Roos, Philip, 46, 50 

Roosevelt, Franklin D., 89 

Roosevelt, Theodore, 25 

Rosen, David, 69 

Rotary, 78 

RSA, see Rehabilitation Services Administration 

SVP, see Retired Senior Volunteer Program 

Saegert, 17 

Sarason, Seymour, 47, 92, 211, 227 

Scheerenberger, Richard C., 193, 202, 205 

cientific Research Advisory Board, 47, 48, 53 

cotland, 57 

econd International Conference of the League, 5

econd Pan American Conference on Mental 

Retardation, 102 

Secretary's Committee on Mental Retardation

Seguin, Edouard, 4, 7, 15, 16, 17, 43, 48 

Senior Companion Program, 185 

Servitude, indentured, 13 

hriver, Eunice Kennedy, 43, 52, 61, 76, 85, 105, 

125 

hriver, Sargent, 85 

imon, 144 

x-Hour Retarded Child, The, 129 

keels, Harold M., 30, 144 

kinner, B. F., 239 

kodak, Marie, 144 

lawson, 30 

mall Business Administration, 115, 188; Act, 188 

ocial and Prevocational Information Battery, 

ocial and Rehabilitation Services (SRS), 88, 163, 

164 

Social Security, 83; Act, 88, 89-91, 117, 163, 245;

Administration, 51, 164-165; Amendments 

(1962), 90, (1967), 215; Insurance, 245; 

Medicaid, 207; Supplemental Security Incom

(SSI), 54, 89, 117, 165, 177, 207, 253 

Souder v. Brennan, 101 

South Carolina, 197, 198, 199, 202, 205, 207 

South Dakota, 197, 199, 202 

Southern Regional Education Board (SREB), 122 

Soviet Union, 57 

pain, 56 

Special Assistant to the Presid

Retardation, 53, 84, 85, 120 

Special Education, 16-22; 42-44; 113; Research 

and Training, 236-241; see also Bureau of 

Education for the Handicapped 

ecial Education

19 Special Olympics, 62, 78-79, 80, 113, 264 

SRS, see Social and Rehabilitation Services 

SI, see Supple

Standards of Child Welfare, 26 

Standards for Residential Facilities for the Mental

Retarded, 68 

State and Local Fiscal Assistance Act (1972), 90 

State Educational Service, 20 

State-Federal Information Clearinghouse on 

Exceptional Children, 71, 74 

State service budgets, 199-200 

State services, organization of, 193-196 

tate, U.S. Dept. of, 102 

terilization, 12, 101 

tern, W., 10 

toddard, 211 

Story of NARC, 37 

Stotzner, 18 

274
Stringham, Luther, 50, 51, 102 

pplemental Security Income (SSI), 54, 89, 117

177, 207. 253 

Su , 165, 

S

S

T

niversity, 

rded, 41 

munity School, The, 

 du Cretinisme, vi 

pt. of, 101, 183-184; Driver 

; 

ining, 183; Technology Sharing 

d Traffic Engineering, 184; 

sportation Administration, 183 

T

U

 Inc., 49, 63, 97, 

U

ic and Social Council, 58; 

EF, 58 

l., 179 

niversity Affiliated Facilities (UAF), 88, 93, 94, 

ty, 101 

, 183; Act 

t. 

Vermont, 196, 197, 205, 207 

, 212 

loyment of 

retarded, 189; Medicine and Surgery, 190; 

90; veterans' benefits, 190 

V

e Volunteers in Service to America 

Vocational Rehabilitation, see Rehabilitation , o ACTION 

W

W

W

3, 54, 84, 85, 120 

, 77, 80, 87 

litan Area Transit Authority 

 201, 205 

of, 227, 228, 229, 232, 240 

W rger, Caspar W., 133 

n Higher Education 

W

5-26, 

(1960), 

; 

4; Aging, 84; Care of Dependent 

ection, 

W

W

W

W

W

W

W . W., 10 

W r, 

W

W

W

Health Organization, 58

Sweden, 56, 105 

witzer, Mary, 88 

witzerland, 17 

Syracuse University, 211 

Tarjan, George, 53, 125, 134, 148, 150, 151, 220 

emple University, 236 

Tennessee, 39, 92, 197, 205 

Terman, L. M., 10, 211 

Texas, 115, 196, 201, 205, 207, 208; Tech U

232, 235, 236 

Thirteenth Amendment, 83 

Thomas, M. Angele, 69 

Thomas, Stanley, B., Jr., 88 

Thomson, Mildred, 38 

Three R's for the Reta

Trainable Child in the Com

43, 86 

Traite du Goitre et

Transportation, U.S. De

and Pedestrian Education and Licensing, 184; 

Environmental Affairs, 183; Highway Safety, 184

Personnel and Tra

Office, 183; Transit an

Urban Mass Tran

Transportation problem, 206 

redgold, 144 

UAF, see University Affiliated Facilities 

UCLA, see California 

MTA, see Transportation 

Utah, University of, 220 

U.N., see United Nations 

United Cerebral Palsy Association,

198 

nited Nations, 55, 58; ILO, 58; Rehabilitation 

Section of the Econom

UNESCO, 58; UNIC

United States v. Kellner, et a

United States v. Soloman, et al., 179 

U

95,109, 112, 122, 161, 162, 214-223, 239, 241 

University Rehabilitation and Research Centers,

231-236

University Year for Action, 185; see also 

ACTION 

Urban Institute, 161 

Urban League v. Metropolitan Area Transit 

Authori

Urban Mass Transportation Administration

of 1964, 183; see also Transportation, U.S. Dep

of 

Very Special Child, A, 129 

Veterans: Health Care Expansion Act (1973), 189; 

Korean War, 212; World War II

Veterans' Administration, 189-190; emp

Services to retarded, 1

Villages of the simple, 12 

Vineland, N.J., Training School, 10 

irginia, 207 

VISTA, se

Viscardi, Henry, 125 

Vocational Education Act Amendments, 113, 115; 

see also Rehabilitation 

Volunteers in Service to America (VISTA), 110

184; see als

aisman Center, Harry A., 232, 233 

allin, J. E. W., 18, 37 

ar Orphans and Widows' Educational Assistance 

Act, 189 

Warren, Stafford, L., 5

Warsaw, 68 

Washington, D.C., 68

Washington Metropo

(WMATA), 101, 183 

Washington State, 38,

Washington, University

Weihofen, H., 119 

einbe

Wellman, 144

West Virginia, 205 

Western Interstate Commission o

(WICHE), 122 

hat Are We Waiting For?, 131 

White House Conferences, 25-34; (1909), 22, 2

83-84, 87; (1919), 15, 26-27, 84, 88; (1930), 15, 19, 

27-28, 84, 85; (1940), 29, 84; (1950), 30, 84; 

30-32, 41, 52, 84; (1963), 123; (1970), 32-33, 84

(1971), 33-34, 8

Children, 25-26, 83; Child Health and Prot

27; Education, 84; Handicapped, 84 

hitman, Walt, 259 

IC, see Agriculture, U.S. Dept. of 

ICHE, see Western Interstate Commission on 

Higher Education 

ilbur, Harvey B., 4, 6, 15, 16, 63 

ilbur, T. C., 63 

illiamson, Emily, 25 

inspear, D

isconsin, 77, 115; Research and Training Cente

234; University of, 77, 220, 227, 228, 229, 232, 235 

olf, Abner, 48 

olfensberger, Wolf, 14 

orld Federation on Mental Health, 57; World 

275 
W

276 

*U. S. GOVERNMENT PRINTING OFFICE 1977 O - 237- 542 

ork Experience and Career Exploration 

Program, 180 

yatt v. Aderholt, 101, 179 

n Research Program, 211 

W

Wyatt v. Stickney, 46, 100, 179 

Yepsen, Lloyd N., 38 

Yeshiva University, 77, 228, 229, 236 

Wyler Children's Hospital, 223 

Wyoming, 110 Zero-reject, 201, 238 

Yale Institute of Human Relations, 211; Mental 

Retardatio

Youth-NARC, 56, 113 

Zigler, Edward, 88, 193, 211
PCMR Staff* 

Fred J Krause 

Executive Director

n 

am

R

A

y 

*

William H. Wilsnack 

Acting Deputy Executive Director

 Helen C. Caldwell 

 Gwendolyn R. Colema

 Jacqueline L. Mordecai

 Ruth H. Seymann 

 Catherine S. Shelton 

 Fay L. Whitcup 

Allen R. Menefee 

Assistant Director, Prog

 A.D. Buchmueller 

 Gwendolyn B. Garnes 

 Sharon K. Hundley 

 Mattie A. Smith 

 Pierette A. Spiegler 

aymond Nathan 

ssistant Director, Communications

Nancy O. Borders 

 Martin Bouhan 

Mary Z. Gra

 Beverly M. Keith 

 Larry Lane 

Consultants* 

Marcia Burgdorf, J.D. 

Rosemary Dybwad, Ph.D. 

Gene Glass, Ph.D. 

Vincent Gray 

Dennis Haggerty, LL.B. 

Edward L. Johnstone 

Michael Kindred, J.D. 

Arthur Lesser, M.D. 

George Tarjan, M.D. 

August 1976 
PRESIDENT'S COMMITTEE ON MENTAL RETA

01 PAID 

 H.E.W.

HEW-391

RDATION

WASHINGTON, D.C. 202 POSTAGE AND FEES

U.S. DEPARTMENT OF

DHEW Publication No. (OHD) 77-21016