Statements by th e L ast Tw o Pres idents o f th e United 

States: "I invite all Americans to join me in commitment to two major national goals:  To reduce by half the occurrence of mental retardation in the United States before the end of this century  To enable one-third of the more than 200,000 retarded persons in public institutions to return to useful lives in the community." 

November 16, 1971 

"There is urgent need to chart a concerted effort to minimize the occurrence of retardation and to assure humane services and full citizenship for those who are retarded. I encourage this Committee to pursue to completion its report on the directions that effort should take over the next quarter century." 

October 11, 1974 

This book is part of a projected "Century of Decision" series that may include the following: Mental Retardation: The Known and the Unknown Mental Retardation: A Century of Decision: Report to the President Mental Retardation: Report of the States 

For sale by the Superintendent of Documents

U.S. Government Printing Office, Washington, D.C. 20402 

Price $2.45 Stock No. 017-090-00021-6

Catalog No. PR 36.8: M52/K76 
MENTAL RETARDATION: THE KNOWN AND 

Information as 

PRESIDENTS COMMITTEE ON MENTA

Was

DHEW Publication No
The materials in this document were developed under 

Department of Health, Education, and Welfare Contract No. HEW—OS—74—289 by Transaction Systems Inc., 800 Peachtree Street, N.E., Atlanta, Georgia 30308. Project Staff: 

Ira L. Fisher, Diane Stephenson, Sybil McWilliams 

Project Consultants: 

Burton Blatt — Director of Special Education and Rehabilitation, Syracuse University, Syracuse, New York James D. Clements — Director, Georgia Retardation Center, Chamblee, Georgia William Cruickshank — Director, Institute for the Study of Mental Retardation and Related Disabilities, University of Michigan, Ann Arbor, Michigan Thomas Porter — Director, Department of Counseling and Guidance, University of Georgia, Athens, Georgia J. C. Terrell — Associate Professor of Management, Georgia State University, Atlanta, Georgia 

Project Officer: 

William H. Wilsnack 

Century of Decision Series Coordinator: Henry V.

Cobb, Ph.D. 
Mental Retardation is a condition with which we have been living since civilization began. Althoumuch has been accomplished to identify, treat, and sometimes eliminate certain causes of mental rcontinually learning that its effects go far beyond present knowledge. There is an urgent need to det

what is known about mental retardation today. There is a parallel need to identify and acknowledge thoknowledge does not exist, and only opinion prevails. In this book we attempt to identify what is known, and to present it in such a manner that anyone interested in mental retardation will find it readily useable. This work deals with the nature an

retardation and its social implications. It presents information related to three goals of the PresideMental Retardation: minimum occurrence of the disability, adequate and humane service systems, an

citizenship for those who are mentally retarded. It is hoped that this book will be first of all informative and authoritative, and that the manifest absin many areas will prove an incentive to seek facts that are presently lacking. The book should be a knowledge on which future directions can be charted. It is an essential prelude to the Committee's fothe President on the future outlook for those who are mentally retarded. I wish to acknowledge the generous contributions of members, consultants, advisers and staff of the PreThe task group of Dr. Cecil Jacobson, Aris Mallas, Alfred Weissberg, Dennis Haggerty, and Wil

especially recognized. 

James N. Juliana Chairman of the Task Group and Member of the President's Committee on Mental Retard
The nation has been given a mandate by its President "... to chart a concerted effort to minimize the occ

retardation and to assure humane services and full citizenship for those who are retarded."

The President's Committee on Mental Retardation is charged, on the eve of the Bicentennial, to make a major r

advising him on the best methods for achieving these goals. This book is one part of that report. It describes for each of the three major goals mentioned above what can reported about the level of methodology and accomplishment in the United States, in the year 1975. It is stated now, and will be repeatedly emphasized, that there are many gaps in available information. While recwithin the scope of the book, the need for information to be readily available is stated as a truism. Effective operated if major questions go unanswered.It would be inaccurate to state that the highlighted gaps always represent the unknown or the unknow

information presented here represents the best of what could be obtained from what are called, in today's la

retrieval systems." Those in the field have done much more than can be reported here, but documentation of th

collected in a central reporting system. Apart from the three specific areas of occurrence, services, and citizenship, each of which is discussed in a separquestions are discussed: what is mental retardation and what are the costs of mental retardation? The first qintroduction. The second, although placed at the end, is not a summary, but raises questions that must be anworks to meet its objectives. The information presented in this book should serve as a baseline for monitoring present circumstances anindicating future change. 
TABLE OF CONTENTS 

WHAT IS MENTAL RETARDATION? ...................................................................................................... 1 

How Has the Definition of Mental Retardation Evolved? ........................................................................... 2 

How Has the Definition of Mental Retardation Been Approached? .......................................................... 4 

What Is Subnormal Intellectual Functioning? How Is It Detected? ........................................................... 5 What Is Adaptive Behavior? How Is It Measured? .................................................................................... 6 

How Are Ratings of Intellectual Functioning and Adaptive Behavior Related?......................................... 7 How Are the Numbers of Mentally Retarded People Determined? ........................................................... 8 What Is the Incidence of Mental Retardation? ............................................................................................ 9 

What Is the Prevalence of Mental Retardation? ......................................................................................... 10 

How Has the Prevalence of Mental Retardation Been Studied? ................................................................. 11How Has the Prevalence of Mental Retardation Been Calculated? ............................................................ 12 What Is a Handicap? ................................................................................................................................... 13 What Is the Prevalence of Associated Handicapping Conditions in Mentally Retarded Persons? ............ 14 

WHAT IS MINIMUM OCCURRENCE OF MENTAL RETARDATION? ................................................ 17 

What Is the Goal of Minimum Occurrence of Mental Retardation? .......................................................... 18 What Are the Issues Involved in Minimum Occurrence of Mental Retardation? .......................................18 

What Research Is Being Attempted on Causes of Mental Retardation? .................................................... 19 

What Means Are Available to Prevent Mental Retardation?...................................................................... 19 

What Is Meant by Chromosomal-Genetic Causes of Mental Retardation? ................................................ 20 

What Is Down's Syndrome? ........................................................................................................................ 21 How Many Children are Born with Down's Syndrome? ............................................................................. 22 How Can Genetic Counseling Help Prevent Mental Retardation? ............................................................. 23 What Are the Inborn Errors of Metabolism? .............................................................................................. 25 How Is Tay-Sachs Disease Related to Mental Retardation? Is It Preventable? ......................................... 26 

How Is the Rh Factor Related to Mental Retardation? ................................................................................27 How Is Rh Factor-Related Mental Retardation Prevented? ........................................................................ 28 

How Is Rubella Related to Mental Retardation? ........................................................................................ 29 

How Is Rubella-Related Mental Retardation Prevented? ...........................................................................30 

How Are Prematurity and Low Birth Weight Related to Mental Retardation? ...........................................31 

How Does Maternal Nutrition Affect the Occurrence of Mental Retardation? .......................................... 32 What Do Infant Mortality Rates Tell Us About the Occurrence of Mental Retardation? .......................... 33 

Does Malnutrition in Children Cause Mental Retardation? ....................................................................... 34 

What Is the Relation Between Lead Poisoning and Mental Retardation? .................................................. 35 What Is Meant by Socio-Cultural Mental Retardation? ............................................................................. 36 What Can Be Done to Prevent Socio-Cultural Mental Retardation? .......................................................... 37 
WHAT ARE ADEQUATE, HUMANE SERVICE SYSTEMS? .................................................................. 39 

Introduction ................................................................................................................................................. 40 What Is the General State of Information about Services? ......................................................................... 41 What Services Are Required to Meet the Health Needs of Mentally Retarded Individuals?.......................44 What Services Provide Mentally Retarded Persons with Social Relationships? ........................................ 48 Human Sexuality and the Mentally Retarded Person ................................................................................. 50 What Services Provide Mentally Retarded Persons with Programs of Daily Activity? .............................. 51 What Are Some Trends in Education for Mentally Retarded Persons? ...................................................... 52 What Vocational Training and Employment Services Are Provided Mentally Retarded Persons? ........... 54 

What Physical Education and Recreation Activities Are Provided Mentally Retarded Persons?................56 

What Services Provide Mentally Retarded Persons with a Source of Income? ..........................................58 Two Major National Studies of Income Maintenance Programs for Mentally Retarded Persons Occurred in 

1967 and 1970 .......................................................................................................................................... 59 

What Is the Supplemental Security Income Program (SSI)? .......................................................................60 Where Do Mentally Retarded Persons Live? Who Cares for Them? ......................................................... 61 How Accessible Are Services for Persons Who Are Retarded? ................................................................. 71 What Manpower Is Needed to Provide Services for Mentally Retarded Persons? ..................................... 71 What Is Accountability for Mental Retardation? ........................................................................................ 72 What Are Currently Existing Mechanisms for Program Evaluation? ........................................................ 72 

WHAT IS FULL CITIZENSHIP FOR MENTALLY RETARDED PERSONS? ........................................ 75 

The United Nations Declaration on the Rights of Mentally Retarded Persons, 1971 ................................ 76 What Are the Issues in Full Citizenship for Mentally Retarded Persons? .................................................. 77 How Can Rights Be Classified? ...................................................................................................................78 

How Has Litigation Affected the Citizenship of Mentally Retarded Persons? .......................................... 79 What Is the Right to Education? ................................................................................................................. 80 What Is the Right to Treatment?................................................................................................................. 82 What Is the Right to Freedom from Harm? ................................................................................................ 83 What Is the Right to Payment for Work? .................................................................................................... 84 How Does Legislation Affect the Rights of Mentally Retarded Persons?.................................................. 84 What Effect Does Legislation Have in Other Areas? ................................................................................. 86 How Do Questions of Competency Affect the Citizenship of Mentally Retarded Persons?........................87 How Can Full Citizenship of Retarded Persons Be Assured Other Than Through Law? ...........................89 How Do Attitudes Affect the Rights of Mentally Retarded Persons? ........................................................ 91 What Do Mentally Retarded Persons Have to Say? ................................................................................... 92 Are There Organizations Working for Full Citizenship for Mentally Retarded Persons? . .........................93 
WHAT ARE THE COSTS OF MENTAL RETARDATION? ..................................................................... 95 

Where Do Funds for Mental Retardation Programs Come From? How Much Is Spent? ...........................96 

What Are the Economic Benefits of Preventing or Ameliorating Mental Retardation? .............................97 What Is the Economic Impact of Vocational Rehabilitation of Mentally Retarded Persons? .....................98 

What Is the Economic Impact of Education of Mentally Retarded Persons? ..............................................99 What Are the Trends in Federal Spending on Mental Retardation Programs? ..........................................100 

REFERENCES ............................................................................................................................................ 102 INDEX .......................................................................................................................................................... 111 PRESIDENT’S COMMITTEE ON MENTAL RETARDATION......................................... inside back cover 
WHAT IS MENTAL RE
How Has the Definition of Mental Retardation 

Evolved? Mental retardation refers to significantly subaverage general in tellectual functioning ( two s tandard d eviations below t he n ormal) e xisting concurrently with deficits in adaptive behavior, and m anifested d uring t he developmental period. This is the definition adopted by the American Association on Mental Deficiency (AAMD) on advice of its Task Force on Classification and Terminology headed by Herbert Grossman in 1973. It is the latest in a series of efforts to define mental retardation. These efforts are certain to continue. In 1846 Samuel Gridley Howe defined "feebleminded" persons who ranged in level of incapacity from those with reason enough for simple individual guidance plus normal powers of locomotion and animal action, to "mere organisms." In 1914 Henry Goddard subdivided the "feebleminded," again by degree of incapacity, into "morons, imbeciles and idiots." In 1941 Edgar Doll defined "mental deficiency" as 

"(1) social incompetence, (2) due to mental subnormality, (3) which has been developmentally arrested, (4) which obtains at maturity, (5) is of constitutional origin, and (6) is essentially incurable." In 1958 Seymour Sarason and Thomas Gladwin accepted Doll's definition for those persons with brain damage 

but proposed another which applied who almost invariably come from classes and whose low [intelligence] t

considered a reflection of intellectual In 1959 Rick Heber prepared Association on Mental Deficiedefinition which received wide use: refers to subaverage general intelwhich originates during the developmassociated with impairment of aSubaverage functioning was defined statisticians to mean anyone more deviation below the normal (IQ appbelow). It included a group called "band labeled successive degrees of immoderate, severe, and profound mental In 1973 Jane Mercer tried to define 

in a different way, from what she systems perspective" rather thperspective." She considered ment"achieved status in a social system by persons holding that status." One considered mentally retarded and lathough not meeting all the criteria AAMD definition. See references 30, 36, 50, 72, 77 
Two Views of Mental Retardation 

Clinical Perspective 

Intelligence is an entity that exists independent of cultural setting. If one is retarded according to standard statistical or medical tools, he is retarded. A clinician can detect abnormalities not apparent to laymen. These unseen abnormalities can be proof of retardation. The real number of retarded people in an area can be scientifically determined without considering the area's social structure. 

Social Systems Perspec

"Intelligence" is relative to the requireparticular social system. One can be "retarded" for some sysand "normal" for others (e.g., family Retardation cannot be "undetected," is retarded only by virtue of being particular setting. The number of people labeled retadetermined by the social structure of is expected of persons; how muchdifference tolerated?) 

Adapted from: Mercer, J.R. Labeling the Mentally Retarded. Berkley, California: University of California Press, 1973. Also in 1973, the Grossman committee modified the earlier AAMD definition, this time eliminating the catego

dation and placing the upper IQ limit of mental retardation at approximately 70 (depending on which intelligence teThis definition is not fully applied. As a consequence, practice follows a variety of definitions, some of them diffe

established ones. This is particularly true in the areas of regulation and service. See references 50, 77 
How Has the Definition of Mental Retardation Been 

Approached? Underlying the differences in definition presented here are approaches from different scientific frameworks. From the biological or medical viewpoint, mental retardation has been seen in terms of pathology, or sickness, which differentiates individuals in their physical make-up and function from the characteristics of the "normal" individual. From the educator's viewpoint, the mentally retarded individual is of concern when he does not respond to the usually successful methods of instruction in use in the schools. This has led to the statistical focus, which 

attempts to classify individuals according to intellectual potential and thereby predict the limits of future success or achievement. As important as scientific concerns are, societal attitudes have been just as important in the developing definition of mental retardation. As evidence mounted that more retarded persons were "found" in certain ethnic or income groups and in certain geographical areas, pressure was exerted to re-examine definitions of retardation to determine whether the consequences of deprivation were being confused with constitutional disability. There remain unresolved definitional questions that are under continuing inquiry. See reference 22 
What Is Subnormal Intellectual 

Functioning? How Is It Detected? 

It is the inability to use one's mind for thinking, reasoning, figuring, or remembering as well as someone who is "normal," as a result of a developmental problem. "Normal" means average, and is determined by responses to intelligence tests. The first attempts to measure intelligence in children by Binet and Simon in France in 1905 were brought to the United States and extended. Around 1915, Stern and Terman proposed the "intelligence quotient" (IQ), to compare a child's "mental age" as revealed on the tests, with his chronological age. By dividing mental age by chronological age and multiplying by 100, a number is achieved: the individual's IQ. Subsequently, a wide range of other tests for measuring intelligence have been developed, using other methods for obtaining an IQ. The most widely used is the Wechsler Series, applicable to both children and adults. The average score on intelligence tests is 100. How far above or below this number a person's score falls determines whether he or she is psychometrically "bright" or mentally retarded. 

The following chart shows the major levels of mental retardation and the IQ ranges that apply to each level, from two widely used intelligence tests. 

Obtained Intellig

Level of Mental Retardation 

(Borderline)* Mild Moderate Severe Profound 

Stanford-Binet

(69-84) 

52-68 

36-51 

20-35 

19 and below 

 Wec

*"Borderline" figures are given here for compari

American Association on Mental Deficiency adodefinition, persons scoring in this range are nmentally retarded. 

There are a number of previntelligence tests today: 

 They are based on the 

middle-class persons and pertinent to persons of othe

 They measure achieveme

ferences in opportunity to native intelligence. 

 They are used arbitrarily 

excluding persons of minoopportunities to learn. 

 They are over-simplified ref

and unique human character

See references 30, 50, 77 
What Is Adaptive Behavior? How Is It Measured? 

Although measurement of mental retardation was first concerned with intelligence, especially with more severe forms of retardation, deficits in adaptive behavior are the first indications of a problem. Simply stated, adaptive behavior refers to the way an individual performs those tasks expected of someone his age in his culture. For very young children, expected behaviors are dressing, eating with utensils, and acceptable toilet training. Older children are usually expected to go to school and advance in grade, be able to handle money, and take some responsibility for household chores. Adolescents are expected to develop independent social relationships, cope with their sexual development, and begin to earn money. Adults are expected to be capable of adequate performance in a job or the management of a household. Since Heber's definition of mental retardation was adopted by the American Association on Mental Deficiency in 1959, attempts have increased to develop an accurate assessment of adaptive behavior. Some well known measures in use today are the Apgar test for newborn infants, the Vineland Social Maturity Scale, the Gesell Developmental Scales, the AAMD Adaptive Behavior Scales, and the Denver Developmental Screening Test. In Europe, the Gunzburg Progress Assessment Chart is very widely used. Measures of adaptive behavior typically depend on the 

judgments of people who know the indivon direct observation by the tester. Becabe rated often cannot be seen under "la

(for example, a person's ability to use p

tests are often time consuming. Some persons have criticized the availathey do not adequately account for cudifferences that would make for diffe"normal behavior." With the exception of the child developmby the Maternal and Child Health ServicHealth Service, adaptive behavior measspread far beyond the institutions, wdevelopment took place. Most childreclinics for evaluation are rated for badaptive behavior, and both scales are diagnosis of mental retardation. See references 50, 77, 118 
How Are Ratings of Intellectual F unctioning and 

Adaptive Behavior Related? Is low IQ predictive of adaptive behavior failures? 

The answer is indefinite. We do not know. 

New Patients in Maternal and Child Health Mental Retar

by Intelligence and Adaptive Behavior Levels, Fiscal 

Intelligence Level Adaptive Behav

Number %* N

Total Determined 22,728 100.0 Total Determined No Retardation 

9,026 39.7 

No Retardation 

Borderline 

4,886 21.5 

Mild Retardation 

3,955 17.4 Level-1 (Mild) 

Moderate Retardation 

2,621 11.5 Level-2 (Moderate) 

Severe Retardation 1,508 6.6 Level-3 (Severe) Profound Retardation 732 3.2 Level-4 (Profound) 

*Does not total 100% due to rounding. 

Adapted from: U.S. Department of Health, Welfare. Children Served in Mental RetardatFiscal Years 1970-1972. Rockville, Maryland Child Health Service, 1973. 

The last year for which data represented in the above table cannot be drawn. were available from the Maternal and Child Health Service is There is no available information on 

1972, when the pre-1973 AAMD definition of mental mentally retarded individuals who have retardation was in use. For that reason, borderline retardation is basis of using IQ and behavior tests comb

still listed as a category. Since different numbers of persons were given the different tests, comparisons between scores See reference 108 
How Are the Numbers of Mentally 

Retarded People Determined? This is a question of epidemiology, the science of determining the amount and distribution of a condition or disease in a given population. Mental retardation is a condition, not a disease. Two measures are used:  Incidence refers to the frequency of 

occurrence of new cases of mental retardation in a population during a designated time interval. Questions concerning incidence usually are related to prevention. 

 Prevalence refers to the proportion 

of persons in a population who are considered mentally retarded at a given time. Prevalence is important in determining the need for services. 

What Is t he Connec tion Bet ween Incidence and Prevalence? The incidence of mental retardation ultimately determines the prevalence of retardation. The following table shows the effect of incidence on prevalence under different conditions. This table illustrates that even if occurrence of mental retardation were to be prevented within the next ten years, there would still be need to provide increasing amounts of service in the immediate future. 

An Illustration of the Effect of Incidence on Preva

Persons 

Leaving 

The

Population 

One 

Per 

Year 

Year 1 

Incidence—10 Per Year 

Year 5 

Incidence—5 Per Year 

Year 10 

Incidence—0 

• • • • • • • • 

Prevalence = 

10 — 2 = 8 

• • • • • • • • • • 

• • • • • • • • • • • • • • • • • • • • • • • • • 

Prevalence = 

45 — 10 = 35 

• • • • • • • • • • 

• • • • • • • • • • • • • • • • • • • • • • • • • • • • • • 

• • • • • 

Prevalence = 

65 — 20 = 45 

• • • • • • • • • 

Prevalence = 

10 — 1 = 9 

• • • • • • • • • • • • • • • • • • • • • • • • • • • • • • 

Prevalence = 

45 — 5 = 40 

• • • • • • • • • • • • • • • • • • • • • • • • • • • • • • 

•••••••••• •••••••••• • • • • • 

Prevalence = 

65 — 10 = 55 

 = one mentally For purposes of the illustration, it i

retarded person incidence drops in the fifth year to ha

year to zero and that the rate of ppopulation is constant at either one or How do people leave the popul(medical orientation) or ceasing to furetarded (psychological, educational 
What Is the Incidence of Mental Re

There are no methods currently availtrue incidence of mental retardation. speak of "the incidence" as if unchangeable rate. The number of peimpairments in adaptive behaviosignificantly subaverage intelligence on such factors as circumstances of adequacy of health care, economic cocircumstances. Consequently, questiare related to prevention of mental retObviously, incidence and prevalence determined by the way in which mdefined. Some factors that contribute to diffithe incidence of mental retardation are 

 It is not possible to identify in eve

mental retardation. Therefore, indetermined at its source. 

 In only the minority of cases can 

birth that a person is, or ever will bor that, having been identified as retnot at some time cease to be so rega

 Most mentally retarded persons are 

or six years of age when they enter school and are subject to intelligenc

 Many children, classified socio

retarded, are not mentally retarded show deficits in functioning after th
What Is the Prevalence of Mental 

Retardation? We are now at a point of being unable to establish the prevalence of mental retardation. This is one of the serious lacks of information since prevalence determines the need for service. The answer to this question really has two parts: one fairly well agreed upon, the other shrouded in controversy. A recent summary of epidemiological surveys that were conducted in the United States concluded that the prevalence rate is 0.3 percent for "severe" (actually moderate, severe, and profound) retardation. For the most part, the diagnosis of mental retardation for these individuals can be confirmed medically (through detection of physical signs associated with mental retardation), psychometrically, and through deficits in adaptive behavior. They are obviously retarded, and usually obviously handicapped as well. Epidemiological studies in other countries tend to converge on similar findings. When mild mental retardation is added, consensus completely breaks down. The widely quoted three percent total prevalence figure used over the years is now being shown to be affected by many factors, including: 

 changes in definition of mental retardation  ways of identifying mildly retarded individuals  confusion with respect to what constitutes socio-cultural retard

It is pointed out that at any given time only one percent (includidentified. The discrepancy between a statistically predicted tactual one percent identifiable is demonstrated by the accompanyTarjan and associates estimated the differences between sprevalence of mild mental retardation assuming early identifideficit (2.5 percent), and clinical identification using the Heber d

From the above table it is manifest that the majority of differenaccounted for by the adult population. The estimates for the schoidentical. Among possibilities suggested for such discrepancy are that mildly retarded in childhood cease to be retarded as adults, or thaa large unidentified group in need of services. Further epidrequired to explain the "disappearing retarded" in the adult age ra

Predicted Prevalence of Mild Mental Retardation

in a Nation of 200,000,000 Persons

Number Mildly Retarded (100,000)30 25 A

20 e

M

15 A

A

10 M

5 (0 

0-5 6-19 20-24 25 and over 

Using 1% Prevalence Using 3% Prevalence 

S

Age Group 
How Has the Prevalence of Mental 

Retardation Been Studied? A six-year long survey by Connecticut's Seaside Regional Center, using the HeberAAMD definition of mental retardation, supports the one percent estimate. Of about 338,000 people in that region, only 2,587 persons, or 0.8 percent of the population,were diagnosed or had ever been diagnosedmentally retarded. Additional support comes from the Grossman-AAMD definition of mental retardation (1973). The changes resultingfrom this new definition were shown in a Riverside, California study. Using the pre1973 definition of Heber, prevalenceamong school age children was 3.47 percent. Using the new definition, it was 0.97 percent. Differences were especially striking when tests for Mexican-Americans in the area were changed to reflect cultural and social class differences. 

Prevalence of Mental Retardation in Mexican-American Ch

Using Different Standards 

Intelligence Tests Adaptive Behavior Test C

Mexican-American Children 14.9% Mentally Retarded 6% Mentally Retarded 1.53% Mentally Retarded Adapted from: Mercer, J.R. Labeling the Mentally Retarded. 

University of California Press, 1973. 

Those children who retarded in schools (retarded in the clinicwere much more likfamilies than those escaped the label. It should be borne iGrossman-AAMD dformer "borderline" definition of mental mean that such indproblems of learning or that they do nsupporting service. See references 24, 50
How Has the Prevalence of Mental Retardation Been 

Calculated? On the assumption that an IQ below 70 is sufficient indication of the possibility of adaptive failure, Conley, from his analysis of over 20 epidemiological studies, estimates an overall prevalence of mental retardation very close to three percent so that in 1970, 5.6 million persons were mildly retarded. (His definition of mild retardation, IQ 51-69, is very slightly different from the IQ range according to the current AAMD definition.) He also stresses, however, the differences in prevalence for differing populations. Indications are that mild retardation is: 

 six to seven times more prevalent among non-whites 

than whites; 

 thirteen times more prevalent among poor 

than middle or upper income groups; and 

 found most frequently in rural, isolated areas and inner 

city ghettos. 

To speak of "the" prevalence of mental retardation, then, is really to lose sight of the significant differences that occur among different regions, ethnic and income groups, and, as shown earlier, different age groups. The foregoing material points up again the current lack of information concerning the prevalence of those with degrees of functional deficit less than that of "obviously" (moderately, severely, and profoundly) mentally retarded persons. See reference 23

 12 
What Is a Handicap? 

There is no clear-cut agreement amon

what constitutes a handicap. Different term according to their needs: tAdministration concentrates on em

concentrate on educational performance. 

The recently formed Office for HandicaI) of the Department of Health, Edudefines a handicapped person as: ". . because of a physical or mental disabilityin performing one or more major life 

communication, movement, emplosocialization, and self-care)." Each of these major life activities is vabilities of a non-handicapped person, anseparately. For example, someone might nicate well, but be perfectly mobile. Mental retardation, when diagnosed, handicapping condition. Much more frgeneral population, retarded persons havor emotional problems severe enhandicapping conditions by themselves. 

See references 6, 122 
What Is the Prevalence of Associated Handicapping Conditions in 

Mentally Retarded Persons? In a 1971 nationwide survey of persons (both in community settings and residential facilities) labeled mentally retarded, the following handicaps were found. 

Prevalence of Other Handicaps (%) in Mentally Retarded Persons Additional S

With at LeasAdditional of Severe Additional P

Additional Han

Function No Handicap Partial Handicap Severe Handicap Description of Severe Handicap 

Ambulation 57.8 32.4 9.9 Able to take few steps with hel

p or totall

y unable to walk 

Upper limbs, gross motor control 57.5 34.2 8.2 Unable to hold large objects or complete lack of muscle control Upper limbs, finemotor control 56.1 34.9 9.0 Minimal use of hands, cannot use eating utensils 

Speech 45.1 33.4 21.5 Can possibly communicate needs or wants, but uses few or no words Hearing 85.0 11.5 3.4 Functionally or totally deaf, hearing aid partial or no help Vision 73.3 20.9 5.9 Minimally sighted 

(uncorrectable) or le

gall

y blind 

Seizures (epilepsy, convulsions) 82.3 15.1 2.7 Severe seizures partially controlled or uncontrollable 

Behavior, emotional disorders 58.1 35.7 6.3 

Adjustment not possible in home environment, abnormal behavior, dan

gerous to self or others 

Toilet training 77.5 10.2 12.3 Dependent on others, slightly toilet trained, or not trained 

Percentages may not add to 100 due to rounding. 

Adapted from: Conroy, J.W., and Derr, K.E. "Survey and 

 Free of A

88% 

 With at L

Analysis of the Habilitation and Rehabilitation Status of the Handicapping Mentally Retarded with Associated Handicapping Conditions." Washington, D.C.: Department of Health, Education, and Welfare, 1971. 
Prevalence of Chronic Organic 

Conditions (%) in Mentally Retarded Persons 

Percent Chronic Organic Condition 

68.9 No chronic organic condition 6.5 Chronic upper respiratory problems 0.8 Diabetes 3.4 Heart disease 4.9 Extreme obesity or severe chronic anemia 2.1 Cosmetic handicap (facial disfigurement) 5.4 Dental or orthodontic conditions 1.7 Cleft palate or oral deformity 3.4 Metabolic and endocrine disorders 2.9 Skin disorders Percentage does not equal 100 because persons sometimes had more than one condition. The sample included 14,086 individuals. Some persons called "borderline mentally retarded" were included. See reference 25 

What Effect Do These Additional Handicaps Have? Handicapping conditions act cumulatively, i.e., the inability to do one major activity may limit participation in others. For example, the mentally retarded child who is not toilet trained is often excluded from special education classes. In part because of this, the Developmental Disabilities Act was passed in 1969. It was recognized that similarities and overlaps exist among mental retardation, epilepsy, 

cerebral palsy, and other neurological handicaps. Support for projects for all of these conditions was brought under the same funding mechanism. We have only estimates of the number of persons with two or more developmental disabilities, and they vary widely, e.g., estimates of the presence of mental retardation among cerebral palsied children have ranged from 15 to 70 percent. Again, information is lacking in this extremely important area. 

What About the AbRetarded Persons? Studies such as previous page shoand effect of additNo definitive stueffects of positiassets of retarded been found. Yet evidence that many persons have aveabilities in differealso evidence thpersons have "profiles," being pareas, deficient in The absence of incapabilities of persons represents current knowledge. See references 6, 22
WHAT IS MINIMUM OCCURRENCE OF MENTAL RETARDATION? 
What Is the Goal of Minimum 

Occurrence of Mental Retardation? Simply defined, minimum occurrence of mental retardation means the reduction of the incidence of mental retardation, and the resultant prevalence, to the absolute minimum. Stated as an objective for the nation it has been said: "To reduce by half the occurrence of mental retardation in the United States before the end of this century." 

—Presidential Statement, 

November 16, 1971 

What Are the Issues Involved in Minimum Occurrence of Mental Retardation? There are two major issues: the discovery of causation and the application of preventive measures. With respect to causation (etiology), if circumstances leading to mental retardation are known, remedies can be sought and preventive strategies developed. There are more than 250 known causes of mental retardation, or diseases and conditions so associated with the later development of retardation as to be considered probable causes. The causes cover the range of hereditary, biological, psychological, and sociological determinants of life conditions and development. They include chromosomal-genetic influences derived from heredity or physiology. They include diseases, infections, accidents, and the physical neglect and mistreatment of children. And they include the slow, sometimes subtle, influences of the physical, psychological, and social environment which may influence the development of mental retardation through deprivation. Because of the problems in 

estimating the inretardation stated of incidence attribcauses is not yet kPrevention depetiology or empiits application. Where knowledge cut, as will be shoof rubella and retardation attricauses can be eliminated by devavailability and preventive technolSince there imeasuring the ocretardation, progreof reducing it by cannot yet be assesSee reference 50 
What Research Is Being Attempted on 

Causes of Mental Retardation? Twelve Mental Retardation Research Centers sponsored by the National Institute of Child Health and Human Development (NICHD) through its Mental Retardation Branch, devote their full effort to seeking causes and remedies for mental retardation. NICHD also supports independent research not affiliated with these centers, and the training of research scientists. Various other government agencies—the Maternal and Child Health Service (MCHS), the Division of Developmental Disabilities (DDD), the Bureau of Education for the Handicapped (BEH), and the National Institute on Neurological Diseases and Stroke (NINDS), among others, help fund research on mental retardation. University departments of genetics, obstetrics, pediatrics, education, psychology, and sociology contribute regularly to the search for causes. The range and volume of the research effort, 

and the amounts of public, philanthropic, university, and other funds spent on research are not known. See references 31, 44, 50, 52, 93 

What Means Are Available to Prevent Mental Retardation? They can be grouped according to time of application. Pre-Conception 

 Genetic assessment to determine potential 

chromosomal-genetic risks in pregnancy; 

 Timing and spacing of pregnancies through 

family planning strategies; 

 Adequate nutrition for women of childbearing age; and  Immunization. During Pregnancy  Protection of mother and fetus against 

disease; 

 Proper nutrition;  Monitoring pregnancy through medical 

supervision; 

 Use of amniocentesis to determine the condition of the fetus in high risk mothers; and  Parental choice of termination of pregnancy 

when amniocentesis confirms that the fetus is defective. 

At Delivery Medical supervision of delivery in a hospital, including: 

 Screening for conditions causing mental retardation to determine newborn children at 

risk, and taking indicated remedial action; 

 Protection of Rh—mothers with gamma 

globulin within 72 ho

 Intensive care of chil

or premature. 

In Early Childhood  Proper nutrition for n

infants and very youn

 Dietary management 

conditions leading to 

 Removal of environm

lead-based paint; and 

 Early social stimulat

infants and young chof developing mentavention) and for chilmental retardation (to 

This chapter discusses conditions associated wand what is being donlessen their occurrenceSee references 54, 93, 
What Is Meant by ChromosomalGenetic Causes of Mental 

Retardation? Each cell in the body contains 23 pairs of chromosomes containing the genes which are the biological elements that transmit characteristics from one generation to the next. The chromosomes and their genes are inherited equally from each parent and, when combined in the cells of the child, constitute what the child has inherited from his or her parents. The chromosomes and genes plus the influences of the environment determine how one looks, feels and behaves. The chromosomal composition of a typical cell is referred to as a karyotype which is illustrated by the accompanying diagram. Microscopic examination of chromosomes in a specific cell of a living person, when the 

chromosomes are arranged in a specific order as illustrated by the karyotype, permit determination of differences from the normal, or socalled chromosomal anomalies. These errors may be the absence of part of a chromosome or an entire chromosome, the presence of more than the normal number of chromosomes, or the exchange of parts of chromosomes from different pairs. Occasionally, normal individuals are found to have an exchange (translocation) of material between two chromosomes. This anomaly is a clue to defects which may occur in children born to such individuals, and forms the basis of genetic predictions of problems such as 

mental retardation. Genetic changes can occur during one's lifetime. They help account, for example, for differences in children born to a mother at different ages of her life. 

However, mochildren witabnormalities karyotypes in eve

Defects attributaand genes rangon a single gepolygenic (manOnly chromosomdiagnosed from an

It is estimated States one child live births has a polygenic anomnumber have mirelationship of mental retardatiunderstood. See references 31106, 113 
Diagrammatic Representation of Chromosomes, 

Normal Karyotype 
What Is Down's Syndrome? 

Down's syndrome was discovered in 1844 by Seguin and is named after Langdon Down, who reported in 1866 on a number of mentally retarded children who had a characteristic facial appearance. Not until 1959 did Lejeune demonstrate that Down's syndrome is associated with the presence of an extra chromosome. Since then, other chromosomal rearrangements (some hereditary) resulting in Down's syndrome have been identified, but by far the most common form (trisomy 21) is rarely inherited. More Than 50 signs of Down's syndrome have been identified. Not all signs appear in all cases. The major characteristics of the syndrome are moderate to severe mental retardation, poor muscle tone, characteristic facial appearance (upward slanting eyes, small round head, small low-bridged nose, protruding tongue), frequent abnormalities of the heart and the eyes, and upper respiratory infections. See references 60, 66, 88, 106, 120 
0 

How Many Children are Born with Down's Syndrome? A child with Down's syndrome is born once in every 600 

to 700 live births. Of the major types of Down's syndrome, by far the most common is trisomy 21, or the presence of 

three instead of the expected two #21 chromosomes. For trisomy 21 the most important associated factor is mother's age at conception, as shown in the following chart. 

Increasing Risk of Down's Syndrome, 

in Live Births, by Maternal Age 

 (Trisomy 21) 

26 

24 

22 20 18 16 

14 

12 10 8 

6 

4 2 

All M others 29 o r U nder 30-34 35-39 40-44 45-49 

Maternal Age at Conception 

Adapted from: Koch, R., and Dobson, J. The Mentally Retarded Child and His Family: A Multi-Disciplinary Approach. New York: Brunner-Mazel, Inc., 1971. 

The number of neDown's syndrome repercentage of the nchildren conceivespontaneously aborted. A suggested reason increasing risk of Doincreased maternal agsusceptibility to dammother. The total npresent at the motheperiod of years are reexposed to physical anmay cause chromosomSome other factors associated with incresyndrome are pre-ovradiation and other repeated abortions, apregnancies; but no cabeen demonstrated. Rincreased for mothers borne one Down's regardless of maternal aSee references 60, 66, 
How Can Genetic Counseling Help P

Retardation? Genetic counseling is a recent and ito prevention of mental retardation Although occasionally offered by alone, it usually involves a multiincluding research scientists, psyworkers, and public health nurses as Chromosomal analysis and other examtaking a family history) help deteincreased risks; that is, if either or boabnormal genes for a severe environmental factors pose an increaA larger number of defects can be pregnancy through amniocentesis. Twhich was developed in the late ninehas had extensive use only in the last A needle is inserted in the amniotic the developing fetus and a small obtained. Fetal cells in the fluid can determine the chromosomal make-up 95 percent of the cases where amniserves to detect chromosomal errors. In addition, about 60 genetic-metabdiagnosed by this procedure, appropriate testing of the culturThese disorders are individually and and account for well below 0.1 penewborns. See references 31, 39, 66, 93, 106, 120 
Genetic counselors usually review diagnostic and 

historical information with prospective parents and estimate the risks of their having a defective child. They attempt to help parents understand the probabilities and the alternatives facing them. Amniocentesis is of special value to the counselor and the parents. For most high-risk parents the examination can provide confirmation that the fetus is normal. Without such confirmation, parents might undergo a termination of pregnancy for fear of having a retarded child when in truth the child would be normal. Others discovering through amniocentesis that their child will be defective may elect to have and keep the baby or they may begin considering alternative plans after birth, such as placement for adoption. Still others may elect to terminate the pregnancy. They may decide to have other children, with a good chance of their being normal. Funding for genetic counseling is provided by government programs including family planning programs and CHAMPUS, the medical services program for Army families, by Health Maintenance Organizations and by some medical insurance plans. As of March, 1974, there were 274 centers across the United States providing genetic counseling. As of August, 1974, four Blue Shield (medical insurance) plans covered genetic counseling: California, Richmond, Virginia, Washington, D.C., and Florida. See references 31, 45, 84 

Some MR—Related Conditio

by Amniocentesi

Tay-Sachs disease Maple Sugar Urine disease Glycogen Storage disease Gangliosidosis Hurler's syndrome Sanfilippo syndrome Lesch-Nyhan syndrome Galactosemia 
It was discovered in 1934 (Foiling). Its major signs 

are mental retardation (severe or moderate), fair hair and skin (in Caucasians), eczema, hyper-activity, and "musty" body odor. 

Its means of genetic tra

each parent carries o

Its control and elimination: from 1965 to 1967, 44 parents will be unaffected and each chstates enacted legislation making PKU screening of have one in four chances of having PKnewborn infants mandatory. PKU can reproduce and transmit the e

the pattern of a recessive gene disorder. 

 one PKU and

PKU 

Its identifi cation: in the early 1960's an inexpensive screening test for newborns was 

developed (Guthrie Test). Blood collected on filter paper is tested and reveals the existence of PKU. 

Its trea tment: in the mid-1950's initwith dietary treatment, PKU means bmetabolize phenylalanine, a necessary, namino acid (protein). Early removal from the diet of a PKU child helps prevent brain damage. 

What Are the Inborn Errors of Metabolism? Phenylketonuria (PKU) is the prototype of these genetically-based diseases. Its incidence is estimated as one in every 1Caucasian population. Its history is described in the figure above.In the eleven years from 1964 through 1974, Texas performed 1,433,386 tests in its PKU Screening Program, found 3confirmed PKU in 72 of these suspected cases. The total cost of the program during this period was $707,650. Despite some risks, dietary treatment of newborn infants with confirmed PKU has prevented brain damage which could resfar greater than the costs of screening. Screening may produce some "false positives," i.e., a child without the disease may show positive results on the test. Person

can be harmed by the rigid, carefully regulated diet, and some children develop poorly despite good dietary regimens. It is show long a child should be kept on his diet. In 1970, 69 percent of infants through the United States and Canada four days old and younger were screened for PKU. 

See references 29, 44, 5
How Is Tay-Sachs Disease Related to Mental 

Retardation? Is It Preventable? Tay-Sachs disease, another inborn error of metabolism, is the early infantile form of a class of diseases known as sphingolipoidoses. This means that the body cannot assimilate certain fats. The disorder was identified in 1881, when it was called "early amaurotic idiocy." Tay-Sachs disease can be avoided if, after genetic studies, there is prevention of pregnancy or termination of pregnancy where the fetus is found defective. For a child born with Tay-Sachs the disease is universally fatal, usually by the third year of life. The genetic transmission of Tay-Sachs disease follows the same pattern as PKU. The only time Tay-Sachs is transmitted is when two carriers have children. The possible genetic makeup of their children is shown by the following diagram. 

 Adult carriers of Tay-Sachs gene

through a blood test for a (Hexosaminidase-A). 

 Tay-Sachs occurs almost exclusiv

East-European, Jewish backgroundcouple in 900 is at risk of having a T

 Tay-Sachs can be detected in the fe

amniocentesis. 

 If each parent has one Tay-Sachs a

chances of their child's having the four. 

A voluntary screening program in and Baltimore, reported in 1974, dpossibility of reaching thousanscreen them for this defect. 

Results of Voluntary Screenin

for Tay-Sachs 

Population Findings Subjects Tested 6,938 Carriers Identified 315 "At Risk Couples" Identified 11

Adapted from: Kaback, M., et al. "

Control and Prevention of Tay-SProgress in Medical Genetics. Ediand A.G. Steinberg. New York: G1974. The cost for screening averaged a litperson. See references 44, 62 
How Is the Rh Factor Related to Mental 

Retardation? Hemolytic disease, destruction of the red blood cells, was 

first noted in the newborn in 1609. Now, over 350 years later, scientists refer to it as erythroblastosis fetalis. Among its signs and symptoms are dropsy (hydrops), jaundice (icterus) and anemia. Kernicterus, a severe form 

of erythroblastosis marked by brain damage due to yellow jaundice, leads to death in early infancy or results in mild to severe mental retardation, seizures, spastic or involuntary muscle movements and deafness. About 75 percent of infants with kernicterus die in the neonatal period. In 1940 a cause of this disease was found with the discovery of the Rh factor which causes some mothers to form antibodies and destroy the red blood cells of their later children. The antibodies are transferred to the fetuses in the mother's subsequent pregnancies via the placenta. The hemolytic disease occurs in the fetal and early neonatal period. A number of remedies for erythroblastosis have been tried:  heavy doses of oxygen during and after labor,  early induction of labor,  injections of Rh Hapten, a substance hoped to prevent 

antibody formation, 

 partial or complete transfusions of blood to the 

newborn baby, and 

 in recent years partial or complete transfusions of 

blood before birth. 

In most cases the complete transfusion

in treating erythroblastosis. Finally, it was found that Rh gamma 

for the mother were most effective sito prevent erythroblastosis in this minjection of the mother after birth prevents initial sensitization and th

dangerous antibodies. The timing ocritical; it is possible to miss imm

mothers, and unrecognized abortionformation of antibodies. See references 4, 18, 35, 124 
How Is Rh Facto r-Related Men tal R etardation 

Prevented? About 85 percent of the population is Rh positive (Rh+). This genetic factor is dominant. If an Rh+ male and an Rh negative (Rh-) female conceive a child (and this is the only time that the Rh factor creates problems), there is either a 50 percent or 100 percent chance that the child will be Rh+, depending on the genetic constitution of the father. The antibodies formed against this factor may cause death or severe brain damage to the children of later pregnancies. The injection of Rh gamma globulin prevents this possiblity. 

Injection of Mother with Rh Gamma Globulin within 72 Hours of Birth of First Rh+ Child, and Each Subsequent Rh+ Child 

=

It is estimated that in 1970, befinjection was available, 20,000 infaffected by diseases stemming from thIn 1973, it has been estimated that 8at risk were protected after delivery. protection was much lower in cases the risks to future children remain the 

See refere
How Is Rubella Related to Mental Reta

Although rubella (German measles), a vknown since 1815, it was not until 194effects of maternal infection during the nancy were described by Norman Gophthalmologist. He found varied and unpredictablcongenital rubella. Children of affectestillborn, or born alive with multiple defhand, be unaffected. In the first nine whowever, risk of damage to the deestimated at over 50 percent. Frequently occurring signs in childrcongenital rubella are: 

 microcephaly and/or mental retardat congenital heart disease  low birth weight  deafness or hearing impairment  cataracts  glaucoma  enlarged liver and/or spleen  "blueberry muffin" rash When present, the severity of mental retfrom mild to profound. See references 26, 44, 118 
How Is Rubella-Related Mental Percent of Population Protected Against Rubell

Retardation Prevented? Infe ct

 H istory of History of and/o

Since 1969, when the rubella vaccine Age Group Infection Vaccine Vaccine 

1-4 12.8 55.6 6

was licensed, it has been possible 5-9 25.1 64.9 7practically to eradicate the effects of this disease. It has been estimated that during the last major epidemic of rubella in 1964, 20,000 to 30,000 infants were born with multiple defects of congenital rubella, many of them mentally retarded. However, during 1970, a nonepidemic year in Los Angeles County, California, the incidence of congenital rubella was one in 10,000 live births. Since only a portion of those affected suffered neonatal death or handicap, this record indicates that rubella as a cause of mental retardation can be kept very low. The national Center for Disease Control of the Public Health Service has recommended that in order to prevent another major epidemic, all children under the age of puberty should be immunized, or have a history of the infection which creates its own immunity. 

Adapted from: U.S. Department of Health, Education, and WelfaSurvey, 1973. Atlanta, Georgia: Public Health Service, Center for Women of child-bearing age are not at the most suitable age for vvaccine may cause harm if they are pregnant at the time. To the level of vaccination of children would need to increase in nation against another major rubella epidemic. Three major outbreported in Colorado during 1973. 

See re
How Are Prematurity and Low Birth Weight Related to Mental 

Retardation? Prematurity and low birth weight are by far the most important obstetrical problems in the etiology of mental retardation and are regarded as serious threats to a favorable prognosis for the child. A study in Denver of low birth weight and premature children, reported in 1972, demonstrates the increasing risk of handicaps with decreased gestation time and/or decreased birth weight. 

Incidence of Moderate to Severe 

Handicap in Relation to Gestational Age 

Gestational No. No. with 

Age (Weeks) Examined Handicap % 

28 33 21 64 

29-31 35 19 54 

32-34 23 7 30 

Total 91 

Incidence of Moderate to Severe 

Handicap in Relation to Birth Weight 

Birth Weight 

(Gm.) 

No. 

Examined 

No. with 

Handicap % 

950 13 11 85 

950-1,150 20 14 70 

1,150-1,350 32 13 41 

1,350-1,500 26 9 35 

Total 91 

Adapted from: Lubchenco, L.O., Delivoria-Papadapolous, M., and SearIs, D. "Long-term Follow-Up of Premature Infants, II." 

The Journal of Pediatrics, 80 (March, 1972). 

Studies of premature and low birth weight chsevere handicapping conditions increases sharis reduced or when birth weight is much less pounds, eight ounces). The children studifferent handicapping conditions. Cerebrretardation were frequently found. The factors below help determine "high risk" m

Sex of Infant 

(Girls Weigh 

Less than 

Boys) 

Parity 

(Number of 

Previous 

Children) 

Smoking 

Low SocioEconomic 

Status 

Factors 

Associated 

with Low 

Birth 

Illegitimacy 

Maternal 

Age 

Prematurity: Gestation time of less than 37 weLow Birth Weight: Weight at birth equal to or See references 71, 102 
How Does Maternal Nutrition Affect 

the Occurrence of Mental Retardation? There is only informed opinion on this subject at this time, but no conclusive information. For example, the following statements were presented in testimony to the Select Committee on Nutrition and Human Needs of the United States Senate in 1973: "An association exists between maternal nutritional status prior to pregnancy and birth weight in poor populations." "The larger the number of smaller infants, the greater the chance of mental retardation." "Feeding a better diet during pregnancy increases maternal weight gain, birth weight, and, therefore, should decrease mortality and the incidence of retardation." 

Nutritional Status of Women Ages 18-44 for Iron and Calcium (

Non-striped=White Striped=Non-white Adapted from: U.S. Public Health Service. First Health and Nutrition Examination Su1972: Dietary Intake and Biochemical Findings. Washington, D.C.: Health Resources Iron deficiency is a problem for many women of child bearing age. 

while not as prevalent, still occur in more than half of all women, a

non-whites, regardless of income level. The United States Department of Agriculture operates a Supplemental the pilot stage, and a special Women, Infants, and Children (WIC) Pplementing the diets of poor families. Of the 4.6 million women aneligible for assistance from these programs, less than half a million are 

See references 105, 117, 126. 
Infant Mortality, by Race, in the 

United States per 1,000 Live Births 

Year Total White All Other 

1950 29.2 26.8 44.5 

1960 26.0 22.9 43.2 1970 20.0 17.8 30.9 1973* 17.6 15.2 28.8 

* 1973 infant mortality figures are based on a 10 percent sample. 

Adapted from: World Health Organization. World Health Statistics Report. Vol. 27, nos. 3-4. Washington, D.C.: World Health Organization, n.d. 

Infant Mortality in Some Other Countries, 1972 

Some other countries have Country Rate 

significantly lower rates. Finland 11.3 

Iceland 

11.6 

Sweden 

10.8 

Netherlands 

11.7 

What Do Infant Mortality Rates Tell UOccurrence of Mental Retardation? Infant mortality is an indicator 

reproductive health and the number be expected to have congenital anomathe table below, the nation has reducing infant mortality rates, but whites is still almost double that for the United States is substantially abovcountries. Maternity and Infant Care Projecand Child Health Service have helpmortality rates: in Baltimore, from 3(1972); in Denver, from 28.1 (1965) Augusta, Georgia, from 38.8 (1964These rates were achieved through care to expectant mothers at high risk. There are urban and rural areaStates today where 30 percent onever see a physician until delivery. In Oregon, in 1973, the death rate 53.4 for those born outside hospitals

delivered in hospitals. See references 118, 12 
Does Malnutrition in Children 

Cause Mental Retardation? While there is no clear cut proof that malnutrition by itself causes mental retardation, the available evidence, from areas with severe malnutrition, provides strong indication that this may be the case. Malnutrition is thought by many to be just as much a problem for children as it is for their mothers. Although the recently conducted Health and Nutrition Examination Survey has not completed its analysis, preliminary findings show that among children aged one through five, the intake of four major nutrients is very low. Nutrition levels are not always consistently related to either race or poverty 

Low Nutrient Intake in Children, by Race, Age

Percent of Persons Below Stan

Nutrient

Below Poverty Level 

White

 Black

Above Pove

White

 Black 

Calcium 14.42 35.26 12.14 

Iron Vitamin A Vitamin C 

94.46 

51.51 58.23 

93.61 

46.07 48.54 

94.88 

36.91 42.82 

Adapted from: U.S. Public Health Service. First Health and NutritiSurvey, United States, 1971-1972: Dietary Intake and Biochemical D.C.: Health Resources Administration, 1974. Intake of less than 1,000 calories in the previous 24-hour period wblack than white children in that age group. Evidence also indicates that poor nutrition in youth adversely affe

performance. See references 105, 117, 126 
What Is the Relation Between Lead Poi

Retardation? Young children often put inediblmouths. In older residences where remains on walls, children eating flin danger of suffering irreversible bThere is growing evidence that leathought to be a problem mainly in ura danger to middle class children as w In a survey of 14 Illinois communit

in six children ages one through sieconomic levels, had elevated blFifty-one of the 6,100 children stcases of lead poisoning. 

 A recent report from Boston show

neighborhoods which receive thlead pipes, there are noticeable quathe drinking water supply. 

There is conclusive proof that lead pmajor health hazard in urban areas.  During a four month screening 

about 50 percent of newly screWashington, D.C.'s lead poisprogram, based at Children's Hoslead levels in the abnormal range

See reference 118 
What Is Meant by Socio-Cultural Mental Retardation? 

Observations that mild mental retardation occurs more frequently among poor and disadvantaged families led to study of cultural factors. It has been suggested that circumstances of poverty, lack of developmental stimulation, and differing cultural values combine to produce this form of mild retardation, characterized by recurrence in families and no physical or medical signs. An unidentified polygenic hereditary factor is not ruled out. See references 30, 50, 51, 53, 54 
Special 

Stimulation Programs 

Vocational Information Counseling 

What Can Be Done to Prevent Socio-Cultural Mental Retardation? In the Milwaukee Project, begun in 1967, Rick Heber and his associates began by identifying, mothers of new-born infants, those who were "mentally retarded" (those having an IQ under 

worked intensively with these parents and their newborn children in hopes of preventing deterioration, relying heavily on methods of social stimulation. By 1974, results clearly exceeded expectations. The project reports that the childr

experimental group are functioning significantly above their age norms. Children in the cowhose parents have not participated in the program, have begun to show signs of mental retarda

Remedial Academic Education Occupational Training 

RetardedMothers 

 Inc reased 

Stimulation 

Children 

Fuat NoLe

See references 53, 54 

Children 

at Risk 
Experimental, Control and Contrast Group IQ Scores 

from the Milwaukee Project 

130-120-110-

Mean 

100-

IQ 

90-

Score 

80-70-

I I I I I I I I I I I I I I I I I I I 24 2730 33 3639 4245 48 60 72 84 96 108 120 132 144 156 168 

Chronological Age (mos.) 

Thick solid line=Experimental Dashed line=Control Thin solid line=Contrast (Baseline Evidence) 

Adapted from: "MR 71: Entering the Era of Human Ecology." Washington, D.C.: President's Committee on MentaAll children initially had the same I.Q. level. The above chart reflects the findings after 24 months experimental group is the group of children involved in the program. Control group children hdeclining intelligence scores, a result which follows the traditional pattern in the Milwaukee area 

is represented by the contrast line, which shows deteriorating IQ scores among school-age childSee references 53, 54, 131. 
WHAT ARE ADEQUATE, HUMANE SERV
Introduction 

One of the goals of the President's Committee on Mental Retardation is adequate, humane service systems.  Services are activities designed to meet 

human needs. 

 Systems are arrangements of policies, 

resources, and processes by which services are provided to consumers in a systematic fashion. The systems concept includes not only the detailed procedures for providing services, but also the complex network of interrelationships among private and public resources that make service delivery possible. Further, it includes a definition of the measures that will be used to evaluate services and provision for maintaining standards of quality. 

 Adequate refers to the extent to which 

service systems: o Substantially fulfill the needs of individuals who seek help from them. o Provide for the aggregate of human needs expressed by consumers and service providers in the community. 

 Humane service systems embrace the 

following qualities as expressed by the President's Committee: o Respect for the dignity of the 

individual. 

o Freedom of choice among 

adequate services. 

o Assurance of the individual's right 

to have and keep personal belongings. 

o Encouragement of the individual to 

be active, rather than inactive or passive. 

o Support for every individual's need 

to belong to (be interdependent with) someone else. 

o Help to the individual so that he 

may feel his life has meaning and purpose. 

Information on adequate, humane service systems can be presented in many ways. For the purposes of this publication, it is classified according to the diagram on this page. The diagram suggests that as a handicapped person moves from dependence to independence, he moves through a hierarchy of needs—physical, social, educational, economic, residential —and within each need area, from a more to a less dependent status. The requirement of care (represented by the area to the left of the dotted line) implies dependence and is most manifest in the need area of residence as the diagram indicates. Dependence This hierarchy refers to needs felt by all people and, thus, reflects services that can be provided around those needs. Every person, at some time in his or her life, requires assistance in meeting these needs. 

The steps in the certain needs must bwill be able to acquimove upward in the independence in liviData on the pages what is now known services to meet educational, econoneeds of persons retarded. 

Needs o

RESID

—a 

ECONO

—provis

re

SOCIAL-E

EXPE

—be

—activity an

PHYS

—general health 

—a

—person

Adapted from: Santam"Defining the Problem oFunctional Model." PapeAAMD Meeting, 1969. 
What Is the General State of Information 

In a discussion of services, one fact iis a serious dearth of valid and rethrough which to present an accurate of services for mentally retarded peoplSome problems with available informaconfusion over the definition of Some agencies still use the old AAMthe new one, and still others do retardation at all. For the most pcomparability. In many instances, persons served according to disability (e.g., mental rpalsy), and available data are merely on varying opinions. This brings validity of the information. For exammentally retarded persons in programs can only be estimated. A reliability of information. Do diffeagency, using the same criteria, information? Subjective factors often Perhaps most critical among these pthat current statistics are rarely avairegional, or even statewide basis. In many agencies are still analyzing 1971 or before, if they keep informaup to date information is a problem. 
Concern with services for mentally 

retarded persons centers on two elements: those services that all people, including retarded people, require (generic services) and those special services designed to meet the special needs of individuals who are mentally retarded and have related handicapping conditions. Not all mentally retarded persons require special services. On the other hand, "normal" persons often cannot get by with "normal" services alone. An individual's ability to meet his or her needs is dependent on many factors. Among them are age, socioeconomic status, geographic location, ability to get to needed services, and ability to enunciate one's needs, or have this done by a qualified spokesman. Taking these and other factors into account, it is possible to plot the relative dependence or independence of a particular person in meeting a particular need. 

Independence 

Dependence 

 S ocial Residence Ac

NEEDS 

For example, take the situation of a child who is menta

special education classes in public school, and spends moat home watching television. He is in a relatively "normahas the opportunity to participate in an age-appropriate (aactivity by going to school, but is not having (friendships, etc.) met adequately. His greatest need fappear to be in the social area. Such needs profiles can bneeds such as health, income, family relations, employme
The theory of normalization, developed in Scandinavia, 

is a cluster of ideas, methods, and experiences for providing the mentally retarded person with a pattern of life as close as possible to that which would be expected if the person did not have a handicap. A related idea is mainstreaming, which means the integration of handicapped and non-handicapped persons in the same service structures whenever possible. Both normalization and mainstreaming principles have been vigorously championed or attacked. Research on success or failure in their application is limited. Nevertheless, there appears to be a definite trend toward integration of handicapped persons with others, especially in public schools. Both ideas center on the provision of special assistance in the least restrictive setting, in the least stigmatizing manner possible. Both aim for maximum independence of the individual. See references 9, 133 
What Serv ices Are R equired to Meet th e H ealth Needs of 

Mentally Retarded Individuals? Health services are of major importance for persons who are retarded because many of them also have other handicapping conditions. Health care is provided through the following types of program or funding:  Public mental retardation or mental health agencies— 

such as residential institutions, community mental health centers, and day care centers 

 Medicaid—Federally assisted State programs for 

financing health care of public assistance recipients and certain others 

 Medicare—Federal Social Security medical care 

programs for persons 65 years of age and older or their children permanently handicapped prior to age 22 

 Head Start—Federally supported pre-school educational, 

health, nutrition, and parent education program 

 Follow Through—early school follow-up of Head Start 

children 

 Public Schools—health services for 

with special needs 

 Maternal and Child Health Service C

supported local "well-baby" clinics 

 Crippled Children's Services—Federa

operated clinics for children and yrange of physical and mental impa

 Maternal and Infant Care 

financed pre-natal care, deliveryservices for women in high-risk grouand uneducated 

 Children and Youth Projects—

comprehensive health care for chihigh risk groups 

 Developmental and Evaluation 

financed special projects for evaluation of mentally retarded person

 Private practitioners—such as p

psychologists, social workers, nursphysical therapists 
The health strategy with the most i

benefits is the prevention of mental rediscussed in the previous section. One of the most important finstitutionalization of mentally retaaccompaniment of additional physhandicaps. The need for long-terthese conditions has not generally outpatient facilities, and communnot equipped for long-term patientsis denial of remedial, corrective mservices because of the belief that persons do not benefit. No national data are available on thservices, extent of coverage or the medical services in public and facilities for mentally retarded persoare responsible for health care to the group of mentally retarded citizens. Tbeen shown to be seriously comprsufficient adequately trained perconditions, disease of epidemic propoexperimentation on residents in many residence in some institutions has bhazard. See references 40, 118 
Federally Supported Health Services for Mothers and Children 

through the Maternal and Child Health and Crippled Children's Programs 

Authorization Social Security Act Title V Program 

Funding Level Fiscal Year 1973 Special Focus Known Gaps 

Section 501 Formula Grants to States to 

Improve Health Services for Mothers, Children 

$60,778,000 Children in Rural Areas 15 States Had No 

Physician Services Under Pro

gram 

Section 501 State Crippled Children's 

Services 

$64,900,000 All Crippling Conditions in 

Children 

 

Section 508 Maternity and Infant Care 

Projects 

$42,940,000 High Risk Pregnancies Located Only in Major 

Medical Centers 

Section 508 Intensive Care of Infants $753,000 Infants at High Risk Located Only in Major 

Medical Centers, Low Funding Level 

Section 509 Comprehensive Health Care 

of Pre-school and School Age Children 

$43,151,000 Low-Income Populations Only 1 of 6 

Eligible Children Served 

Section 510 Dental Health for Children $1,180,000 Rural and Urban Low-Income 

Areas 

Only 18 Projects Operating 

Section 511 Training of Health 

Manpower 

$15,882,000 Manpower for Developmental 

Disabilities (University Affiliated Facilities)

 

Section 512 Research in Comprehensive 

Health Care 

$ 6,035,000 Use of Different Levels of 

Health Personnel 

N.A. 

Total: All Programs $235,619,000 

N.A.: Not Available Among highlights of these programs, 156 mental retardation clinics (child development clinics) weor in part under the Crippled Children's and Maternal and Child Health Programs. In 1972, 316,407 chThe major service provided, which was diagnosis and evaluation of suspected mental retardation, rconfirmed "diagnosis" in about 70 percent of new patients, but removed the label of retardation fall children seen. The most prevalent health problem among children is dental disease. There are no exact data availa

the problem or the availability of dental services for mentally retarded children and adults. See references 108, 118 
Home-health services and public health Percent of Persons Under 65 Years Old with Health 

and Age, 1970 nursing services are two significant health 

measures which, in enabling families to deal 90with special medical or management 80problems, can minimize the need for 70 residential care outside of their homes. More States are moving to the "purchase of 

Persent Covered 6050 service" concept, which enables mental 40 retardation, developmental disabilities, 30

public health, or public welfare agencies to 20provide these specialized services in lieu of care in large state institutions for retarded persons. Since insurance guarantees the financial means for securing service, one indication of the adequacy of health services is the extent of insurance coverage in the population. It was shown earlier that mental retardation is most prevalent among low income and minority groups. These same groups have a record of the lowest health insurance coverage. 

0 

10 

Under 17 17-24 25-44 45

Age Group 

Caucasian All Other 

Of children under 17 with family incomes undless than one in four was covered by health insuranSee reference 118 
What Services Provide Mentally Retarded Persons with Social Relationships? 

Opportunities for social relationships are provided by the following types of services:  Pre-school and public school—general socialization.  Group residences—generally for adults who are moving 

toward more independent living. 

 Membership in youth activity groups—The Boy and Girl 

Scouts of America have special troops for mentally retarded individuals. Handicapped persons have joined the YMCA and YWCA with full membership privileges. 

 Membership in churches and church schools—Some are 

making an outreach effort to locate retarded persons in their congregations. Some provide special church school classes. 

 Federally sponsored Volunteer Programs—A number of 

Federally sponsored programs encourage volunteers to work with the mentally retarded. The most notable is Foster Grandparents (FGP) which enables senior citizens to work on a one-to-one basis with approximately 15,000 mentally retarded children. Other significant programs include: 

Retired Senior Volunteer Persons (RSVP) Volunteers in Service to America (VISTA) University Year for ACTION (UYA) Program for Local Service (PLS) 

 Special social clubs for the mentally retarded—They exist or are 

being formed now in many communities. 

 Public and private recreation agencies, including the Federal 

Parks system—Some provide special pcitizens. 

 Attendance at summer camps—Some 

physically designed to accommodate Other camps specifically for retarded chbeen established. 

 Youth NARC (a branch of the Nati

Retarded Citizens)—40,000 teenagers befriend retarded persons their age througprograms. 

 Places of employment—Jobs bring many 

contact with others. 

 Citizen advocacy programs—volunteer p

socialization as well as representation persons. 

Although some programs for socialization oavailable, there are many gaps. There are trphysical barriers which often prevent access A further problem, as shown by the followimany existing agencies do not yet accept restheir services available to a handicapped pop

See references 3, 19, 8
Three kinds of generic agencies 

were surveyed in 1970 to see if they served mentally retarded persons. The results, although from too small an area to present a generalized pattern, indicated that "mainstream" services are significantly limited for retarded persons. 

Do you serve mentally retarded What problems wo

persons? mentally re

Don’t No Manage- R

Agencies Yes No Know Response None ment 

Guidance and Counseling 

Clinics 44% 53% 3% 0% 100% 0% Religious 38% 47% 6% 9% 48% 0% 

Programs Social or Recreational Agencies 22% 63% 11% 4% 93% 7% (Problems were primary ones; since some others were mentioned, percentato 100%) Adapted from: Scheerenberger, R.C. "Generic Services for the MTheir Families." Mental Retardation, 8 (December, 1970). At the Institute for the Study of Mental RetardaDisabilities at the University of Michigan, the staff for has been working intensively to orient staffs of generic public officials (county commissioners, law enforcemthroughout the State), to the special needs of the developOne important component of the program is the In

churches and religious groups to develop outreach programcitizens and their families participate in religious servicesSee reference 95 
Human Sexuality and the Mentally Retarded Person 

Mentally retarded persons, especially of mild degree, have normal (not exaggerated) sex needs. The traditional social policy has been to deny normal expression of these needs by segregation or sterilization. Currently there is a tendency toward increasing normalization of contact between the sexes, but sterilization remains highly controversial. Sterilization means any procedure or operation intended to make a person incapable of reproducing. The right to sterilize or to refuse sterilization has become an issue in the courts. On January 29, 1974 the Secretary of the Department of Health, Education, and Welfare approved regulations governing sterilization of persons in programs regulated by the Department. These regulations introduced a requirement of "informed consent" of the person to be sterilized which, in general, requires that he or she voluntarily and knowingly consent to the sterilization after having been given a fair explanation of the procedure, a description of its discomforts and risks, a description of its expected benefits, an explanation of alternative methods of family planning, assurance of answers to questions and assurance of the person's freedom to change his or her mind at any time prior to the sterilization. 

A nation-wide attitudinal survey omarriage and sterilization for the merecently been conducted with par

members of the National AssociaCitizens. Some of the findings are thes

 The majority (60 percent) of both 

parents felt that mentally retarded pshould be allowed to marry. 

 As their child's age increased, pa

progressively: (1) more resistant marriage for their child, (2) more that their child would not be capabher own child, and (3) more in favotheir child should he or she eventual

 Thirty-three percent of all responde

concept of legislation making sterilithe most retarded individuals. Apercent approved of mandatory stewho are severely and moderately r86 percent of all respondents favdetermination as to whether appropriate. 

The ability to develop and sustain a relationship may be possible, whiretarded individuals to function as present. See references 32, 41, 70 
What Services Provide Mentally Retarde

Programs of Daily Activity? Activities take the form of: 

 Education—attending regular or 

public schools, private schools, HeStart programs, preschool and adeducation programs, special develovocational training programs, and 

 Vocational Training and Employ

sheltered employment, on-the-joemployment in competitive indust

 Recreation—physical recreation, 

participation in arts and crafts, specand neighborhood and community a

Services also include access to transportation, escorts, outreach hfollowing give some of the known activities. 
What Are Some Trends in Education for Mentally Retarded Persons? 

Illustrated in the following chart is a current concept of providing educational services in the least specialized or restrictive 

The "least restrictive alternative" may be applied not only to residential services but to all forms of service. 

Cascade System of Special Education Services 

Level 1 The prevention of handicapping behavior* Level 2 Exceptional children in regular classes, 

with or without supportive services 

Level 3 Regular class attendance plus 

Supplementary instructional services 

Level 4 Part-time special class Level 5 Full-time Special class Level 6 Special stations**  ——Homebound—— Level 8 Instruction in 

hospital, residential, or total care settings 

Assignment of pupils tosettings governedprimarily by the school system Assignment of individuals to the settings governed primarily byhealth, correctional, welfare, or other agencies 

What Pre-School Provided for MenEarly intervention some handicaps anIn the area of eduinfant stimulation cation. The 1972 amendmportunity Act requchildren enrolled handicapped. In itOffice of Child Dsurpassed this goaapproximately 287Year Programs" handicapped as of DBy Head Start eshandicapped pre-scmentally retarded, children served. Day training progchildren serve pre-

*This means the development of positive cognitive, affective, and psychomotor skills in all pupils that States responding will reduce or prevent the frequency of handicapping behavior. There is a wide v**Special schools in public school systems. kinds of programs 

gramming, and nu

Adapted from: Deno, E. Cited in Maynard Reynolds, "Two Policy Statements Approved by CEC Delegate Assembly." Exceptional Children, September, 1973. actual number of p

these programs is nSee references 33, 

52 
What Public School Educational Programs

Are Pro vided fo r Men tally Retard ed Children and Youth? The Bureau of Education for the Handicapped (BEH) estimates that in school year 1971-1972, 723,747 "educable" (able to learn academic subjects) and 148,466 "trainable" (able to learn self-care) mentally retarded students were served by the nation's public schools and public education agencies. Although the "educable" and "trainable" classifications are considered bymany professionals as no longer acceptable terminology, information is still reported in thismanner. BEH also estimates that there were 3.7 million handicapped children ages 0-21 not served by public educational agencies. Of thisnumber, an unspecified number may be assumed to be mentally retarded children andyouth. A survey by the National Association of Retarded Citizens shows enrollment of mentally retarded students in the public schools hasincreased from 711,467 in the 1970-71 school year to 826,177 in the 1972-73 year. As a 

percentage of the total school enrollment, mentally retarded students increased from 1.43 percent in 1970-71 to 1.87 percent in 1972-73. Among 49 States reporting, a decline in enrollment occurred in 10 states, while an increase was seen in 39 states. Although this reportshows a significant increase, the nation is still substantially far from achieving the Commissioner of Education's goal of free public education for every child by 1980. For less severely impaired retarded children,one trend in special education is toward "mainstreaming" and away from separated special classes. Research in special education has neverconclusively demonstrated that separate classes for educable mentally retarded students are superior to inclusion in regular classes withspecial assistance. Conversely, the mainstreaming trend is so recent that there is as yetno completed research by which it can be judged effective. Day training services, mentioned earlier, havebeen a traditional resource for children and 

young adults excluded frecently completed survof 46 States responding 

 One State had six cen One State had 163 ce

clients. 

The wide variation can comparison. Other variations were rmaking it difficult to coAlthough much statisticschool programs is acqthe Bureau of Educationo data have been acagency on the numbeadult educational progeducation programs. While the courts have of the right to educatiothere are many gaps beof the right and the actu

A Comparison of Day Training Programs in Two 

Enrollees per 100,000 Pop. 

Rank Among 

States 

Expenditu

_State_

West Virginia 

 Number 

5.5 

Re

porting 

35 

Amount 

$3,333.33 

Wisconsin 270.7 1 $137.50 

Adapted from: National Association of Coordinators of State Programs for the Mentally Retarded, "Day Training Retarded Children: A State by State Survey," Arlington, Virginia: National Association of Coordinators of StMentally Retarded, Inc., May, 1974. 

See references 9
What Vocational Training and 

Employment Services Are Provided Mentally Retarded Persons? Federal-State Vocational Rehabilitation services, available to the physically handicapped since 1920, were authorized for mentally retarded persons in 1943. Only since the 1960's 

have an appreciable percentage of Vocational Rehabilitation clients who were "rehabilitated" 

represented mentally retarded persons. "Rehabilitation," as used here, means placement in a job for sixty days or longer at the end of training. In 1972, it was estimated that 36,043 mentally retarded persons were rehabilitated, in this meaning of the term, representing 11.6 percent of the total number of clients rehabilitated. 

 In 1971 it was estimated that 52,520 

mentally retarded persons were served by the Vocational Rehabilitation program.  32,980 were mildly retarded,  14,600 moderately retarded, and  4,940 severely retarded. 

 Of this total, 29,744 persons were rehabilitated (56.6 percent). 

This was a lower percentage of success than in 

previous years. One possible reason given for the lower success record was the emphasis placed on service to the severely handicapped in 1971. Program growth since that time is not known. The Grossman-AAMD definition of the 

condition of mental retardation affects eligibility for Vocational Rehabilitation services. Prior to 1973, the old AAMD definition was used. Abolishing "borderline retardation," makes many persons ineligible for rehabilitation services who formerly would have been eligible. Because of this problem, AAMD's Grossman Task Force has been reappointed and will soon issue a supplement to the 1973 Manual on Terminology and Classification in Mental Retardation, discussing the need of formerly "borderline retarded" persons to be eligible for services. 

Sheltered Workshops Special workshops which offer market-based employment opportunities for the handicapped 

in protected work stations provide a large proportion of the rehabilitation training for mentally retarded individuals. Generally, employees in workshops perform piece-work under contract with local industries. There is no current, comprehensive information on sheltered workshops serving mentally retarded individuals. Of workshops in general there were 1,029 identified in a 1968 national survey, and approximately 2,500 in another national survey undertaken in 1973. Of the nearly 2,000 workshops which provided data for this 1973 survey, the proportion which were serving mentally retarded persons has not yet been determined. In 1973, Suazo, in a survey of workshops serving the mentally retarded, found that most of the 110 workshops responding to the survey 

needed immediate hespecially in placing cfinancial support to thoproduce at a high enouemployment, and provworkshop staff. 

Activity Centers While sheltered wormildly and moderately ity centers serve morindividuals who are nowork. Training in baspersonal adjustment, tgrams are provided wviduals will become leIn 1971, a survey sponCommittee on Mental activity centers througon the survey, it wapersons, ranging in agbeing served. Although the programmethods of operationmentioned goals were Work preparation —  Social development 

See references 67, 92, 9
What Is the Employment Potential of Mentally Retarded 

Persons? Various surveys estimate the number of employed mentally retarded citizens in a given community. Conley summarizes these studies and estimates that at any given time, 90 percent of mildly retarded persons will be self-supporting and that "about two-thirds will maintain that status continuously." Publicity campaigns over the last decade have tried to demonstrate that "employing the mentally retarded is good business." Retarded citizens themselves have established that, given proper training, they can perform well in competitive employment. 

 Through a special examination waiver of the Federal 

Civil Service Commission, more than 7,000 mentally 

retarded persons have been employed since 1966. Most 

succeeded (over half are still working) and the reason for failure was, in most cases, not inability to do the work, but personal adjustment problems. 

 An on-the-job training program, funded by the Federal 

government and administered by the National Association for Retarded Citizens, has placed retarded men and women in private industry. Reports in 1973 show 1,360 persons trained. Funding increases in 1974 raised the projected number to be served to 2,254. 

 Major corporations, such as the W.T. Grant Company, 

have employed large numbers of mentally retarded workers—and would like to employ more. 

A list of jobs that mentally retarded pperformed successfully includes: Animal Caretaker Key Punch Operator Carpenter Medical Technician Dishwasher Office Machine Operator Food Service Worker Radio Repair Telephone Operator Vehicle Maintenance Photocopy Operator Ward Attendant (sometimes in the same 

where he or she once lived) 

The employment potential of mentaldepends on government, industry, and willingness to provide the training jobs necessary to take advantage otalents. In general, persons identified as mildlyears tend to disappear into the adult pevidence also that continued "retarded" can be a barrier to employSee references 23, 80, 81, 104 
What Physical Education and Recreation Activities Are 

Provided Mentally Retarded Persons? 

Leisure time accounts for one-third of an adult's day and more of a child's. Yet, traditionally most attention has been given to a retarded individual's deficiencies in work or education-related areas. Recreation takes place throughout an individual's life. Although for many years there have been recreation activities in institutions and the community for mentally retarded individuals, there is almost no information available on the extent of these programs for retarded persons at any age level. A two-year training project at the University of Bridgeport (Connecticut) for physical education students centered on the special recreation needs of mentally retarded persons. Other such programs are becoming more common around the nation. An evaluation of accomplishments of the retarded persons in the project concluded with the following statement: "The most important development observed was the self-confidence they had in themselves and in what they could accomplish through physical activity; they demonstrated this new self-assurance at home with their families and later at the workshop." A well-known recreation program for mentally retarded youth is the Special Olympics sponsored by The Joseph P. Kennedy Jr. Foundation. Operating in every State and every province in Canada, in Puerto Rico and in France, the Special Olympics had more than 250,000 participants in 1972. In addition to providing healthy exercise and fun for many children, the Special Olympics emphasizes the abilities, not the deficiencies, of mentally retarded youngsters. 

This program has shown that children with intellectual deficits can and do compete in physically demanding sports, and that many mentally retarded persons can and do surpass the physical accomplishments of their intellectually average and superior counterparts. 

A later program sponsored by The JosFoundation is "Families Play to Grow," pattern adaptable to various circumstanretarded individual a progressive opporecreation, achievement and recognitionoperation, 1974-1975, the program served whom 5,000 qualified for awards of acessentially a family approach, the program residential care facilities, schools, rehabirecreation departments. Character-building organizations with programs for young people including tBoys Clubs of America, Camp Fire Girls, Scouts, either through local units or on a n

recreation services for handicapped youthretarded persons. The Boy Scouts of Amnational programming for mentally retardeyears, including a waiver of the usual age By 1973 it had 2,500 Scout units for retardSpecial camps for retarded persons have are operated on various patterns of fundsome by public residential facilities thassociations for retarded citizens and organizations such as the Junior Cha(Jaycees). The American National Red Cross suprogram for the handicapped. In 1973 theoffering swimming programs for milretarded persons, with two of them aretarded children. See references 63, 68. 73, 125 
A Survey of Recreation for the Handicapped 

No comprehensive study specifically concerned with recreation services for mentally retarded individuals has been identified. The following information is from a 1970 nationwide study of 616 agencies such as commercial establishments, libraries, museums, public recreation agencies, fraternal and service organizations, community and youth service agencies, 4-H Clubs, and public, parochial, and private day schools concerning their services to handicapped citizens in general, including mentally retarded persons.  No recreation services for handicapped children and youth 

were reported by 74 agencies. Of these, one-half of the commercial establishments and over one-third of the churches, libraries, and museums reported they had never been asked to provide such services. 

 Over half of the churches, libraries, and museums believed 

there were no handicapped children or youth in their service area. 

Types of problems agencies thought they might have in starting service programs:  Over half felt an additional or specially-trained staff would 

be necessary. 

 Over a third were concerned about physical and mental 

limitations of handicapped children. 

Of the 542 agencies providing some recreation services, 457 

had increased their services from 1965 to 1970: 

 to serve additional disabilities  to involve larger numbers of handicapped children  to increase variety of activities Reduced services had occurred in 11 percent of the 542 

agencies since 1965 because of: 

 lack of trained staff  insufficient funds  poor attendance  lack of parental interest 

Recreation activities provided by all repor

 82 percent had parties, socials, and spec 72 percent had active games and physic nearly two-thirds provided arts and craf 61 percent offered team sports  about one-half offered individual sports

swimming 

Education levels of full-time personnel in agencies:  19 percent had graduate degrees  64 percent had bachelor degrees  9 percent had some college  8 percent had high school diplomas or l

See references 57, 89 
What Services Provide Mentally Retarded Persons with a 

Source of Income? Income support may be provided through the following types of services: Continuing support from:  Supplemental Security Income, Federal and State financial 

assistance on the basis of need for persons who are permanently and totally disabled, blind or aged. 

 Public Welfare, general assistance available in some States, 

and the Federal Aid to Families with Dependent Children program which exists in all States, granted on the basis of need. 

 Social Security and Railroad Retirement, Federal retirement 

income guarantee programs based on contributions by employees and employers, covering retired and disabled persons and survivors of the beneficiary. 

 Veterans benefits  Food Stamps, School Lunch and School Breakfast Programs 

of the United States Department of Agriculture, for recipients of public assistance and other low income persons. 

 Medical Assistance (Medicaid), Federal/State payment for 

residents of hospitals, skilled nursing facilities (SNF) and intermediate care facilities (ICF and ICF-MR) 

 Medicare, Social Security program to pay costs of hospital 

and nursing home care for Social Security beneficiaries. 

 Federal black lung disease benefits, wh

survivors of the disease. 

 Public mental retardation or menta

institutions, where total care is provide

 Public mental retardation programs in  Guardianship management of the retar

income and resources. 

Interim support, or the provision of sp

provided from the foregoing, as well as th

 Private voluntary agencies which p

specific benefits for which the retareligible. 

 Vocational Rehabilitation Service age

State supported, which may provide during vocational training. 

 Emergency assistance grants provided 

agencies in such forms as allotments housing, and cash for other living expen

Some information is available regardinpersons who receive continuing suppprograms administered by the Federal agencies. Almost no information is mentally retarded persons who receive they qualify for assistance under a contin
Two Major National Studies of Income 

Maintenance Programs for Mentally Retarded Persons Took Place in 1967 and 1970. 

Aid to Families with Dependent Children (AFDC) for 

Children Judged to have Mental Retardation, 1967 

Professional Opinion Opinion of Others

 Total Not Not 

Recipients M.R. M.R. M.R. M.R. Unknown 

Number 3,922,719 89,472 646,555 64,044 2,548,639 574,009 

Percent 100.0 2.3 16.5 1.6 65.0 14.6 

Professional judgments were made by those competent to diagnose mental retardation. The combined 3.9 percent estimate of recipients judged to be mentally retarded children is probably quite low. Almost 15 percent of the children had no opinion expressed about them, and the reluctance on the part of family members or others probably contributed to "nondiagnosis." This public assistance program has been operating since 1935. There are no minimum payment levels for the States, and payments vary widely in amount from State to State. 

Aid to the Permanently and Totally Dis

Recipients with Mental Retardatio

Secondary Disabling Con

M.R. 

All 

Recipients 

Primary 

Condition 

Number 865,894 138,16

Percent 100.0 16.

Until January 1, 1974, this State aprovided for the disabled, blind, and ageabove chart are based on a minimum sam

the caseload in each state or 500 perhigher. Guam and Arizona did not particnot have an APTD program. See references 109, 110 
What Is the Supplemental Security Income Program 

(SSI)? As of January 1, 1974, income maintenance programs for the aged, blind, and permanently and totally disabled are combined under a new Supplemental Security Income Program. For the first time, the Federal government guarantees a minimum income to persons who have insufficient resources or income. The program is administered by the Federal Social Security Administration. The base in February 1975 is $146 per month for each eligible individual, with certain exceptions. In addition, 38 states and the District of Columbia supplement payments. The amount of an individual's SSI check is affected by earned or unearned income. States may ask the Federal government to administer any supplements to the Federal payment they may make or States may make this payment directly to individuals. An important feature of SSI is that children who are "permanently and totally disabled" (a category that includes some mentally retarded children) may be eligible for income maintenance payments under certain circumstances, depending on their family finances. By November, 1974, there were approximately 65,000 children receiving SSI. 

The change over from State to Fedcaused problems in reaching all pepayments. Information on the numbare mentally retarded and receiving 

not currently available. In October, 1974, 1,581,663 persdisabled received federally admin(including Federal payments and Sta$230,383,000. As services are provided to meet the ndiscussed: physical, so cial, educa tionais possible for the individual to move tin the place where he or she lives. See references 14, 16, 46 
Where Do Mentally Retarded Persons Live? Who Cares for 

Them? All children cannot live with their families nor can all adults find their own living arrangements. Residential services are needed for many mentally retarded persons at some time in their lives, and for some, throughout their lives. Residential services are the fulcrum aroundwhich many other services for retarded persons are balanced. This isespecially true of personal care and management for the more severely handicapped. Residential facilities are usually classified into two types: institutions and community care. The traditional residential facility was institutional in nature; that is, marked by isolation from the community, large congregations of disabled residents, and the type of daily regimen that characterizes hospitals and prisons. Institutions are being modified to accommodate to the new philosophies of normalization and maximum self-development. Institutions are becoming smaller,and tending to use cottage-type housing and care, are attempting to approximate a home-like environment, and are encouragingdevelopment of the resident and his or her access to adjacent community services and opportunities. Community care facilities have been created not only to achieve thebenefits of normalization and continuing development for the resident but also to achieve fiscal economies. The economies may actually represent shifts in fiscal responsibility; for example, transfer offunding as a total State responsibility (public institution) to a shared 

State-Federal-Local responsibility (group home in the community). 

The goal of deinstitutionalization is to replace the unnatural patterns of living in traditional settings with the values of normalization,maximum self development, and community living. What are Some Community Residential Services? Prevailing philosophy holds that residential services follow a developmental model—providing attention to specific problems and needs of individual residents until they can be corrected or met. Thereafter, the individual progresses to an improved level ofindependent functioning. This viewpoint has spurred emergence of a growing array of residential alternatives to institutional care, eachgeared to specific needs of specific individuals. Among them are: 

 Group homes, hostels, boarding homes, and half-way houses for 

adults. Although called by these different names, these facilities are generally defined as any community-based residential facility 

which operates 24 hours a day to provide sof mentally retarded or otherwise developmwho are presently or potentially capable community with some degree of independe

 Foster care—for children and increasing

dependent and cannot live, for whatever 

families. 

 Natural home—living with one's parents a

living alone or living with one's own family

 Long-term sheltered living including 

environment for adults incapable of indepnormalization principles. 

 Respite care—very short-term residenc

individuals, both children and adults, to families a "vacation" from one another ancrisis. 

 Vocationally oriented residential services—

adapt to the world of work. 

It is emphasized that much of the above terminto appear in the literature. Definitions are oftecommunity facilities and programs are used, as to meaning. Institutions An institution is ". . .a public or private providing a constellation of professional servic

dential basis including those directed towahabilitation, and rehabilitation of the mentally traditionally separated from the general populaThere are three major categories of facilities swhich are classified as institutions: public fa

tarded persons, public facilities for the mentretarded persons among their resident po(proprietary and non-profit) residential facilitieindividuals. See references 50, 83, 85, 86 
Recent Trends in Public Institutions for 

Mentally Retarded Persons 

1963 1967 1971 

All Admissions 15,151 15,714 15,370 Net Releases 8,156 11,665 17,079 Deaths in Institutions 3,498 3,635 3,183 Resident Patients at End of Year 176,516 193,188 181,009 

Personnel (full time) at End of 69,494 94,900 118,909 

Year Maintenance Expenditures $353,574,833 $576,620,954 $1,002,557,588 

*Per Resident Patient 

Per Year 1,984.00 2,965.33 5,537.05 Per Day 5.44 8.12 15.17 

†Per Patient under Treatment 

Per Year 1,879.43 2,774.10 4,982.25 Per Day 5.14 7.60 13.65 

*Based on average daily population 

†Based on census at beginning of year 

Adapted from: U.S. Department of Health, Education, and Welfare. "Mental Retardation Source Book of the Department of Health, Education, and Welfare." Washington, D.C.: Office of Mental Retardation Coordination, 1973 (Mimeographed). 

In recent years, personto public institutions hbeen more severely rephysical disabilities formation on age information on sex gethere has been an increof male new admissionTo Wh at E xtent a rPersons Placed in PuMentally Ill? In 1971, there were 29as mentally retarded in 81 percent of them weInformation on the numlevel of retardation is admissions to State m71.5 percent were mitarded. For the same persons newly admittefacilities were mildly oWhat are S ome ChaWho are Residents in Mentally Retarded PeTwo States, Florida anlected detailed informainstitutions. Such infordesign individualized teach retarded person to of self-sufficiency and See references 40, 112 
The information from California 

clearly shows that from 1970 to 1974 over three-quarters of all residents remain retarded at the severe or 

Selected Findings of Annual Census of Characteri

of Residents in Public Institutions for Mentally Ret

Persons California, 1970 and 1974 

1970 

profound levels. Sex distribution continues to remain about the same. There has been a slight increase in percentage of residents who have no hearing or no vision. 

Census—Number Degree (Level) of Profound

Retardation, by Severe 

Percent Moderate 

Mild 

Borderline Normal Total 

Sex, by Male 

Percent Female 

Total 

Seizures, by None, no history 

Percent None, has history 

Less than 1/mo. More than 1/mo. Total 

Vision, by No usable vision 

Percent Limited vision 

Impairment suspected No difficulty Total 

Hearing, by No hearing

Percent Limited hearing 

Impairment suspected 

No difficulty Total 

Mobility/ Bed support/moved in crib Locomotion, Wheel chair, push 

by Percent Wheel chair, self 

Walks, led

Walks, not led 

Total 

Note: Totals exceed 100.00 percent due to rounding. 

11616 

46.05 

30.35 

15.39 

6.55 

1.59 

0.10 

100.03 

58.41 

41.60 

100.01 

60.35 16.13 

15.67 

7.86 

100.01 

5.52 

13.34 

---- 

81.15 

100.01 

2.71 

7.89 

---- 

89.42 

100.02 

11.17 

11.18 

6.21 

8.44 

63.03 

100.03 

See reference 15 
The study in Florida was the first

assessment ever undertaken of all 5,444 clients in its six Sunland Centers. Information on each resident was collected in June, 1974, using a Client AssessmentInstrument specially designed for this survey. Levels of independence were noted for many skills, including: ambulation, self-care, social, communications, housekeeping, education, and work. Findings on these and other variables were grouped to form the following two graphs. 

See reference 42 
What Are Some Characteristics of 

Residents of Public Institutions for Mentally Retarded Persons in the United States? The National Association of Superintendents of Public Residential Facilities for the Mentally Retarded has recently completed a nationwide survey of its own facilities. Information on this and the following page are from the results of that survey. The following table presents information from 177 public institutions in the United States as of July 1, 1974. This represents 75 percent of all public institutions. 

Distribution of Residents in Public 

Institutions 

for Mentally Retarded Persons, 

by Level of Disability, July 1, 1974 

Level of Disabilit

y Percent

Profound 41.2 Severe 30.0 Moderate 17.9 Mil

d 8.1 

(Borderline-Normal) 2.8 

Total 100.0 

The following table presents the results of 177 public institutions reporting on 27,276 residents classified according to the 1973 AAMD etiology. 

Distribution of Residents in Public 

Institutions 

for Mentally Retarded Persons, 

by Primary Cause of Disability, July 

1, 1974 

Primar

y Cause of Disability Percent 

Infections and Intoxications 14.3 Trauma or Ph

ysical A

gent 15.4 

Metabolism or Nutrition 2.8 Gross Brain Disease, Post-Natal 4.1 Unknown Pre-Natal Influence 30.6 Chromosomal Abnormality 10.8 Gestational Disorders 5.5 Followin

g Ps

ychiatric Disorder 1.6 

Environmental Influence 15.0 

Total 100.0 

Of the 105,442 residents reported to have mental retardation, 53,265 or 50.5 percent had at least one additional handicapping condition and 34 percent had more than one. For example, 671 persons were both blind and deaf, in addition to the major handicapping condition of mental retardation. The distribution of the primary additional handicap is as follows: 

Additional Handicap Number Percent 

Blindness 3,825 7.2 Deafness 

2,226 4.2 

Emotional Disturbance 8,020 15.1 

Cerebral Palsy or Other 19,448 36.5 

Neurolo

gical Handicap 

Epilepsy 19,746 37.0 

Total 53,265 100.0 

Another finding wnew admissions readmissions to during Fiscal Yeamildly or moderaand borderline perSee reference 94 

What Does the Term Deinstitutionalization Mean? 
What Does the Term Deinstitutionalization 

Mean? In 1971, the President of the United States adopted as a national goal the return to usefullives in the community of one third of the more than 200,000 mentally retarded persons who were living in public institutions. Most of these persons live in special institutions formental retardation. There are some who are cared for in State hospitals for the mentally ill. Deinstitutionalization requires reeducation and retraining of the residents of these facilities for them to be able to adapt to community living. How Mu ch Prog ress Ha s B een Mad e, toward Deinstitutionalization? The recently completed study of the National Association of Superintendents of Public Residential Facilities for the Mentally Retarded mentioned on the preceding page provides some answers to this question. Data for the survey were acquired from 207 residential facilities of 250 queried. Of the 207, 15 facilities were not in operation at the time of the survey. Information was collected as ofJuly 1, 1974. Some Findings:  Of 106 facilities in use during the nine-year

period, 1965 to 1974, the population declined from 151,873 to 127,696—15.9 percent. 

 Of 176 facilities in use during the four-year

period, 1970 to 1974, the population declined at an accelerating rate of 1.7 percent in the first year to 3.6 percent in the fourth year. A trend may be seen in the table. 

Population Changes in a Total of 176 Public Institu

for Mentally Retarded Persons, 1970 to 1974 

Fiscal Year 

Population at

End of Year 

Numerical Po

pulation 

Decline from 

Precedin

g Year 

1970 155,920 1971 153,343 

2,577 

1972 151,204

 2

,139 

1973 147,050 

3,154 

1974 141,972 5,078 

If the survey results are gegroup of public institutions, year decline of 14,000 resi1969 to 176,000 in 1974. Dupopulation has declined in ohas been offset by growth in Older facilities declined population from 1,146 in 11974, the median population in operation subsequent to 19There is no information avaof stay of a resident in a pubno information to show that ppublic institutions do not minstitutions such as State hopersons or private institutionsSee reference 94 
What Are Some Alternatives to Institutional Care? 

The words "private residential facility" are used to describe other types of residential settings outside of public institutions where mentally retarded persons reside, including private institutions. The most frequently used settings are group homes, nursing homes, and foster care or family care homes. While such residential settings are private, governments may purchase care in them for residents considered to be a public responsibility. There is limited national information on private residential facilities. Information is not currently available by type of facility, such as group home, nursing home, etc. 

Characteristics of Private Reside

1971, by Ownership 

Type of Facility Profit N

Number of Facilities 745 Acce

pt Both Sexes 435 

Acce

pt Onl

y Females 164 

Acce

pt Onl

y Males 146 

A

ges of Clients

Under 21 332 21+ 34 Other Restrictions 226 All A

ges 153 

Number of Residents 13,443 

Number of Facilities with Progr

Pro

gram Yes 

For Educable Children For Trainable Children For Profoundly Retarded

Children 

For Adults Vocational Rehabilitation Occu

pational Therapy 

Ph

ysical Therapy 

Other Programs 

Four facilities offered all programs; 336 facilities offeSee reference 112
A 1973 survey of group homes for 

developmentally disabled, the large majority of which served mentally retarded individuals, found 474 homes in operation. An additional 112 facilities were identified, but information was unavailable for the survey. Forty-six percent of those reporting were operating for less than two years, and more than 75 percent were formed since 1968. Of 7,753 residents reported, 60 percent were male and 40 percent female. The group homes varied widely in services provided. Over half relied on public residential facilities for one or more supportive services. 

A significant result of this survey was reporting of difficulties encountered by the administrators of the group homes. Such problems may affect future development of community alternatives. 

Most Serious Problem Areas in Establishing and Operating Group Home Facilities 

Total 

Number of 

Area of Concern 

Inadequate Funds Difficulty of Finding Qualified Staff Developing Individualized Client Programming Lack of Community Supportive Services Certification and/or Licensing Attitude of Community Toward Residents Staff Training and Development Reducing Parental Fears Difficulty of Maintaining the Staff Zoning RestrictionsMeeting Fire RegulationsMeeting Building Safety Standards Other 

Facilities 

294 174 135 113 

95 97 88 69 67 56 49 

29 

64 

Percent of 

Administrators Ranking 

the Variable 

62 37 29 24 20 20 19 15 14 12 10 

6 

14 

Family care or fostoldest forms of presidential servicretarded persons. number of persons and Indiana show tsignificant numbers 

State

Number 

 Re sidents Se

California Approxima

5,000 

Indiana 1,348 

A recent trend utilization of nurdevelopmentally dState of Califextensive use oAs of December, 1available for developersons in sepaseparate wings of intermediate Intermediate care provide as intensivcare. See references 19, 5
What Was Found in a 1974 Kansas Study of 

Facilities and Homes for the Developmentally Disabled? The Kansas Department of Social and Rehabilitation Services surveyed 330 facilities serving 1,900 developmentally disabled persons. 

Further confusion of definitions may be seen in the table below where distribution of facilities by types and related characteristics is shown. Several different categories apply 

to a number of the reporting facilities. 

Study of Kansas Homes Serving Developmentally Disab

The study found that there is no common definition of different types of residential facilities. Almost half of the respondents were unable to identify their category. The following definitions were used in the study.  Nursing home—a nursing facility providing 

both short- and long-term care for semiindependent residents over age 21

—(228 

respondents) 

 Foster home—a family type home providing 

either short- or long-term care, serving individuals ranging from dependent to almost independent, under age 21, and covering all resident needs—(74 respondents) 

 Children's facility—a group residential facility 

offering short-term transitional care for independent and semi-independent persons under age 21, and providing most resident needs—(14 respondents) 

 Boarding homes—a group living arrangement, 

providing both short- and long-term care for semi-independent persons over age 21, with the facility covering all resident needs—(14 respondents) 

See reference 96 

Number of Facilities 

Nursing Foster Children's 

Description Homes Homes Facilities 

Pattern of Care 

Famil

y type 24 72 6 

Group 13 0 6 Residential 17 1 5 Nursing 205 0 0 

Agency operated 3 2 3 

Duration of Care 

Temporary respite 3 5 0 

Short-term transitional 114 20 6 

Long-term indefinite 176 35 2 

Disability Level of Resident 

Almost inde

pendent 24 14 6 

Semi-inde

pendent 175 22 5 

Totally dependent 46 19 0 

Age of Residents 

Under 21 20 72 14 

Over 21 184 5 0 

Service to Residents 

Five-day week residence only 1 1 4 

Covers all resident needs 57 41 7 

Board, room & guidance only 9 5 4 
The study found ". . . that most facilities were unable to identify the mental levels of their developmentally disab

graph shows, over one-half of all persons identified were shown in the "Do Not Know" category of mental levels. 

See reference 96 
How Accessible Are Services for Persons 

Who Are Retarded? As recently as 1968, a report on employment, transportation, and the handicapped, prepared for the Social and Rehabilitation Service, made no mention of the special transportation needs of the mentally retarded. A 1973 planning document, prepared by the Urban Mass Transit Advisory Council, makes only passing references to mentally retarded persons in discussing travel barriers for handicapped persons. In addition to the high prevalence of physical disabilities among retarded citizens, the inability of many to read instructions makes them less able to use public transportation. 

In a survey among elderly and handicapped persons in Washington, D.C., the potential increase in trips for various purposes, if there were a barrier-free transit system, was given. 

Potential 

Trip Purpose % Increase 

Work/School 14% Shopping 82% Medical/Dental 50% Social/Recreational 111% Church 85% Combined Total 72% In August, 1973, the President's Committee on Employment of the Handicapped issued "A Survey of State Laws to Remove Barriers." Only one State, Kentucky, had no law requiring some action to remove physical barriers in housing, governmental buildings, walkways, etc. No information is available regarding the extent to which these laws have been implemented in all States. While there are continuing local efforts to employ such strategies, no information was found on the extent to which services are being offered to mentally retarded persons through outreach efforts, or provided by means of service "brokers," neighborhood service delivery points such as "store-front" centers, or special transportation arrangements. See reference 119 

What Manpow er Is NServices for Mentally Two recent publicatio

manpower, one held iother in Philadelphia markably similar recom

 There is a need to em

levels of professionawith mentally retardedisabled persons. 

 Training in the speci

persons must becomtraining in all fields. mentally retarded induse of generic servieveryone). 

Federal government effto work with mentadevelopmentally disab1963 with legislation aufiliated Facilities (UAdation Research Centerof both were appropriat1966, and 1967. In 1972, more than 52than 60 separate fields operating UAFs. The Bureau of Educati(BEN) reported there wthe mentally retarded 1972 school year, estimthe number needetraining of special See references 34, 12
reached an annual level of 6,000 new 

special education teachers a year in 1970. The National Institute of Child Health and Human Development (NICHD), Mental Retardation Branch, operates 12 Mental Retardation Research Centers. As a byproduct of research conducted by the Centers in the causes and prevention of mental retardation, manpower with scientific investigative skills is trained. 

What Is Accountability for Mental Retardation? Accountability means provision of evidence of: 

 the extent of the problem  the amount of effort expended to meet 

the problem 

 the maintenance of service quality to 

meet established standards 

 the actual meeting of individual needs  the extent to which the effort has had 

impact on the general problem, and has reduced it 

Accounting for the extent of the mental retardation problem and the effort made to deal with it is found in limited form in the management records of serving agencies —their case records, statistics, budgets and financial reports. Accounting for the excellence of service is based on licensing or voluntary standards, and periodic assessments by independent judges of how well those standards have been met. Accounting for effects of services on individuals and their problems, or for their impact on the community problem of mental retardation is called evaluation and is relatively rare and usually inconclusive. 

What Are Currently Mechanisms for ProThere are two typregulatory and volunmeans is through licmechanism is throu(2) PASS, a new protwo States, and (3) These processes are dLicensing Each State has legaof health, sanitationsafety, etc. In additioat least some of its pretarded persons to min terms of qualificatoffered, number of Licensing laws prostandards. Enforcement of licenLicensing is most otime of initial applicand is rarely subject tAccreditation In order to measure it is necessary to kprogram is equippe

achieve stated goalprogram evaluation attempt to do this. Othe Accreditation Cothe Mentally RetaCommission on Accr

72 The Council has eigh
American Academy of Pediatrics 

American Association on Mental Deficiency American Nurses' Association American Psychiatric Association American Psychological Association National Association for Retarded Citizens National Association of Private Residential Facilities for the 

Mentally Retarded 

United Cerebral Palsy Association Two sets of standards have been established, one for residential facilities and one for community agencies serving mentally retarded individuals. The accreditation program is voluntary. An agency applies for evaluation. Once evaluation is undertaken, a range of program components is evaluated. The Accreditation Council began its program in 1973 and identified the principle underlying its standards as normalization. Because of the recency of the program, no information is available on the extent of coverage or results. See reference 2 

Program Analysis of Service Systems (PA system first devised in Nebraska to eva

new community programs, Program Systems (PASS), has been expanded to 

existing services. A feature that makes other methods of evaluation is that it a

well as positive evaluations of each progtral to the system is the principle that serthe extent that they promote integrapersons into the mainstream of society. Scessful to the extent that they empl

normalization. At least two states, Nebra

currently use PASS as a formal evaluation Consumer Evaluation Increasing attention is being paid to coservices, either by retarded citizens the

advocates. One approach is a formal provider and consumer of the service. Wdiscussed the special education contracwould specify the obligations of all paobjectives to be achieved, criteria achievement, a timetable for evaluationrenegotiating the contract." See references 1, 122 
WHAT IS FULL CITIZENSHIP FOR MENTALLY RETA
The United Nations Declara tion on the Rights of Mentally 

Retarded Persons, 1971 

1 . The mentally retarded person has, to the maximum degree 

of feasibility, the same rights as other human beings. 

2. The mentally retarded person has a right to proper medical 

care and physical therapy and to such education, training, rehabilitation, and guidance as will enable him to develop his ability and maximum potential. 

3. The mentally retarded person has a right to economic 

security and to a decent standard of living. He has a right to perform productive work or to engage in any other meaningful occupation to the fullest extent of his capabilities. 

4. Whenever possible, the mentally retarded person should live 

with his own family or with foster parents and participate in different forms of community life. The family with which he lives should receive assistance. If care in an institution becomes necessary, it should be provided in surroundings and other circumstances as close as possible to those of normal life. 

5 . The mentally retarded person has a right to a qualified 

guardian when this is required to protect his personal wellbeing and interests. 

6. The mentally retarded person has a right to protection from 

exploitation, abuse and degrading treatment. If prosecuted for any offense, he shall have a right to due process of law with full recognition being given to his degree of mental responsibility. 

7. Whenever mentally retarded persons a

the severity of their handicap, to exercimeaningful way or it should become ndeny some or all of these rights, the prrestriction or denial of rights must safeguards against every form of abusebe based on an evaluation of the soc

mentally retarded person by qualified subject to periodic review and to the rigauthorities. 

See reference 48 
What Are the Issues in Full C itize

Retarded Persons? Fundamentally, the issue is whether a pecan live under all the implications of citizof his rights, acceptance on equal footinand the opportunity to exercise choaffecting his life and happiness. Rights can be classified as human rigpeople feel exist and should not be denlegal rights (those that have been enacted which precedent has been established by In a democratic society, human rights argeneral principles: positive presumptiodenied an individual without proof that sothis be done); due process (even when must be denied, it can only be done throuthereby safeguarding the person's chancdenied, regain his rights); and inst(society's obligation to provide for its assistance they might need to exercise theThe rights on the following page are tMentally retarded citizens are presumed rights as any other citizen. This section describes some specific deficstatus of mentally retarded persons, identthe improvement of their status and ebeing used to remove these barriers. See reference 21 
How Can Rights Be Classified? 

Although a good bit of overlapping is inevitable, one can group many of the components of full citizenship under the three fundamental principles mentioned on the previous page. 

Positive Presumption Due Process Instrumental 

 Right to education  Right not to be labeled for exclusionary  Right to treatment  Right to manage one's own affairs or discriminatory reasons  Right to a developm Right to life and survival  Right to legal access to the courts including:  Right to vote  To sue  Early interventio Right to worship  To contract  Family or family Right to develop one's sexual and social  Right to the least restrictive or drastic  Right to physical ac

identity alternative (in any setting)  Right to have an adv

 Right to marry  Right to reasonable  Right to procreate harm 

 Right to be paid for work  Right to dignity  Right to fail 

Adapted from: Cobb, H.V. "Citizen Advocacy and the Rights of the Handicapped." In Wolfensberger, W., and Zauha, H., eds. Citizen Services for the Impaired and Handicapped. Toronto. National Institute on Mental Retardation, 1973. It should be recognized that rights by their exercise may be in conflict. There may be conflict between rights of two persons, or among rights affecting the same person. As an example of the former, there may be conflicts between the rights of parents and of their retarded child. An example of the latter is the essential conflict between the right to reasonable protection from harm and the right to manage one's own affairs. This list of rights is neither exhaustive nor static. Developments occur so rapidly that today's realities may be replaced by new ones tomorrow. See reference 20 
How Has Litigation Affected the Citizenship of Mentally Retarded Persons? 

The following table shows that litigation on behalf of retarded persons is essentially a phenomenon of the 19

lawsuits have been brought in all sections of the country, approximately according to population. 1974 data wten months. It is likely that information for the full year would show more legal activity than in any previous yeaSee reference 129. 

A Profile of Lawsuits Establishing the Legal Rights of Mentally Retarded Citizens, As of Octobe

Type of Lawsuit Number Filed by Year Total Decision For 

or Against

Plaintiff 

P

D

1957 1968 1969 1970 1971 1972 1973 1974† For Against 

Ri

ght to Equal Educational Opportunity 0 0 1 3 1 11 20 15 51 29 0 

Right to Be Free From Inappropriate Educational Classification, Labeling and Placement 0 0 0 2 2 3 1 0 8 3 0 

Right to Community Services and the Right to Treatment in the Least Restrictive Environment 0 0 0 1 1 5 5 8 20 10 2 

Right to Be Free from Peonage and Involuntary Servitude 0 0 0 0 0 2 4 2 8 5 0 

Right to Be Free from Restrictive Zoning Ordinances 1 0 0 1 0 0 4 2 8 7 1 

Right of Free Access to Buildings and Trans

portation S

ystems 0 0 0 0 0 2 0 2 4 2 0 

Right to Be Free From Unconstitutional Commitment Practices 0 0 0 1 0 4 3 4 12 8 0 

Right to Procreate 0 0 0 0 1 1 3 4 9 4 1 

Right of Equal Access to Adequate Medical Services 0 0 0 1 0 0 0 1 2 2 0 

TOTAL 1 0 1 9 5 28 40 38 122 70 4 

*At the time table was drawn, only one appeal was pending in a community services decision. 

† Through 10/31/74 Adapted from: Legal Rights Work Group. Compendium of Law Suits 

Establishing the Legal Rights of Mentally Retarded Citizens. Washington, 

D.C.: President's Committee on Mental Retardation, October, 1974. 
What Is the Right to Education? 

A class action lawsuit is an appeal for reliefbrought on behalf of one or more named individuals and all persons in the same jurisdiction suffering the same abuses. It is a new tool for advocates of the mentally retarded, but has been used so dramatically and often that legal action has dominated the scene in the1970's. Although free public education is taken forgranted by most Americans, large numbers of mentally retarded children have been denied this right. Four major, or landmark, cases have begun to establish the requirement that public 

education be made available to all. Attorneys for the Pennsylvania Association for Retarded Children (PARC) argued that equalprotection under the law, guaranteed by theFourteenth Amendment to the Constitution, required that all children have equal access topublic education and that they also have theright to due process of law. They based many of their arguments on the Supreme Court's rulingin Brown v. Board of Education in 1954, that separate educational systems do not provide equal educational opportunity. 

1971: Pennsylvania Association for Retarded 

Children (PARC) et al. v. David H. Kurtzman, et al. 

1972: Mills, et al. v. Board of Education of the 

District of Columbia 

1974: In re G. H. (North Dakota) 1974: Colorado ARC v. State of Colorado 

"It is ordered . . .that the Commonwealth of 

Pennsylvania . . . provide as soon as possible, but in no event later than September 1, 1972, to every retarded person between the ages of sixand twenty-one years as of the date of this orderand thereafter, access to a free public program of education and training appropriate to his learning capacities." 

PARC v. Kurtzman 

May 5, 1972 

See references 1, 17, 48 

Some Traditional A

We cannot educate childtrained. We cannot handle childbulatory. We do not have enough classes for retarded childWe will excuse your chfurther from our programWe do not accept childrunder five. 

Some Expert Testim

Case 

Due process must be m

educational system. Every child can be educThe school is responsiblneeds of the child. IQ does not determine aEducation is vitally impdevelopment. 
Pennsylvania did not contest the arguments of the experts and 

finally signed a consent decree that resulted in the order presented on page 80. The Commonwealth agreed to search for every mentally retarded child in Pennsylvania and offer each a public education. In order to make its decree effective, the court appointed two "masters" or experts in mental retardation, one with a background in education and the other with a legal background, to oversee administration of the program and report on progress. Pennsylvania also set up a Right to Education off ice to handle special problems and, especially, to conduct due process hearings. Pennsylvania's Right to Education office estimates that between May, 1972, and June, 1973, 10,000 children were placed for the first time in public schools. Of these, 2,551 were severely or profoundly retarded and 200 new classes for severely handicapped children were started. New children are still being identified and enrolled in schools as this is being written. The Mills decision came shortly after the PARC consent decree and significantly expanded the concept of "zero reject." PARC had been concerned only with mentally retarded children and Mills sought public education for all mentally or physically handicapped children. The defendants in PARC did not contest the decision of the court; in Mills they did. In Mills, Judge Waddy held that not only did all handicapped persons have a right to equal access to an educational opportunity in public schools but that they also had a right to a 

due process hearing before being placed outside the normal classroom setting. Judge Waddy ordered the Washington, D.C. School Board, on Constitutional grounds, to include all children in their educational planning and develop immediately "due process" procedures so that parents of children could 

question decisions about their school money was not considered a valid excusare not available to finance all of the sthat are needed in the system, then the avexpended equitably in such a manner thexcluded from a publicly supported educhis needs and ability to benefit therefrom.In re G. 

H. is the only decision on equal 

from a State supreme court. In ColoradFederal court held that a State's responsib

the passage of a mandatory special educaprovision of education to all. See references 17, 48, 75 
What Is the Right to Treatment? 

Documentation on inhuman, non-stimulating, and dangerous conditions in many public institutions for mentally retarded persons can now be found in hundreds of volumes. Following are highlights from some of the most significant lawsuits on behalf of institutional residents. Wyatt v. Aderholt (formerly Wyatt v. Stickney) Alabama, 1972 Burnham v. Department of Public Health (Georgia), 1972 New York State Association for Retarded Children, et al. v. 

Nelson Rockefeller, 1972 

Patricia Parisi, et al. v. Nelson Rockerfeller, 1972 Welsch v. Likins, Minnesota, 1973 Horacek v. Exon, Nebraska, 1973 On November 8, 1974, the United States Court of Appeals, Fifth Circuit, affirmed the decision of the Federal District Court that there is a Constitutional right to treatment on behalf of persons confined in mental hospitals and State schools. The court was hearing two cases: Wyatt v. Aderholt and Burnham v. Georgia. In the former the principle had been upheld; in the latter, it had been denied. The Burnham case was remanded for trial in Georgia, but the State of Georgia is asking the United States Supreme Court to hear it on appeal. 

By its decision in Wyatt, the court affirmthat have thus far been issued in Wyatt Burnham. The following are the orders an

 Minimum standards of safety at Partl Minimum staffing ratios for professio

professional personnel 

 Prohibition of unpaid resident labor  Individualized treatment plans, period Standards for sterilization (fo

"voluntarily" sterilized at Partlow durtrial) 

 Limits on behavior modification and 

drugs 

 Prohibition of human experimentatio Release to the community with prope

of persons capable of such a move 

 Treatment of all persons in "the least 

habilitation setting" 

The Wyatt case has served as the basis fosince been filed against institutions arounIn the Wyatt and other cases, the United Justice played an active role, acting as a (amicus curiae) in some suits and starting cases of alleged violation of the rights persons, (e.g., United States v. Soloinvolving Rosewood Center in Maryland)See reference 75, 130. 
What Is the Right to Freedom from Harm? 

The two New York cases (New York State ARC and Parisi) both centered on Willowbrook State School, which was, at the time action was brought, the nation's largest residential facility for mentally retarded persons, housing more than 5,000 persons. As in the Wyatt decision, minimal standards of care were set down for Willowbrook. Central to the argument of the plaintiffs was the need to use the least drastic alternative method of treatment. To that end, seclusion in isolated rooms and the arbitrary and unsupervised use of physical (straitjackets) or chemical (drugs) restraints was prohibited. Judgment was still withheld on the right to treatment (although the Fifth Circuit decision in Wyatt might have, some effect). The case is still in litigation. In their testimony, defendants agreed to reduce Willowbrook's population by transferring residents to smaller facilities. As of December, 1974, the population was below 3,000, but many transferred residents had been moved to other institutions operated by New York State. In Welsch the court expanded the Wyatt holding by finding that the State has an affirmative duty to develop and provide appropriate community services. In Horacek Judge Urbom declared that interests of parents and children may be inconsistent, and that parental commitment of their children to institutions may violate the children's right to treatment in the least restrictive setting and could not be called a voluntary commitment. In at least one case in Florida involving a person confined to a hospital for the mentally ill, a jury verdict (upheld on appeal) has awarded damages to a person who did not receive "adequate habilitation and treatment." The case, Donaldson v. O'Connor (1972, appealed in 1974) may serve as precedent for individuals seeking personal freedom after years of confinement without an adequate developme

January 15, 1975, the Donaldson case wUnited States Supreme Court. It is the firight to treatment to have reached the natiSee references 76, 114 

 
What Is the Right to Payment for Work? 

It has been estimated that in 1970 the value of unpaid resident labor in facilities for mentally retarded persons and by mentally retarded residents of public mental institutions was 1.25 million dollars. This labor was often essential to the operation of these facilities, including housekeeping, laundry, repair work and even care of other residents. A series of rulings have found this to be unconstitutional under the Twelfth Amendment to the Constitution, which prohibits involuntary servitude (peonage). 1973: Souder, et al. v. Brennan, et al. 

Washington, D.C. 

1973: Brennan v. Iowa 1974: Jortburg v. U.S. Department of Labor, 

Maine 

Prohibition of resident labor without compensation has posed a dilemma. Many States have 

stopped using resident help, but this has deprived these individuals of what, to them, was their most meaningful activity. In many cases institutions have failed to provide individualized treatment programs with vocational training to replace resident labor. One of the principal arguments that remains unanswered is why anyone capable of working in an institution 

cannot be gainfully employed, at least in a sheltered setting. At least two states, New York and New Jersey, have employed significant numbers of former residents at institutions, while providing transitional living arrangements elsewhere. This has not always been the case. Many persons have 

been made idle by these rulings and have not always moved into the comHow Does Legislation Affect the Rights of Mentally Retarded PersoAnother strategy in protecting the rights of retarded persons is legislation

Right to Education Lack of uniformity in legal requirements for education is apparent from tSee references 23, 76 

State Statutory Responsibilities for the Education of Retar

Date of Com

p

State Typ e of Mandation Passage DaAlabama Full Plannin

g and Pro

gramming 1971 

Alaska Full Program 1974 Arizona Selective Planning and 1973 Arkansas Full Planning and Programming 1973 California Selective Colorado Full Plannin

g and Pro

gramming 1973 

Connecticut Full Planning and Programming 1966 Delaware Full Pro

gram "Wherever Possible" 

District of 

No Statute 

Columbia Court Order: Full Program 1972 Florida Full Program 

Geor

gia Full Plannin

g and Pro

gramming 1968 

Hawaii Full Program 1949 Idaho Full Program 1972 Illinois Full Program 1965 Indiana Full Planning and Programming 1969 Iowa Full Program 1974 

"If Reasonabl

y Possible" 

Kansas Full Plannin

g and Pro

gramming 1974 

Kentucky Planning and Programming Petition 1970 (Trainable Mentally Retarded Only) 1962 Louisiana Court Order — Orleans Parish only:1973 Selective for Mentall

y Retarded. 

Otherwise, Permissive 

Maine Full Plannin

g and Pro

gramming 1973 

Maryland Full Planning and Programming 1973 Massachusetts Full Planning and Programming 1972 Michigan Full Planning and Programming 1971 Minnesota Full Program Mississippi Permissive 

1977 

9/1/76 1979-80 

7/1/75 

1972 1973 

1975-7

7/1/69 1973 

1979 

1974 1973 

1975 

1979 9/1/74 1973-74 7/2/72 
Missouri Full Planning and Programming 1973 5-21 

Montana Full Program 1974 7/1/79 6-21 

Nebraska Full Planning and Programming 1973 10/1/76 5-18 

Nevada Full Program 1973 5-18 New Hampshire Full Program Birth-21 

New Jersey Full Program 1954 5-20 New Mexico Full Planning and Programming 1972 1976-77 6-21 

New York Court Order: Full Program 1973 1973 5-21 

(N.Y.C. only) Conditional: 10 or more children who can be grouped homogeneously in same class. 

North Carolina Full Planning 1974 Birth—Adulthood 

North Dakota Full Planning and Programming 1973 7/1/80 6-21 

Ohio Selective, by Petition (18 or From age 5 

more crippled or Educable Mentally Retarded Children in district) 1972 1973 6-18 

Oklahoma Full Program 1971 9/1/70 4-21 

Oregon Full Program 1973 EMR: 6-21 

Others: Birth-21 

Pennsylvania Court Order: Selective 1971-72 9/72 6-21 

(Mentally Retarded Only) Full Planning and Programming 1956 1956 6-21 

Rhode Island Full Program 1964 3-21 

South Carolina Full Planning and Programming 1972 1977 6-21 

South Dakota Full Program 1972 Birth-21 

Tennessee Full Planning and Programming 1972 1974-75 4-21 

Texas Full Program 1969 1976-77 3-21 Utah Full Program 1969 5-18 

Vermont Full Program 1972 Birth-21 

Virginia Full Program 1972 2-21 

Washington Full Program 1971 6-21 West Virginia Full Program 1974 1974 5-23 Wisconsin Full Planning and Programming 1973 8/74 3-21 Wyoming Full Program 1969 6-21 

There are many mandates that carry conditions that effectively eliminate some students from education. The 

those required by law or court order and they do not guarantee that requirements have been met. More and more

the concept of comprehensive programs for all handicapped children (Texas and Massachusetts are examcategorical labels, e.g., educable mentally retarded, cerebral palsy, etc. These are the first examples of statutory "

See reference 27 
What Effect Does Legislation Have in Other Areas? 

One can point to many pieces of legislation that have been enacted, but for which enforcement programs are largely undeveloped. The Right to Be Trained, to Be Employed, and to Be Paid  Fair Labor Standards Act, 1966, Public Law 89-601. 

Following the decision in Souder v. Brennan, 1973, the United States Department of Labor has issued regulations on the application of this act to persons in institutions for the mentally retarded. 

 Rehabilitation Act of 1973, Public Law 93-112. This requires 

that severely disabled persons be given preference in rehabilitation and requires "affirmative action" in hiring handicapped workers by certain employers. 

Right to Physical Access 

 Public Law 90-480. All new Federal construction must be 

accessible to handicapped persons. 

 Public Law 93-383, Community Development Act of 1974. 

This makes provision for removal of architectural barriers in public housing. 

Right to Be Free from Discrimination  The Civil Rights Act of 1964, Public Law 88-352, and related 

Executive Orders of the President prohibit discrimination because of race, religion, age, or sex. In addition, the 1973 Rehabilitation Act prohibits discrimination because of mental or physical handicaps. 
How Do Q uestions o f Competen cy 

Affect the Citiz enship of Mentally Retarded Persons? Civil Law The discussion until now has been of rights. An equally important component of citizenship is responsibility. The table below shows the wide variation in State regulation of some different activities of retarded persons. A problem that has not yet been resolved is that of partial competence, or competence for one task and incompetence for another. The judgment that a retarded individual could not marry, for example, has often been generalized to exclude him or her from other responsible activities. 

States Regulating Right to Contract, Drive, Vote, Marry 

Involuntary Sterilization for Mentally Retarded 

Kind of Regulation 

Regulate Right to Get Drivers License (As of 1970) 

Regulate Right to Vote (As of 1974) 

Regulate Right to Marry (As of 1972) 

Reto (A

Prohibition 22 5 12 

Allow for Adjudication of Incompetence 12 20 0* 

Authorized by Law 

Blank boxes: not applicable 

*No information on 16 States **(In at least one State, Alabama, the law has been changed dudecision in the Wyatt case.) 

Some of this informout of date, but the from uniform acrosRegulations differ and application or States. See references 12, 6
Criminal Law 

In a study of Georgia's criminal justice system, it was found that while only five percent of the estimated 140,000 mentally retarded citizens in the State ever come in contact with law enforcement authorities, 28 percent of the adult inmates of Georgia's penal institutions were mentally retarded. In a nationwide survey of penal institutions in 1963 it was found that 9.5 percent of 90,000 tested prisoners were mentally retarded. (There were sharp differences among regions. The percentages for a group of Southern states was 24.3; for the Mountain States it was 2.6.) The classification of mental retardation here is based on an IQ below 70. Studies have shown that retarded persons are not necessarily more likely to commit crimes, but if they do, they are more likely to be arrested. Legal authorities are divided over how much responsibility must be attached to the antisocial or criminal behavior of retarded persons. Questions center on the degree to which mental retardation interferes with the ability to act responsibly. There are three major rules of criminal responsibility in use by the courts:  M'Naghten Rule: A person is not criminally responsible if 

he is unable to distinguish between right and wrong. 

 Durham or Product Rule: The accused is not responsible 

for a criminal act if such act was the product of a mental disease or mental defect. 

 Diminished Responsibility, the Ame

Model Penal Code: A person is not reif, at the time, he cannot appreciate itform his actions to the requirement"mental disease or defect" do not incmanifested only by repeated criminasocial conduct. The terms . . . shall intraumatic mental conditions as well as 

Mitigating circumstances are often helppunishment for "naive offenders," but incedged judgment. It has resulted in commwhich could mean for life. In the 1972 Indiana, the United States Supreme Courcommitment of a criminal defendant incompetency to stand trial (in this retardation) violates the Constitutional rigordered Indiana either to release Jaccommitment proceedings (to an institutionSee references 7, 12, 13, 76 
How Can F ull Citizenship of Retarded Persons be Assur ed 

Other Than Through Law? Two mechanisms are paramount in providing mentally retarded and handicapped persons with what we referred to above as "instrumental protection." One is public: protective services; the other is voluntary: citizen advocacy. Protective services are undertaken as a public responsibility, 

usually by a governmental agency, whereby handicapped or other disadvantaged persons receive protective help both on their behalf and that of the general community. 

Citizen advocacy is a program of vomature, competent citizens who represenhandicapped person entirely on his ostanding the expectations of the general cProtective services were begun by socidisadvantaged children from abuse 

underlying principle is parens patriae—th

sense, protective services became the vwho could not defend themselves. They 100 years and, in addition to traditiopractices, include adoption, foster car

Key Elements of Protective Services 

 Professionalism  Legal authorization necessary  Assignment of "cases"  Legal action authorized to protect 

client interests 

 Potential conflict of interests 

between citizen and public agency 

 Concentration on instrumental needs 

of client 

Common to Both Key Elements of Citizen A

 Out-reach (seeking persons in need • Voluntarism 

of assistance)  Legal authorization unnec

 Matching of advocate and  Legal action possible, dep

resources of citizen advoc

 Public education  Freedom from conflict of  Concentration on needs 

expressive need for frienfidant 
Citizen advocacy for mentally retarded persons was started in 

response to what were felt to be deficiencies in protective services, most notably the potential conflict of interest. It was felt that persons receiving a salary from a governmental agency could not use all their efforts to provide services to their clients. At some point, their interests (keeping their job) would conflict with those of their client (receiving services). Another dimension of citizen advocacy, one for which the need has been documented, is that the expressive needs of the handicapped person (the need for friendship or someone to talk to) are given equal weight with his instrumental needs 

(those economic or legal functions necessary to his welfare, that the individual might need assistance in performing). Protective services exist in all States, but special provisions for handicapped persons are missing in many of them. For example, guardianship laws, relating to the intervention of an interested person (relative or designated friend) to administer the property and/or protect the well-being of a child or person in need of assistance, have special provisions for handicapped (including retarded) persons in only nine states. Of these nine, only four (California, Minnesota, New Jersey, and Ohio) have a protective service system accompanying the law. The first citizen advocacy project for mentally retarded persons began in 1970 in Lincoln, Nebraska. Between that time and mid-1973, 46 offices were functioning in the United States and Canada. Other cities have expressed interest in acquiring the necessary resources and attracting enough persons to serve as citizen advocates. 

Citizen advocacy programs have not been evaluated in terms 

of impact. This represents a gap in knowledge. See references 97, 122 
How Do Attitudes Affect the Rights of Mentally Retarded 

Persons? It is widely believed that attitudes toward mentally retarded persons determine the way in which they are treated. Because of this, many attitudinal studies have been undertaken. Attitudes have been studied with regard to different activities (school, work, marriage, institutionalization) and among different groups (peers, teachers, parents, men, women). Different theories have been tested, e.g., that experience with mentally retarded persons improves attitudes toward them, or that children in special classes are seen more positively than children in regular classes, or vice versa. The results of attitude studies are generally inconclusive and leave a major gap in current knowledge. Most of them do show an unwillingness to allow mentally retarded persons the same freedoms expected for other citizens. And it has been pointed out that two important things have usually been ignored: 

 Most attitude surveys have asked people to respond to 

stereotypes of retarded people. By describing subjects as "eternal children," or "unable to develop past a mental age of nine," researchers may have been predetermining the kind of response they received, thereby reducing the validity of findings. 

 Evidence is mixed on whether expressed attitudes determine people's behavior. There have been some studies which showed that people harbored negative attitudes toward mentally retarded persons, but in their dealings with individuals who were mentally retarded they acted positively. The President's Committee on Mental Retardation recently sponsored a nationwide poll, conducted by the Gallup Organization, to investigate how Americans accept the presence of mildly and moderately retarded people in normal 

residential and work environments. Some of the results are these: 

 Only five percent of respondents wou

alongside a properly trained, mildly or person. 

 Only nine percent would object to hamildly or moderately retarded persons wfor community life occupying a home on  Fourteen percent think there is reason tretarded people. The poll presents results of what people believe. Their statements may not alwaysubsequent actions. See references 43, 49, 91 
What Do Mentally Retarded Persons Have to Say? 

In 1970 in Malmo, Sweden, a group of fifty mentally retarded young adults met to discuss their needs and whether they were met or unmet. Here are some of their ideas, as reported by a group leader. On Leisure Time  We want to be together in small groups during our leisure 

time. 

 There should be more possibilities for sports and exercises.  We want to have leisure time together with other youngsters 

of the same ages. 

 We have all agreed that we want more power of participation 

in decision-making, especially in planning and implementation of leisure time activities. 

On Living Conditions  We wish to have an apartment of our own and not be coddled 

by personnel; therefore, we want courses in cooking, budgeting, etc. 

 We want the right to move together with the other sex when 

we feel ready for it, and we also want the right to marry when we ourselves feel the time is right. 

 We who live in institutions found that: 

 The homes should be small;  We will absolutely not have specific hours to follow in 

terms of going out, returning, etc.; and 

 Even in institutions, we want to be able to go steady and 

live together with the other sex without having the personnel interfering with our private lives. 

On Education 

 We think that the name "separate schoo There should be student councils wh

decisions about the curriculum, the chotime activities in school, etc. 

On Work  We demand more interesting jobs.  We do not want to be used on our job

and the most boring tasks we do at prese

 We want that when we are working in 

fellow workers should be informed abou

Recently, in California, eight mentally discussed what it means to be called retar It's more the way it is said. It's not that w

word, really. 

 Let the kid go out and make his own mi

them. 

 They'll grow out of some [of the men

the mother protects them, they'll never g

 You gotta evaluate the youngster on an 

compare one to another, like a tennis m

See references 10, 132, 133. 
Are There Organizations Working for 

Full Citizenship for Mentally Retarded Persons? 

Many of the developments in the field of mental retardation have been brought about through the efforts of a group that called itself, in 1950, "Parents and Friends of Mentally Retarded Children," in 1951, "The National Association for Retarded Children (NARC), and, in 1974, "The National Association for Retarded Citizens." The Association has grown to include more than 250,000 members in more than 1,500 State and local member units. Each local unit has significant autonomy in the NARC. Although NARC is a major group advocating for mentally retarded persons, there are many others. In the following listing are the names and addresses of some organizations that make up the leading edge of the rights movement for mentally retarded citizens. As is becoming increasingly more common, many of these groups deal not just with one classification of handicaps, but with groups of handicapped persons, such as developmentally disabled, or with handicapped persons in general. 

See reference 80 

National Association for Retarded 

Citizens (NARC) 

2709 Avenue E East P.O. Box 6109 Arlington, Texas 76011 The Council for Exceptional Children 

(CEC) 

State-Federal Clearinghouse 1920 Association Drive Reston, Virginia 22091 American Association on Mental 

Deficiency (AAMD) 

5201 Connecticut Avenue, N.W. Washington, D.C. 20015 National Information Center for the 

Handicapped (Closer Look) 

Box 1492 Washington, D.C. 20013 National Center for Law and the 

Handicapped 

1235 North Eddy Street South Bend, Indiana 46617 Mental Health Law Project 84 Fifth Avenue New York, New York 10011 

and 

1751 N Street, N.W. Washington, D.C. 20036 The Center on Human Policy 216 Ostrom Avenue Syracuse, New York 13210 American Civil Liberties Union 85 Fifth Avenue 

New York, New YCenter for Law an1600 Twentieth SWashington, D.C. President's Comm

of the Handicap

1111—20th StreeWashington, D.C. President's Comm

Retardation 

Washington, D.C. 
WHAT ARE THE COSTS OF MENTAL 
Where Do Funds for Mental 

Retardation Programs Come From? How Much Is Spent? A major factor in public policy is fiscal support. At most, ten percent of mentally retarded persons live in public residential facilities, but a significantly higher proportion of public, private, and personal funds is used to support these facilities. In 1970, for example, it is estimated that over 40 percent of all mental retardation funds were spent on persons living in these public care facilities. 

Estimated Funding of Direct Service Mental Ret

Programs 1968 and 1970, by Source(in milli

State & 

Total Federal Local 

1968 

Public Residential care Community care 

Total 

$1,004 

1,391 

$2,395 

$110 

121 

$231 

$76

1,20

$1,97

% Distribution 100.0% 9.6% 82.5% 

197

Public Residential care Community care 

Total 

$1,307 

1,868 

$3,175 

$196 

192 

$388 

$93

1,58

$2,51

% Distribution 100.0% 12.2% 79.3% 

Source: Conley, R. The Economics of Mental Retardation. Baltimore: Johns HRecent developments, including inflation and court decisions, ainstitutional care to rise dramatically. For example, in one large freported that operating expenses per resident per day in 1974 wecompares with approximately $16.50 per resident per day in th1972, only two years earlier. See references 23, 85, 114 
What Are the Economic Benefits of 

Preventing or Ameliorating Mental Retardation? The following three pages discuss the economic factors of specific forms of prevention and direct service. They are based on the best financial and case service information available to the analysts who made the cost-benefit calculations. The evidence presented by the figures clearly points out that it is economically sound to provide these measures, unsound not to do so. This economic viewpoint does not, of course, cover questions of right and wrong, of social justice, or other motivating values that lead society to expend resources on mentally retarded persons. The right hand figures refer to gains that would be made by avoiding the cost of special services to deal with handicapping needs of mentally retarded persons if they were not born. The left hand figures refer to those gains plus the added gains to society if the birth of a relatively "nonproductive" person was prevented and replaced by the birth of a relatively "productive" person. Discounting means adjusting future benefits to current prices, in this case, 1970. The discount rate used was seven percent per year. 

Estimated Economic Value of Preventing Mental Reta

Among Persons Born in 1952, Using 1970 Prices

Prevention of Brain Damage Prevent Bir

or Replacement Birth 

Not Discounted Discounted Not Disc

Male Female Male Female Male F

IQ below 40 Includes earnings gain but not values 

of housekeeping and other unpaid work $739,000 $291,000 $202,000 $107,000 

$246,000 $

Includes total productivity gain 891,000 505,000 235,000 152,000 IQ 40 to 49 Includes earnings gain but not values of 

housekeeping and other unpaid 654,000 258,000 179,000 95,000 

193,000 

Includes total productivity gain 790,000 442,000 209,000 133,000 IQ 50 to 69 

Includes earnings gain but not values of housekeeping and other unpaid work 118,000 70,000 25,000 17,000 

20,000 

Includes total productivity gain 144,000 94,000 30,000 22,000 

Source: Conley, R. The Economics of Mental Retardation. Baltimore: Johns Hopkins Press

In a study done in 1969 for the United States Senate Committee on Nutritiowas estimated that elimination of malnutrition would provide economic bebetween 14 and 50 billion dollars. A large portion of this would be in reduced infant mortality and morbidit

of nutritional studies, the author estimated that proper nutrition would percent improved performance, both mental and physical, among chcontributes to mental retardation biologically or functionally, improved nureduce its costs. See references 23, 90 
What Is the Economic Impact of 

Vocational Rehabilitation of Mentally Retarded Persons? If one assumes that a successful vocational rehabilitation of a mentally retarded person, as defined by the Federal Vocational Rehabilitation program—placement in a job following rehabilitation services for at least sixty days—leads to enduring employment, the following cost-benefit relationships can be attributable to the rehabilitation effort. 

Value of Future Earnings Generated by Each Dollar 

Vocational Rehabilitation of the Retarded at Diffe

Discounted by 7%, 1970 

Ages of Retarded Persons Wh

Mildly Retarded 18 yrs. 20 yrs. 25 yrs. 35 

Male $14.2 $14.8 $14.8 $

Female 8.3 8.4 7.8 

Moderately Retarded 

(1Q 40 to 49) 

Male 2.2 2.3 2.3 

Female 1.3 1.3 1.2 

Source: Conley, R. The Economics of Mental Retardation. BaltimPress, 1973. See reference 23 
What Is the Economic Impact of Ratio of Future Earnings of Retarded Workers t

Education of Mentally Retarded of Their Public Education, Discounted at 7%, Persons? A similar analysis and comparison can be made for different forms of education and future productivity of mentally retarded persons. Differences are shown by sex, degree of retardation and type of education. 

Adjusted for Percentage Assuming C

Employed Employment 

Earnings Plus E

Unpaid Work U

Earnings Other Than Earnings O

Only Homemaking Only H

Mildly retarded 

Males 

All regular education 8.3 10.4 9.7 All special education 4.3 5.4 5.1 Combination 5.9 7.4 6.9 

Females

All regular education 1.8 2.5 5.7 All special education 1.0 1.3 3.0 Combination 1.3 1.8 4.0 

Moderately retarded 0.3 0.4 0.8 

Males Females 0.1 0.1 0.4 

Source: Conley, R. The Economics of Mental Retardation. BaltimPress, 1973. See reference 23 
What Are the Trends in Federal 

Spending on Mental Retardation Programs? With the wave of legislation and programs passed in the early 1960's, the Federal government began playing a major role in services for the mentally retarded. Federal expenditures rose from 15.79 million dollars in Fiscal Year 1955 to an estimate of 932.8 million dollars in Fiscal Year 1973. In the chart at right, Braddock compares the relative importance of Department of Health, Education, and Welfare expenditures over time in three types of "engagements" (I. ClientCentered," or funding of direct services for mentally retarded persons; II. "Program and Development," or training of personnel, research, construction, and coordinating agencies; and III. "Personal Maintenance," or funds for income maintenance and medical insurance). Note: For each Fiscal Year funds obligated for these three objectclassifications equal 100 percent of HEW mental retardation engagements. HEW: The Department of Health, Education, and Welfare 

Adapted from: Braddock, D. "Mental Retardation Funds: An Policy." Doctoral dissertation, University of Texas at Austin, 197

 
Braddock found that although the mental retardation budget was 

escalating rapidly, most of the increases in spending were attributable to Federal funds for personal maintenance. In recent years this has affected the proportion of funds available for client services and program administration. Braddock reported fragmentation among HEW mental retardation programs, listing 46 separate program elements that made up HEW's effort for mentally retarded persons in 1973. This fragmentation complicated comprehensive planning because so many different agencies, with different funding patterns and different regulations, were serving mentally retarded persons. See reference 11 
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81. National Association for Retarded Citizens. "Give an Opportunity—Gain an Asset." Arlington, Texas: Nati

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83. National Association for Retarded Citizens. "The Right to Choose: Achieving Residential Services 

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84. The National Foundation—The March of Dimes. Birth Defects—Genetic Services, International Directory

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85. New York State ARC v. Rockefeller. U.S. District Court, Eastern District of New York. Testimony, Week 

86. O'Connor, G., and Sitkei, E. G. "The Study of a New Frontier in Community Services: Resid

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87. O11ey, G., and Fremouw, W. "The Voting Rights of the Mentally Retarded: A Survey of State Laws." Men

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88. Penrose, L. S., and Smith, G. Down's Anomaly. Boston: Little, Brown and Co., 1966. 

89. Pomeroy, J. Recreation for the Physically Handicapped. New York: Macmillan Company, 1964. 90. Popkin, B. M. "Economic Benefits from the Elimination of Hunger in America." Madison, Wisconsin: Insti

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91. Posner, B. "Changing Attitudes Toward Retarded People." An address before the International League of S

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93. Santamour, M., and Ross, K. "Defining the Problem of Mental Retardation: A Functional Model." Paper pr

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94. Scheerenberger, R. C. "Current Trends and Status of Public Residential Services for the Mentally Retarded.

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97. Sigelman, C., ed. Citizen Advocacy and Protective Services. Lubbock, Texas: Texas Tech University, 197498. Stephens, B., ed. "Symposium: Developmental Gains in the Reasoning, Moral Judgment, and Moral Condu

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99. Suazo, A. C. "A National Survey of Workshops for the Mentally Retarded." Washington, D. C.: National C

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100. Tarjan, G., et al. "Natural History of Mental Retardation: Some Aspects of Epidemiology." American Journ

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101. Tausch, D. J. Texas State Department of Health. Personal Communication to A. A. Mallas, Former Membe

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102. Thompson, J. D. "Building a Maternal Health Care System for Georgia." Atlanta, Georgia: Georgia Counc

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103. Thompson, J. S., and Thompson, M. W. Genetics in Medicine. 2nd ed. Philadelphia: Saunders Publishing C

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110. U.S. Department of Health, Education, and Welfare. "Findings of the 1970 APTD Study, Part I: Demo

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111. U.S. Department of Health, Education, and Welfare. Head Start Services to Handicapped Children: Sec

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112. U.S. Department of Health, Education, and Welfare. "Mental Retardation Source Book of the Department 

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114. U.S. Department of Health, Education, and Welfare. Report of the Secretary's Special Federal Team: T

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115. U.S. Department of Health, Education, and Welfare. Rehabilitation Services Administration. Unpublish

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116. U.S. Department of Health, Education, and Welfare. U.S. Immunization Survey, 1973. Atlanta, Georgia: P

Center for Disease Control, 1974. 

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Biochemical Findings. Washington, D.C.: Health Resources Administration, 1974. 

118. U.S. Public Health Service. Promoting the Health of Mothers and Children, Fiscal Year 1973. Rockville, 

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119. U.S. Department of Transportation. "The Handicapped and Elderly Market for Urban Mass Transit." Wash

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122. Wolfensberger, W., and Zauha, H., eds. Citizen Advocacy and Protective Services for the Impaired and Han

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123. Wright, S., Crandall, B., and Boyer, L., eds. Perspectives in Cytogenetics—the Next Decade. Springfield, Il

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125. Zwiren, M. L. "Mental Retardation: How Can We Help?" Journal of Health, Physical Education and Recrea

Publications of the President's Committee on Mental Retardation: 

126. Birch, H.G. Malnutrition, Learning and Intelligence. Washington, D.C.: President's Committee on Mental R

127. Cohen, J.S., ed. Manpower and Mental Retardation: An Exploration of the Issues. Washington, D.C.: Presid

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for the Mentally Retarded, pp. 179-195. Edited by R. Kugel and W. Wolfensberger. WashingtoCommittee on Mental Retardation, 1969. 
Abilities of retarded persons, 15 

Abortion 

spontaneous, in Down's syndrome, 22 unrecognized in formation of Rh antibodies, 27. See also 

Termination of Pregnancy 

Accessibility of services, 71

legislation concerning, 86

Accountability for services, 72Activity centers, 54, 98Adaptive behavior deficits

compared to intellectual functioning, 7 

contributing to mental retardation, 2, 9 measurement, 6, 7, 11 

Adaptive Behavior Scales, 6American Association on Mental Deficiency, 93 American Civil Liberties Union, 93 American Red Cross, 56 Amniocentesis, 23, 24, 26 Apgar Test, 66Attitudes toward retarded persons, 50, 91 Attitudes of retarded persons, 92 Boy Scouts of America, 56 Braddock, David, 100, 101 Bureau of Education for the Handicapped, 71 Camping, 56 Causation of mental retardation 

chromosomal genetic, 20 Down's Syndrome, 21-24 Erythroblastosis fetalis, 27, 28infection; See Rubella 

lead poisoning, 35known causes, 18 low birth weight, 31, 32malnutrition; See Nutrition 

PKU, 25 prematurity, 31 research into, 19 socio-cultural retardation, 36 Tay-Sachs disease, 24-26 

Center on Human Policy, 93 Center for Law and Social Policy, The, 93 Character building organizations, 56Chromosomes. See also Genetic Counseli

anomalies, 20 in Down's Syndrome, 21, 22 normal karyotype, 20 

Community residential services, 61Conley, Ronald, 12, 96-99Council for Exceptional Children, The, 93 Costs of mental retardation, 95-101 Criminal law and retarded citizens 

penal system, 88rules of criminal responsibility, 88 

Deinstitutionalization, 61, 66, 67 

options to institutional care, 67 

Deno, E., 52 Denver Developmental Screening Test, 6 Developmental disabilities 

acting cumulatively, 15 group homes for, 68 legislation recognizing, 15

Developmental Disabilities Act, 15 Developmental opportunity, 78, 83 "Disappearing retarded", 10, 55Down's Syndrome

description, 21discovery, 21factors associated with, 22 prevention, 23, 24 
Due process of law, 76, 77, 80, 81 

Economics of mental retardation, 97-99 Employment of retarded individuals 

feelings of retarded persons toward, 92job discrimination, 86 payment in institutions, 84, 86 potential, 55related to education, 99 related to vocational rehabilitation, 98 

Epidemiology, 8-12, 14, 15 Erythroblastosis fetalis, 27

history of disease, 27Rh gamma globulin, 27, 28 

Etiology, 18, 20, 21-24, 25-28, 31, 32, 35 Families Play to Grow, 56 Family care (foster care), 61, 68 Federal Civil Service Commission, 55 Federal spending trends, 100, 101Foster care, 61, 68 Full citizenship, components, 77, 78 Funding sources for retardation services, 96 

Genetic counseling, 19, 23, 24

funding, 24personnel, 23

Gesell Developmental Scales, 6 Gregg, Norman, 29 Group homes, 61, 68-70 Gunzburg Progress Assessment Chart, 6 Handicapping Conditions. See also Developmental 

disabilities among mentally retarded persons, 14, 15, 63-65 

definition, 13 

mental retardation as, 13 

High-risk children, 19, 32, 44, 46High-risk pregnancies, 19, 23, 24, 31-33 Infant mortality, 33 Information, problems with, preface, 41 

Institutions, 62-67. See also Public reside

Private residential facilities expenditures for care in, 96litigation concerning, 82-84population characteristics, 63-65population trends, 62-66

Intellectual functioning, subnormal 

and legal competency, 87, 88compared to adaptive behavior deficitscontributing to mental retardation, 2, 5measurement, 5, 7, 11, 12, 37, 38, 70 

criticism of instruments, 5 

public assistance recipients, 59public residential facilities, 63, 65relative to abilities, 80 

Intelligent quotient (IQ), 2, 5. See also Int

functioning 

Joseph P. Kennedy, Jr. Foundation, 56 Karotype. See Chromosomes. "Least restrictive alternative," 43, 52, 78, 

Normalization 

Legislation on rights of retarded citizens 

civil regulation, 87right to education, 84, 85right to employment, 86 right to freedom from discrimination, 8right to physical access, 86
Litigation on rights of retarded citizens, 

right to education, 80, 81right to freedom from harm, 83 right to payment for work, 84 right to treatment, 82 summary, 79

Low birth weight, 31, 32 Mainstreaming, 43, 85 Malnutrition, 19, 32, 34. See also Nutrition 

Manpower needs, 71, 72Maternal and Child Health Services

child development clinics, 6, 7 

maternity and infant care projects, 33 research, 19 summary of programs, 46 "well-baby" clinics, 44 

Mental Health Law Project, 93Mental retardation, definitions, 2-4 

AAMD, 1959 (Heber), 2, 6, 7, 11, 41, 54AAMD, 1973 (Grossman), 2, 3, 10, 11, 41, 

54, 65 

clinical perspective, 2, 3

biological-medical, 4educational, 4 statistical, 4

Doll, Edgar, 2Gladwin, Thomas and Sarason, Seymour, 2 Goddard, Henry, 2Howe, Samuel Gridley, 2 Mercer, Jane, 2, 3 social systems perspective, 2, 3 

Mental retardation, diagnosis

age of individual, 9difficulties in early diagnosis, 9, 10, 12 leading to discrimination, 86 

professionals involved, 59

related to legal competency, 87, 88 

Mental retardation, incidence 

defined, 8 factors determining, 9 problems in determining, 9 related to prevention, 8, 18

Mental retardation, levels 5, 7 

elimination of "borderline" level, 3, 5 in Down's Syndrome, 21 in Erythroblastosis fetalis, 27in Rubella, 29 in Public residential facilities, 63, 65 

Mental retardation, prevalence

age-specific, 10 associated handicapping conditions, 14defined, 8 estimates, 10-12 related to incidence, 8 related to service needs, 8 

Metabolism, inborn errors, 25. See also 

PKU; Tay-Sachs disease

Milwaukee Project, 36-38 National Association of Coordinators of S

Mentally Retarded, 65, 66

National Association for Retarded ChildreNational Association for Retarded Citizen

on-the-job training program, 55 Youth NARC, 48 

National Information Center for the HandNeeds of all persons, 40

hierarchy, 40individual's ability to meet, 42 requirement of care, 40 
Normalization, 43, 73 economic value, 97 

Nursing homes, 68-70. See also Community residential Private residential facilities, 61, 67-70 

services Program evaluation, 72, 73 

Nutrition Protective services, 90, 91 

in children, 19 Public residential facilities, 58, 61-66 

Head Start supplements, 44 Purchase of services, 47 possible relation to mental retardation, 34 status of children, ages 1-5, 34 Respite care, 61 

in women Rh factor, 27, 28 

possible cause of mental retardation, 32 Rights of retarded persons, classification, programs of United States Department of Agriculture, 32, 58 Ross, Kingsley, 40 

related to birth weight, 31 Rubella, 29, 30 status of women ages 18-44, 32 

Santamour, Miles, 40 

Organizations promoting full citizenship for retarded Scheerenberger, Richard, 49 

persons, 93 Services 

educational, 51, 53 

Perinatal care, 19, 27, 30, 32, 33 economic value, 99 Phenylketonuria. See PKU right to, 80, 81 

PKU for income maintenance, 58-60 

as inborn error or metabolism, 25 generic, 42, 49 description, 25 health, 44-47 relation to mental retardation, 25 providing social relationships, 48, 49, 8screening for, 25 recreational, 56, 57 treatment, 25 residential, 61-70 

Prematurity, 31. See also Causation of mental retardation expenditures on, 96 

President of the United States, service systems, 40 

Inside front cover, preface, 18 components, 40 

President's Committee on Employment of the Handicapped, defined, 40 

71, 93 humane, 40 

President's Committee on Mental Retardation (PCMR), 93 to ensure full citizenship 

major goals, preface citizen advocacy, 88, 89 

survey of activity centers, 54 protective services, 88 survey of societal attitudes, 91 vocational training, 54 Prevention strategies, 19, 23-28, 30, 32, 33, 35, 37, 38 economic impact, 98 
Sexuality, 50 

regulation, 87 sterilization, 50, 82, 87 

Sheltered workshops, 54, 98 Social Security 

income maintenance programs, 58 Medicare, 44 Supplemental Security Income, 60 

Socio-cultural retardation, 9-11 

defined, 36 Milwaukee Project, 37, 38 prevalence, 12 prevention, 37, 38 

Socio-economic status 

likelihood of being labeled retarded, 12 low birth weight, 31 nutrition, 32, 34 

Special education, 51-53. See also Services, educational Special Olympics, 56 Stanford-Binet Tests, 5 Sterilization, 32, 50, 82 Suazo, Anthony, 54 Supplemental Security Income, 58, 60 Supreme Court of the United States, 82, 83, 88 Swimming, 56 

Tarjan, George, 10 Tay-Sachs disease, 24, 26 

as inborn error of metabolism, 26 prevention, 26 genetic transmission, 26 

Termination of pregnancy, 19, 24. See alsTrisomy 21, 21, 22. See also Down's Syn

United Nations Declaration on rights of m

persons, 76 

United States Department of Agriculture, United States Department of Health, Educ

50 

United States Department of Justice, 92 United States Department of Labor, 86 United States Senate, Select Committee o

Nutrition and Human Needs, 32 

Vineland Social Maturity Scale, 6 Wechsler scales, 5 Youth NARC, 48 

*U.S. GOVERNMENT PRINTING 
President's Committee on Mental Retardation 

The President's Committee on Mental Retardation was established by Executive Order of the President in 1966. The Committee is composed of 21 citizen members and five ex-officio members, all appointed by the President to advise him on what is being done for the mentally retarded; to recommend Federal action where needed; to promote coordination and cooperation among public and private agencies; to stimulate individual and group action; and to promote public understanding of the mentally retarded. 

Members of the Committee Caspar W. Weinberger, Chairman Mrs. N. Lorraine Beebe, Vice Chairman Mrs. Marianna Beach Geraldine M. Clark, Ph.D. Henry V. Cobb, Ph.D. Mr. Robert A. Collier Mr. Bill J. Doggett Mr. Richard J. Elkus Mr. Ralph J. Ferrara Mr. Michael R. Gardner Mr. Melvin Heckt Cecil B. Jacobson, M.D. Mr. James N. Juliana Mr. Lawrence A. Kane, Jr. Phillip U. Martinez, M.D. Governor Thomas J. Meskill Mr. Lloyd E. Rader, Sr. Mrs. Louise R. Ravenel Mr. William B. Robertson Will Beth Stephens, Ph.D. Mrs. Margaret B. Ulle Miriam G. Wilson, M.D. Michael P. Balzano, Director, ACTION John T. Dunlop, Secretary of Labor Bert A. Gallegos, Director, Office of 

Economic Opportunity 

Carla A. Hills, Secretary of Housing and 

Urban Development 

Edward H. Levi, Attorney General of the 

United States 

Professional Staff Fred J. Krause, ExeAllen R. Menefee, A

Program 

Alfred D. BuchmueBertha Kaminker Jack McAllister Miles Santamour Mary Smith William H. WilsnacRaymond W. Natha

Communications 

Martin Bouhan Mary Z. Gray 
PRESIDENT'S COMMITTEE ON MENTAL RETARDATION POSTAGE AND FEES PAID 

WASHINGTON, D.C. 20201 U.S. DEPARTMENT OF H.E.

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