REPORT TO 

THE PRESIDENT 

MENTAL RETARDATION: 

PREVENTION STRATEGIES 

THAT WORK 
PRESIDENT'S COMMITTEE 

ON MENTAL RETARDATION

The Honorable Patricia R. Harris 

Chairperson 

Secretary, Department of Health and 

Human Services 

Herbert J. Cohen, M.D. 

Vice-Chairperson 

CITIZEN MEMBERS 

Harvey A. Abrams 

Mrs. Janet Allen-Spilka 

G. Thomas Bellamy, Ph.D. 

Andrew I.T. Chang 

Ruth W. Diggs, Ed.D. 

Robert G. Jordan, Jr., M.D. 

Mrs. Marlene F. Kopman 

Guy M. McKhann, M.D. 

Mrs. Shirley C. Miller 

Ana Navarro, M.D. 

Alba A. Ortiz, Ph.D. 

Anderson W. Pollard 

Edward J. Quilligan, M.D. 

Ludwig Rothbein 

Mrs. Eunice Kennedy Shriver 

Mrs. Florence K. Simons 

Mrs. Aileen A. Weiss 

Samuel Whiteman 

Edward F. Zigler, Ph.D. 

EX-OFFICIO MEMBERS

Attorney General 

Secretary of Labor 

Secretary of Housing and 

 Urban Development 

Director, Community Services 

 Administration 

Director, ACTION

PCMR STAFF 

Fred J. Krause 

Executive Director 

Miss Linda C. Bass 

Mrs. Nancy 0. Borders 

George G. Bouthilet, Ph.D. 

Miss Robin D. Burrell 

Mrs. Beverly P. Cannon 

Ken Coggeshall 

Mrs. Fay L. Gold 

Mrs. Nadine C. Harrison 

Mrs. Beverly M. Keith 

Allen R. Menefee 

Mrs. Jacqueline Mordecai 

Ashot Mnatzakanian 

John Pride 

Edwin Richardson, Ph.D. 

Mrs. Laverdia Taylor Roach 

Mrs. Mary Rodgers 

Miles B. Santamour 

Mrs. Mattie A. Smith 

Mrs. Pierrette A. Spiegler 

Mrs. Emily B. Taylor 

David J. Touch 

Miss Terry A. Visek 

 

 
PRESIDENT'S COMMITTEE ON MENTAL RETARDATION 

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES 

Office of Human Development Services 

Washington, D.C. 20201 

 December 3, 1980 

The President 

The White House 

Washington, D. C. 20500 

Dear Mr. President: 

I am pleased to transmit to you the Twelfth Annual Report 

of the President's Committee on Mental Retardation entitled 

Mental Retardation: Prevention Strategies That Work.

The Committee points out the fact that mental retardation 

is America's number one health problem affecting children today. 

Each year an ever increasing number of mentally retarded babies 

will be born unless we intensify prevention efforts. One out 

of every ten persons in this country has a mentally retarded 

person in the family. 

Many cases of mental retardation are preventable. Experts 

in the field tell us that of the more than 200 known causes of 

mental retardation -- including injuries at birth, toxic conditions, inherited genetic factors, measles, diabetes, x-rays, 

lead and household poisonings, metabolic disorders, Rh blood 

diseases, etc. -- more than 50 percent are preventable. Experts 

have found a significantly larger percentage of mental retardation resulting from environmental influences, including sociocultural disadvantages, to be preventable. 

Recognizing the significance of these findings, the Committee 

embarked on a study of the distinguishing features of strategies 

known to be successful in preventing mental retardation, and 

toured America in search of programs and projects implementing 

such strategies. Committee conclusions resulting from the 

intensive study and search are contained in this report. 

I hope that this Report will increase public awareness of 

the preventable causes of mental retardation, and serve as an aid 

to the promotion of national, State and local activity to reduce 

the incidence of this serious handicapping condition. 

 Sincerely yours, 

Patricia Roberts Harris 

Chairperson 

REPORT TO THE PRESIDENT 

Mental Retardation: 

Prevention Strategies that 

Work 

President's Committee on Mental Retardation 

Washington, D.C. 20201

U.S. Department of Health and Human Services 

Offices of Human Development Services For Sale by the Superintendent of Documents U.S. Government Printing Office 

 Washington, D.C. 20402 

 

 

 

hds 

Human 

Development 

Services
 In a large number of cases, mental retardation can be 

prevented. This report presents a sampling of effective 

programs from across the country that are part of a 

national effort to prevent mental retardation and to 

alleviate its effects. They offer models for others to 

follow. 

 Some of the more important bio-medical strategies 

presented involve newborn metabolic screening and 

prenatal care, genetic screening and treatment, 

neonatal care for high-risk infants, and follow-up for 

these children. In the environmental area, some 

effective approaches involve Head Start and Home 

Start programs, family planning, and community 

outreach. Other programs assist teenagers to prevent 

pregnancy or deal with the unique needs of Native 

Americans, other minority groups, and rural residents. 

 These programs were chosen to be only 

representative models of successful strategies, and not 

necessarily the best program of a particular type.
The development of this report was assisted by 

Naomi Gray Associates under HEW Contract No. 

105-79-4200. An Advisory Group and the Staff of the 

President's Committee on Mental Retardation 

provided invaluable assistance in the preparation of 

this report. 

Laverdia Taylor Roach, PCMR, Project 

Officer Naomi T. Gray, Project Manager 

Gini Scott, Writer 

Ronnie Prosser, Artist/Illustrator 

Doris B. Harrison, Graphic 

Designer 

Library of Congress Catalog No. 

DEDICATION 

 The President's Committee on Mental Retardation 

(PCMR) wishes to dedicate this Annual Report to its 

long standing Senior Consultant George Tarjan, M.D. 

with deep appreciation for his many years of untiring 

effort and support of the PCMR goals and activities. 

 Through his leadership in the field of mental 

retardation, Dr. Tarjan has been nationally and 

internationally acclaimed. As a critical thinker, he has 

isolated key issued for thoughtful deliberation. He has 

been a planner and shaper of social policy for more 

than 30 years: A teacher, a scientist, a clinician and a 

humanitarian. 

 In the preparation of this Report, the total 

dimensions of the role that Dr. Tarjan has played 

over many years of providing leadership in combating 

mental retardation have emerged; the elder 

Statesman, the critical thinker and the problem 

solver. In this role, his unique quality of bringing 

together people of diverse backgrounds and points of 

view; his ability to formulate insightful questions 

to further spur the

group to solution, his ability to recognize and accept 

his own mistakes, his sensitivity, gentility, humility, 

levity and wisdom, his ability to work comfortably 

with all persons—from the most naive to the most 

sophisticated—was a stimulating and stabilizing force 

behind the preparation of this Report. 

His research has added new knowledge above the 

natural life experiences of mentally retarded persons, 

and his foresight has permitted more accurate 

assessment of the future, and therefore better 

planning. 

With his ever present pipe in hand and in his 

typical patient and tolerant manner, Dr. Tarjan's 

charisma and leadership make him a cultivator of 

human resources, inspiring the work of others. All 

the Committee Members, Consultants, and staff 

who have had the privilege of working with 

George Tarjan have come away wiser and better 

human beings as a result of their experiences with 

this remarkable man.


ACKNOWLEDGEMENTS

The President's Committee on Mental 

Retardation wishes to express appreciation to 

the following contributors to this report: 

James Allen, M.D. 

Sidney W. Bijou, Ph.D. 

Bobby Brayboy, Ph.D. 

Henry V. Cobb, Ph.D. 

Robert E. Cooke, M.D. 

Mrs. Marion Cree-Cross 

Lawrence M. Gartner, M.D. 

Robert Guthrie, Ph.D., M.D. 

C. Douglas Holloman 

Rudolf P. Hormouth 

Howard N. Jacobson, M.D. 

Richard Koch, M.D. 

Kenneth Lyons Jones, M.D. 

Ms. Sarah Litch 

John M. Meier, Ph.D. 

Mrs. Beverley Morgan-Sandoz 

Mrs. Clara G. Schiffer 

Robert L. Summitt, M.D. 

George Tarjan, M.D. 

 For the staff of the programs visited which are 

highlighted in this report, we express appreciation to: 

University of Alabama in 

Birmingham/ 

The Medical Center 

Center for Developmental and 

Learning Disorders 

Infant Stimulation Program 

Teen-Tot Clinic 

University of Tennessee, Memphis Child 

Development Center 

Center for the Health Sciences 

Birmingham, Alabama 

The EPIC School (Educational Programs for the 

Individual Child) 

The New Mexico Family Planning Program 

Taos, New Mexico 

College of Physicians and Surgeons of 

Columbia University - Presbyterian Hospital, 

New York, New York 

The Western and Upper Manhattan Regional 

 

Perinatal Network 

The Rose F. Kennedy Center for Research in 

Mental Retardation and Human Development, 

Albert Einstein College of Medicine, Bronx, New 

York, Project L.I.F.E. (Low Birth-weight Infant 

Follow-up and Evaluation Program) 

Juniper Gardens Children's Project, University of 

Kansas, Kansas City, Kansas 

Norfolk Childhood Lead Poisoning Prevention 

Program Norfolk, Virginia 

University of Cincinnati College of Medicine, 

Department of Pediatrics, Infant Stimulation/ 

Mother Training Project 
PREFACE 

The Executive Order of May 11, 1966 

establishing the President's Committee on 

Mental Retardation, and the subsequent 

Executive orders including the most recent 

one dated December 28, 1978, have all 

directed the Committee to submit an annual 

report to the President. 

The annual reports have helped the 

Committee fulfill its mandated function to 

provide assistance and advice to the President 

and Secretary of Health and Human Services 

concerning mental retardation. One specific 

area of importance emphasized in the most 

recent (January 18, 1979) Charter of the 

Committee is the "development and 

dissemination of such information that will 

tend to reduce the incidence of retardation and 

ameliorate its effects." 

Consequently, this report entitled "MR 79: 

Prevention Strategies that Work" is a direct 

outgrowth of the Committee's activities as 

specified in the Presidential Order and the 

Charter. It is also the result of the continuing 

interest and efforts of numerous Committee 

members who have been active participants in 

Committee Task Force Groups focusing on 

prevention through biological and 

environmental interventions. 

 In developing the ideas for this report, 

Committee members have visited numerous 

prevention programs throughout the country, 

have sought advice and information on 

prevention strategies from various groups within 

government, in universities and in concerned 

consumer and professional organizations. 

Discussions have been held with Prevention 

Committees, Subcommittees or representatives of 

the American Association on Mental Deficiency, 

the American Association of University 

Affiliated Programs, the National Committee on 

Children with Handicaps of the American 

Academy of Pediatrics, and the National 

Association for Retarded Citizens, Maternal and 

Child Health of the Bureau of Community 

Health Services, National Institute of Child 

Health and Development, Mental Retardation 

Research Centers, State Coordinating 

Association and the Office of Special Education. 

Therefore, in developing this report on 

Prevention, a wide spectrum of advice, 

participation and ideas has been sought and utilized. 

The objective of this report is to highlight the 

current state of knowledge in the area of prevention, 

whether it is primary prevention aimed at eliminating 

factors directly producing mental retardation or 

secondary prevention aimed at modifying or 

mitigating any adverse circumstances, environments or 

conditions which may contribute to depriving 

developing children from realizing their maximum 

potential. The report, therefore, attempts to 

determine or define the "state of the art" for 

biological and environmental intervention modalities 

and to provide illustrations of what can be 

accomplished by describing programs that may be 

on the frontiers of research or on the "firing line" of 

service delivery. Examples that are provided are 

representative of the best, but obviously are not the 

only such programs available. 

Finally, this report, particularly in the Summary, 

Conclusions and Challenges for the Future Section, 

highlights and summarizes some of the most 

important current prevention activities and specifies 

the most salient directions and goals to be achieved. 

It is a call to action to apply what we now know, 

to study further what we must soon learn and, 

consistent with the Committee's Charter as applied to 

prevention activities, to identify "the potential of 

various Federal programs for achieving Presidential 

goals in mental retardation and coordination of 

Federal agencies in the mental retardation field." 

We hope that this report will stimulate major new 

initiatives in the prevention of mental retardation in 

our country. 

HERBERT J. COHEN, M.D. 

Vice-Chairperson 

President's Committee on Mental 

 Retardation 
TABLE OF CONTENTS 

INTRODUCTION _______________________ 1

SECTION I: BIOMEDICAL PREVENTION: 

PROGRAMS THAT WORK ______________ 2 

GENETICS ____________________________ 3 

Genetic Counseling _____________________ 3 

Screening of Newborn Infants ____________ 3 

Screening to Identify Individuals and Couples 

 At-Risk for Having Affected Children_____ 4 

Genetic Diagnosis to Detect Fetal Abnormalities ___5 

PERINATAL INTENSIVE CARE ___________ 7 

PROGRAM HIGHLIGHTS: 

Columbia University: Coordinating Perinatal 

 Services Through a Perinatal Network ___ 8 

Memphis: Preventing Mental Retardation 

Through a Comprehensive Program of 

Genetic Counseling and Screening ______ 10 

The Rose F. Kennedy Center for Mental 

Retardation and Human Development: 

Research, Evaluation and Helping the 

Low Birth-weight Infant Through the "LIFE" 

Program __________________________ 13 

IMMUNIZATION ______________________ 16 

SECTION II: ENVIRONMENTAL 

PREVENTION: PROGRAMS THAT WORK___ 17 

Preparation for Parenthood _______________ 19 

Programs for Mothers and Children ________ 19 

Mother Training Programs ________________ 19 

Infant and Toddler Stimulation ____________ 21 

Home Teaching Programs for Infants and 

Toddlers ______________________________ 22 

Head Start_____________________________ 23 

Elementary School Programs ______________ 23 

Preschool and Elementary School Research 

Programs to Encourage Responsiveness ____ 25 

Institutions of Higher Learning ____________ 25 

PROGRAM HIGHLIGHTS 

Project Impact: Helping Low Income and 

Minority Individuals Prevent Mental 

Retardation__________________________ 26 

Taos, New Mexico: Preventing Mental 

Retardation Among Native Americans_____ 27 

SECTION III: MULTIFACTORIAL 

CONDITIONS ______________________ 30 

Teenage Pregnancy ____________________ 30 

PROGRAM HIGHLIGHT: 

Teen Tot Clinic_____________________ 32 

Nutrition____________________________ 33 

Lead Poisoning ______________________ 34 

Problems Related to the Effect of Alcohol, 

Drugs, Teratogens and Mutagens _______ 35 

Accidents ___________________________ 37 

PROGRAM HIGHLIGHT: 

The University of Alabama's Perinatal 

Infections Clinic Program ___________ 38 

PREVENTION RESOURCES ___________ 39 

UAF Involvement in Prevention Activities __ 39 

Mental Retardation Research Centers _____ 40 

UAF Program Relationship to Mental 

Retardation Research Centers 

Established Under Public Law 88-164 ____ 40 

MCH Prevention Programs and Special 

Initiatives __________________________ 41 

THE STATE AGENCIES ________________ 41 

States with Comprehensive Statewide 

Prevention Programs _______________ 41 

States with Statewide Genetic Screening and 

Counseling Programs_______________ 42 

States with High Risk Intervention Programs_42 

States with Early Case Finding Actitivities___43 

Office of Special Education and 

Rehabilitation Services _______________ 43 

PREVIOUS RECOMMENDATIONS ON 

PREVENTION BY THE PRESIDENT'S 

COMMITTEE ON MENTAL RETARDATION 

AND OTHER SOURCES___________________ 44

SUMMARY, CONCLUSIONS AND 

CHALLENGES FOR THE FUTURE______ 46

PCMR RESOLUTION ON PREVENTION_ 48
INTRODUCTION

The prevention of mental retardation can be loosely 

categorized into primary, secondary and tertiary 

levels of intervention. A conceptual matrix can be 

elaborated which defines these terms as follows: 

Primary prevention represents the attempt 

to eliminate the occurrence of the problem in 

the individual and to reduce the prevalence 

in the community. Classical examples of this 

include: addressing the medical and social 

factors, including poverty, which predispose 

to mental retardation; improving prenatal 

and perinatal care and factors within these 

time frames which directly lead to mental 

retardation; prevention of postnatal causes 

including catastrophic illnesses, accidents, 

poisonings, and abuse and neglect which lead 

to abnormal development. 

Secondary prevention attempts to identify a 

problem early so that intervention at the outset 

will eliminate the potential for abnormality or 

alter the circumstances which create the 

condition. Traditional examples of these 

include early identification of high risk 

conditions and early medical, social and 

educational or other therapeutic interventions. 

Tertiary prevention is aimed at minimizing 

the long term disability or at least mitigating 

some of its effects. This usually takes the 

form of case finding and provision of specific 

and/or comprehensive services for individuals 

or populations at large. 

In viewing the problem of prevention or the 

distribution of services, it is evident that the 

predominant population receiving services are 

those already identified as being mentally 

retarded whose disabilities are permanent, and 

for whom improved living conditions or 

therapeutic approaches are the major mode of 

service provision and delivery. Next most 

common are attempts to offer tertiary 

prevention. Primary and secondary prevention 

efforts tend to receive less attention. The latter, 

therefore, will be the major areas emphasized in 

this report. 

In attempting to bring the issues into clearer 

focus, several specific preventive approaches 

will be explored. Preventive efforts will be 

described or portrayed in terms of: 

1. The biological/medical primary prevention 

activities; 

2. The social/environmental/educational/habilitative 

secondary preventive interventions; 

3. Circumstances where there is an overlap of 

primary or secondary, or medical and socialenvironmental factors, causing disability. 

This document, therefore, does not attempt to 

redefine areas of prevention, but to illustrate, 

or highlight, in a commodious manner, 

important examples of prevention efforts and 

techniques now being employed to make them 

more effective. 

1 
SECTION I: 

BIOMEDICAL 

PREVENTION: 

PROGRAMS 

THAT WORK__

 Severe forms of mental 

retardation, in which the IQ is less 

than 50, can, in general, be traced 

to biomedical factors, including 

genetic defects such as 

chromosome disorders, metabolic 

abnormalities or polygenic 

conditions; intrauterine or 

extrauterine infections; intrauterine 

exposure to toxic (teratogenic) 

compounds; trauma at the time of 

birth or thereafter; and low birthweight. These types of mental 

retardation are associated with 

physical abnormalities such as 

dwarfism (below normal height), 

abnormal facial features and 

cerebral palsy. 

 According to a report from the 

Center for Disease Control (CDC) in 

Atlanta, about 15,000 infants were 

born with genetic disease and birth 

defects with associated mental 

retardation in 1976. About 5,000 of 

these had anencephaly (almost total 

failure of development of the brain 

and the bone that covers it) or 

spina bifida (an opening along the 

spinal column often accompanied by 

exposure of the spinal cord); 5,000 

suffered from the results of Rh blood 

group incompatibility between 

mother and infant resulting in 

jaundice and its complications in the 

newborn period; and 3,000 were 

born with Down's syndrome. About 

600 suffered from congenital 

hypothyroidism and 200 from PKU 

(phenylketonuria). 

 Some genetic disorders, such as 

Down's syndrome, can be easily 

identified at birth because of the 

distinctive appearance of affected 

infants, including a flattened back of 

the head, upward slanting eyes and 

small skin folds at the inner 

corners of the eyes. Other 

conditions do not become apparent 

until later in the first year of life. 

For example, the baby with TaySachs Disease appears normal at 

birth, but, after several months of 

apparently normal development, 

the infant begins to deteriorate 

with loss of speech and vision, 

followed by convulsions, and death 

prior to the age of five years. This 

condition, limited for the most 

part to Jewish people of Eastern 

European origin, is caused by a 

single abnormal recessive gene. If 

parents have had one affected 

child, their risk of having another 

affected child with any future 

pregnancy is one in four. Although 

no treatment is available for TaySachs Disease, the courses of PKU 

and congenital hypothyroidism can 

be significantly altered by early 

treatment. 

 PKU, like Tay-Sachs Disease, is 

caused by a single abnormal 

recessive gene. It affects 

approximately one in 15,000 live 

born infants, and is caused by the 

deficiency of an enzyme. All 

proteins in the body are made up of 

amino acids. Phenylalanine is one 

of those amino acids, and its major 

source is the diet. It is necessary 

for normal growth and body 

functions, but in excessive amounts 

it causes permanent brain damage. 

Phenylalanine is normally 

converted in the body cells to 

another amino acid, tyrosine, 

under the influence of an enzyme 

called phenylalanine hydroxylase 

and its various "cofactors." In 

PKU the enzyme or a cofactor is 

deficient and phenylalanine is 

accumulated in the developing 

brain. The accumulation can be 

prevented by using a diet very low 

in phenylalanine. Although there is 

still discussion about how long the 

individual with PKU should 

remain on the diet, most centers 

recommend discontinuing the 

diet at three to ten years with the 

average age being six. However, 

14 centers feel the diet should be 

continued indefinitely. It is also 

generally considered important to 

monitor female PKU children as 

they - develop because, even 

though they may appear to develop 

normally, a woman born with 

PKU may continue to have a high 

phenylalanine level in her blood, 

and when she is pregnant, her high 

phenylalanine blood level may 

result in severely retarded offspring. 

Thus, such a pregnant woman 

should be on a special low 

phenylalanine diet so the child isn't 

affected. 

 Thyroid hormone is necessary 

for growth, brain development and 

other body functions. About one 

in 5,000 babies is born without a 

thyroid gland. Untreated, the 

affected infants are destined to be 

severely mentally retarded and 

dwarfed. The entire picture can be 

prevented, if, in early infancy, the 

affected baby is recognized and 

given thyroid extract by mouth. 

The two conditions, PKU and 

congenital hypothyroidism, are 

examples of devastating conditions 

whose effects can be prevented by 

fairly simple therapeutic measures. 

Significantly, severe mental 

retardation occurs regardless of the 

family's educational level or socioeconomic class. Therefore, 

preventive measures must embrace 

 

 

2 
individuals of all social levels. The 

parents of children with severe 

mental retardation are, in most 

cases, normal. The parents of 

mildly retarded children are more 

likely to be mentally retarded 

themselves, when low income and 

impoverished social and learning 

environments are major factors. 

To be effective, preventive 

measures must be instituted early. 

In the case of maternal rubella 

(German measles), immunization 

of all infants at one year of age or 

later will prevent the occurrence of 

the disease in the pregnant woman. 

Screening of populations of 

Eastern European Jewish people 

for the presence of the gene for 

Tay-Sachs Disease prior to 

childbearing can identify couples at 

risk and, thus, can potentially 

prevent affected children. One 

such gene carried by a person has no 

effect; two genes, one inherited from 

each parent, are necessary 

for the manifestation of the 

disease. 

Screening of all newborns for 

PKU and congenital hypothroidism 

can identify affected infants, thus 

allowing early treatment and 

prevention of the mental 

retardation that is inevitable 

without treatment. 

GENETICS

More than 100 genetically 

determined biochemical disorders of 

metabolism have been identified in 

the unborn baby. 

About 100,000-150,000 infants, 

representing three to five percent of 

the three million annual births in 

the U.S.A., are destined to be 

mentally retarded; some have other 

accompanying birth defects. 

Several strategies are available to 

prevent mental retardation due to 

genetic factors, including: 

1) genetic counseling for 

parents or prospective 

parents known to be at risk 

for producing a mentally 

retarded child; 

2) screening of newborn infants 

for selected metabolic 

diseases; 

3) screening of segments of the 

population to identify 

individuals and couples at risk 

for having affected children; 

4) prenatal genetic diagnosis to 

detect abnormalities in the 

developing fetus; 

5) early treatment of affected 

children, if treatment is 

available. 

Genetic Counseling 

In genetic counseling, an 

appropriately trained professional 

provides information to individuals 

or families at risk for genetic 

disease. This includes information 

on the nature of the condition for 

which a risk does or may exist; 

it features and the outlook for 

affected individuals relative to life 

and health. It also involves 

providing statistics on the risk of 

occurrence or recurrence of genetic 

disease in the family; the available 

treatment of the disease condition; 

and options for dealing with 

genetic risk (such as refraining 

from reproduction, prenatal 

diagnosis of genetic disease, 

adoption, artificial insemination, 

etc.) in a manner in keeping with 

their family goals and ethical or 

religious beliefs. Genetic 

counseling further provides support 

to individuals and families in 

adjusting to the conditions and in 

adjusting to options chosen for 

dealing with their genetic risks. 

Genetic counseling is a necessary 

part of any overall genetic program 

involving screening for affected 

individuals, screening for normal 

parents who have an increased risk 

of producing affected children, or 

prenatal diagnosis of genetic disease. 

Any person identified in a population 

screening program must have access 

to genetic counseling, or else the 

screening program fails in one of its 

major preventive responsibilities. The 

accuracy of genetic counseling 

depends on an accurate diagnosis of 

the condition affecting the individual 

or family and on an accurate 

assessment of the genetic mechanism 

which has produced the condition. 

Historically, and still, families

are referred for or seek genetic 

counseling primarily because of the 

existence of a person with a 

definite or possible genetic 

condition. In that situation, genetic 

counseling is provided "after the 

fact", and one major goal is the 

prevention of further affected 

individuals in that family. 

Population screening programs or 

screening of relatives of an 

affected person may allow genetic 

counseling of couples-at-risk 

before they have any children: 

counseling "before the fact", such 

should be a major goal of any 

genetic prevention program. 

Screening of Newborn 

Infants__________ 

PKU, congenital hypothyroidism 

and several other much rarer 

conditions that cause mental 

retardation can be detected in the 

newborn infant by testing a small 

specimen of blood, with a followup test done later, to verify the 

findings. Since the late 1960's, 

screening of newborn infants for 

PKU has become routine as a 

means of identifying affected 

infants so that dietary treatment 

may be instituted before brain 

damage occurs. In 43 states, 

screening is required by law, and 

in other states it is provided 

voluntarily. 

In a few but increasing number 

of states, the same blood samples 

are used to test for congenital 

hypothyroidism and some of the 

rarer conditions as well. Early 

identification of the infant with 

congenital hypothyroidism will 

lead to early treatment with 

thyroid hormone—again, before 

the onset of significant brain 

damage. 

While blood specimens obtained 

for PKU and hypothyroid 

screening could be used to test for 

additional metabolic abnormalities, 

the cost of these tests keeps them 

from being added since the 

incidence of most metabolic 

diseases is so low. Also, not all 

maternity hospitals and medical 

centers have the laboratory 

3 
facilities for accurate analysis, so 

the samples are frequently sent to 

a central laboratory for testing. 

There are, at present, over 100 

regional laboratories including 

five that handle screening for 

several States. One of these larger 

testing centers is in Oregon. It 

tests blood samples from babies 

born in Oregon, Idaho, Montana, 

Nevada, and Alaska. Another one, 

in Massachusetts, does tests for 

Connecticut, New Hampshire, 

Maine, and Rhode Island, as well 

as Massachusetts. A third network 

in Colorado does testing for 

Arizona, New Mexico and 

Wyoming. Maryland tests blood 

samples from babies born in 

Delaware also. 

The regional laboratories in 

Oregon and Massachusetts are the 

largest. They test for several other 

genetically caused metabolic 

disorders besides PKU and 

hypothyroidism, including 

galactosemia, homocystinuria, 

tyrosinemia, maple syrup urine 

disease, and histidinemia. 

Although most of the other 

laboratories test only for PKU and 

sometimes for hypothyroidism, 

these other tests could be easily 

added, since all of them employ 

methods similar to those used in 

the PKU test. 

The low cost of these 

screening programs, coupled with 

their results in identifying 

children who might otherwise 

become retarded, make them 

highly cost-effective. For 

instance, since each screening 

costs approximately $2.50, the 

outcome of 10,000 screening tests 

can cost up to $25,000. But 

according to a PCMR 1978 

Legislative Proposal, the extra 

cost of care for a PKU child for 

life is at least $720,000 -- about 

30 times the cost. Then, if the 

child develops normally and 

lifetime earnings are added, the 

cost differential is even more. 

Mass screening is the most 

economical and logical approach 

when done in a few centralized 

laboratories, since each 

condition to be screened for is 

rare and the testing equipment 

expensive. Only one child in 

about 4,000 is born with 

hypothyroidism, and one in 

15,000 or more with PKU and 

even rarer disorders. To identify 

a few positive cases, a center 

should screen at least 25,000 

births a year and should be a 

regional one serving a 

population of several million. 

 As mentioned previously, 

genetic counseling must be made 

available to the parents of an 

affected infant identified in any 

screening program. For parents of 

a baby with PKU, for example, 

the risk of an affected baby 

resulting from any future 

pregnancy is one in four. Parents 

must have access to this 

information. 

 As new methods for screening 

are devised, the list of conditions 

meeting the criteria for screening 

will be lengthened, thus 

broadening the spectrum of 

preventable conditions. 

Screening to Identify 

Individuals and Couples 

At-risk for Having Affected 

Children____________

Genes occur in pairs. Each 

parent always passes one member 

of every pair of genes to any 

offspring. If both unaffected 

parents carry one normal gene and 

one abnormal gene, (each then 

being a heterozygote for the 

gene), there is one in four 

probability that each will pass the 

abnormal gene to an offspring. If 

that occurs the offspring will have 

the disease produced by the two 

abnormal genes. 

The objective of heterozygote 

screening programs is to identify 

those normal individuals and 

couples who carry one dose of an 

abnormal gene so that they can 

be provided genetic counseling 

before they have any children. To 

do so, a test must be available 

that specifically and accurately 

identifies the heterozygotes, and 

must be economically feasible. 

Practically speaking, economic 

feasibility also depends on the 

identification of a population in 

which the heterozygote is very 

frequent. 

A prime example of such a 

condition is Tay-Sachs Disease, 

mentioned earlier in this report. 

Approximately one in 3,600 

babies in Eastern European 

Jewish populations has TaySachs Disease, while only one in 

360,000 non- Jewish babies is 

affected. Approximately one in 

30 healthy persons in those same 

Jewish populations is a 

heterozygote for the gene that 

causes Tay-Sachs Disease. Thus, 

for Tay-Sachs Disease we have a 

population in which the 

frequency of the abnormal gene 

is quite high. 

Tay-Sachs Disease, like PKU, 

is caused by the deficiency of an 

enzyme. The missing enzyme in 

Tay-Sachs Disease is called 

hexosaminidase-A. The blood of 

affected babies contains very 

little of the enzyme. Even the 

blood of healthy heterozygotes 

for the Tay- Sachs genes 

contains less hexosaminidase-A 

than that of people who do not 

carry the gene. Consequently, 

heterozygotes can be identified 

by a simple, 

inexpensive blood test, that can 

be applied to large numbers of 

blood specimens. 

If both members of a couple 

are tested before they have 

children, and both are found to be 

heterozygotes for the Tay-Sachs 

gene, they can be provided 

genetic counseling, and can be 

offered options for pregnancy at 

a later time, including prenatal 

diagnosis for preventing the birth 

of an affected child. 

For heterozygote screening 

programs to be applicable, the 

target condition must be fairly 

frequent in the target population, 

and options for dealing with the 

attendant risk (for prevention of 

affected offspring) should be 

available. While newborn 

screening programs for the 

identification of infants affected 

with genetic disease can be 

defended on a mandated, 

population-wide basis, 

heterozygote screening programs 

should be voluntary, and should 

always be accompanied by a 

program of education of the target 

population relative to the im plication of the disease tested for, and to the genetic risks 

involved. Results must be made

 

4 
available to all persons and couples 

tested, but must be kept 

confidential. The availability of 

screening to a person or couple 

should never be predicated on a 

commitment by the couple or 

person to take any specific action 

on the basis of results provided to 

them. 

A second type of screening is on 

the horizon for normal parents who 

have a risk of producing abnormal 

offspring. About one in 1,000 or 

more babies born in the U.S.A. 

have an open spine defect (also 

called a neural tube defect). If the 

opening involves the head and 

brain, it is called anencephaly or 

encephalocele; if it involves the 

spine below the head it is termed a 

meningocele or meningomyelocele. 

All babies with anencephaly are 

stillborn or die in the first few 

days of life. Babies with the other 

forms of open spine defect may 

survive, but a significant portion 

has permanent paralysis of the 

legs and may have associated 

mental retardation. The blood of a 

pregnant woman whose unborn 

baby has an open spine defect 

contains excessive amounts of a 

protein called alpha fetoprotein 

(AFP). Pilot programs have 

been conducted in the U.S.A. on the 

feasibility of wide scale testing 

of AFP in the blood of pregnant 

women. While the test is not 

specific for open spine defects, it 

does identify those women whose 

unborn babies may be affected. 

They can then be offered more 

specific testing, including 

amniocentesis and ultrasonography. 

Within the near future, this test will 

be available nationwide and has the 

outlook of being very reliable in the 

prevention of one major cause of 

mental retardation. 

Like newborn screening, screening 

of normal parents at risk for 

producing mentally retarded 

offspring will encompass an ever 

widening spectrum of conditions as 

new technologies are developed. 

Genetic Diagnosis to Detect 

Fetal Abnormalities_______

Prenatal genetic diagnosis 

encompasses a number of 

procedures designed to assess the 

condition of the unborn baby. 

They include ultrasonography, 

radiography, and amniocentesis. 

Test results provide information 

to parents, relative to a selected 

group of conditions, on whether 

their unborn baby will have the 

condition tested for. It is offered 

for two reasons: first, if the 

unborn baby is found not to have 

the condition for which the test is 

done, they can be reassured; 

secondly, if the unborn baby is 

found to be affected, the parents 

can be offered the opportunity to 

terminate the pregnancy. 

Occasionally, third and 

fourth reasons apply: even if 

parents do not opt to terminate the 

pregnancy if their unborn baby is 

found to be abnormal, they may 

wish to have prenatal diagnosis to 

prepare them for the birth of an 

abnormal infant. In a few 

conditions, prenatal diagnosis of a 

treatable condition will allow 

institution of treatment 

immediately after birth with no 

delay in diagnosis. 

Transabdominal amniocentesis is 

the most widely used method of 

prenatal diagnosis. The unborn baby 

is surrounded in the uterus (womb) 

by a fluid called amniotic fluid. The 

fluid contains chemical compounds 

originating in the unborn baby, plus 

cells derived from the unborn baby. 

Measurement of chemicals in the 

fluid can lead to the detection of 

some abnormal conditions. The cells 

contained in the fluid can be 

stimulated to grow in the laboratory, 

and on those cultured cells chemical 

tests and chromosome studies can be 

performed. 

The most frequent and best 

known chromosome abnormality 

that produces mental retardation is 

trisomy for chromosome 21, 

resulting in Down's syndrome. 

Potentially, any chromosome 

abnormality can be detected in the 

unborn baby through a study of 

amniotic cells. 

A number of metabolic diseases 

that produce mental retardation are 

also reflected in chemical assays 

performed on cultured amniotic 

cells, including Tay-Sachs 

Disease. In addition, the increased 

concentration of AFP in the 

amniotic fluid itself may indicate 

an abnormal baby, including the 

presence of an open spinal defect. 

The number of genetic disease 

detectable in the unborn baby is 

likely to increase significantly in 

the near future because of the 

development of new techniques 

that are "spin-offs" of DNA 

research. 

Amniocentesis is ordinarily 

performed in the 14th to16th week 

of pregnancy, measured from the 

first day of the mother's last 

menstrual period. It is widely 

accepted because of its high level 

of accuracy in diagnosis—more 

than 99 percent—and its low 

procedural risk—only about 0.5 

percent at most. The procedure 

involves the insertion of a thin 

hollow needle through the wall of 

the mother's abdomen, through 

the wall of the uterus, into the sac 

containing the unborn baby and its 

surrounding amniotic fluid. 

Approximately one ounce of fluid 

is withdrawn into a plastic syringe. 

Using the fluid, biochemical tests 

can be performed, uncultured cells 

can be tested for some conditions, 

and cells can be placed in culture 

for chromosome studies and other 

biochemical tests. 

Since the procedure does have 

some small risk, specifically for the 

unborn baby, the prospective 

patient is always counseled about 

the risks and the limitations of the 

procedure before it is done. 

Studies conducted in the U.S.A., 

Canada, and Britain have not 

differed significantly relative to risk. 

The risk of importance involves 

miscarriage (spontaneous abortion) 

following the procedure. As noted 

above, that risk is in the range of 0.5 

percent. 

Amniocentesis should always be 

preceded by an ultrasonogram. This 

technique involves the passage of 

ultrasonic waves through the 

5 
abdomen of the pregnant woman 

and their detection by a sensor on 

the abdominal wall. It appears to 

be harmless, and provides an 

image of the uterus and its 

contents, the unborn baby and the 

placenta. An ultra sonogram is 

done prior to amniocentesis in 

order to determine whether the 

uterus contains one or more than 

one fetus, to determine the stage 

of pregnancy (how many weeks), 

to determine the position of the 

placenta so the obstetrician can 

avoid the placenta in performing 

the amniocentesis, to be certain 

the fetus is alive, and to detect 

certain birth defects. 

Ultrasonography may detect such 

abnormalities as a small or large 

head, an open spinal defect, or 

others. Thus ultrasonography has 

a role in detecting certain 

abnormalities itself in addition to 

its role in preceding 

amniocentesis. 

The skeleton of the unborn baby 

is visible by radiography (x-ray) 

by about 20 weeks gestation and 

may be used to detect certain 

conditions associated with bone 

abnormal- ities. Certain x-ray 

contrast materials may be injected 

into the amniotic fluid to outline 

the newborn baby in an effort to 

detect some abnormalities. 

The following situations have 

been widely employed as 

indications for offering prenatal 

diagnostic procedures to women 

at risk for having abnormal 

babies: 

1) The woman who has a baby 

 when she is 35 years of age 

 or older. It has been shown 

 conclusively that, as women 

 become older, their risk of 

 having babies with certain 

 chromosome abnormalities 

 increases. For example, for 

 women under 30, the chance 

of having a baby with 

Down's syndrome is less than 

one in 1,000. By age 35, the 

risk has increased to slightly 

over one in 400. At age 40 the 

risk is approximately one in 

100; by 45 it is about one in 

32, and at age 50 it approaches 

one in ten. 

Because of this maternal-age 

related risk, it is the practice 

in most centers for women 

who will bear a baby at age 

35 or over to be offered 

amniocentesis. Advanced 

maternal age is the reason 

for over 75 percent of all 

amniocenteses. 

2) The previous birth of a baby 

with a chromosome 

abnormality. A woman who 

has had a baby with a 

chromosome abnormality may 

be at increased risk for having 

another baby with a 

chromosomes abnormality. For 

example, even at a young age, if 

a woman has had a baby with 

Down's syndrome, her risk of a 

second affected baby 

approaches one percent. 

3) A chromosome abnormality 

in a parent. Some 

chromosome abnormalities, 

termed balanced 

translocations, produce no 

abnormality in the people 

who have them. However, 

those carriers of 

translocations have a risk of 

producing abnormal, 

mentally retarded offspring 

significantly greater than the 

general population. Such a 

carrier may have a 15 percent 

or greater risk of producing an 

abnormal offspring. 

4) Couples in which both 

members have been shown to 

be heterozygotes for the same 

recessive abnormal gene. Such 

couples have a risk of one in 

four of producing an affected 

offspring with each pregnancy. 

If a test is available for the 

disease in question, those 

couples should be offered 

amniocentesis. 

5) A woman who has previously 

had a baby with an open 

spine defect. About one in 

1,000 babies born has such a 

defect. A mother who has 

previously had an affected 

baby has a risk of about two 

percent of having another 

affected infant with any future 

pregnancy. In addition, a few 

women have survived an open 

spine defect themselves and 

are able to have children. Their 

risk for an affected infant is 

also in the two to three percent 

range. While not a specific test 

for open spine defect, an 

increased concentration of AFP 

in the amniotic fluid may 

signify the presence of an open 

spine defect in the unborn 

baby. It appears that another 

compound called 

acetylcholinesterase, if present 

in the amniotic fluid in 

abnormally high concentration, 

is much more specific for open 

spinal defects, and can be used 

to confirm an elevated AFP 

concentration. Any woman 

who has had a previous baby 

with an open spinal defect or 

who, herself, has had an open 

spinal defect, should be made 

aware of the availability of 

amniocentesis. 

Ultrasonography may also be 

helpful in detecting an open 

spinal defect. 

6) A woman known to be a 

heterozygote for an 

abnormal gene located in the 

X chromosome. Such 

abnormal genes produce 

disease only in males 

(examples are hemophilia and 

Duchene muscular dystrophy) 

but are transmitted by 

unaffected heterozygous 

mothers. Most such conditions 

are not diagnosable prenatally, 

but the pregnant woman may 

request an amniocentesis to 

determine the sex of the 

unborn baby. If the baby is a 

female, she cannot be affected; 

if a male, he has a one in two 

chance of being affected. 

Other less clear-cut indications 

for prenatal diagnostic procedures 

are a family history of 

chromosome abnormalities (other 

than a previous affected child); a 

previous child with multiple birth 

defects of unknown cause; and a 

history of multiple miscarriages. 

While the detection of an abnormal 

baby by prenatal diagnosis may lead 

to a therapeutic abortion, recent 

evidence indicates that there are 

fewer such pregnancy terminations 

now than there were before prenatal 

diagnosis became available. 

6
Previously, pregnant women at risk for affected 

offspring sought a therapeutic abortion simply on 

the basis of their risk and without informed 

knowledge. 

Only about two to three percent of prenatal 

diagnostic procedures produce abnormal results. 

While by no means the ultimate answer to the 

prevention of mental retardation, prenatal 

diagnosis provides parents an option not 

previously possible. 

PERINATAL 

INTENSIVE CARE

Perinatal intensive care is an important factor in 

the prevention of retardation, as well as in the 

reduction of the perinatal infant mortality rate. It 

has been used most particularly for the low birthweight premature infant, who is generally unable 

to survive without such care. 

The survival rate for these infants has increased 

dramatically in the last decade, as reported by 

Children's Hospital Medical Center in Washington, 

D.C. Prior to 1970, the majority of babies under 3 

1/2 pounds died. But now the majority survives 

down to 21/2 pounds. Even the survival rates for 

babies under 21/2 pounds have been improved. 

Until about 1975, the survival of these babies was 

rare, but now up to 60 percent of the infants from 

11/2 to 21/2 pounds survive in some nurseries. The 

survival rates are highest in hospitals that have 

referral systems to place high-risk newborns in 

immediate intensive care. In hospitals without such 

facilities, the rate is much lower. 

Such improvements in newborn infant care have 

not only increased survival chances, but they have 

also contributed to an increase in the health and IQ 

of those infants that do survive. This increase is 

important, since low birth-weight and premature 

infants are at a high risk for becoming mentally 

retarded, due to birth complications, lowered 

resistance to infections, lack of fully developed 

nervous systems, and other factors. 

In six studies from the 1950's and 1960's, 30-40 

percent of the newborns who are under 3 1/2 

pounds at birth had developmental quotients 

(DQ's) of less than 90 at one year, and about 1/3 

had severe central nervous system defects, 

including cerebral palsy. However, now these 

problems affect only about five to ten percent of 

low birth- weight newborns. 

At the same time, there are still major risks of 

being handicapped for the low birth-weight baby, 

particularly if it is also premature. For example, 

babies under 51/2 pounds are about ten times as 

likely to develop mental retardation as those over 

this weight. Also, intraventricular hemorrhage 

frequently occurs in low birth-weight premature 

babies, and many of these small, premature babies 

develop cerebral palsy, often associated with 

mental retardation. 

Thus, while the new technology has contributed 

to helping premature and low birth-weight infants 

survive, still further development is necessary and 

the long-term impact of this new technology still 

needs to be determined through further follow- up. 

This long-term approach is necessary, since at one 

or two years the mean DQ or IQ of the surviving 

premature babies can appear normal. However, at 

school age, some of those premature infants who 

have been followed have perceptual defects, 

learning difficulties and behavioral problems. 

Thus, better early indicators are needed to identify 

infants who will subsequently become 

handicapped. 

These data suggest that the intensive care given 

low birth- weight infants has been successful in 

not only helping them survive, but also in helping 

most of them survive as normal, healthy babies. 

7
Columbia 

University: 

Coordinating 

Perinatal Services 

Through a 

Perinatal Network

 One of the major problems in 

American medicine is a lack of 

organized medical care, leading to 

the misdistribution of resources and 

available services. In the perinatal 

field, major technical advances have 

made medical personnel increasingly 

aware of the need for organized 

planning, since this advanced 

technology (such as electronic fetal 

and maternal monitors, and genetic 

testing) can be used to give low 

birth-weight and otherwise at-risk 

infants an increased chance of 

survival. 

 But many infants do not have 

access to it, since traditionally 

hospitals have operated independently, and obstetrical and neonatal 

services have been set up without 

regional planning. The result has 

been that while some hospitals have 

adequate neonatal services, others do 

not. In turn, the infants born where 

services are lacking have not had 

good access to intensive care services 

when needed, since the coordination 

with nearby intensive care units has 

been haphazard. 

To help resolve this problem, the 

Robert Wood Johnson Foundation 

funded eight regional centers to 

develop and offer model programs 

showing the value of regionalization 

in improving health care, reducing 

of Columbia University. Membership 

in the Network is open to all 

hospitals in the region delivering 

obstetrical and newborn care. 

 Regional Perinatal Network, 

administered by the College of 

Physicians and Surgeons 

Manhattan joined the Network—

Presbyterian, Harlem, St. Luke's, 

Roosevelt, Syndenham, FrenchPolyclinic, and Jewish Memorial. In 

1979, as testimony to the program's 

success, two more hospitals outside 

the region joined: Good Samaritan 

in Suffern, New York, and Stamford 

Hospital in Stamford, Connecticut. 

Four other hospitals 

in New Jersey have also asked to 

join. Approximately 20,500 delivers 

are handled by the network hospitals 

annually. 

A key feature of the program is 

that any affiliated hospital can send 

its premature and critically ill 

newborns to the neonatal intensive 

care unit at Presbyterian Hospital for 

evaluation and treatment. In 

addition, doctors in community 

hospitals can transfer their patients 

to Presbyterian and deliver them 

there—an important benefit for 

doctors in smaller hospitals with less 

technological support. Overall, 

about 150 newborns have been 

transported each year and about 150 

mothers have been transferred prior 

to delivery. 

 Some other major features of 

the program include the following: 

1) A regional perinatal 

conference is held each month 

with perinatologists, 

neonatologists, and other 

health professionals from all 

participating hospitals. 

This 

8 
conference helps hospitals in 

the network establish standard 

practices and review current 

activities. Also, it is a forum for 

presenting regional statistics 

and discussing cases and 

clinical issues. 

) A common record system has 

been developed for all hospitals 

in the Network. Importantly, 

this system keeps track of data 

on all births, which are 

recorded, and entered into a 

computerized data file for easy 

access and analysis. 

) Combined efforts have been 

effective in changing the 

policies of other agencies when 

these policies have been 

detrimental to providing care. 

For example, Network members 

were able to persuade the New 

York State Department of Social 

Services to abandon its 

"four-month rule" requiring 

patients to be four months 

pregnant before applying for 

Medicaid. Because of the two 

months needed to process these 

applications, this rule prevented 

pregnant women from getting 

prenatal care until the third 

trimester. Now, financially 

eligible patients can apply once 

their pregnancy is medically 

verified. 

4) Network efforts have been 

effective in sensitizing 

government officials about the 

importance of prenatal care 

and the need to remove 

financial barriers to such care. 

For instance, the Network 

referred to the Governor of 

New York a report it prepared 

on the problems of 

unregistered obstetrical 

patients who did not receive 

prenatal care because of 

financial need and suffered 

more complications in 

pregnancy. As a result of this 

report, the Governor has made 

the provision of prenatal care a 

priority item in his health 

message. Also, several 

Network staff assisted in 

drafting preliminary legislation 

2

3

on this issue. 

5) The Network has developed 

outreach activities to inform 

relevant community agencies 

and targeted high-risk 

populations abut its programs. 

For example, the Network's 

Community Liaison 

Committee, composed of 

representatives from various 

hospitals, has advised 

community agencies and 

leaders about Network 

activities. Other staff 

members have given perinatal 

care lectures in Harlem to 

encourage the high-risk Black 

population there to seek care. 

Still others have distributed 

pregnancy testing kits to 

Harlem Hospital, where the 

perinatal and neonatal death 

rates have been especially 

high. Also, the Network 

developed a brochure for 

teenagers on where to go for 

pregnancy tests, family 

planning, prenatal care, health 

education, and counseling, 

and it prepared a guide to 

maternal health services to 

help Network health 

professionals and New York 

City Health Department 

outreach workers in advising 

prospective mothers. 

6) The Network established a 

hotline phone number to refer 

patients with pregnancyrelated problems to 

appropriate services, and 

thousands of callers have 

used the number. 

7) Also, the Network has 

engaged in extensive 

educational activities. These 

include: 

• Active nursing education 

program of full-day 

workshops and short 

courses offering the latest 

information on neonatal 

and perinatal techniques. 

9 
 An in-service educational 

program for Health 

Department outreach 

workers with information on 

perinatal case finding, 

referral, follow-up and 

current labor and delivery 

practices to help them locate 

and assist pregnant women. 

8) Finally, the Network has 

engaged in important research 

and evaluation efforts. These 

include: 

 An investigation of the costs 

of regionalization, and a 

cost analysis of charges for 

the services offered by 

Presbyterian Hospital's 

neonatal care unit. This cost 

analysis has involved 

determining the charges for 

both routine and ancillary 

services, including room 

and board, x-rays, and 

laboratory tests. 

 Review of the data from 

the uniform records to 

evaluate the Network's 

success in cutting down the

rates of stillbirths and 

neonatal deaths. 

 The preparation of a report 

on unregistered obstetrical 

patients in four Network 

hospitals. This report 

revealed some important 

characteristics about these 

patients, such as a much 

higher incidence of 

complications in pregnancy 

and a higher perinatal 

morbidity rate compared to 

registered patients. It also 

indicated that their major 

reason for not receiving 

prenatal care was having no 

money or no insurance. 

 Since the Network is only in its 

fourth year, the results are still 

being evaluated. However, the 

program is clearly successful: 

neonatal and perinatal death 

rates have dropped significantly 

in the region since the program 

began. 

For example, the neonatal death 

rate dropped from 17.5 per 

1,000 in 1976 to 11.5 in 1978, 

while the perinatal death rate 

dropped from 24 to 19 per 1,000 

in this same period. 

This significant decline occurred 

because the regionalization 

approach has allowed high risk 

mothers and infants to have better 

access to intensive perinatal and 

neonatal care facilities, and this 

improved care has increased the 

infants' chances for survival. The 

data show that better technology had 

this effect, since the neonatal and 

perinatal death rates for babies 

under 1,000 grams were much lower 

at Presbyterian Hospital, which has 

the intensive care unit, compared to 

other hospitals in the region. At 

Presbyterian, the neonatal death rate 

was only 585 per 1,000 compared to 

600-750 in other hospitals, and the 

perinatal death rate only 630 per 

1,000 compared to 714-900

elsewhere.________________

Memphis: 

Preventing Mental 

Retardation 

Through a 

Comprehensive 

Program of 

Genetic Counseling 

and Screening____

The Comprehensive Genetics 

Program at the University of 

Tennessee Center for the Health 

Sciences in Memphis, with its 

emphasis on genetic counseling and 

screening, is committed to a broad 

range of education in genetics, and 

its research program is designed to 

make a significant impact on the 

prevention of genetically caused 

mental retardation. 

 The Genetics Program has been 

funded since 1964 through multiple 

sources, including the University of 

Tennessee's education and research 

funds, a grant from the Maternal and 

Child Health Division of the U.S. 

Department of Health and Human 

Services, a contract from the 

Department of Public Health of the 

State of Tennessee (in relation to a 

statewide genetic program funded by 

the National Genetic Disease Act), 

grants and contracts from the 

National Institutes of Health, a grant 

from the State of Tennessee 

Department of Mental Health, grants 

from the National Foundation March 

of Dimes, 

and from the National Council of 

Jewish Women. The comprehensive 

program involves physicians, 

medical geneticists, laboratory 

scientists, social workers, 

researchers and technologists. 

 Working as a team, these staff 

members provide comprehensive 

genetic services to individuals 

with genetic or possible genetic 

disease and to individuals and 

couples at- risk for producing 

offspring with genetically 

determined abnormalities who 

live in an eight-State area 

representing a population of about 

10 
six million. The majority of persons 

served come from Tennessee and 

parts of Arkansas and Mississippi, 

with smaller numbers from 

Kentucky, Missouri, Illinois, 

Louisiana and Alabama. Patients 

have come from as far away as 

Spain, Puerto Rico, and Venezuela. 

The program is located in a 

University Affiliated Facility 

(UAF). It provides a full range of 

clinical and laboratory services 

that include genetic diagnosis, 

counseling, screening, 

intervention and management, 

and also includes a training 

component in which medical and 

dental students, physicians and 

dentists in graduate training, and 

other health care professionals 

learn medical genetics. Staff 

members engage in extensive 

educational efforts through 

seminars and symposia in 

Tennessee and other States, to 

acquaint health care personnel 

with the program so that they 

will be able to recognize genetic 

disease and genetic risks. 

In addition, a research 

component is designed to advance 

basic knowledge of genetic disease 

leading to mental retardation, and 

to develop new applied cytogenetic 

and biochemical technologies to 

improve diagnosis and 

management of genetic disease. 

For example, one study conducted 

by the Genetics Program found that 

of 500 unclassified mentally 

retarded children with congenital 

abnormalities, six percent had a 

causative chromosome abnormality, compared with less that one 

percent in normal controls. Other 

studies have clarified the causative 

relationship between certain 

chromosome abnormalities and 

mental retardation syndromes. In 

related metabolic screening 

programs, staff test urine and blood 

samples of children with 

mental retardation in search of 

abnormal metabolites. Diseases 

identifiable by these means include 

PKU and Tay - Sachs disease, as 

well as others. 

In the genetics clinic, couples atrisk for producing children with 

genetic disease are referred for 

counseling. In 1979, genetic 

services were provided to 777 new 

families. Among them were 296 

couples in which the wife 

underwent amniocentesis. Most of 

the amniocenteses were done 

because of advanced maternal age. 

Chromosome studies were done on 

947 individuals. 

In addition to the services 

described, the program at 

Tennessee provides follow-up 

evaluation for all newborns who 

have been found in the statewide 

screening program to have PKU. 

As a State reference laboratory, 

the biochemical genetics 

laboratory of the program 

determines if a newborn 

discovered by the screening 

program actually has PKU (the 

initial test may give false positive 

results). If so, dietary treatment is 

instituted and monitored to 

prevent mental retardation. 

The program's comprehensive 

team approach in cooperation with 

nutritionists, psychologists, social 

workers, nurses and pediatricians 

of the Child Development Center 

(UAF) is a key factor in its 
success, as are its research and 

education programs on the causes 

of mental retardation and 

strategies to prevent it. In 

addition, members of the staff of 

the program work with the news 

media and community groups to 

inform community members 

about its screening programs and 

to encourage their participation. 

An example is a program carried 

out in 1976 in which the Genetics 

Unit launched a campaign, at the 

request and with the support of 

leaders in the Jewish community of 

Memphis, to enlist Jewish people in 

Memphis to participate in a citywide 

screening program to identify 

carriers of the gene for Tay-Sachs 

Disease. 

Another key factor in the 

success of the Genetics Program is 

its affiliation with an early 

intervention program at the 

University's Child Development 

Center, a UAF. When an infant with 

a genetic disease such as Down's 

syndrome is identified, the infant is 

referred to the program for early and 

concentrated stimulation. The 

program is open to infants and 

children up to three years of age. 

Parents bring them to the Center for 

one-half day each week for motor 

and sensory stimulation, social 

activities and early language 

instruction. In addition, parents learn 

how to stimulate their children at 

home. 

Research conducted by staff at the 

Center has shown this stimulation 

approach to be extremely effective. 

For example, when researchers 

compared 40 Down's syndrome 

children in the program to 40 nonparticipants with the same 

syndrome, they found that the 

infants who started 

in the program before six months 

showed a much greater rate of 

development. Subsequently, a 

follow-up study of 20 of the 

children, three to six years of age, 

revealed that 65 percent of the 

children who had been in the 

program tested at the borderline or 

mild level of retardation, 

compared to only 24 percent of the 

children who had not participated. 
The Rose F. 

Kennedy Center for 

Mental Retardation 

nt: 

"LIFE" Program__

and Human 

Developme

Research, 

Evaluation and 

Helping the Low 

Birth-weight Infant 

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The premature, low birth-weigh

baby has about a 15 times higher 

risk of retardation than the normal 

infant born at term with a normal 

weight. They are also more likel

to have language disorder

other forms of

sfunction. 

At the Rose F. Kennedy 

Center, located at the Albert 

Einstein College of Medicine, 

Bronx, New York, several new

programs are designed to

with this type of infant. 

Collectively, they are called 

the "LIFE Program," which 

stands for "Low BirthInfant Follow-up and 

Evaluation Program". Under 

this umbrella are two major 

research and assessment 

programs: (1) a program to 

evaluate the effects of bra

damage in the low birthweight baby on his subsequent 

development and (2) 

follow-up and early 

intervention program to help 

parents of a low birth-weight 

baby to understan

ith their child. 

The research program use

approaches to assess brain 

functioning and damage, if any. 

First, a unique integ

of morphological, 

neuro-behavioral, and 

electro-physiological tec

are used to assess brain 

functioning to detect brain 

damage in the high- risk infant 

weighing less than 1,500 grams 

birth, and to identify biological 

causes of this damage. Th

re
consequences of this 

abnormality for subsequent 

neurological and behavioral 

development, particularly in 

vision and hearing. 

A key research goal is to 

enable medical personnel to 

define the newborn's brain 

status accurately and to provide 

an accurate prognosis for its 

development. Also, the 

research is designed to assist 

medical personnel in providing 

early intervention to correct 

specific neurobehavioral 

disorders. 

Since the start of the project 

in 1979, 112 infants under 

1,500 grams have been 

admitted as patients, and 51 are 

still being followed 

longitudinally. The other 

infants have dropped out due to 

various factors, the majority 

(46) as a result of death in this 

very high-risk population. 

Infants are carefully observed 

while in the hospital. Each day the 

nursing staff takes a daily medical 

profile of all clinical and 

biochemical events, and each 

week they do a neurobehavioral 

assessment, using the newly 

developed Einstein Neurobehavioral Assessment Scale 

(ENBAS). Also, they measure the 

infant's head circumference and 

weight. Then, when the infant 

reaches an age of 40 weeks post 

conception, he participates in a 

full testing program. This includes 

the usual medical assessment, 

head and weight measurements, 

and ENBAS test, plus an electrophysiological assessment to 

determine potential in vision, 

hearing the motor-touch behavior. 

Later, in the first and second 

years of life, there are additional 

tests, including a physicalneurological exam, an electroencephalogram, a visual scanning 

test, the Bayley Infant Scale Test, 

language evaluation, and visual 

and auditory tests. 

The preliminary results of this 

research study are now being 

assessed and are expected to 

provide important information on 

the relationship between brain 

development and subsequent 

behavior in the low birth-weight 

baby. 

The other research program to 

assess the low birth-weight 

newborn's level of brain 

functioning involves the Einstein 

Neonatal Neurobehavioral 

Assessment Scale (ENNS). 

A key rationale for this 

program is that if infants 

with nervous system 

disorders can be identified in 

the newborn period, their 

potential for development 

can be evaluated and they 

can be treated accordingly. 

To achieve these goals the 

ENNS test is given to the 

infants each week from birth 

to 40 weeks of age to obtain 

sequential data on their 

neurobehavioral functioning 

and sensory abilities, as 

compared to normal full-term 

infants. This comparison is 

made by looking at how both 

types of infants perform on 

24 different measures testing 

their reaction to different 

kin& of stimuli, such as 

being lifted, stroked, hearing 

noises, and seeing objects. In 

this way, the infant's 

response level can be 

determined for a variety of 

responses, including sucking, 

visual following, auditory

orienting, blinking, 

grasping, traction, 

withdrawal from painful 

stimuli, rotation, 

movement and other areas. 

In addition, the test rates 

the child's 

14 
general cuddliness, 

spontaneous movements, 

temperament, and muscle 

tone. 

The researchers are 

particularly interested in 

exploring major 

deficiencies in visual and 

auditory responsiveness, 

since such deficiencies 

occur in almost all low 

birth-weight babies. 

A major study using this 

technique has been 

conducted by Diane 

Kurtzberg and other Center 

researchers, using low 

birth-weight and normal 

infants born between June 

1975 and July 1976 at the 

Abraham Jacobi Hospital of 

the Bronx Municipal 

Hospital Center. The 

researchers selected 118 

low birth-weight infants (49 

males and 69 females) from 

the neonatal Intensive Care 

Unit who weighed less than 

2,250 grams at birth, and 

compared them with 76 

normal full-term infants (39 

males and 37 females) who 

weighed 3,580 grams or 

more. 

The differences were 

striking. The most dramatic 

were in visual and auditory 

behavior, where the low 

birth-weight babies showed 

markedly less visual and 

auditory responsiveness than 

full-term infants. 

Also, the researchers 

found that compared to fullterm babies, the low birthweight infants showed less 

ability in traction, head 

extension, responses, 

rooting, sucking, and 

grasping. Over 20 

percent of the low birthweight infants had poorer 

muscle tone. They were also 

less likely to cuddle or 

spontaneously cling to the 

tester, and were much more 

likely to cry. 

Even so, the researchers 

found much variation among 

individual low birth-weight 

infants, and are still 

assessing the impact of 

different variables on 

subsequent development. 

For example, they believe 

the identification of a 

deviant neurobehavioral 

performance can be used to 

assign a deviant infant for a 

more detailed neurological 

and developmental 

evaluation. The program is 

unique in being the first to 

use this approach. 

 The other major element of 

the LIFE program involves 

early intervention with highrisk low birth-weight infants 

to achieve three main goals: 

making parents more aware 

that a low birth-weight baby 

is different; helping parents 

understand and cope with any 

abnormal neurobehavioral 

development, and 

encouraging parents to 

participate actively in 

intervention efforts to help 

their child develop. 

At a weekly parent's group 

meeting, parents discuss 

current problems and 

concerns. In addition, nurses 

from the center make five 

home visits in the first year of 

the child's life to evaluate 

the number and quality of 

parent- child interactions in 

the home, and encourage 

more of them. Also, 

participating parents bring 

their children to the center 

each month for a well baby 

check-up which involves a 

complete physical, 

neurological, and electrophysiological evaluation. The 

staff uses these tests results to 

help determine intervention 

strategies. 

 When low birth-weight 

children develop abnormally, 

the Rose F. Kennedy Center 

has, through its Children's 

Evaluation and Rehabilitation 

Clinic, a large diagnostic and 

treatment center serving 

4,600 children annually. The 

clinic uses a multidisciplinary 

team approach to provide aid 

in all areas of child 

development— language, 

cognition, motor, and social 

activity—to four categories 

of children: 1) infants or 

toddlers with developmental 

problems, 2) school-age 

children with these problems, 

3) children with cognitive 

disorders; and 4) children 

who are physically 

handicapped. Each team 

includes at least one 

pediatrician, psychologist, 

social worker, speech 

pathologist, and other 

medical specialists or special 

educators where appropriate. 
IMMUNIZATION

An important aspect in the 

prevention of mental retardation 

is the prevention of infections and 

immunologic reactions that may 

result in retardation. According to 

the Director of the Bureau of 

Biologics in the Food and Drug 

Administration, several thousand 

infants were prevented from 

developing brain damage due to 

protection provided by three 

forms of immunization: 

immunization of future mothers 

against rubella (German measles); 

the administration of Rh immune 

globulin to Rh negative mothers 

with Rh positive husbands who 

have had an Rh positive baby; 

and immunization of infants 

against measles. Immunization of 

children against measles and 

rubella confers long-term 

protection against the viruses that 

produce those infections. Blood 

incompatibilities (especially those 

involving the Rh blood factor) 

between mother and unborn 

infant may lead to severe mental 

retardation unless the infant's 

blood is exchanged completely 

with matching blood from 

another person. In most cases, the 

first baby of an Rh negative 

mother who has an Rh positive 

husband has no problem. That 

pregnancy, if the baby is Rh 

positive,"sensitizes" the mother 

so that she produces damaging 

antibodies against future 

Rh positive babies. That 

sensitization can be prevented if, 

immediately following the birth 

of her first (and any subsequent) 

Rh positive baby, she is given 

Rh immune globulin. 

Immunization prevents mental 

retardation in an offspring by 

protecting the mother against the 

disease condition that would 

produce retardation in that 

offspring. Retardation in her 

offspring would occur as 

follows: The mother is exposed 

to the organism (rubella virus for 

example) during her pregnancy 

and, after exposure, develops the 

infection. During the infection, 

even if it is so mild that it is not 

recognized, the virus may travel 

through the mother's 

bloodstream to the placenta, 

where it settles. 

Then, as it multiplies, it spreads 

through the unborn infant's blood 

where it creates a chronic, 

persistent infection that interferes 

with the development of or 

causes direct damage in key 

organs such as the brain, eye and 

heart. Congenital defects result 

from this infection, and in about 

half of the cases mental 

retardation occurs. 

By contrast, if the mother is 

protected by having been 

immunized prior to her pregnancy 

with live virus vaccine (rubella 

for example,), infection will not 

develop during pregnancy. The 

live virus vaccine, if given in 

childhood for example, does not 

produce recognizable infection 

but does result in the production 

of antibodies that prevent future 

infection. A woman should not be 

immunized when she is pregnant, 

since the virus in the vaccine, 

even though it has been 

"attenuated." could possibly 

infect the unborn baby and 

produce problems. 

The effectiveness of 

immunization programs against 

rubella has been demonstrated 

emphatically by the fact that no 

major outbreak of rubella has 

occurred in the 15 years since 

such programs were widely 

employed following the 1963-64 

outbreak of rubella. 

Similarly, Rh immune 

globulin has proved to be nearly 

100 percent effective in 

preventing Rh disease-damage 

babies in Rh negative women 

who received it following the 

birth of prior Rh positive babies. 

Measles vaccine has likewise 

been effective in preventing 

measles, an infection that, in 

young children, may result in 

brain damage and permanent 

mental retardation. 

The major problem has been 

the fact that, even in this age of 

enlightenment, many children 

are not immunized against 

rubella or measles. Parents 

simply have not realized the 

importance of having their 

children immunized, and 

immunization programs have 

not been as aggressive as they 

should have been. A significant 

proportion of school-aged 

children have not been 

vaccinated, and increasing 

numbers of women and 

girls entering their childbearing 

years have never been 

immunized against rubella. 

Vaccines against other 

infections are under 

development that may have a 

major impact in preventing 

retardation due to bacterial 

infections that affect the infant 

and young child. Perhaps the 

most serious such infection is 

meningitis, a major source of 

brain damage, which is caused 

by three major types of bacteria; 

Group B streptococcus, E. coli, 

and H. influenza type B. About 

one in 1,500 newborn infants, or 

about 2,000 infants each year, 

develop meningitis due to 

bacteria, while about 10,000-

12,000 older infants and 

children are affected. In the case 

of newborn infants, 25-50 

percent die, while most of those 

who survive are left with 

permanent brain damage. 

Among older infants and 

children, about 50 percent are 

permanently damaged. 

However, vaccines preventing 

infection by these forms of 

bacteria will be available by the 

end of the decade, which should 

make bacterial meningitis 

largely preventable.
SECTION II: 

ENVIRONMENTAL 

PREVENTION: 

PROGRAMS 

THAT WORK____

 Most of the mild forms of 

mental retardation have no 

apparent physical cause, and may 

be due to adverse environmental 

conditions experienced in early 

childhood. According to the 

American Association on Mental 

Deficiency, about 89% of all 

mentally retarded individuals are 

mildly retarded, and for 

practically all of the individuals in 

this category there is no 

identifiable organic cause of their 

condition. 

The problem is usually ascribed 

to sociocultural and psychological 

factors, and requires prevention 

strategies using knowledge from 

the behavioral sciences. This is in 

contrast to the biomedical 

treatment usually appropriate for 

the prevention of severe 

retardation, which is generally 

ascribed to physical causes. 

According to a 1977 "National 

Multicultural Seminar on Mental 

Retardation Among Minority 

Disadvantaged Populations" held in 

Norfolk, Virginia, such behavioral 

approaches must deal with the 

environmental causes of retardation 

among disadvantaged people. These 

include dealing with prejudicial 

attitudes and discriminating practices 

based on race, ethnic membership or 

social class. Such attitudes and 

practices contribute to the 

impoverished, deprived environment 

of many low-income and minority 

people and have a part in the 

development of retardation in their 

children. 

Authorities in the field of mental 

retardation suggest some 

supplemental approaches, which 

include parent training in child 

rearing practices, compensatory, 

preschool, and special elementary 

instruction based on appropriate 

theories and techniques. 

 Parent training should teach the 

parents the appropriate behavioral 

management techniques to enhance 

their children's development in 

skills, knowledge, and motivation. 

The preschool phase should give the 

child the opportunity for social and 

pre-academic development so he or 

she can develop normally and be 

prepared for successful participation 

in first grade. Finally, the special 

elementary school program should 

help the child master language and 

basic academic skills—reading, 

writing, and arithmetic—and 

motivate him to apply these skills 

with little or no assistance. 

 Children born and raised in urban 

ghettos or impoverished rural areas 

are more likely to be diagnosed as 

mentally retarded than are children 

from middle-class suburban 

neighborhoods. One reason the 

generally deprived intellectual 

environment in which such children 

have been nurtured, combined with 

numerous other problems linked 

with poverty: poor nutrition, 

unhealthy living conditions, poor 

child care, family emotional 

problems, inadequate educational 

programs, and related aspects of 

deprivation. 

 Often, minority and low-income 

children with average intelligence 

are inappropriately identified as 

mentally retarded, due to cultural 

and language differences. The 

reason, generally, is that public 

schools tend to use IQ scores to 

determine intelligence, without 

taking into account the effect of 

culture, socio-economic status, 

language, and environment on 

these scores. For example, a 

number of studies have shown that 

standardized test norms are 

inadequate for determining 

intelligence and that the 

inappropriate labeling of minority 

children as retarded has serious, 

adverse affects on their lives. 

Unfortunately, some of the 

studies themselves contribute to 

the labeling process, since they 

repeatedly show that minority 

students, particularly Black and 

Spanish-speaking, are more apt to 

be retarded than White children. 

Numerous research studies and 

reports indicate a correlation

between mental retardation and 

minority status and low-income.. 

As they point out, this correlation 

does not appear to be due to 

genetic or organic factors, but to 

the deprived environment in 

which such children are raised. 

Their living conditions present 

increased risks of poor health, 

infectious and toxic exposures, 

and low cognitive stimulation. To 

highlight this situation, at the 

1977 National Multicultural 

Seminar referred to previously, it 

was reported that 85-90 percent 

of those who are mildly retarded 

with no identifiable organic or 

physical cause were 

disadvantaged by environmental 

conditions such as poverty, racial 

and ethnic discrimination and 

family distress. Correspondingly, 

the retardation rates for Blacks, 

Puerto Ricans, American Indians, 

and disadvantaged Whites living 

in urban and rural poverty are 

especially high. 

Poor living conditions may 

also contribute to emotional 

problems of mentally retarded 

people. For example, the 

Director of the Mental Health 

and Mental Retardation Center 

in Philadelphia, found that 

about 35-50 percent of the 

mentally retarded clients treated 

at the center needed mental 

health care. Most of these were 

mildly retarded individuals 

subjected to 

17 
environmental stresses. 

Poverty and minority status are 

also implicated in the low use of 

available services for counseling, 

medical care, and child care 

assistance, which in turn 

compounds the problem. Often, 

low income individuals do not use 

services, such as perinatal care, 

that might prevent retardation, 

because they do not have the funds 

to do so. Their minority status 

may isolate them from knowing 

about available services, or they 

may have language problems which 

make it difficult to use the services. 

Whereas 75 percent of the 

majority women seek prenatal care 

in the first trimester of pregnancy, 

only 52 percent of the minority 

women do so. This lack of care 

contributes to many medical 

problems, such as malnutrition, 

toxemia in pregnancy, and 

premature births. 

In other cases, low income and 

minority status is associated with 

retardation because the deprived 

living conditions provide an 

unhealthy environment for the 

pregnant woman, newborn infant, 

or growing child. These conditions 

in turn, contribute to a high rate 

of lead poisoning, maternal and 

infant infections, malnutrition, and 

other factors considered in this 

report's discussion of retardation 

due to multifactor causes. 

A restricted environment not 

only hampers development but 

may also prevent the child's later 

response to a better environment. 

There appear to be critical 

developmental milestones during 

early childhood on which 

subsequent development is built. If 

the child misses any of these 

important steps, either because he 

is biologically handicapped or 

environmentally deprived, he may 

become more and more 

developmentally delayed. 

This deficiency is related in turn 

to the poor development of a 

linguistic system, which is 

symptomatic of a poorly developed 

conceptual system and 

characteristic of the mildly 

retarded child. Research by the 

University of North Carolina 

indicates that children with poor 

early linguistic development 

showed improved intellectual 

functioning after they participated 

in a developmentally oriented 

language training program. 

In some low-income homes, the 

child's opportunities for learning 

and adjustment are restricted by 

such factors as inadequate child 

care, parental indifference, and a 

lack of cognitive stimulation in the 

environment. These homes have 

few books and play materials, and 

there is limited verbal interaction, 

haphazard family routines, and 

minimal child care and teaching. 

Child abuse is another factor 

which contributes to delayed 

development and behavior 

disturbances regardless of income 

level. 

Obviously, severe physical abuse 

may cause organic damage or even 

death. But abuse also has drastic 

psychological consequences since it 

serves to break the important 

child-parent bond, whereby the 

parent serves as model from whom 

the child wants to learn. Child 

abuse promotes escape and 

avoidance behaviors, and denies 

the child opportunities and 

incentives for acquiring normative 

skills and knowledge. 

Most of these cases of mental 

retardation resulting from adverse 

environmental factors can be 

prevented through changing the 

environmental conditions which 

produce them. A strategy 

suggested by the National Institute 

of Child Health and Human 

Development is to identify the 

most critical factors in early 

childhood development, and then 

to change the child's daily living 

experience. However, this 

intervention must come early 

enough and be comprehensive 

enough to be effective. In some 

cases, it must occur almost at birth 

to prevent secondary retardation 

from developing. 

There are two major 

environmental prevention 

strategies: 1) educating the parents 

about better child-rearing 

practices; 2) providing 

environmentally high-risk infants 

with the stimulation or other 

elements missing from their 

environments. 

However, in implementing these 

strategies, program providers must 

take into account a number of 

sensitive issues, involving cultural 

variations, family prerogatives, 

and parental and child rights, so 

that services can be provided in a 

humane, sympathetic, and 

supportive way, and efforts will 

not be viewed as bureaucratic 

interference. 

There are numerous programs 

throughout the country which use 

these strategies in varying 

combinations. These include infant 

stimulation programs and 

Head Start programs which offer 

stimulation, parent training, and a 

combination of parent training 

coupled with infant stimulation or 

early childhood intervention. The 

key element in all of these 

programs is enriching the child's 

environment to stimulate his 

developing cognitive processes and 

other abilities. 

Research has shown that this 

strategy can work. One of the 

earliest preliminary studies is the 

Milwaukee Project, in which 

researchers identified during 

pregnancy or soon after, 40 

women with below normal IQ 

scores from impoverished 

environments. Shortly after birth, 

the infants were randomly assigned 

to a control group which received 

no special treatment or to an 

experimental group in which the 

mothers were given occupational, 

home-making, and parenting 

training. Meanwhile, the infants 

participated in an intensive 

stimulation program, emphasizing 

achievement motivation, the 

development of problem solving 

skills, and language acquisition. 

By school age, the stimulated 

children reportedly had IQ scores 

averaging 26 points higher than the 

controls and were far superior in 

verbal and numerical ability. In 

fact, their IQ's initially tended to 

be slightly over the general 

population average, while the 

controls tended to be in the dull or 

mildly retarded range. 

Unfortunately, comprehensive 

follow-up reports have never been 

published. 

Other studies have suggested 

that appropriate intervention will 

significantly reduce mental 

retardation if the intervention 

begins early enough, continues 
long enough, is intensive 

enough, and Includes the 

parents, or at least the mother, 

as an agent of change. Among 

these is the Abecedarian Project 

at the Frank Porter Graham 

Child Development Center, 

University of North Carolina at 

Chapel Hill. The researchers 

worked with 112 children and 

six families with low incomes. 

Not counting attrition by death 

or biological abnormality, 93 

percent of their sample is intact 

after six years. At this center, 

they participated in a special 

curriculum emphasizing 

linguistic development. 

After about one-half of the 

children completed the preschool 

program, the researchers found that 

the educationally treated group had 

maintained a mean IQ of 98 during 

the first five years—a score 

approximately the national 

average. The control group scored 

at the national average before 18 

months but thereafter, the group's 

score declined until at age five the 

mean IQ was 91. The researchers 

also found that while only 11 

percent of the educationally treated 

group had IQ's under 85, at age 

five, 39 percent of the controls had 

IQ's below that level. In addition, 

the researchers discovered that the 

effects of stimulation not only 

increased the measured IQ (itself 

reflecting linguistic factors) but, 

also improved the child's general 

adaptive behavior. 

As in other research on the same 

subject, these findings suggest that 

the measured IQ of children raised in 

low-income deprived environments 

tend to decline in the early 

developmental years. However, if 

there is educational intervention with 

emphasis on linguistic development, 

the decline is not likely to occur. 

Preparation for Parenthood

One type of prevention program 

directed to the "soon-to-be" parent 

is designed to help both fathers and 

mothers be better parents, by 

showing them how they can foster 

cognitive and adaptive development 

in their offspring. 

The Indiana State Department of 

Public Instruction - Innovative 

Education, developed such a 

program called "Prevention: To Be 

Born and Grow Well," which has 

been used in the State's 

schools since 1978. The program 

consists of a curriculum for junior 

and senior high school students 

dealing with the causes of mental 

retardation, and the responsibilities 

they should assume as parents to 

lessen the probability of having a 

handicapped or retarded child. 

The program was developed from 

a survey on what health teachers 

currently were teaching on mental 

retardation. As the survey showed, 

the health educators needed more 

information on prevention to 

enhance their teaching. In response, 

the Indiana State Department of 

Public Instruction - Innovative 

Education prepared a detailed 

curriculum guide for these educators 

on how students could prevent 

retardation in their future offspring 

by taking steps now and when they 

became parents. The guide also 

stressed that the male should take 

equal responsibility for prevention. 

Traditionally, the role of the male in 

prevention has been ignored. In 

addition, the core curriculum 

consisted of an action checklist with 

75 specific prevention techniques 

which the parent could employ 

before, during and immediately after 

the birth of a child. Finally, the guide 

recommended 168 additional actions 

to prevent mental retardation during 

the development years, from birth to 

18 years. 

Since its publication, the 

Department has distributed the guide 

to 5,500 health, home economics, 

biology, advanced science, 

secondary special education 

teachers, and school nurses in 

Indiana, and has responded to over 

900 unsolicited requests from 43 

States and 10 foreign countries for 

copies of the curriculum. Also, the 

Department has held teacher training 

workshops in five regions of the 

State once a year for the two years of 

the project to prepare teachers to use 

the curriculum successfully. 

Approximately 1,100 teachers have 

been trained as a result. The 

curriculum's effectiveness has been 

pre- and post-tested with about 2,000 

participating students in small towns, 

suburban areas, and cities in Indiana, 

with uniformly positive results. The 

students showed an increase of ten to 

70 percent in cognitive knowledge 

for the first section of the curriculum 

and an increase of 50 to 82 percent 

for the second section. In addition, 

when retested after once month, the 

students continued to show a gain of 

knowledge ranging from 19 to 59 

percent. 

Programs for Mothers and

Children_______________ 

These programs involve two 

main components: 1) preparing the 

parents to be better parents, by 

teaching them behavioral 

techniques to assist their children in 

accomplishing major developmental 

tasks; and 2) directly stimulating the 

child with an enriched environment 

to enhance development and 

teaching the parent techniques that 

can be used at home. The focus 

varies in different programs. 

While some projects are 

designed for normal children raised 

in homes where there is a high risk 

of developmental delay due to 

family disadvantages, such as a low 

income or a teenage mother, other 

programs are for children with 

handicaps or developmental 

disabilities. Some are designed for 

both. Although generally oriented to 

low-income and disadvantaged 

children, the underlying approach is 

beneficial for children of any class or 

ethnic background. 

The following subsections 

outline specific types of early 

infant and toddler programs. 

Mother Training Programs

Some infant stimulation 

programs have a training 

component, in which the mother 

learns to foster her infant's 

sensorimotor, cognitive, and 

language development; provide for 
her infant's health, nutritional, 

psychological, and educational 

needs; become aware of her 

important role as the primary 

teacher; and to enjoy being a 

mother. 

An example of a successful 

program of this type is the Infant 

Stimulation/Mother Training 

(ISMT) Project at the University 

of Cincinnati College of 

Medicine, Pediatrics Division, 

which uses a model developed 

and tested at the University of 

Illinois and at parent and child 

centers in Illinois and Georgia. 

In its seven years of existence, it 

has served close to 1,000 lowincome teenage mothers —

approximately 80 percent of 

them minority and 20 percent 

Appalachian Whites. 

Initially, the program was 

developed to deal with the lowincome teenager who is typically 

unmarried, without a high school 

diploma, and unable to support 

herself or her child; and whose 

own inadequacies contribute to 

problems of physical, cognitive, 

and psychological development 

in the infant. However, the 

program can easily be used for 

other mothers with limited 

parenting skills. 

The ISMT program began in 

early 1973, with the recruitmen

of 48 mother and infant pairs. 

The mothers selected fr

postpartum unit of the 

Cincinnati General Hospital 

were socially disadvantaged, 

under age 16, and lived with

t 

om the 

in 

s

pated 

y 

th 

 

e visits, but no 

t 

ld 

classes had three 

ir 

 2) 

 to 

te 

their 

ch

d 

g 

For example, until 

they were 

even miles of the hospital. 

Twenty-four of the motherinfant pairs who were assigned to

the treatment group partici

in a classroom session, in 

addition to receiving monthl

home visits to assess infant 

development and discuss heal

and nutrition problems. The

other 24 mothers received 

monthly hom

instruction. 

 The assumption of the projec

was that the instruction wou

make a major difference in 

helping the young women 

become more effective mothers. 

To this end, the 

main purposes: 

1) to show to the mothers that 

the way they interact with the

infants will affect how their 

children develop in later life;

to encourage the mothers

respond to their infant's 

vocalizing and other behaviors 

indicating the infant was either 

interested in something or was 

experiencing some stress, and 3) 

to teach the mothers a sequence 

of infant development skills, so

they could use the appropria

materials to stimulate 

ild's development. 

Mothers began participating, 

when their babies were three to

four weeks old and continue

until they were 18 months. 

During this time, the curriculum 

followed an organized sequence 

of child development, providin

the appropriate stimulation at 

each stage. 
three months old, the infants 

were placed in an infant seat, to 

encourage them to be more 

attentive to what was going on. 

During this phase, the mothers 

were taught to respond promptly 

to their infant's needs, and to 

recognize their role as the 

primary caretaker. 

 When the infants were about 

three months old, the teachers 

urged the mothers to help their 

babies have new experiences, 

by interacting with them. As 

the children got older, the 

teacher added still more 

materials to show the mothers 

additional ways to stimulate 

the child's mind. Also, at this 

stage, the mothers learned 

about the inner forces that lead 

children to move from one 

phase of development to the 

next—such as their drive to 

become independent, to 

master their environment, and 

to fit in socially. 

The effectiveness of this 

approach was shown 

dramatically when the 

participating infants were 

compared to the controls at 12 

months. Whereas the infants 

of the adoles of the adolescent mothers who 

only received hom only received home visits visits 

tended to fall behind in their tended to fall behind in their 

developmdevelopment, the infants ent, the infants of 

mothers parmothers participating in ting in 

classes tended to maintain 

their develotheir developmental raental rate. 

After the mter the mothers had thers had 

attended at least five of the ed at least five of the 

first eight classes, both the 

mothers andmothers and infants sho infants showed a 

greater respgreater responsiveness to e onsiveness to each 

other ovother over the eight-wee er the eight-week 

period. 

Also, there have been 

beneficial so beneficial social effects in t cial effects in the 

mothers them mothers themselves. Most selves. Most 

participanparticipants decided to r ts decided to return 

to high school to com to high school to complete 

their education and get off 

welfare, reflecting a de welfare, reflecting a desire for sire for 

self-improvement and ent and 

potential uppotential upward mobility. obility. 

Since thSince this initial testing phase, 

this program this program has continu has continued to 

operate as a successfu operate as a successful 

established program stablished program. 

In part, mIn part, much of the program' ch of the program's 

success is dsuccess is due to the curricu e to the curriculum 

design, and the well trained 

teaching staff. But there are f. But there are two 

other imother important factors: the portant factors: the 

support msupport mothers get from each thers get from each 

other, and the growing 

responsiveness of their babies, 

which becomhich becomes reinforcing. s reinforcing. 

In short, teaching m In short, teaching mothers to thers to 

be better parents is an approach 

that helps to reduce o reduce or eliminate 

delays which often occur in the 

infants of teenage m infants of teenage mothers who others who 

lack parenting skills. 

StimulatioStimulation____

The Infant and Toddler 

Learning Program located at the 

Bronx Developmental Center, 

(supported by the City College of 

New York, Department of Social 

Services, and the Albert Einstein 

College of Medicine, Rose F. 

Kennedy Center, U.A.F.) has four 

major components, which 

include: 1) a full day/full week 

educational program for children 

under three; 2) comprehensive 

early intervention and treatment 

services to handicapped children; 

3) comprehensive social, 

psychological, and educational 

services to the children's families; 

and 4) the provision of services to 

an equal number of handicapped 

20

Infant and Toddle Infant and Toddler 
and non-handicapped children to 

help the handicapped children 

become "mainstreamed" as soon 

as possible. 

The program mixes children from 

all different economic, social, and 

ethnic backgrounds, as well as both 

normal children and children with 

different handicaps, including 

Down's syndrome, spina bifida, 

language delays, sensory 

impairment, and children at 

significant risk of retardation, such 

as those with birth-weight less than 

21/2 pounds. The children are 

combined, to encourage delayed 

children to higher levels of 

achievement by interacting with 

normal children. 

The trainers are responsive to 

each child's individual 

development while also 

encouraging group interaction, 

since children learn from each

other. 

For the first four to eight weeks, 

the head teacher or coordinator 

determines the child's current level 

of functioning, style of learning, 

and family needs. Tests determine 

the child's abilities, cognitive level, 

and ability to understand and use 

language. In addition, the program 

staff develops a profile of the child's 

temperament, which includes 

information on activity level, bodily 

functions, responses to new stimuli, 

and attention span. Also, the staff 

observes the parent's level of 

enjoyment and responsiveness to 

the child. Then, from this broad 

assessment, the staff determines 

educational goals and strategies. 

From here, the child is gradually 

phased into the classroom 

program. Meanwhile the parents 

are kept involved, by observing 

their child participate in some

sessions and meeting with other 

parents. Finally, after several 

weeks of adjustment, the child joins 

the program on a daily full-time or 

part-time basis, and is placed in a 

class based on age and ability. 

To maintain parental involvement, 

the trainers meet monthly with the 

parents to inform them of their 

child's development and learn of 

their needs. Additionally, the staff 

records each child's progress every 

three months on a developmental 

profile and progress chart. 

There is also a parents' 

organization, which features 

speakers and social events. 

Home Teaching Programs 

for Infants and Toddlers__

In addition to programs based in 

a center, another successful model 

involves teaching the child at home. 

This approach has several 

advantages: parent and child learn 

in a natural environment; the parent 

can readily observe the child's 

natural behavior; it is easier to 

maintain a desired behavior learned 

in the home setting; the home is an 

ideal setting for training the parents, 

who are already natural agents of 

change and behavior reinforcement 

for their child. 

A final advantage is that the 

home teaching program may be the 

only way to get a developmentally 

delayed child into a stimulation 

program, since his parents may lack 

transportation, cannot afford the 

cost, or must remain home for other 

reasons. 

The Portage Project used this 

model. It was a home teaching 

program for children living in an 

education service district in southcentral rural Wisconsin. During 

1972, as an example, it served 75 

children from birth to age six. The 

children had a variety of handicaps, 

including behavioral problems. 

They were emotionally disturbed, 

mentally retarded, physically 

handicapped, culturally deprived, 

and/or handicapped in language. 

A home teacher visited each child 

and his family for one and a half 

hours, one day a week, for 9-12 

months. In the interim, the parents 

taught the child using the prescribed 

structured curriculum and recording 

his progress. 

The teacher developed an 

individualized assessment program 

for each child consisting of 

developmental skill inventories, 

intelligence tests, and vocabulary 

tests. Then, based on the child's 

present behavior, rather than his 

disability label, the teacher designed 

an individualized curriculum using 

an Early Childhood Curriculum 

Guide. This Guide presented a 

developmental sequence which 

listed 450behaviors forming from 

birth to five, in five developmental 

areas: cognition, language, selfhelp, motor behavior, and social 

skills. Based on this checklist, the 

home teacher determined what 

behaviors the child already 

exhibited in each area, and then, 

using this data, and suggestions 

from the parents, decided what the 

child should learn next. 

Once determined, this new 

prescribed learning became the 

child's goal for the week. Typically, 

the teacher would decide on one to 

four goals or prescriptions for each 

child, and once these were mastered, 

select another goal or goals. Parents 

were encouraged to help in setting 

these goals and in planning the 

curriculum. 

Then, on each weekly visit, the 

home teacher would demonstrate 

the behavior to the parent and 

observe the parent working with the 

child on the goal. Also, the teacher 

would evaluate the child's progress 

each week, and twice a year would 

give further IQ tests to assess 

development. Parents would keep a 

daily activity chart of the child's 

accomplishments. 

The results: the average measured 

IQ of the children at entry was 75, 

hence, they might be expected to 

gain 75 percent of what a normal 

child would over time, or six months 

of developmental age in the eight 

months of the project. In fact, on the 

average, each child gained 13 

months—more than double the 

expectancy and at a rate of 60 

percent more than expected of a 

child with normal intelligence. A 

retesting of their IQ's before and 

after the project also showed a 

significant gain. On the average, 

they had a mean gain of 18 points in 

IQ, as measured by the Stanford 

Binet Test. 

21
Head Start

The nationwide Head Start Project 

began officially in the summer of 

1965 as part of the Economic 

Opportunity Act, passed in 1964. 

Head Start is designed to provide an 

enriched learning environment in a 

group setting for children up to age 

five from low- income families. The 

aim is to help the children learn 

concepts, become curious, and be 

more motivated to learn, so that when 

they enter elementary school, the can 

have a "head start" on keeping up 

with children from middle-class 

homes. In addition, the program 

provides the children with some 

nutritional and health assistance, and 

encourages parents to be volunteers to 

help their own and other children’s 

development. 

Within this broad framework, 

individual programs vary widely. For 

example, while some programs take 

children as young as three months, 

others do not take 

children until they are age two, three 

or four. In some programs, all of the 

children participate as a group in a 

classroom. In others, teachers visit the 

children at home. In still others, home 

visits are combined with daily group 

sessions for the children. In some 

cases, the program has a tightly 

structured curriculum, emphasizing 

school- readiness skills. In others, the 

emphasis is on children "discovering" 

what they want to discover in the 

enriched environment, while 

influencing their motivation, selfconcept, and cognitive diversity. 

But significantly, whatever the 

approach, all of the programs have 

been successful in improving the 

learning skills and social adjustment 

of the children involved. This has 

been shown by a long term follow-up 

study, conducted in 1975 by 12 

investigators, who independently 

designed and conducted eight 

experimental preschool programs in 

the 60's. Calling themselves the 

Consortium for Longitudinal Studies, 

they combined the results of eight 

original research studies. These 

findings reversed some of the initially 

unfavorable data included 

in the Westinghouse/Ohio Report, 

which suggested that any early 

cognitive and emotional gains largely 

disappeared by the time the children 

reached the third grade. 

The Consortium found 1,600 of the 

original 2,700 participants. Using IQ 

and achievement tests and structured 

interviews, they compared the Head 

Start "alumni" with children of a 

similar background who had not 

attended Head Start programs and 

selected them randomly as controls. 

They found several major differences: 

1) The Head Start children were 

less likely to be placed in special 

remedial classes when they 

entered elementary school (only 

14 percent of the Head Start 

children were placed in such 

classes compared to 29 percent 

of the controls.) 

2) The Head Start children were 

less likely to be left back or 

retained in a grade. 

3) The Head Start children 

scored significantly better in 

mathematics than the controls 

in a fourth grade standardized 

test. The Head Start children 

also tended to score higher on 

reading. 

Obviously, Head Start's success 

does not lie in a particular 

curriculum, but in the underlying 

concept of providing a rich 

stimulating environment to 

children who would otherwise not 

have it. 

Elementary School 

Programs________

The next phase of attempting to 

prevent mental retardation through 

environmental changes is the 

elementary school. Again, the focus is 

on assisting children overcome any 

disadvantage or lack of motivation 

which may be due to environmental 

conditions. 

The EPIC School (Education 

Programs for the Individual 

Child), is a barrier-free school to meet 

the individual needs of each child. It 

began in one of Birmingham, 

Alabama's older schools in 1972, but 

has been located in its own new 

facility since 1979. The program 

serves approximately 500 children 

from 3 to 15 years of age in grades K 

through 5. Besides normal or 

"typical" children, representing 50 

percent of the school population, the 

program has wide variety of atypical 

students, including physically 

handicapped, learning disabled, 

visually impaired, educable mentally 

retarded, hearing impaired, and 

emotionally disturbed, as well as 

gifted children. The curriculum is 

designed to meet the special needs of 

typical and atypical children. 

22 
 The school's program is 

exemplified by a child named 

Ricky, in pre-school. As the 

PCMR team reported after the 

site visit: 

"Ricky just turned five years 

old in June. We first learned about 

him when we visited the Center for 

Developmental and Learning 

Disorders at the University of 

Alabama Medical Center. The doctor 

who told us about Ricky expressed 

great satisfaction with his progress 

and development. He was born with an 

infectious disease known as 

Toxoplasmosis, which causes 

deafness. But, exclaimed the doctor, 

"If you could have seen his eyes when 

he was born—it was just remarkable. 

He had a very bright, alert look. Sure, 

he was sick—jaundiced, wasted, 

everything. We did not think he would 

survive. BUT his eyes were always 

alert. We knew he would make it". 

"On visiting the EPIC School the 

following morning," the PCMR team's 

report continues, "the first classroom 

visited was one for hearing-impaired 

children and to the surprise and 

delight of the Team, Ricky was there— 

bright, alert, active and excited about 

the visitors, specially the 

photographer. His teacher reported 

that he is performing at his grade 

level, despite his severe hearing 

impairment. His pre-reading, premath and writing skills are all at his 

age level. His speech is coming along 

as he learns to use his voice; however, 

he uses sign language for total 

communication. At home, where he 

lives with his parents and three-year 

old sister, Ricky communicates with 

his mother through sign language." 

Ricky's IQ is only a little below 

normal. His major problem is his 

severe hearing impairment. 

The crucial time to intervene with 

such children is about age one and a 

half. Ricky was three and a half when 

he was referred by the Center to the 

EPIC school. 

Ricky's case substantiates the 

re the 

s 

gical 

s 

sults that can be expected from

interdisciplinary approach to early 

intervention. An underlying factor i

the support personnel, in the 

medical, social, and psycholo

fields who were the connecting link

to the screening, diagnostic, referral 

and placement procedures which, 

finally, placed him in the best 

available educational setting. 

The educational institution created 

an environment that is conducive to 

learning, focusing on the whole child 

rather than the handicapping 

condition, and setting reasonable 

objectives. 

 
Preschool and Elementary 

School Research Programs to 

Encourage 

Responsiveness_________ 

The Juniper Gardens Children's 

Project provides a setting that 

encourages responsiveness or active 

participation as a key to learning. It is 

a community-based research program 

located in the inner city of Kansas 

City, Kansas. Since 1965, it has been 

under the joint sponsorship of the 

University of Kansas, a community 

action group, a local church and civic 

leaders. The program uses 

psychologists and educators to work 

with both pre school and elementary 

school children to find ways to prevent 

the high incidence of developmental 

retardation in inner-city poverty areas 

through motivating children to 

improve their social and academic 

skills. Procedures now widely used 

were developed to decrease disruptive 

behavior and increase academic 

performance of public school students. 

Research results indicate that innercity children can be motivated to learn 

if systematic consequences are 

provided for appropriate behaviors, 

such as tokens or specific reinforcers 

for desired behaviors. For example, 

researchers found in a series of studies 

between 1968 and 1977 that they 

could increase the acquisition of 

language and pre-academic skills in 

pre-school children by reinforcers. 

Other studies of the project point 

out the importance of children having 

the opportunity to respond in class and 

practice the task. For example, the 

Juniper Gardens Project also found 

that pupils made more rapid gains 

when allowed to plan an arithmetic 

game (Quizmo) with the principal. 

Another study indicated that the 

students participated more and 

performed better when a question and 

answer period was restructured so 

more students could respond. The only 

change was that the teacher allowed 

the students up to 15 seconds to 

respond, instead of five seconds. 

The Juniper Gardens research 

has suggested two key ways in 

which the school setting can be 

changed to help prevent mental 

retardation due to poor learning 

environment: 1) providing 

structured reinforcers to promote 

desired behavior, and 2) providing 

opportunities for children to 

respond more actively in the 

classroom. 

Institutions of Higher 

Learning__________

PCMR's Prevention Task Group on 

Environmental Concerns and Minority 

Affairs (ECMA) in 1976 invited the 

personnel from 50 colleges and 

universities to participate in a study to 

identify and define the role of 

institutions of higher learning in 

preventing retardation, and suggested 

that they could participate in several 

types of endeavors. These 

included: developing annotated 

bibliographies, training packages, 

training films, and curricula; sharing 

materials with PCMR; establishing 

interdisciplinary prevention 

committees to address prevention 

issues; and encouraging the public 

school systems to establish pilot 

programs in prevention. 

Then, in 1979, PCMR embarked on 

a national project to assess the 

involvement of higher learning 

institutions in prevention. The 

Committee sent letters to 113 colleges 

and universities, with data sheets 

indicating the nature of the student 

population served and the types of 

programs designed to prevent or 

minimize mental retardation. There 

were 49 responses. These data and 

materials are now being analyzed to 

determine the appropriate action to be 

initiated or supported by PCMR to 

assist these institutions participating in 

the educational process for prevention. 

Key areas where skills and 

information could be shared 

include: 

 discussing basic prevention 

concepts; 

 pointing up the sociocultural/ 

environmental and biomedical 

etiological factors in mental 

retardation; 

 providing information on 

genetics, medical technology, 

nutrition, and child 

development, bearing on 

preventing retardation; 

 identifying the preventable 

causes of brain damage due 

to childhood accidents and 

other causes; 

 discussing the importance of 

genetic counseling as a 

prevention strategy; 

 providing information on 

inhibiting the development of 

neonatal complications due to 

high-risk pregnancies; 

 studying and analyzing 

programs on safe contraceptive, prenatal, perinatal, 

and post-natal care; 

 identifying the variety of 

 environmental toxins, 

including lead poisoning and 

x-rays, which can cause 

 mental retardation; 

 identifying the effects of 

teratogens, such as barbiturates, 

alcohol, and narcotics on fetal 

development; 

 pointing up how a lack of 

adequate environmental 

stimulation due to social 

conditions or biological 

problems can curtail the 

normal cognitive 

 development; 

 analyzing the effect of abuse 

and neglect on intellectual 

development; 

 identifying the metabolic 

disorders causing mental 

retardation; 

 describing the characteristics 

of good parenting and 

suggesting techniques to 

improve parenting; 

 developing good programs 

for preparing professionals 

and parents in prevention 

techniques; 

 developing workshops and 

programs dealing with 

prevention among the 

economically deprived and 

culturally diverse; 

 developing programs to help 

teachers of health, early 

childhood development, 

 home economics, nutrition, 

nursing, and related fields 

better understand the 

preventable causes of 

retardation so they can share 

this knowledge with their 

students; 

 planning special programs 

for training pre-service 

physicians to help them deal 

with problems of retarded 

people. 
Project Impact: 

Helping Low 

Income and 

Minority 

Individuals Prevent 

Mental Retardation

Project Impact in San Diego, 

California (one of seven located 

throughout California, Arizona 

and Hawaii) is an example of an 

outreach program designed to deal 

with the problem of isolation 

among low-income and minority 

families. Since 1973, Project 

Impact has been operating under 

the sponsorship of the National 

Association for Retarded Citizens, 

with funding from the Community 

Services Administration (formerly 

the Office of Economic 

Opportunity). 

The project specializes in 

reaching low-income families with 

mentally retarded members. 

Impact reaches into high-risk and 

high-incidence neighborhoods to 

identify and link the retarded 

person and his family with existing 

community resources. 

The San Diego Chapter has two 

indigenous outreach paraprofessionals, a Black and a 

Hispanic, who are particularly 

sensitive to the culture and special 

needs of the "ghetto" and the 

"barrio." These neighborhood

workers locate families with 

mentally retarded members 

through a network of individuals 

and groups in the community. 

They work with these families in 

various ways, such as: counseling

them on a wide range of topics, 

including family planning; 

counseling on the causes and 

prevention of mental retardation; 

informing families of and helping

them use community resources; 

helping families with retarded 

members organize action and 

discussion groups; providing 

transportation and accompanying 

parents to meetings; negotiating 

with agencies to obtain needed

help; distributing literature on 
preventing retardation; and many 

other similar services. 

A key component of the program is 

getting parents involved in actively 

helping their children and joining with 

other parents in discussion groups to 

become more aware of mental 

retardation and ways to prevent it. For 

example, in San Diego's Spanishspeaking community, the 

neighborhood worker has helped about 

75 parents of retarded children form 

an organization called El Arbol de la 

Esperanza—the Tree of Hope. At their 

meetings, parents arrange for speakers, 

share experiences, and organize 

workshops to discuss retardation and 

prevention. 

Also, the members provide 

families at-risk with prevention 

literature, in English or Spanish. Some 

literature points up specific strategies 

for preventing a variety of diseases 

and other conditions which may lead 

to retardation, such as rubella and 

other infectious diseases, drug and 

toxic substance poisoning, lead 

poisoning, and childhood accidents. 

Other literature alerts at-risk parents 

to the dangers of Rh blood disease, 

metabolic disorders and genetic 

disorders, and tells them what to do. 

To reinforce the message of this 

literature, the neighborhood workers 

have follow-up discussions on these 

topics with individual parents and 

groups. 

In part, the program works well 

because of the support the 

outreach workers receive from the 

San Diego County Association for 

Retarded Citizens, which provides 

staff training on outreach techniques 

and available services, as well as 

sponsoring meetings, forums, 

conferences and training institutes to 

keep the workers well informed. 

In spite of the "hard to reach" label 

that is often ascribed to many 

disadvantaged families living in the 

urban ghettos, the barrios, the migrant 

labor camps and on the reservations, 

Project Impact, through its 

neighborhood worker approach, has 

demonstrated that these families can 

overcome their isolation from the 

mainstream of needed human services.

Taos, New Mexico: 

Preventing Mental 

Retardation 

Among Native 

Americans

Although data on the prevalence 

of disabling conditions among 

Native Americans is sketchy, a 

number of isolated studies have 

come up with some startling 

figures. While exact figures for all 

tribes are not available, the Indian 

Health Service and other agencies 

indicate that 37 percent of young 

Indian children enter school with 

hearing defects, 25 percent with 

speech, visual, emotional and other 

impairments. 

These high disability rates 

come from a variety of causes. 

For instance, on the Navajo 

reservation, some causes which 

have been identified are: a high 

rate of alcoholism and heavy 

drinking among pregnant 

mothers, inadequate prenatal 

care, poor nutrition, a high 

prevalence of diseases affecting 

unborn children, and a high birth 

rate among women over 35. All 

these factors substantially 

increase the risk of a Navajo 

child's having a physical or 

mental disability. Similar 

conditions contribute to the 

prevalence of handicapping 

conditions among the Native 

American population as a whole. 

As reported in "He Lifts Up His 

Head," a report on the 

proceedings of the Inter-Tribal 
Symposium on Handicapped 

Native Americans, 1976, "the 

apparent prevalence of mental 

retardation" among Indian 

students, particularly Navajo, is 

precipitated by socio-economic 

and cultural factors, rather than 

hereditary or psychological ones. 

The incidence of genetic 

retardation among Native 

Americans does not differ 

significantly from non-Indians. It 

is the rate of functional retardation 

and learning disabilities that is 

inordinately high. 

According to a September, 1972 

survey conducted by the Bureau of 

Indian Affairs (BIA) Schools, it is 

estimated that 19,540 of 49,720 

students enrolled in BIA-operated 

schools were exceptional, that is, 

children with unusual learning 

needs. This is approximately 39 

percent of the school-age 

population, compared to a national 

average of 10-12 percent. Of the 

estimated 19,540 exceptional 

children, 3,715 

students were reported to have 

received services, while 15,825 

students still needed appropriate 

special education services. 

To deal with the problem of 

mental retardation and other 

conditions contributing to it, some 

Indian tribes have instituted family 

planning and Head Start programs, 

which are designed to take into 

account the special needs and 

values of American Indians in 

order to maximize program 

acceptance. 

One of these programs is at 

Taos, New Mexico, which is one 

of 19 Indian pueblos located near 

the City of Albuquerque. It 

consists of about 2,000 individuals 

living in 350 families. 

The pueblo's family planning 

program has been operating since 

1976. It receives support from its 

tribal government to fund a 

community family planning 

worker. 

In response to local needs, the 

program is primarily an outreach 

effort, in which the family 

planning worker meets with 

women and teenagers in their 

homes, in groups, and in other 

settings to explain the advantages 

of family planning and to give 

advice about child care, nutrition 

and health, as related to preventing 

mental retardation. Meeting with 

individuals privately and 

informally and developing trust are 

also important components of this 

program (most Indians are very 

sensitive about family planning 

and do not want to be seen going 

to a health center to get such 

counseling). There is little privacy 

because everyone in the pueblo 

knows everyone else. Therefore, it 

is important to work with each 

client in strictest confidence. The 

family planning message is 

presented to take into account 

Indian culture and values. Since 

children are highly valued, instead 

of suggesting that the women have 

fewer children, which would be an 

objectionable idea, the family 

planning worker emphasizes the 

importance of spacing, so the 

women can better care for the 

children they have and thereby 

lessen the risks of problem 

pregnancies. 

 Because teenage pregnancy has 

been a major problem on the 

reservation, special efforts have 

also been made to adapt the 

program to this age group, who are 

typically shy about seeking family 

planning information and highly 

responsive to peer group pressures. 

Thus, the worker makes 

 
it a point to assure teenagers that 

their privacy in discussing their 

sexual behavior will be 

respected, and carefully avoids a 

moralist approach in particular to 

out-of wedlock pregnancy. 

Instead, the consequences of any 

early pregnancy are stressed, so 

that teenagers fully understand 

the health risks involved. 

 Highly important to this 

program is the professional backup and support the family 

planning worker gets from 

medical personnel in the Taos dical personnel in the Taos 

Indian Health Center, who offer 

a full range of outpatient 

gynecological services, including 

medical checkups, genetic dical checkups, genetic 

counseling, pelvic examinations, 

pap smears, breast exam ears, breast examinations, inations, 

venereal disease screening and 

voluntary methods of fam voluntary methods of family 

planning. planning. 

Persistence has also been a key 

to succesto success. Family planning is a ily planning is a 

new concept for the Taos 

Indians, and the worker has had 

to change attitudes to gain 

program acceptance. But through acceptance. But through 

patience and understanding, 

community m community members have com mbers have come 

to trust the fam to trust the family planning ily planning 

worker and her approach. 

The result has been a reduction 

in the fin the fertility rate on the tility rate on the Taos 

pueblo. According to the New 

Mexico Fam Mexico Family Planning ily Planning 

Council'Council's Newsletter, T s Newsletter, The Sage, e Sage, 

for Spring, 1980, the fertility rate 

in Taos dropped below the 

national average of 54.5 babies 

per 1,000 wom per 1,000 women, whereas, the n, whereas, the 

rate for New Mexico generally is 

72.3 per 1,000 about 50 percent 

above the national average. 

The other mThe other major prevention jor prevention 

program on the pueblo is Head on the pueblo is Head 

Start. The program Start. The program is designed to is designed to 

provide a rich stim provide a rich stimulating ulating 

environmenvironment for childrr children three to three to 

five years of five years of age to enco age to encourage 

their developm their development and avoid the ent and avoid the 

possibility opossibility of retarda retardation due to a due to a 

restricted early environment. It ent. It 

currently serves 27 child rves 27 children a 

year who are supervised by three 

teachers. teachers. 

After the children are en After the children are enrolled 

in the pin the program, the teach ogram, the teachers 

engage in ex engage in extensive outreach in e outreach in 

the commthe community to encourage unity to encourage 

parents to sparents to stimulate theimulate their children 

and to identify any problem and to identify any problems in 

the home that me that may lead to may lead to mental 

retardation. They follow up with 

the parents to see how their 

children are progressing, and if 

they observe any signs of 

retardation or delayed 

development, they have health 

representatives visit the children. 

Also, they give the parents 

suggestions on how to stimulate 

their children at home. The 

school additionally prepares a 

monthly newsletter for parents 

with other ideas on stimulation 

techniques. 

The result has been high 

community interest in the 

program, and widespread parent 

involvement in providing their 

children with added stimulation. 

For example, several parents 

volunteer as teacher's aides, and 

share songs, stories, and other 

elements of Indian culture with 

the children, in addition to using 

techniques learned through the 

school to stimulate their children 

at home.____________________

retardation. They follow up with 

the parents to see how their 

children are progressing, and if 

they observe any signs of 

retardation or delayed 

development, they have health 

representatives visit the children. 

Also, they give the parents 

suggestions on how to stimulate 

their children at home. The 

school additionally prepares a 

monthly newsletter for parents 

with other ideas on stimulation 

techniques. 

The result has been high 

community interest in the 

program, and widespread parent 

involvement in providing their 

children with added stimulation. 

For example, several parents 

volunteer as teacher's aides, and 

share songs, stories, and other 

elements of Indian culture with 

the children, in addition to using 

techniques learned through the 

school to stimulate their children 

at home.____________________
SECTION III: 

MULTIFACTORIAL 

CONDITIONS

 In many cases, mental 

retardation is caused by a 

combination of biomedical and 

environmental factors. This occurs 

when the environmental conditions 

contribute to the individual's 

greater exposure to biomedical 

causes of retardation. For 

example, the risks of retardation 

are much higher for the low birthweight premature infant than the 

normal infant, and this situation 

can be regarded as a biomedical 

cause, since prematurity can result 

from a variety of biological 

factors, including genetic defects. 

However, when the risk of 

prematurity and low birth-weight 

babies is higher in certain 

population groups, an 

environmental factor is added onto 

the biological condition. 

An example of this interaction 

of biological on environmental 

effects is the problem of teenage 

pregnancy, since they are more 

likely to have premature/low birthweight babies than others. 

Likewise, mothers who have 

inferior nutrition during pregnancy 

are more likely to have such a 

child. In turn, retardation due to 

combined effects can be prevented 

by efforts dealing with both types 

of causation. For instance, the 

biomedical approach to the 

problem of prematurity in teenage 

pregnancy involves treating the 

premature infant through intensive 

care techniques. The environmental 

strategy involves working with the 

teenager to reduce the likelihood 

of such a pregnancy occurring. 

Similarly, both biomedical and 

environmental approaches can be 

used to reduce retardation in the 

low birth-weight infants of 

malnourished mothers. The 

biomedical approach involves 

giving that offspring the best 

possible care, to enable it to 

survive in the perinatal period. The 

environmental approach involves 

assisting the pregnant woman prior 

to birth with improved prenatal 

care, which includes better 

nutrition. 

Teenage Pregnancy

According to the Alan 

Guttmacher Institute an 

estimated one million teenagers 

get pregnant each year, and 

according to the Chairman of the 

Scientific Advisory Board of the 

Joseph P. Kennedy, Jr. 

Foundation, the teenage mother 

under 16 is less likely than the 

older mother to have a normal 

baby. About 15 to 18 percent 

of the babies of adolescent 

mothers are low birth- weight. 

Also, due to the numerous 

stresses faced by the adolescent 

mother, child abuse leading to 

retarded development and/or 

even brain damage is much 

more frequent among the 

offspring of teenage mothers 

than of mature mothers. 

Johns Hopkins University 

reports in "A Comprehensive 

Approach to Adolescent 

Pregnancy", that the number of 

teenage pregnancies throughout 

the United States has been 

increasing dramatically, in part 

because of the growing 

acceptability of premarital sexual 

behavior, and the susceptibility of 

adolescents to peer pressures and 

opinion promoting this behavior. 

Also, adolescents frequently 

lack the information necessary 

to prevent pregnancy or to be 

adequate parents when they 

do have children. 

 In 1978, in recognition of this 

growing problem, the Adolescent 

Pregnancy Care and 

Prevention Act was passed by 

Congress which provides 

family planning services to 

teenagers who want them at no 

cost. However, even with the 

availability of services, many 

teenagers do not use family 

 planning, out of ignorance or 

because they fear parents or 

friends knowing about their 

activities and because family 

planning services in a clinic for 

older women do not meet 

their needs. 

 The situation is unfortunate, not 

only because the pregnancy may 

interfere with the teenager's 

school and career plans and 

social life, but also because 

teenage pregnancies are much 

more likely to have unfavorable 

outcomes compared to the 

pregnancies of older women. As 

a group, adolescents are more 

likely to experience pregnancy 

complications such as anemia 

and toxemia, have premature, 

low birth-weight, or growthretarded infants, and deliver 

babies that have a higher death 

rate in the perinatal period and 

as infants. Also, they are more 

likely to give birth to babies 

who will later show lower 

intellectual development. 

Additionally, adolescent pregnancy is associated with other risk 

factors that can detrimentally 

affect the quality of life for the 

teenage mother, her child, and her 

whole family. This was shown 

in an 8-12 year follow-up study 

of a large population of urban 

mothers, their children, and their 

families conducted by Johns 

Hopkins University. Of the 4,557 

mothers included in the study, 

702 became pregnant as 

adolescents and 668 had live 

births. The study followed the 

surviving children until they 

were eight, and subsequently 416 

children were studied at age 12. To 

examine the problems associated 

with teenage pregnancy, the 

researchers compared the teenage 

group with a group of women 

ages 20-24, since this latter group 

is generally considered to have 

the best pregnancy outcome. 

 The results showed that the 

teenagers were more likely to have 
problems directly associated with the 

birth itself, and were subsequently 

more likely to provide a poor 

environment for their children. More 

specifically, the research results were 

that: 

 Teenagers were more likely to 

be school drop-outs. (Whereas 77 

percent of the mothers 20-24 

graduated from high school, only 

35 percent of the teenagers did.) 

 Teenagers were more likely to be 

dependent on welfare. (Whereas 

only 44 percent of them were in 

families that were self-supporting 

12 years after delivery, 71 

percent of the other mothers 

were self- supporting.) 

 Teenagers were likely to have 

greater instability, indicated by 

a high frequency of single parent 

families, divorce, death, and 

change in status. (Whereas 37 

percent of the teens had three or 

more status changes in the 12-year 

period, only 4 percent of the older 

women did.) 

 Teenagers were more likely to 

suffer fetal loss (46 percent 

compared to 26 percent 

among the older women). 

Other research has widely reported 

that teenagers have a higher 

proportion of still-births, spontaneous 

abortions, premature births, low birthweight births, and infants born with 

developmental disabilities, including 

mental retardation. 

To deal with this problem, various 

hospitals, family planning centers, 

clinics, and other organizations have 

developed prevention programs 

targeted for the teenager. Generally, 

the programs have two components— 

one designed to provide the teenager 

with contraceptive and other family 

planning information, so she can avoid 

the pregnancy in the first place; and 

one to assist the already pregnant 

teenager so she can give birth to a 

healthier baby and provide better 

care for it after birth. 

Besides providing specific services, 

to be successful these programs have to 

consider several factors about 

adolescents generally. For example, 

teenagers tend to be poor users of 

health care facilities, and generally 

lack information about health, 

nutrition, reproduction, contraception, 

parenting, child development, child 

care, and where to go to get assistance 

with social services, employment, day 

care, and other services. Also, most 

seem to fear using clinic services, and 

rarely participate in programs on a 

regular basis, particularly in programs 

designed primarily for older women. 

Thus, special arrangements have to be 

made to adapt the clinic to 

adolescent needs, so they will use it. 

An example is the St. Paul 

Minnesota Maternal and Infant Care 

(MIC) Project, which has provided 

comprehensive, multidisciplinary 

health care to adolescents since 1968. 

Part of the project has included two 

junior and senior high school-based 

clinics, which, since 1973, have 

offered various family planning 

services, along with counseling on 

nutrition, prenatal care, and other 

educational services. 

In a 1976 follow-up study, the 

researchers found over the three- year 

period that 25 percent of the female 

students came in for services, and 

after three years, 87 percent of them 

continued to use contraceptive 

techniques. Even more significant is 

that in those three years the teenage 

pregnancy rate declined 40 percent 

and the teenagers who did have babies 

had a lower incidence of obstetrical 

problems and healthier infants. Since 

then, use of the service has increased, 

so that in the 1978-79 period, 75 

percent of the students used the clinic. 

According to the researchers, the 

program was successful because the 

teenagers were provided with free 

services within a school to which they 

had easy access; and they could use 

them in confidence, since parental 

consent was not required. The 

services were provided as part of a 

generalized health program. 

At Johns Hopkins, another 

successful program designed for 

teenagers was carried out in a 

hospital, beginning in 1974. This 

program included several major 

features: 

 High quality medical and 

obstetrical care throughout 

pregnancy to detect any 

problems early and deal with 

them as they developed. If 

required, high-risk fetal 

monitoring, and intensive 

prenatal care was available. 

 Social, psychological, and 

educational /vocational 

counseling, to help the girls with 

adjustment problems, and 

encourage them to remain in 

school. 

 An intensive health education 

program to provide participating 

teenagers with the health 

information they lack, in human 

sexuality, reproduction and 

contraception, sexually 

transmitted disease, nutrition, 

general health care, toxic 

substances such as cigarettes and 

alcohol, delivery and labor, early 

child development, and parenting. 

 Special nursing services to assist 

the mother during labor and 

delivery including counseling, 

educational group sessions, and 

newborn screening as well as 

regular nursing services. 

 Nutrition education and food 

supplements available to most 

adolescents through the Women, 

Infants, and Children (WIC) 

Program. 

 Telephone consultation hours so 

the mother can contact on- call a 

pediatric nurse practitioner for 

assistance with the baby. 

 A postpartum well-baby visit four 

weeks after delivery, to screen 

the mother and child for any 

abnormal conditions; provide 

child care, feeding, and 

parenting advice; make needed 

social service referrals; and 

provide family planning 

services. 

Thereafter, follow-up services are 

continued for three years to make 

sure all is progressing well. 

The results have indicated that 

teenagers participating in the program 

have had a reduced rate of premature 

births and healthier babies. For 

example, only ten percent of the 

babies were premature, and only 2.5 

percent small for gestational age. 

Also, only five percent became 

pregnant again within one year, 

which is only 1/5 the 25 percent rate 

for teenagers nationally, and 1/10 the 

47 percent rate reported in the same 

urban population ten years earlier. 
Teen Tot Clinic

 Another program example is the 

Teen-Tot Clinic located in 

Children's Hospital at the 

University of Alabama Medical 

Center since May, 1978. 

The clinic is designed to ameliorate 

the problems of teenage pregnancy 

and the high potential of retardation 

in these infants. The multidisciplinary staff provides the 

teenage mother with various types of 

assistance: 

 education on child-care and 

parenting skills; 

 help with personal adjustment 

to become a better parent; 

 medical aid for their children, 

including well-baby examinations, immunizations, 

developmental tests, nutritional 

assessment, and treatment for 

illness; 

 contraceptive counseling to 

help in future planning. 

In 1979, out of approximately 

500 eligible teenagers in the 

county, the clinic saw 120 

mothers, 85 percent of them Black and 

15 percent White. The vast majority, 

85 percent, were single. For 60 

percent, the baby was unplanned. 

In many cases, the clinic 

provided specific services to prevent 

mental retardation. For example, 

clinic staff placed over 91 percent of 

the mothers on the WIC program 

during pregnancy, and provided 95 

percent of their children with WIC 

supplements. Also, the staff carefully 

monitored 20 percent of the 

children who were born 

prematurely, and hospitalized 21 

percent of the children for various 

problems, such as jaundice, 

pneumonia, and meningitis related 

to infant infection or premature 

birth. 

The staff counsels the mothers on 

how to take care of their babies, 

and provides guidance for adolescent 

mothers and fathers to 

help promote their optimal 

functioning both as parents and as 

individuals. Peer interaction, 

opportunities for socialization, 

and experiences with other 

adolescent mothers and fathers are 

encouraged. The staff assists 

parents with their decisions 

regarding educational, 

employment, living arrangements, 

and personal goals and 

relationships. 
Nutrition 

Poor nutrition for both the baby 

and mother is linked to impaired 

brain development and reduced 

intellectual performance. 

Numerous studies with animals 

and humans have repeatedly shown 

this relationship. The data is most 

impressive in cases of severe 

protein malnutrition. 

For the developing fetus, the 

mother's nutrition is especially 

critical, since it not only may 

affect brain development of the 

fetus, but it also influences the 

birth-weight of the baby - both 

conditions associated with mental 

retardation, and other problems. 

The Surgeon General's report 

for 1979 states that a low birthweight is the greatest single hazard 

for infants, since it increases the 

infant's vulnerability to 

developmental problems and 

death. Infants less than 2500 grams 

at birth are 20 times more likely to 

die within the first year. Of all 

infant deaths, 2/3 occur in those 

weighing less than 2500 grams. 

Low birth-weight infants that 

survive are ten times more likely 

than normal infants to become 

mentally retarded. 

Nutrition, in turn, plays a major 

role in the prospects of the infant, 

since a poorly nourished baby is 

likely to have a low birth-weight, 

as shown by numerous studies, 

including those conducted at the 

Institute of Nutrition at the 

University of North Carolina at 

Chapel Hill. 

Unfortunately, poor women 

frequently have trouble obtaining 

proper nutrition during pregnancy, 

because they lack the financial 

resources or eat the wrong kinds of 

foods. Numerous studies of lowincome women in the United States 

and in other countries have shown 

this, and the problem of 

malnutrition leading to birth 

defects in developing Third World 

Countries is well known. 

In recognition of the relationship 

among poverty, poor nutrition, 

low birth-weight, and 

developmental problems, the U. S. 

Congress authorized the Special 

Supplemental Food Program for 

Women, Infants, and Children 

(called WIC) in 1972, and extended 

this in 1975 through 1982. The 

program provides food supplements of milk or cheese, eggs, 

cereals, and fruit juices, to lowincome women who are at 

nutritional risk. In 1979, $550 

million was allocated to this 

program which served approximately 200,000 women in that 

year. However, it is obvious this 

program could do more, since 

1,300,000 were eligible to 

participate. 

In 1978, the American College 

of Obstetrics and Gynecology 

developed a list of specific risk 

categories, where the mother might 

be expected to have a growthretarded baby. These include: The 

age of the mother (below 16 or 

above 35): rapid, consecutive 

pregnancies within two years; a 

previous history of poor pregnancy 

outcome; an inadequate income to 

purchase food; being a food 

faddist, heavy smoker, drug 

addict, or alcohol abuser; having a 

chronic systemic disease; or being 

seriously under- or overweight. A 

pregnant mother with inadequate 

weight gain would also be 

considered at nutritional risk. 

Such risk factors should be 

taken into account in planning a 

nutritional program for the 

pregnant mother. In addition to 

determine nutritional deficits her 

current dietary intake over a 24-

hour period should be evaluated to 

develop a profile of major nutrients, 

food choices, and food frequencies. 

The development of computerassisted techniques will make this 

kind of evaluation possible. 

Additionally, this profile can be 

supplemented by using a portable 

ultrasound instrument to indicate 

the woman's bodily composition of 

fats and muscles. These two 

profiles—food usage and bodily 

composition—could provide a 

complete picture of a woman's 

nutritional status and needs. 

Besides maternal nutrition, the 

nutrition of the newborn infant 

and child may also be crucial to 

preventing developmental problems 

and mental retardation. This 

problem is particularly critical for 

low-income mothers, who have a 

major difficulty providing their 

child with the proper nutrition 

after birth, due to cost constraints. 

For this reason, the WIC program 

provides supplemental foods to 

infants and young children up to 

five, as well as to pregnant 

women. 

Another strategy that may have 

a role for preventing mental 

retardation in infants, regardless of 

background, is breast-feeding. 

Today, most mothers use a 

formula soon after birth, and only 

about five percent of the mothers 

in the U. S. use breast-feeding for 

the first year or two of life, when 

the child can be weaned to solid 

food. 

However, many researchers 

recommend that breast-feeding be 

continued since it both provides 

the infant with key nutrients, and 

protects it against infections that 

can cause illness and retardation. 

The Department of Pediatrics at 

Rainbow Babies and Children 

Hospital in Cleveland, Ohio, 

points out that even though overall 

infant mortality has dropped 

sharply in the last few decades, 

breast-fed babies have a lower 

incidence of respiratory and 

diarrheal diseases, and are less 

likely to suffer from serious 

neonatal infections and allergies 

than are bottle-fed babies. 

Breast-fed babies thrive so much 

better because breast milk contains 

many protective anti-infectious 

elements not found in cow's milk. 

In addition, breast-feeding 

provides the infant with other 

advantages, such as the warmth 

and stimulation of the mother, 

factors which can contribute to a 

more secure, responsive infant. 

Also, breast-feeding helps the 

mother develop a better 

attachment to her baby, and this 

relationship may contribute to 

better child care later on. 
Lead Poisoning

 A serious and clearly preventable 

cause of mental retardation and other 

developmental problems is lead 

poisoning. While it can affect adults as 

well as children, its effect on the 

young child is particularly severe, and 

children between the ages of one and 

six are more often the victims. 

According to a Baltimore study, 

about 500,000 individuals each year 

are affected. 

Victims are likely to live in lowincome neighborhoods where there is 

increased chance of exposure to lead 

poisoning. High-risk areas are the 

inner-city where old houses are 

deteriorating, near congested 

highways, or near plants producing lead 

products. 

The major source of lead and the 

most common cause of poisoning in 

children is the flaking lead-based paint 

on the interior and exterior of old 

dilapidated houses. By eating the 

peeling 

paint, which has a sweet taste, 

children are poisoned. 

Many other sources of lead which 

can cause poisoning include lead 

particles in the air, and in dust, dirt, 

and soil. Lead can also appear in food 

if animals ingest it; or if used in 

processing, it may turn up in water, 

newsprint, and paper containing 

colored ink, like comics; in 

improperly fired 

ceramic items; plumbing; 

glassware, toys or furniture 

painted with lead-additive paints, and 

in other products. Factories 

manufacturing lead-based products 

produce lead fumes and dust as a 

byproduct, which can end up in the 

air, water and soil. 

The exhaust from an automobile 

using lead-based gas also releases 

lead into the air, from which it falls 

to contaminate roadways and the soil 

in which children play. In fact, a study 

by the Environmental Protection 

Agency indicates that most airborne 

lead comes from automobiles using 

leaded gasoline - about half of the 

autos now in use. The remainder, 

about 10 percent comes from 

industrial sources, such as smelters and 

paint factories. 

In certain high-risk areas, such as 

the inner-city or areas near some

types of industry, the problem is 

especially serious, and tests of 

residents have indicated 

high lead-levels in their blood. This 

finding has significant 

implications, since lead 

accumulates in the body, and above 

a certain blood level, 

depending upon the individual's age 

and other factors, symptoms of lead 

poisoning appear. 

At first these symptoms may be 

misleading. In the early stages they 

resemble those of other illnesses; thus, 

lead poisoning may not be suspected 

until serious and irreparable damage 

has occurred. For example, some of 

the early signs are loss of appetite, 

stomach aches, headaches, tiredness, 

crankiness, and clumsiness which 

might suggest many less serious 

diseases or just a general debilitation. 

But if the individual is tested through 

a lead screening test, the condition 

can be clearly identified at this stage 

and treated successfully. 

Children with milder lead poisoning 

develop visual motor deficits, a short 

attention span, restlessness, easy 

distractibility and impulsiveness. In its 

more serious form, lead poisoning 

leads to recurrent vomiting, dizziness, 

convulsive disorders, cerebral palsy, 

blindness, coma, and mental 

retardation. Once damage occurs to 

the brain or nervous system, there is 

no way to reverse it. 

Lead poisoning may result in 

reduced intellectual functioning in mild 

cases of ingestion without overt 

clinical symptoms. Researchers 

reporting in the New England Journal 

of Medicine in 1979 compared the 

performance of 58 children with high 

dentine lead- levels to 100 children 

with low dentine levels in Chelsea 

and Somerville, Massachusetts. The 

researchers found that the children with 

high lead-levels performed 

significantly less well on the 

Weschler Intelligent Scale, 

particularly on the verbal items, and 

on other measures of auditory and 

verbal processing and attention. 

They also behaved poorly in the 

classroom, according to teachers' 

ratings. 

Other studies have shown the 

association between lead poisoning and 

low-income areas with deteriorating 

houses. As an example, a 1974 study 

measured the dentine lead-levels of 

children in two school districts in 

Philadelphia—one serving an area with

newer homes and primarily middleincome residents, and the other serving 

primarily Black area with dilapidated 

housing. As expected, it found the 

dentine level much higher in the highrisk area, where 20 percent of the 

children had levels in the toxic range. 

Workers in industries working with 

lead-based products have also been 

found to have a higher than average 

risk of poisoning since they are likely 

to inhale lead fumes into their lungs, 

or get lead dust on their clothes, 

which may contaminate their home, 

adversely affecting their children. 

These examples show the problem 

of lead poisoning is widespread and 

serious. But, it can be prevented. There 

are two key strategies. One is to 

eliminate the hazard; the other to 

screen at-risk individuals, to 

determine if they have higher than 

normal blood levels, indicating they are 

in danger of poisoning. Then, steps can 

be taken to prevent subsequent 

exposure. 

Some efforts to eliminate the hazard 

can be taken at the individual level. 

For example, parents can be alerted, so 

they are aware it is dangerous, 

especially for children, to eat paint or 

play in areas with a high concentrate 

of lead in the soil. Plant managers 

can use techniques like air monitoring 

to determine the lead- level in the air 

and decide when there is an 

unacceptable build-up. They can also 

institute practices to reduce the amount 

of lead in the plant, such as isolating 

more hazardous operations from the 

general plant area, and avoiding 

practices that create dust clouds. 

However, other steps to eliminate 

the hazard involve a broader effort, in 

which the whole community or 

government must get involved. For 

example, the Department of Health and 

Human Services estimates that over 40 
million deteriorating homes were 

built prior to 1950, and the 

problem of flaking lead paint 

creates a serious hazard. According 

to Department statistics, five to 

seven million of these homes are 

immediate hazards because of their 

poor maintenance. 

Some government agencies have 

taken some steps to deal with this 

massive problem. For instance, in 

1971, Congress passed the LeadBased Paint Poisoning Prevention 

Act, which authorized DHEW 

(now DHHS) to help communities 

develop and carry out screening 

and treatment programs, and 

eliminate the causes of lead paint 

poisoning. The Act also prohibited 

the future use of lead-based paint 

in residential structures constructed 

or rehabilitated by the Federal 

government or using any form of 

Federal assistance. Finally, the Act 

authorized the Department of 

Housing and Urban Development 

to establish procedures to eliminate 

immediately the hazards of leadbased paint in housing under its 

jurisdiction. The Department was 

further instructed to notify 

tenants and purchasers of assisted 

housing constructed before 1950 

about the potential hazards of 

lead-based paint. 

Another step in the fight against 

lead poisoning is recent legislation 

requiring new cars to use lead-free 

gasoline to reduce airborne lead. 

But still, much needs to be done 

on a massive scale to reduce or 

eliminate the risks of poisoning 

from industrial wastes. 

Besides efforts to eliminate the 

hazard, the other major prevention 

approach is screening to identify 

an individual suffering from lead 

poisoning, even before the 

condition becomes symptomatic. 

There are two major screening 

techniques: one, which involves 

determining the individual's level 

of lead in the blood, measures lead 

absorption; the other test, which 

uses dried drops of blood collected 

on Guthrie filter paper, is called 

the EP test (for erythrocyte 

protoporphyrin screening) and 

measures the individual's level of 

lead toxicity. 

In either case, once an 

individual is identified, he can be 

removed from the hazard, and, if 

any symptoms have started to 

develop, he can be treated for 

them. Since the symptoms don't 

usually appear until three or more 

months after exposure, and 

result from a gradual build-up of 

toxicity, screening is particularly 

important to identify an 

individual at risk. 

The value of screening is 

shown in the high number of 

poisoning cases identified. For 

example, in a screening program 

carried out in five New York 

institutions, the tests showed 

that 4-13 percent of the 

individuals were affected. In a 

1970 survey of a high risk area of 

Norfolk, 20 percent of the children 

from one to six had elevated blood 

levels. 

Many lead poisoning prevention 

programs use screening as an 

essential component. One 

example of this is the Norfolk, 

Virginia Childhood Lead 

Poisoning Prevention Program, 

which has been operating 

successfully since 1970. The two 

major program features are the 

early detection through screening 

of children with high level of lead 

absorption, followed by effective 

medical and environmental 

intervention. 

Other components of the 

program include:  An educational and outreach 

program to make members of 

the community aware of the 

danger and prevalence of 

childhood lead poisoning; 

 An advisory board of 

community members which 

assists the program staff in 

planning and executing 

program activities. The board 

also serves to gain citizen 

support; 

Contact with other city 

health, environmental, and 

legal agencies to improve and 

enforce city codes related to 

health and housing which 

impact on the prevention of 

lead poisoning; 

 A follow-up medical action 

program for children at risk 

to reduce the child's exposure 

to lead and provide general 

pediatric care, health 

education for family, hospital 

therapy when appropriate, 

and a corrective for 

nutritional deficiencies which 

exist; 

 A comprehensive housing 

management system to 

investigate suspected 

dwellings, reduce or remove 

lead hazards, and assist 

homeowners who are in 

financial difficulty to 

reduce or remove the

hazard. 

Since the beginning of this 

comprehensive prevention 

program, about 65,000 Norfolk 

children and 1,000 adults have 

been screened, and 3,000 houses 

inspected. Due to these efforts, 

about 300 children were 

hospitalized after lead poisoning 

was discovered, and no Norfolk 

child has died of lead poisoning 

since the program began. In short, 

lead poisoning can be prevented 

through a combination of medical 

and environmental approaches 

designed to reduce the hazards of 

exposure, and to quickly treat the 

exposed individual while there is 

still time. 

Problems Related to the 

Effect of Alcohol, Drugs, 

Teratogens, and Mutagens 

Another major source of 

retardation comes from the effect 

of alcohol, drugs, and noxious 

substances in the environment and 

work place. Some substances called 

mutagens, can change the genetic 

structure of the reproductive cells 

in either men or women before 

conception takes place, resulting in 

abnormally formed offspring. 

Some industrial chemicals and 

radiation are among the mutagens.

Other substances, called 

teratogens, are birth defect-causing 

agents, which act directly on the 

fetus after conception,. Among 

them are methyl mercury, 

pesticides, x-rays, and anesthetic 

gases. These have a wide range of 

effects on the fetus, ranging from 

malformed organs to poorly 

developed bodily structures, 

depending upon the fetal stage of 

development at the time of 

exposure. In most cases, the first 

trimester of pregnancy is the most 

critical period when teratogens 
have the most detrimental effect, 

since this is when the organs are 

developing. But this is not true for 

all teratogens. For instance, 

radiation causes a continuum of 

effects, depending upon the stage of 

gestation when exposure occurs. In 

the first phase of development, it 

usually kills the embryo. In the first 

or second trimester when the brain is 

developing rapidly, exposure can 

result inmicrocephaly and mental 

retardation. In the third trimester, the 

effect of exposure is usually a low 

birth-weight baby. 

In many cases, the effect of a 

particular teratogen on the 

developing fetus produces certain 

well known syndromes or patterns. 

Occasionally, a substance affects 

the genetic structure of the 

parents, too. For example, 

radiation acts as a mutagen, which 

acts directly on the chromosomes to 

change them. But it also interferes 

with fetal development by 

disrupting DNA synthesis and cell 

replication in the fetal brain, leading 

to microcephaly and mental 

retardation in babies exposed to 

radiation during pregnancy, as 

occurred subsequent to exposure to 

atom bomb explosions. 

The reason that alcohol, drugs, 

and other teratogens have adverse 

effects on the developing fetus is 

that many teratogenic substances 

are transmitted to the fetus 

through the placenta, by way of 

the mother's bloodstream. Thus, 

anything that has a detrimental 

effect on the mother's blood 

chemistry or metabolism, such as 

teratogens, can directly or 

indirectly damage the developing 

fetus. The most dangerous period is 

usually the first 12 weeks of 

pregnancy, when the baby's body, 

arms, legs, internal organs, and 

brain are being formed. After this 

critical period, the same teratogens 

may not have any effect. 

One of the most common 

problems in this category is the 

fetal alcohol syndrome, which may 

affect the unborn infant of a 

pregnant woman who drinks. The 

affected infant will generally be 

born small, especially in head size; 

have malformed facial features, 

such as narrow eyes, low nasal 

bridge and short upturned nose; 

and will generally be poorly 

coordinated and mentally retarded. 

About half have heart defects. For 

adolescent mothers who drink, the 

problem is even more serious, since 

they are more apt to have 

premature low birth-weight babies. 

Narcotics addiction in the mother 

can lead to addition in the infant, as 

well as producing a sick baby, who 

undergoes withdrawal symptoms. 

Furthermore, narcotics addicts tend to 

neglect their own health. Cigarette 

smoking, also, can have damaging 

effects since mothers who smoke 

heavily tend to give birth to low 

birth-weight babies, and such babies 

may have learning problems. 

Smoking mothers also have a high 

rate of spontaneous abortions, and 

cigarette smoking can stunt the 

growth of the fetus and deprive it of 

adequate nutrients. The greatest 

danger is during the second half of 

the pregnancy, when the fetus is 

undergoing the greatest growth. 

Other teratogens which can cause 

mental retardation in the fetus by 

affecting the parents' reproductive 

cells or acting directly upon the 

developing fetus are found in the 

environment and work place. These 

currently constitute the largest and 

most serious source of defects due to 

teratogens. 

For example, both males and 

females working with anesthetics 

are at high risk of having defective 

offspring. The direct exposure of 

women doctors or nurses to 

anesthetic gases is associated with a 

higher incidence of infertility, 

spontaneous abortion, still birth, 

low birth-weight, and congenital 

malformation than the average. 

Women married to male anesthetists 

are at-risk for having abnormal 

infants. 

Other studies have found that 

carbon monoxide poisoning is 

associated with fetal death and severe 

brain damage, although the effects of 

low level carbon monoxide, such as 

experienced by individuals working 

around automobile exhaust fumes, is 

uncertain. 

Although many of the studies on 

environmental hazards have 

focused on the effects on females, 

some have shown that males are atrisk, too, because some teratogens 

have a detrimental effect on sperm 

cells. Ironically, the result of this 

effect is that males have a higher 

chance of passing on a chemically 

induced mutation to their offspring 

than females, since sperm 

production involves the mitotic 

division of cells throughout the 

male's reproductive life. 

Other implicated substances 

include numerous metals, such as 

lead, metallic mercury, cadmium; 

organic chemicals, such as 

formaldehyde, pesticides, methyl 

mercury, polychlorinated biphenyls, 

dioxin, DDT, and many gases. 

Some researchers have tested 

these substances with animals and 

have produced retardation in their 

offspring. For example, in 1974 an 

investigation of the effect of lead on 

sheep fetus found that the, lead 

crossed the placenta into the 

fetuses, and impaired the offspring's 

subsequent learning ability. 

However, because the fetus and 

mothers are exposed to many 

substances in the environment 

simultaneously, it is often difficult 

to identify a particular causal 

agent, and thereby determine cause 

and effect relationships between 

particular teratogens and fetal 

abnormalities. This problem of 

identification and specifying causes 

complicates the development of 

prevention strategies. 

Also, prevention is complicated 

by other factors. In many cases, it is

difficult to avoid exposure, since the 

likelihood of being exposed to various 

hazards in the environment and work 

place has increased, because the 

number of processes producing 

these teratogens has increased. 

Workers, for example, are 

exposed to toxic substances not 

only when they work in nuclear 

and chemical-related occupations, 

but also in many commonplace 

activities such as toll-booth 

attendants, hospital workers, 

hairdressers, the Love Canal 

residents in New York. etc.. 
To deal with the variety of 

problems caused by teratogens, 

prevention strategies may 

involve genetic counseling, 

amniocentesis, or fetal 

monitoring to identify parents 

at-risk and determine if their 

fetus is developing normally. 

However, broader prevention 

strategies are also being 

investigated by the National 

Institute for Occupational 

Safety and Health, the U.S. 

Environmental Protection 

Agency, and other organizations 

to consider ways of cleaning up 

the workplace and the 

environment to reduce the risk 

of exposure. 

Accidents

Another biomedical/ 

environmental source of mental 

retardation that can often be 

prevented is childhood accidents. 

These accidents can cause 

mental retardation as a result of 

trauma to the brain, which 

produces irreversible damage. 

As the national statistics 

show, accidents kill and injure 

more children in the United 

States than any other single 

cause, after the first critical 

months of infancy. Some 

examples of accidents 

include electric shocks from 

exposed outlets and frayed 

electric cords; burns from boiling 

water or items cooking on a 

stove; falls from windows and 

down stairs; ingested medicines 

from the medicine cabinet; etc. 

But the greatest number of 

accidents involves the 

automobile, which causes more 

deaths and permanent injuries 

from accidents than all other 

types of accidents combined. 

Ironically, 90 percent of all 

childhood accidents can be 

prevented according to the 

American Academy of 

Pediatrics, just by exercising 

caution to prevent the occurrence 

of the accidents in the first place.

This caution is particularly 

applicable in the case of 

automobile accidents, since the 

use of a seat belt can prevent 

serious injury or death in the 

event of most sudden stops or 

crashes. But, according to a 

1979 paper issued by the U. S. 

Department of Transportation, 

93 percent of all children 

under age ten travel without 

any restraints. If they did have 

restraints, many deaths and 

injuries could be prevented. 

According to the Department of 

Transportation, if all children 

under the age of five were 

restrained at the time of an 

accident, the number of deaths 

could be reduced by 91 percent 

and the number of injuries by 78 

percent. Without a seat belt, any 

sudden stop at 30 miles an hour or 

more can project a child 

through the windshield with as 

much force as if the child had 

fallen from a third-floor 

window. Similarly, a crash at 20 

miles per hour or more is likely 

to hurl the child through the 

windshield or thrust him against 

the dashboard. Because of the 

force in either case, no adult 

will be strong enough to restrain 

him. As a result, the child may 

be killed in such an accident or 

suffer severe brain damage 

leading to mental retardation. 

However, a well designed 

restraining device appropriate for 

a child can prevent this tragedy. 

Unfortunately, many adults 

do not exercise these 

precautions. To get them to do 

so, some communities have 

developed prevention programs 

to alert them to the dangers, and 

to accident prevention strategies. 

One such program is the Ukiah 

Car Safety Campaign, sponsored 

by the Ukiah Valley Association 

for the Handicapped and the 

Prevention Committee of the 

Mendocino County Council on 

Children and Youth in California. 

The program is designed to get 

parents to use the appropriate car 

safety equipment with their 

children, starting with the first trip 

home from the hospital. Two main 

approaches are used. One is an 

educational campaign to make 

parents aware of the hazards and 

importance of using safety belts. 

The other is an infant car seat 

exchange, through which safety 

seats are available to parents in 

various sizes, so they can get larger 

and larger seats as their children 

grow. 

To promote awareness, 

community members in the 

program have used various 

techniques, including a contest 

to find slogans and T-shirt 

designs; displays at the local 

library; speaker presentations 

to local groups like the 

Soroptimists; car safety booths 

at a local fair; and fund-raising 

dinners and benefits. In turn, 

many local teachers have 

responded to the campaign by 

teaching car safety principles 

to their students. 

Once parents are alerted to the 

dangers, the exchange program 

makes it easy for them to get the 

appropriate safety equipment. The 

Ukiah Valley Association 

provides safety seats from its 

stock of about 150, and the 

borrower pays a minimal $15 

deposit when picking it up. 

There is a $10 refund on return. 

The remaining funds are used to 

help finance the program. 

But individual communities 

are not the only ones to express 

concern. The State and Federal 

governments have taken some 

action too. For example, in 

January, 1978, Tennessee 

became the first State to pass a 

law establishing safety 

requirements for child passengers 

under four years of age, and 

subsequently the State launched a 

Child Passenger Safety Program 

to publicize the law, and educate 

residents about the importance of 

child restraints. Later, 

Washington State passed a 

similar law. 

On the Federal level, the U. S. 

Department of Transportation has 

developed a performance 

standard for child-passenger 

protective devices, and has 

encouraged each State to enact 

legislation requiring drivers to use 

devices meeting this standard. 

Although there is no model law 

on child restraints, the 

Department of Transportation has 

sent copies of the Washington 

and Tennessee laws to all the 

States as possible models. The 

key provisions of both laws are 

that every parent or individual 

driving a car should properly 

secure a child passenger in an 

adequate restraint system. 
Other proposed safety programs are 

in the offing. For example, the 

California Chapter of the 

American Academy of Pediatrics 

submitted a proposal for a 

Statewide Child Passenger Safety 

Program to the California Office of 

Traffic Safety, in June, 1979. 

The proposed goal would be to 

establish a comprehensive, 

coordinated program to reduce 

deaths and injuries to child 

passengers in motor vehicle 

accidents through increasing the 

use of safety seats and belts. 

Among other recommendations, 

the California Chapter suggests 

that all obstetricians and 

pediatricians counsel parents on 

the need to use a safety restraint 

with their new baby, inform 

community members to develop a 

grassroots organization to promote 

car safety through contacting local 

groups, giving workshops, and 

using the media. 

The University of 

Alabama's 

Perinatal Infections 

Clinic Program____

In many university affiliated 

facilities, efforts to deal with 

preventing mental retardation are 

multi-pronged. One such Center is at 

the University of Alabama in 

Birmingham, where the Center for 

Developmental Learning Disorders 

(CDLD), sponsors a Perinatal 

Infections Clinic. This clinic 

operates as part of CDLD to identify 

and care for infants with perinatal 

infections. Its staff is 

multidisciplinary and includes three 

doctors specializing in infectious 

diseases and the care of children, and 

several specialists in developmental 

and learning disorders, who perform 

developmental examinations and 

hearing tests. 

Perinatal infections can cause 

serious problems, although they 

often are unrecognized. According to 

researchers at the University of 

Alabama, about 13 percent of all 

pregnant mothers become infected 

with certain types of germs that 

may cause problems for her 

offsprings—the most common being 

cytomegalovirus (CMV), rubella 

virus, herpes simplex virus (HSV), 

toxoplasma, syphillis, and hepatitis. 

Not all babies of infected mothers 

become infected, though it is 

estimated that approximately one to 

seven percent of the infants are 

infected while still in the womb, or 

during or shortly after birth, and 

sometimes because of their mother's 

milk. In turn, about 10 - 20 percent 

of these infected infants develop 

serious problems with vision, hearing, 

or the nervous system due to their 

infection. A case in point is Ricky, 

referred to earlier. 

Unfortunately, not all of these 

problems are immediately apparent, 

a fact which makes diagnosis and 

treatment more difficult. Only about 

10 percent of the infected children are 

born with symptoms like jaundice, 

skin rash, pneumonia, microcephaly, 

seizures, motor disorders, perceptual 

problems, deafness, and various 

Central Nervous System (CNS) 

problems. However, the remaining 

90 percent subsequently develop 

symptoms in the next few years. 

Thus, a major function of the 

clinic is careful monitoring of the 

infants of mothers who have had 

infections during pregnancy, 

so any abnormal or CNS 

functioning can be quickly 

detected and treated, possibly by 

environmental intervention, to 

improve the child's performance 

or ability to cope. 

Because the effects of 

damage from infections may 

not show for several years, 

the clinic continues its care 

and testing program through 

infancy, the preschool years, 

and even after the child is in 

school. If abnormalities occur, 

the clinic staff consults with 

the parents to devise strategies 

to help the child develop 

communication skills, and to 

find an educational setting that 

will help the child to develop 

normally. 
PREVENTION 

RESOURCES

 

Federal, State and local 

governmental and private agencies 

play a special role in assisting or 

overseeing efforts to prevent mental 

retardation. These include 

University Affiliated Facilities 

(UAFs), Mental Retardation 

Research Centers, Maternal and 

Child Health (Bureau of 

Community Health Services), 

National Institute of Child Health 

and Human Development, Division 

of Developmental Disabilities 

(Office of Human Development 

Services), Office of Special 

Education and Rehabilitation 

Services (formerly Bureau of 

Education for the Handicapped), 

and institutions of higher learning. 

 The agencies and institutions 

described here are not intended to 

cover the universe of resources, but 

rather to give a brief overview of 

those agencies, particularly at the 

Federal level, that provide 

assistance to State and local 

governments and private agencies 

concerned with the prevention of 

mental retardation. 

UAFs Involvement in 

Prevention Activities

Prevention of mental retardation, 

and other developmental disorders, is 

a major goal of PCMR, the 

Department of Health and Human 

Services, and numerous other 

concerned organizations, public and 

private, throughout the United States. 

Prevention is also integral to the 

missions and goals of the University 

Affiliated Facilities (UAFs), and 

UAFs, in joint partnership and in 

leadership roles, have introduced 

services and other activities that have, 

and will in the future, significantly 

reduce the number of individuals 

faced with lives dramatically altered 

by mental retardation and other 

developmental disabilities. 

University Affiliated Facilities for 

the Developmentally Disabled first 

 

sensitized, and made more 

knowledgeable about prevention 

issues. UAFs are actively involved, 

through the Prevention and Liaison 

Committee of the American 

Association of University Affiliated 

Programs, the American 

Association on Mental Deficiency 

(AAMD) Prevention Committee 

(2/3 of, which consists of UAF s 

members, including the Committee 

Chairperson), and joint meetings 

with the AAMD and Mental 

Retardation Research Centers, in 

presenting major symposia on 

prevention issues which reach 

numerous professionals each 

year. UAFs have also sponsored 

international meetings for social 

service professionals highlighting 

early intervention and other 

aspects of prevention. 

UAFs public education programs, 

through news releases, TV spots, 

booklets, input to school curricula, 

and participation in workshops and 

conferences sponsored by 

community groups play an 

important role in prevention of 

mental retardation. Community 

outreach has been established as an 

identified discipline at many 

UAFs, and serves as an important 

vehicle for informing, and linking 

with, the public. UAFs screening 

activities for such conditions as 

PKU, lead-base paint poisoning 

and Tay-Sachs are widely 

publicized to raise awareness levels 

and encourage public involvement. 

UAFs play critical roles in linking 

parents of high-risk children with 

vital resources, and in counseling 

pregnant teenagers, who run a high 

risk of having mentally retarded or 

developmentally disabled children. 

Educating the public on the 

dangers of fetal alcoholism, and 

the benefits and uses of 

amniocentesis, vaccination and 

immunization are important parts 

of the UAFs activities. 

appeared in Federal legislation in P.L. 

88-164, the Mental Retardation 

Facilities and Community Mental 

Centers Construction Act of 1963. 

There are now 47 UAFs located in 

34 States. Five satellite centers serve 

an additional 4 States. UAFs provide 

interdisciplinary training to medical 

and other professionals, graduate and 

undergraduate students, paraprofessionals, parents, and others. An 

estimated 77,000 persons were 

trained in 1979 at UAFs. UAFs 

disseminate new techniques for the 

evaluation, diagnosis and treatment of 

individuals with mental retardation 

and other developmental disabilities. 

As an integral part of all these 

activities, a wide range of services are 

provided to handicapped individuals 

- an estimated 46,000 people in 1979. 

UAFs, as part of their strong 

prevention orientation and in 

support of Maternal and Child 

Health, Title V goals, have been 

involved in a wide range of 

prevention activities. Professionals 

from UAFs throughout the country 

have been actively involved in 

promoting relevant legislation and 

governmental programs. UAFs have 

been actively involved with the 

development, passage and 

implementation of the Genetics 

Diseases Act (P.L. 94-278), for 

instance, through testifying at 

Congressional hearings, serving on 

advisory groups, and developing 

programs to support this as well as 

other Federal initiatives. UAFs are 

actively involved on the State level, 

also, serving on DD Councils, and 

advisory and administrative boards 

for a number of programs directly 

linked to prevention. 

Prevention is a regular part of the 

professional education curriculum 

at the UAFs. Through on-campus 

training and off-campus courses, 

workshops, conferences, newsletters 

and widely disseminated training 

materials, professionals in a 

variety of disciplines are alerted, 

 

 

 
UAFs are integral to the support 

and dissemination of research 

findings relating to prevention. 

The most accurate and advanced 

research results are implemented 

by the UAFs through genetic and 

metabolic screening programs 

(involving both testing and 

counseling, early identification 

programs, and work relating to 

environmental hazards). 

UAFs have also been involved 

with industry in the area of 

product safety to prevent needless 

disabling accidents, gathering and 

presenting information on 

accidents relating to infant cribs, 

for instance. 

As noted by Dr. Allen Crocker, 

Director of the UAF at the 

Children's Hospital Medical 

Center in Boston, "I think it is fair 

to say that the UAFs are at the 

crossroads of public, professional 

and agency activities, and are 

commonly asked to be spokespersons . . . on prevention." UAFs 

are not only the spokespeople, but 

active leaders in providing the 

services and training vital to the 

goal of preventing mental 

retardation, as well as other 

developmental disabilities. 

University Affiliated Facilities 

have four distinct roles: 

1) To train administrative, 

professional, technical, direct 

care and other specialized 

personnel to work with 

mentally retarded and 

developmental disabled 

persons. 

2) To demonstrate a full range 

of exemplary services which 

should be available to this 

population. 

3) To conduct the necessary 

research incidental to these 

activities. 

4) To assist the States, regions 

and communities to reach 

their respective objectives. 

Mental Retardation

Research Centers

In 1963, Public Law 88-164 

Title I, a Federal act entitled 

"Construction of Research Centers 

and Facilities for the Mentally 

Retarded," led to the 

establishment of 12 Mental 

Retardation Research Centers 

(MRRC) across the Nation. 

The primary objective of 

MRRC is the promotion of more 

research in the prevention of 

mental retardation. Mental 

Retardation Research Centers 

train research students and 

fellows in mental retardation and 

related aspects of human 

development. All research 

activities are pertinent to these 

issues. The philosophy of 

MRRCs is to integrate basic and 

applied research. Clinicians, 

teachers and investigators 

exchange ideas and data which 

influence both study and practice 

in the field of mental retardation. 

Research results and 

methodologies are disseminated to 

other scientists and clinicians via 

informal exchanges, interdisciplinary seminars and 

symposia, and publication in 

professional journals. 

The Mental Retardation 

Research Training Program offers 

both pre- and post-doctoral 

training programs in 

Developmental Biology and 

Human Genetics, Neurobiochemistry, Neurophysiology, 

Socio-Behavioral Studies and 

Infant Studies. 

UAF Program Relationship to 

Mental Retardation 

Research Centers 

Established Under Public 

Law 88-164______________

By virtue of commonality of 

interests, legislative origins, and in 

most instances physical location, 

the 12 major mental retardation 

research centers located throughout 

the Nation should be considered in 

this examination of research 

aspects of the UAF program 

mission. These 12 research centers 

whose central focus is basic 

research, receive Federal support 

from a number of institutes in the 

National Institutes of Health. 

However, their core support, 

administered by the National 

Institute of Child Health and 

Human Development, is substantial and has a stabilizing 

influence. 

These multidisciplinary centers 

were established to address, on a 

systematic and long-range basis, 

the many factors that impact upon 

the condition of mental 

retardation. They have made 

substantial contributions in 

identifying genetic disorders 

prior to birth, and arresting or 

reversing some metabolic 

imbalances leading to mental 

retardation stemming from socialenvironmental causes. Several 

have made major contributions 

to behavior and educational 

technology. 

Obviously, cooperation and 

collaboration is desirable between 

UAFs and research centers. Where 

both programs are present at the 

same university, the opportunities 

for cooperative efforts are much 

greater. Ten universities have both 

programs present in a variety of 

configurations and with little 

consistency of pattern in their 

relationships. Of those ten 

locations, a number include UAFs 

and research centers as part of the 

same facility. This physical (and 

usually administrative) 

continuity has been highly 

instrumental and productive in 

providing good research 

background for UAF training, 

while the clinical experience of 

the UAF has stimulated and 

focused research activities on 

problems areas of interest to 

clinicians. 

The differences among these 

programs are significant. Research 

activities in UAF's focus (and 

should increasingly focus) on 

problems which emerge from the 

clinical experience of these 

programs. The research centers, on 

the other hand, investigate 

everything from the single cell to 

complex community intervention 

programs and sponsor a variety of 

controlled studies aimed at 

modifying the physical and social 

environment of mentally retarded 

persons. The research centers are 

involved in basic research not 

necessarily tied to training-service 

mission. 

For the research centers, 

interaction with service providers 

is less direct than in the case of 

the UAF program. Consumer 

representatives are less likely to 

look to research centers for 

tangible, immediate results or 
activity than to UAFs with their 

clinical and community-based 

programs. Finally, the research 

centers have retained mental 

retardation as a focus, while UAFs 

(at least those supported by the 

Administration on Developmental 

Disabilities Office, which, of 

course, is defined to include certain 

other conditions in addition to 

mental retardation) have retained 

a broader focus. 

MCH Prevention Programs and

Special Initiatives____________

The bulk of the $377.3 million 

appropriated for Maternal and 

Child Health and Crippled 

Children's Programs for FY 1980 

are allocated to the States on a 

formula basis for a broad range of 

health services to mothers, children 

and the handicapped. These 

services administered by the States 

include a number of specific 

preventive efforts in each State, 

such as immunization clinics, 

family planning, maternity and 

infant care services for high risk 

pregnancies, school health services, 

dental care, intensive infant care 

units, etc. These formula funds are 

also utilized by the States to 

support newborn screening 

programs for metabolic disorders 

through which 97 percent of all 

newborns in this country are 

screened. Support for the 

management and dietary treatment 

of over 2000 infants with 

metabolic disorders and thereby 

the prevention of mental 

retardation is also derived from 

this formula distribution to the 

States. The bulk of the 160 Child 

Development Clinics serving over 

40,000 children and their families 

suspected of or with mental 

retardation, with a major role in 

the prevention of institutionalization, are also supported by the 

States through this means. 

In addition to the prevention 

efforts being carried out through 

the above joint Federal/State 

programs, the Office of Maternal 

and Child Health has implemented 

prevention programs through its 

research and training programs 

(including the UAF programs) and 

the following special prevention 

initiatives: 

 Immunization Tracking 

Projects - designed to 

develop follow-up systems 

to insure that all children 

begin and complete the basic 

immunization schedule and to 

identify children who are at 

risk of not being immunized. 

 National Demonstration 

Program on Accident 

Prevention and Injury 

Control in Children - a 

coordinated effort of Title V 

programs, Emergency Medical 

Services and Poison Control 

Centers designed to decrease 

preventable morbidity and 

mortality due to accidents in 

childhood. 

 Improved Pregnancy 

Outcome 

Initiative - Special grants to 

33 States with high birth 

rates, high infant, fetal, 

neonatal and perinatal death 

statistics for programs 

designed to reduce these rates. 

 Improved Child Health 

Initiatives - designed to 

decrease the infant mortality 

rate in selected areas of States 

with excessive morbidity and 

mortality to at least the 1977 

level of the State. 

Additional programs authorized 

under the Public Health Service 

Act and administered by the Office 

of Maternal and Child Health 

which include major aspects of 

prevention efforts are: 

The Sudden Infant Death 

Syndrome Program

The Hemophilia Center Grant 

Program 

The Sickle Cell Education, 

Testing and Counseling

Program 

The Genetic Disease Grants 

Program 

THE STATE 

AGENCIES 

State agencies can play a 

major role in supporting efforts 

to prevent mental retardation. 

In 1978 the National Association 

for Retarded Citizens conducted 

a survey of State agencies to 

learn if the State agency 

provided or financially supported 

prevention 

services, what types of services it 

supported, and whether or not the 

agency carried out these 

activities in cooperation with 

other State and/or local agencies. 

Thirty-two State agencies 

responded to this survey. About 

two-thirds of them indicated they 

supported or provided genetic 

screening, counseling services, and 

case finding. Following are 

examples of successful State 

programs in each category: 

States with Comprehensive 

Statewide Prevention 

Programs______________

One of the States with a 

comprehensive prevention program 

is California, which has 21 

regional centers for the 

developmentally disabled 

throughout the State. These centers 

offer genetic counseling and 

screening, as well as early 

intervention services. 

Also, California has a High-Risk 

Infant Follow-Up Program in 

several counties, including Los 

Angeles, Orange and San Diego 

counties, which provides 

intervention services for high-risk 

infants. A related program 

involves early case finding, and 

there are numerous such programs 

all over the State. In these 

programs, the focus is on 

identifying infants who are at risk 

of becoming developmentally 

delayed due to immaturity, 

physical problems, or age of 

mother and providing them with 

follow-up services at home to 

prevent or reduce developmental 

delays. 

Another State with a 

comprehensive approach is 

Florida, which has a master 

prevention plan, called "Strategies 

for Prevention of Developmental 

Disabilities." Each year, the plan 

is revised and updated by a 

Prevention Task Force, composed 

of representatives from various 

organizations including the State's 

retardation and mental health 

agencies, the children's medical 

services and health programs, the 

DD Planning Council, the 

Department of Education, 

consumers, and others. 
Under the auspices of this 

master plan, a variety of services is 

carried out. For example, the 

Florida Department of Health and 

Rehabilitation Services has 18 

different types of prevention 

programs. Besides assisting the 

Department with these programs, 

the State Developmental Services 

Program Office has four 

prevention programs of its own. 

The programs of the two agencies 

include early intervention 

services for infants under three, 

child development training 

programs for preschools, parent 

training programs, and a family 

placement program to prevent 

disabled children from being 

institutionalized. 

Virginia has a comprehensive 

prevention program, too, which is 

carried out by the Virginia 

Department of Health, and other 

organizations. Some of the Health 

Department programs include:  The Bureau of Crippled 

Children, which provides 

indigent .children with 

specialized diagnosis and 

treatment for a wide range of 

childhood handicapping 

conditions.  The Bureau of Maternal and 

Child Health, which operates 

14 child development clinics 

that provide a comprehensive 

pediatric diagnostic 

evaluation, and offers 

hospital care to medically 

indigent newborns, including 

special treatment for high-risk 

newborns. Also, the Bureau 

screens all newborns for PKU 

and hypothyroidism, and 

provides family planning 

services, maternal care to 

high-risk mothers, genetic 

testing and counseling, and 

other services.  Participation by Virginia's 

three medical schools,—the 

Medical College of 

Virginia, the University of 

Virginia, and Eastern 

Virginia Medical School. 

These offer various 

services, including a weekly 

genetics clinic and supporting 

laboratory services: antenatal 

testing, using amniocentesis, 

ultrasonography, and other 

techniques; and specialty 

clinics for conditions related 

to mental retardation, such as 

problems with metabolism 

and cystic fibrosis. These 

schools are also collaborating 

with the Department of Health 

to design and deliver a comprehensive genetics screening, 

counseling education, medical 

referral, and follow-up 

program for all of Virginia. 

In addition, a variety of public 

and private organizations, such as 

the March of Dimes, the Muscular 

Dystrophy Association, the 

Community Mental Health and 

Mental Retardation Service 

Boards, and the Virginia 

Association for Retarded Citizens 

offer a wide range of prevention 

programs. 

States with Statewide 

Genetic Screening and

Counseling Programs

South Carolina and Texas are 

two examples of States with 

Statewide genetic screening and 

counseling programs. 

In South Carolina, there are two 

programs—one coordinated by the 

Greenwood Genetics Center, and 

the other, called the "Genetics 

Associate Program," administered 

by the Department of Mental 

Retardation. 

The Greenwood Center, founded 

in 1975, is the major provider of 

genetic screening services in the 

State, offering a full range of 

clinical services for patients and 

their families, through its main 

clinic and five satellite clinics. 

These services include clinical 

evaluations, counseling, diagnostic 

laboratory testing, treatment plans, 

and long-term follow-up, and are 

designed to prevent the impairments often associated with genetic 

disease. 

The Genetics Associate 

Program, developed in 1976, was 

designed to supplement the 

activities of the center. Through 

the program, a genetics associate is 

assigned to each of the four 

regional genetics centers to review 

case histories and counsel with 

families with existing or potential 

genetic problems. 

In Texas, the Genetics 

Screening/Counseling Service is 

run by the Texas Department of 

Mental Health and Mental

Retardation. Besides the central 

office in Denton, there are 13 

regional clinics, which provide a 

variety of services including case 

finding, referral screening, client 

scheduling, resources coordination, 

community education, and followup counseling. To assist in the 

counseling process, a multidisciplinary team from the central 

office travels all over the State, 

and thereafter a team of physicians 

in the central office reviews the 

cases to make recommendations on 

diagnosis and risk counseling. 

States with High Risk 

Intervention Programs

Arkansas and Missouri are two 

States which have high-risk 

intervention programs. 

In Arkansas, the focus of 

intervention is on the teenager to 

decrease the number of adolescent 

pregnancies and thereby the 

incidence of developmentally 

disabled children. The program to 

do this is a federally-funded, pilot 

program based in Pine Bluff, 

Arkansas, called ACCESS, which 

has been in operation since 1977. 

It offers a variety of awareness 

and educational programs to 

teenagers, parents, and community 

members, dealing with adolescent 

pregnancy, the causes of 

developmental disabilities, 

nutrition, prenatal care, and 

parenting. 

In Missouri, the Missouri HighRisk Maternity and Child Care 

Program focuses on the high-risk 

mother and child. Established by 

the State Legislature in 1974, the 

program was developed to reduce 

the incidence of perinatal mortality 

and mental retardation by 

providing medical and surgical 

assistance to mothers and infants 

with high-risk conditions. It is 

administered by the Bureau for the 

Prevention of Mental Retardation 

in the State Division of Health, in 

cooperation with the Division of 

Mental Retardation and 

Developmental Disabilities. 

42 
Those participating are referred 

by practicing physicians. To 

make it possible for any 

individual to participate, 

regardless of location or 

financial means, the program 

provides funds for transportation 

to the hospital for care. In 

addition, the program offers 

community health nursing in the 

person's home or in a nearby city 

or county health department. 

Besides providing regular nursing 

services, the nurses inform the 

individual about supplemental 

food programs, immunization 

programs, and other resources for 

the at-risk infant. 

States with Early 

Casefinding Activities_____ 

Several States have programs 

which offer early casefinding 

such as Delaware, Idaho, North 

Carolina, Pennsylvania, and 

Rhode Island. For example, 

Delaware has a "Community 

Nursing and Developmental 

Program," which serves 

approximately 900 children and 

their parents each year. Under the 

auspices of this program, three 

nurses and two child development 

counselors provide four basic 

services; 1) they go out in the 

community to locate cases; 2) they 

intervene early with a home-based 

self-help program for the 

developmentally delayed; 3) they 

refer the delayed to appropriate 

agencies and consult with these 

agencies about the case; and 4) 

they provide up to three months of 

short-term respite care each year, 

in which they care for the 

developmentally delayed child 

each day in a special center to 

give the parent a rest from caring 

for the child. With the exception of 

respite care, for which parents are 

charged on a sliding scale based 

on their ability to pay, all services 

are free. 

In Idaho, Regional Adult and 

Child Development Centers 

provide approximately 8,000 

children a year with early and 

periodic screening, diagnosis, and 

treatment. Once a child is 

identified as having a 

developmental disability, he is 

eligible to receive services at no 

charge, since financing is provided 

through the Federal/State 

Medicaid program. 

In North Carolina, multidisciplinary teams, typically 

made up of a special educator, 

speech therapist, a physical 

therapist, and/or a social 

worker, make home visits to 

families with developmentally 

delayed children from birth 

through three years of age. Then 

they work with the parents to 

enhance their effectiveness as 

parents, and provide direct 

developmental training for the 

child. 

In Pennsylvania, the Office of 

Mental Retardation and the 

Department of Welfare support 73 

projects which provide pre school 

intervention services for over 3,000 

handicapped children from birth to 

school-age. A similar program is 

offered in Rhode Island by the 

Rhode Island Department of Mental 

Health and Mental Retardation. 

Office of Special Education and 

Rehabilitation Services (formerly 

The Bureau of Education for the 

Handicapped)___________

The Office of Special Education 

and Rehabilitation Services 

provides various types of 

educational assistance including: 1) 

assisting States, colleges, 

universities, and other institutions 

and agencies meet the educational 

needs of handicapped children 

requiring special services; 2) 

administering programs, such as 

those which offer support for 

training teachers and other 

personnel or provide grants for 

research; 3) providing financial 

aid to help States initiate, expand, 

and improve their resources for 

helping handicapped individuals; 

and 4) providing media services 

and captioned films for deaf and 

developmentally disabled persons.

Prior to the 1979 reorganization 

of the Department of Health, 

Education, and Welfare, the 

Bureau was part of the Office of 

Education. Since the creation of 

the Department of Education in 

1979, it has been consolidated with 

the Rehabilitative Services 

Administration to form the Office 

of Special Education and 

Rehabilitation Services. This 

consolidation occurred to provide 

a more unified and comprehensive 

Federal policy for education of 

handicapped people within one 

Bureau.___________________
PREVIOUS RECOMMENDATIONS ON 

PREVENTION BY THE PRESIDENT'S 

COMMITTEE ON MENTAL RETARDATION 

AND OTHER RELEVANT SOURCES______

 Since 1966, the President's 

Committee on Mental Retardation has 

been reporting to the President on the 

latest strategies to prevent and treat 

mental retardation. The seriousness of 

the problem and the importance of the 

Committee's task is reflected in the 

fact that over six million Americans 

today are mentally retarded. It was 

estimated in a 1977 Report to 

Congress by the Comptroller General 

of the United States that an additional 

four million mentally retarded children 

would be born by the end of the 

century, if nothing is done to change 

the situation. 

 Given this need to prevent mental 

retardation and the knowledge of 

various strategies to prevent it, PCMR 

has made numerous recommendations 

about the types of approaches that 

can be used. These recommendations 

embrace many different categories, and 

include: public education, research, 

health delivery systems, education 

about environmental hazards, nutrition, 

immunizations, genetic counseling, 

family planning, programs for 

pregnant teens, prenatal care, 

maternal and child health care, 

newborn screening for metabolic 

disorders, caring for premature 

infants, and early childhood education 

and intervention. 

 As the Committee has urged in 

previous reports: 

Public Education

Encourage education for parenthood in your local junior high 

and high schools. 

A national education effort 

supporting planned pregnancies, 

which emphasize optimal 

 

 conception and maternal health, 

will be one of the most effective 

means to reduce the incidence of 

mental retardation. 

Using the schools and the mass 

media as channels for reaching 

the general public, and 

professional training programs 

and journals for reaching those 

who can influence people's 

health behavior, the campaign 

should aim at the most widespread dissemination and application of existing knowledge. 

Research

An effective information center 

should be established at the national 

level to identify and monitor current 

research related to the prevention of 

mental retardation in order to 

improve the flow of information and 

its application in service delivery.

The exposure of pregnant women to 

radiant energy sources, infectious 

agents, dangerous drugs, and other 

known and suspected hazards should 

be minimized until research has 

clarified the extent of danger these 

influences pose for the developing 

fetus. 

Continued fetal research is needed to 

assess the impact of environmental 

agents which may have toxic 

effects, or produce congenital 

deformity or genetic mutation. 

Research is needed to improve 

contraceptive alternatives to reduce 

unwanted pregnancy and allow 

optimal planning of reproduction. 

Research and demonstration 

programs are needed to further 

develop effective strategies for 

facilitating advancement of 

young developmentally delayed 

and mentally retarded children. 

Continued and sustained research 

at basic and applied levels must b

supported by appropriate Federal 

agencies to develop knowledge an

implement the best means of early

assistance to families and children 

at risk from psychological and 

social hazards. 

Among critical areas that need stud

are the role of occupational expos

in producing birth defects and the 

special problems of women expos

to hazardous substances. (Healthy 

People, 1979). 

Health Delivery Systems 

A health delivery system is 

needed which assures equal 

access to quality care at 

reasonable cost. In addition 

to the general services 

which should be provided to 

all communities, highly 

specialized services must be 

provided on a regional 

outreach basis from university 

medical centers to community 

medical programs. 

Because intervention at the 0 to 

three age range is so critical to 

developmentally disabled 

children, PCMR urges that 

either a universal service be 

established in Title XIX through 

the Early and Periodic 

Screening, Diagnosis, and 

Treatment Program (EPSDT) or 

the Right to Education for All 

Handicapped Act to be amended 

to include this age group. 

e 

d 

y 

ure 

ed 

 
Environmental Hazards

More rigorous identification and 

eradication of toxic substances 

in the environment, such as lead 

paint, airborne lead, or 

waterborne mercury compounds, 

and specific organic toxic 

compounds, should be pursued. 

Increased leadership, guidance, 

and efforts by HEW are needed 

to assure that the incidence of 

mental retardation (and other 

adverse effects) caused by lead 

poisoning is reduced by 

expanded screening to identify 

areas having a significant 

incidence of lead poisoning 

cases. (Preventing Mental 

Retardation: More Can Be 

Done, 1977). 

Nutrition

Malnutrition, which is a 

contributing factor to 

prematurity, low birth-weight, 

neurological abnormalities, 

should be decreased by all means 

available, including public 

education on known nutritional 

hazards, accurate consumer 

information on nutritional 

values of processed foods, and 

by selective supplementary diet 

for high-risk pregnant and 

lactating women and their 

children. 

Immunization

Mental retardation caused by 

rubella and measles can be 

prevented by aggressive 

vaccination programs. However, 

since rubella and measles 

immunization levels are less than 

considered necessary, expanded 

efforts to immunize children and 

to test women of child-bearing 

age for susceptibility to rubella 

are needed. (Preventing Mental 

Retardation: More Can Be 

Done, 1977). 

Better data are needed on 

immunity levels in local areas. 

Certain Federal programs, such 

as Early Screening (EPSDT), 

Head Start, and family planning 

could improve surveillance data 

and raise immunity levels. 

(Preventing Mental Retardation: 

More Can Be Done, 1977). 

Genetic Counseling

Genetic diagnostic and 

counseling services are needed by 

high risk persons. 

PCMR recommends that 

funding be made available 

through the Genetic Disease Act 

for the expansion of 

amniocentesis testing centers and 

regional blood testing centers. 

Title XIX should be amended to 

establish universal services for 

testing and treatment. 

Mental Retardation can be 

reduced through genetic 

screening and counseling, but 

only a small proportion of those 

who could benefit from such 

services appear to be receiving 

them. Providers of genetic 

services generally perform little 

outreach and serve primarily 

higher income groups. 

(Preventing Mental Retardation: 

More Can Be Done, 1977). 

Family Planning

The best age for the mother is 

between 20 and 35; having 

children when younger or older 

increases the risk for the child. 

Programs for Pregnant 

Teenagers____________

Provide the means for States to 

establish new programs and 

expand existing programs to 

resolve the problem of 

adolescent pregnancy. The 

incidence rate of mental 

retardation in babies born to 

teenage mothers is considerably 

higher than the national average. 

Prenatal Care

Inadequate prenatal care has 

been linked to premature and 

low birth-weights, which are in 

turn linked to mental 

retardation. (Preventing Mental 

Retardation - More Can Be 

Done, 1977). 

Prenatal care that will guard the 

fetus against damage from 

maternal kidney infection, 

diabetes, venereal disease and 

other hazards should be assured 

for every pregnant woman from 

the start of pregnancy. 

Maternal and Child Health Care

Comprehensive maternal and 

child health care services must 

be available and accessible to all 

women and their children, 

including those families with low 

income and those residing in 

rural areas. 

Newborn Screening

A simple blood test can be used 

to screen newborns for PKU and 

congenital hypothyroidism. With 

dietary manipulation for an 

infant with PKU, and hormone 

medication for one with 

hypothyroidism, mental 

retardation and other problems 

that otherwise would develop, 

can be avoided. (Healthy 

People, 1979). 

Caring for Premature Infants

Intensive care should be 

immediately available for 

premature and low birth-weight 

babies, who are at a greater 

risk of mental retardation. 

Early Childhood Education and 

Intervention_________________

Corrective measures introduced 

in early childhood can reduce 

the severity of the handicap and 

sometimes reverse its course. 

The Committee recommends 

that the Community Service 

Act be amended to expand the 

Head Start Program with an 

emphasis on Home Start. 

Community agencies should join 

forces to deliver programs to "atrisk" and developmentally 

disabled children during infancy 

and early childhood. 

Access to child development 

centers for poor and minority 

group children should be on an 

equal basis with all families in 

need of such service. 
SUMMARY, 

CONCLUSIONS 

AND 

CHALLENGES 

FOR THE 

FUTURE______

 While economic analyses 

emphasize the cost-effectiveness of 

prevention of mental retardation in 

monetary terms, they tend to 

overlook or ignore the cogent 

arguments stressing the social and 

psychological benefits of 

prevention activities. 

The impressive data on the 

effects of improved preventive 

care, particularly to adolescents 

and medically or socially highrisk groups, is a key starting 

point. Unwanted pregnancies 

are clearly high-risk situations. 

However, the availability of 

satisfactory care to those who 

will give birth, to the generation 

of unborn and to those already 

born must be among our most 

important priorities in our 

national effort to have healthy 

babies without physical defects 

and concomitant mental 

retardation. 

 The proliferation of neonatal 

intensive care units has no doubt 

brought improved care and 

treatment to the high-risk neonate 

and premature baby. The positive 

effects on neonatal survival and 

improved outcome is a matter of 

record for the larger low birthweight babies over 1,500 grams. 

The outcome for the very low 

birth-weight survivors is less 

optimistic, but needs further study. 

One positive trend is towards the 

regionalization of care for highrisk mothers and for low birthweight babies, with varying levels 

of care within regions. 

 Genetic counseling efforts are 

largely viewed as connoting the 

controversial issue of abortion. Yet 

the majority of families who 

 

receive genetic counseling benefit 

from the reassurance they receive 

about a current pregnancy or about 

the low risks involved in 

attempting future pregnancies. 

Again, the social and psychological 

benefits to the majority are often 

underemphasized, while costeffective elimination of an 

abnormal fetus receives the 

greatest attention. A strong 

argument can be made for 

expanded genetic counseling 

programs coupled with increased 

research on the treatment of 

genetic disorders. 

 There is no reason why 

Statewide and regional efforts to 

implement augmented metabolic 

screening should not continue and 

Federal incentives be offered to 

expand such activities. This must, 

as has been emphasized, be 

coupled with satisfactory follow-up 

procedures and with research on 

improving screening 

methodologies and developing 

better therapeutic approaches, 

including studies to determine the 

optimal duration of treatment for 

metabolic disorders such as PKU. 

 Expanded immunization 

programs implemented in the past 

few years are already paying rich 

dividends. The prevention of 

rubella during pregnancy and of 

encephalitis due to measles are 

very beneficial demonstrable 

products of the national 

immunization effort. It will be 

most critical to maintain the 

interest in high immunization 

levels for the population at large in 

order to preserve the salutary 

effects on disease prevention and 

the resultant decrease in the 

incidence of sequellae including 

mental retardation. 

 The adverse effects of toxins in 

our environment are a field of 

burgeoning interest and concern. 

This report details the harmful 

effects of alcohol and other agents 

on the developing fetus and 

describes the kinds of programs 

that can be mounted to combat this 

problem. The harmful effects of 

significant lead exposure on slum 

children who ingest old paint and 

plaster, or to children exposed to 

lead from contaminated clothing of 

parents employed in lead related 

chemical plants, are all well 

known. The more subtle impact of 

lower levels of lead exposure are 

more controversial, though there is 

evidence suggesting adverse 

effects in some environmental 

circumstances. Toxicological 

research is an area that must be 

expanded and be associated with 

improved outreach identification 

programs. 

 Another area of importance is the 

critical role of accidents, 

including automobile injuries, as a 

cause of head trauma, brain 

damage and post-natally acquired 

mental retardation. Accidents are 

usually preventable. Consumer 

education and child passenger 

safety programs have had 

beneficial effects in reducing the 

frequency of serious accidents. 

Expanded efforts to promote child 

safety and prevention of 

automobile injuries, accidental 

poisonings and serious falls are 

needed on national and local levels.

 
 In many communities, outreach 

efforts to identify preschool 

handicapped children have only 

recently begun as a component of 

"child find" and other endeavors 

to broaden early education 

efforts. Yet, there are relatively 

few high-risk follow-up programs 

for medically and socially at-risk 

infants. The technology for early 

identification is improving, but 

we need better trained health and 

allied health professionals to 

participate in very early 

identification initiatives. 

Continued research on the 

development and behavior of 

newborns and of young infants is 

required to assist clinicians to 

perfect the diagnostic tools 

required for the early detection of 

developmental abnormalities. 

This has become more critical 

with the realization that early 

intervention programs have both 

short and long range positive 

effects. Few have doubted the 

substantial impact of such 

programs on families when parent 

support, counseling and goal 

directed intervention strategies 

are provided to families with a 

mentally retarded child. The 

precise effects on the child have 

been questioned, since unrealistic 

expectations may have been set 

for some participants. 

 The classic example of this 

phenomenon was the expectation 

that Head Start programs would 

produce sustained improvement in 

early school years, despite the 

realization that the home and innercity school environments remained 

unchanged and apparently did not 

continue to provide the special 

attention that the children may 

have required. Nevertheless, as 

described in this report, those who 

maligned or criticized the 

optimistic goals may have been 

proven wrong, since long- range 

benefits have definitely accrued to 

children who attended Head S tart 

programs. 

 A wide variety of approaches 

using structured curricula with 

varying emphases and 

components have claimed 

successes in fostering more 

normal development and 

functioning in heterogeneous 

groups of young retarded infants 

and toddlers. 

 Yet, much remains to be 

learned about the value of various 

early intervention efforts. When 

is the optimal timing for these 

programs? What is the best 

methodology? How much is the 

ideal amount of parent 

participation? Who are the best 

clinicians/teachers/therapists to be 

employed and how are they to be 

trained? How long is treatment 

required? Are the interdisciplinary 

or transdisciplinary models the 

best, and, if not, what approach is 

best? 

 Expansion of collaboration by 

medical and educational 

professionals to improve 

diagnostic and treatment 

methodologies is a requisite for 

the future. Resources must be 

provided to make these programs 

more readily available to all who 

require them. The declining 

school-age population, reflecting 

our national demographic 

patterns, gives us an insight as to 

the possibility that current 

educational expenditures can be 

re-channeled into early 

educational and intervention 

efforts, while enlarged CHAP/ 

EPSDT and Crippled Children's 

programs could be utilized to 

expand screening and the critical 

follow-up care for children atrisk. Mechanisms 

for reimbursing "noneducational" therapies or socalled "related services" 

(physical, occupational or speech 

therapies) will be necessary in 

order to furnish the important 

bridge between medical and 

educational interventions that are 

necessary to successfully 

implement coherent programs for 

children and/or their families. 

What is clearly evident is that 

successful prevention efforts must 

deal with complex interactions of 

medical, health, environmental, 

educational and social factors. 

Current technology often cannot 

effectively delineate the exact 

contribution of each factor or set 

of factors in producing abnormal 

development. Therefore, 

prevention efforts must attempt to 

achieve a balance in dealing with 

all potential causative agents or 

conditions. Broadly based 

interventions strategies are, 

therefore, a necessity.
PCMR 

RESOLUTION 

ON 

PREVENTION

In view of the many preventable 

conditions and beneficial 

interventions enumerated in this 

report and the hopeful outlook 

that can be fostered by an active 

and vigorous national prevention 

effort, PCMR resolves that: 

Current technology that has 

proven to be effective in 

preventing mental retardation be 

applied in an expanded national 

prevention effort. 

Cross-cutting governmental 

initiatives be instituted to combat 

and eliminate biological and 

social/environmental causes of 

mental retardation. This would 

require collaboration of 

aggregates of Federal agencies 

and combinations of funding 

streams from the numerous 

legislative sources and 

entitlement programs (Title V, 

Title XIX, Title XX, the Genetic 

Disease Act, Head Start 

Programs, Early Education 

Projects of the Office of Special 

Education and Rehabilitation 

Services, Child Health Assurance 

Programs, Developmental 

Disability Administration, 

National Institutes of Health, 

National Institute for 

Handicapped Research, Mental 

Retardation Research Centers, 

University Affiliated Facilities, 

Environmental Protection Agency 

and others). 

c. Research be expanded to 

explore and resolve questions in 

areas of great importance to 

biological and environmental 

prevention efforts, e.g. causes and 

prevention of prematurity, longrange effects of the expansion of 

neonatal intensive care units, 

genetic intervention strategies, 

the effects of nutrition on prenatal 

and postnatal development, 

toxicological and environmental 

hazards, refining techniques for 

early diagnosis, evaluation and 

intervention, short and long-term 

follow-up of high-risk infants, 

development of methodologies to 

understand the nature of the 

processes that influence cognitive 

development and which causes 

dysfunction, factors preventing 

and stimulating normal social 

adaptation, and the effects of 

labeling and stigma on 

development. 

d. In the light of previous 

PCMR recommendations and 

earlier Presidential declarations, 

PCMR wishes to re-emphasize 

our commitment to the 

Presidential goal of a 50 percent 

reduction in mental retardation by 

the Year 2000 and to urge a major 

national effort in prevention in 

order to achieve that goal.