Report of the President's Committee on Mental Retardation 

The President 

The White House 

Washington, D. C. 

My dear Mr. President: 

It is my pleasure to transmit to you the sixth annual report of the President’s Committee on Mental 

Retardation. In doing so, I pay tribute to the leadership of Elliot L. Richardson as Chairman during the 

past two years. 

Two major national goals, outlined by you in meeting with the Committee, form the theme of this 

report: 

o To reduce by half the occurrence of mental retardation in the United States before the end of 

this century: 

o To enable one-third of the more than 200, 000 retarded persons in public institutions to return 

to useful lives in the community. 

The following report, MR 72, Islands of Excellence, presents a number of national, state, regional, and 

local programs that typify the positive approach to prevention and alleviation of mental retardation. 

They are not necessarily the best available—although some are—but each is an example of what can

be done throughout the nation. As islands of excellence, they emphasize the point that only a relative 

few now benefit from current knowledge of human development, biomedical technology, and a 

respect for human dignity. 

One vehicle that promises to expand these benefits is the growing interest in legal rights for the 

retarded. To further this interest, the President’s Committee on Mental Retardation has called a 

National Legal Rights Conference to be held in the spring. 

Another means to achieve national impact is the potential uncovered by the Federal agency review that 

the Committee conducted at your request. The review has revealed untapped resources in departments 

throughout the Federal Government, requiring only coordination and application to retardation to be 

effective in this field. 

We appreciate your leadership in these pressing problems, and look forward to your support and 

commitment toward continued progress. 

Faithfully yours, 

Casper W. Weinberger 

Chairman
MENTAL Contents 

RETARDATION BY 

CAUSE 

 

CLASSIFICATION 

OF THE MENTALLY 

RETARDED POPU 

LAT ION 

 

TOWARD A LIFE OF QUALITY Page

Education for Parenthood .................... 7 

The Mother Is Just a Child ................. 8 

From Chromosomes to Family Care .. 11 

Nurse-Midwives Show the Way ........ 15 

Home Is Where the Teaching Is ......... 18 

EASING THE BURDEN 

Retarded People Have Rights, Too .... 22 

The Multi-handicapped Child .......... 26 

Texas Removes the Label ..................... 31 

INTO THE COMMUNITY 

The Open Institution ............................. 37 

There Are Choices ................................. 42 

Making It on Their Own ................... 46 

Building a Model for the Nation ....... 47 

PCMR'S ACTIVITIES ............................ 49 

RECOMMENDATIONS ................... 53 

The President's Committee on Mental 

Retardation Washington, D.C. 20201 

DEW Publication No. (OS) 73-7
THE increasing emphasis on State, regional and local responsibility in planning, 

funding and provision of services makes it imperative for those in the field to be informed 

of what is NOW being done well for a few, 

and should be available to all. 

Included in this report are programs that 

are representative models in prevention and 

treatment of mental retardation. There are 

many others equally deserving of recognition. 

The main point, however, is that services of 

such high quality are reaching only a small 

percentage of the population. 

TODAY we have the biomedical technology and the knowledge of human 

development to begin to approach the 

President's goal of reducing by half the 

occurrence of both organic and functional 

retardation. 

Thousands of children may escape 

becoming statistics in future reports on mental 

retardation because their minds were 

stimulated early enough to provide them with 

a firm base for learning (pp. 7, 18). Others 

will be born mentally and physically sound 

because of preventive measures taken during 

their mother's pregnancy and their infancy 

(pp. 8, 11, 15). 

The efforts toward prevention described in 

these pages, however, are not sufficient. For the 

most part, we fail to communicate, to finance 

and to apply the biomedical technology and 

the information on human development we 

now have. Too many universities, hospitals, 

classrooms and social agencies are teaching and 

practicing long outmoded theories. 

TODAY we know how to ease the burden 

of mental retardation for those who are affected. 

There is substantial evidence from the report on treatment of severely and multi-handicapped children (p. 26) that there are very 

1 
few—if any—"hopeless cases." Helping them 

takes adequate staffing by trained 

professionals and paraprofessionals. And the 

desire to help them. We no longer have the 

excuse of not knowing how. 

The responsibility does not end with diagnosis and evaluation. It begins there. 

Inestimable suffering, human waste and 

public cost could be saved by early 

evaluation, diagnosis and treatment, followed 

by community services for each child who is 

potentially handicapped (pp. 11, 15, 22, 31). 

Given the right services at the right time, 

most such children could become productive 

adults, leading lives of dignity. 

Yet a survey of State education 

agencies completed in 1971 by the National 

Association for Retarded Children found 

that not more than 60 percent of retarded 

children are being served in any State. One 

State is currently meeting the educational 

needs of only 15 percent of retarded schoolage children. 

TODAY we know how to meet the President's goal of successfully returning to the 

community at least one-third of the more than 

200,000 retarded children and adults now in 

public institutions. 

Programs in Connecticut (p. 37), Nebraska (p. 42), Wisconsin (p. 43), 

Pennsylvania (pp. 46, 47) are showing 

the way to normal living for the retarded. 

Participants overwhelmingly prefer them to 

the inhuman warehouses that are so 

deplorably prevalent. And the net cost of 

normal living to the taxpayer can be less. 

Most of the examples included in this report are not only models worthy of duplication 

(and capable of being duplicated), but are also 

reflections of major national trends, 

harbingers of the future that all may someday 

enjoy. 

Among those broad trends: 

 An increasing awareness of the fact that

$1.00 spent for prevention is worth $1,000 

spent for warehousing or wasted lives. 

 Growing appreciation of the need for parent education and enrichment programs in 

early childhood based on human development 

concepts. 

 New approaches to education, 

extending the "learning years" both earlier 

and later than the rigid "school years," with 

no time limits, no rejections, no 

categorizations, and no labels. 

 Concentration on the learning process 

itself, with an emerging change in definition 

of learning disabilities that encompasses all 

learning problems, with varying degrees of 

competence considered. 

 Restructuring of medical training and practice, with interdisciplinary emphasis, and 

teamwork of many professionals and ancillary 

personnel in treating the whole person 

within his environment. 

 Growing recognition of the rights of retarded individuals, as evidenced by the myriad 

court cases regarding their civil rights. 

 Recognition that consumer action can often 

achieve results before court action becomes necessary. 

 Moves toward community agencies 

sharing the responsibility to provide more 

normal living conditions for retarded children 

and adults, with residential institutions 

providing back-up services, if needed. 

These trends can be accelerated only if 

professional training is brought up to date 

Arthur Tress 
with what is actually taking place in many hospitals, schools, institutions, and group homes. 

Despite the fact, for instance, that education in the classroom is moving away from the 

categorical approach, very few regular 

classroom teachers are given training in 

teaching the handicapped children coming 

into integrated classrooms. 

Although there are exemplary cases of 

cross-pollinization in higher education 

between the department of human 

development and regular or special 

education, many universities still lack the 

integrated approach. In an attempt to 

compensate for this lack, some elementary 

schools are now reeducating their teachers 

in developmental concepts, through inservice training. 

"We know the priorities," said the 

head of a large State university's education 

department. "We need the resources to fit 

them to the priorities. Meanwhile, we have 

to answer the needs of those on our doorstep." 

Another problem in education involves decision-makers in State departments of education. There is an emerging development of inservice training programs for the professionals 

already employed in these departments, to 

bring them up to date with what is often 

already happening out in the field—or could 

be happening if they were aware of the 

possibilities. 

In the medical field, obstetricians and 

pediatricians, to name just two disciplines, 

are learning more on the front lines than in 

medical schools how their responsibilities 

interrelate and overlap. And many of the 

"We know the priorities. 

We need the resources" 

more progressive medical centers are 

joining the social worker and public health 

nurse with the medical team. 

In residential care, also, the gaps between 

theory and reality are becoming apparent. 

A young psychologist in a progressive 

State school bemoans the fact that the 

training he received in higher education was 

far behind what was being done in the 

innovative institution. 

A staff member of another State school, 

bitter with the State-controlled system, 

explains that the residents are leaving the 

baked fish on their plates because they don't 

like it. "They prefer fish sticks, but every 

ounce of food served is planned in 

headquarters in the State capital. We've 

been trying to get fish sticks for six months 

now." 

The newer generation drawn to service in 

residential care complains of outmoded rules 

and regulations imposed by out-of-date administrators. "Do you know why the girls want to 

work in the laundry ?" asks one such young 

man. "It's because that's the only place they 

get to see the boys. They don't even eat together. It's inhuman!" 

Direction in the past came from higher 

echelons—the Government, the universities, 

State school boards, administrators. Today, it is 

often consumers and newcomers to the field 

who are leading the way, pressuring for better 

services, more relevant education, integrated 

health care, and respect for individual rights. 

If they seem impatient, it is because they 

know that the world can be made a better 

place for the retarded, and they want to make 

this happen, not "someday" but NOW. 
President’s Goal: Returning Residents to 

Communities 

The Problem 

Net Return (-300) 

The Goal 

Action Needed 

1. Reduce intake – by offering 

alternative types of placement 

2. Increase capabilities & independence 

of residents – through highly skilled 

care and training 

3. Increase community placement – by 

developing qualified community 

facilities and homes 

4. Promote public acceptance as 

neighbors and employees

15,000 

Admissions

186, 700 

Persons 

Residing in 

202 State 

Institutions 

in 1970 

14,700 

Released 

Return OneThird of 

186,700 = 

62,000 to 

Community 
,

- 

Education for Parenthood 

Where do you start to prevent mental retardation? 

A program just launched is starting at the

beginning of one aspect of the problem, with 

education for parenthood. 

Although a substantial number of babies 

are born retarded because of biomedical 

causes, a far greater number become 

functionally retarded because they have 

been deprived of basic needs during early 

childhood development. 

Late in 1972, HEW's Office of Education 

and the Office of Child Development jointly 

initiated a major program aimed at teaching 

teenage boys and girls how to become good 

parents potentially capable of raising 

children who are mentally, socially, 

emotionally, and physically healthy. 

The Education for Parenthood program 

will begin with a large-scale plan 

involving several hundred school districts as 

well as national voluntary organizations 

serving youth. 

The program attempts to increase 

prospective parents' knowledge of child 

growth and development; of the social, 

emotional and physical needs of children; 

and the role of parents in successful child 

rearing. 

The Education Development Center of 

Cambridge, Mass., was awarded a grant to 

develop a curriculum for parenthood 

education. The curriculum combines both 

classroom instruction in child development 

and practical experience in working with 

young children at day care centers, Head Start 

programs and kindergartens. 

National statistics point up the need for 

such education. 

According to the Metropolitan Life Insurance Company, approximately 12,000 girls 

under age 15 gave birth in the United States in 

1971—a 23.6 percent increase over the 1968 

figures. This is the highest percentage 

increase of any age group. The next highest 

percentage increase over 1968 figures is in the 

15-19 year- old group, who gave birth to 

629,000 babies in 1971, a 6.3 percent increase. 

The deprivation that so often leads to 

functional retardation begins just after birth. 

Pre-parenthood education may be one remedy 

that can be applied before it's too late to make 

up the deficit. 

For further information, write: 

Education for Parenthood 

Office of Education 

U.S. Department of Health, Education, and 

Welfare 

400 Maryland Avenue, S.W. 

Washington, D.C. 20202 
The Mother Is Just a Child 

The frightened girl waiting to see an 

obstetrician at Grady Memorial 

Hospital in Atlanta is just 16. She is 

jobless, unmarried, malnourished, and 

pregnant with her first child. She has 

never used any form of contraception. 

The probability is high that she will 

obstetrical patients at medical centers 

serving those who cannot afford private 

care throughout the country. At Grady, 

she is Black; her color changes in 

Appalachia, the Southwest and other 

parts of the country, but not her lifestyle 

nor the outcome of her pregnancies. 

deliver prematurely, and that her baby will 

have a mental, physical, and/or emotional 

handicap. 

She is the prototype of the obstetrical patient most commonly seen at Grady, which 

serves the indigent population of Fulton and 

DeKalb Counties. The two counties include 

metropolitan Atlanta. A large percentage of 

the residents of Fulton and DeKalb have recently moved in from rural areas. 

Over 50 percent of Grady's obstetrical patients are under 21, reflecting the consistent, 

nationwide trend toward teen-age mothers. 

This 16-year-old mother-to-be typifies 

The magnitude of the problem of adolescent pregnancy continues to increase. The 

highest percentage increase in live births by 

age of mother, comparing 1968 figures with 

1971, appeared in the 12 to 19 age group. 

Teenage mothers—under 17—produce a 

disproportionate number of low birthweight 

(under 51

/2 lbs) babies. Low birthweight 

carries an increased risk of mental 

retardation and is the most important single 

factor in infant mortality. 

The adolescent's own growth requires 

adequate amounts of calories, protein and 

calcium. 

8 
"The cycle of poverty, ignorance, maternal 

malnutrition and low birthweight infants 

must be broken. If we could make sure that infants, 

children and pregnant mothers receive adequate 

nutrition, we could interrupt this cycle and 

remodel our future." 

—Charles U. Lowe, Scientific Director 

National Institute of Child Health 

and Human Development, NIH. 

But the pregnant adolescent has serious extra 

nutritional needs for the child developing 

within her. 

Studies on the nutritional status and food 

habits of adolescents, pregnant and non-pregnant, frequently indicate inadequate and bizarre diets, with especially low intake of iron, 

calcium, vitamins A and C. 

Poverty compounds the adolescent dietary 

problems. Adolescent pregnancy raises the 

problem to national significance. 

Of all women who deliver at Grady, 98 

percent request—and receive—information on 

contraception for the future. 

Perhaps as a consequence, the number of 

multiple pregnancies is sharply declining. 

This is true at Grady and nationwide. 

However, those at risk for producing 

handicapped children, and least prepared for 

motherhood—16 year old, jobless, unwed, 

malnourished girls—are increasing their 

reproductivity. 

The 16-year-old girl in Atlanta will receive expert medical attention from the Grady 

Maternal and Infant Care Project, including 

screening for rubella, sickle cell anemia, venereal disease, and other infections. Available to 

her if she needs them will be such services as 

psychiatry, medical specialties dealing with maternal and fetal care, nutritional education and 

social services, including family planning. She 

will also have access to consultation and resources of Emory University Medical Center, 

with which Grady is affiliated. 

If typical, she is not interested in attending "birth control clinics" following the birth 

of her child. So Grady has established a teenage "interconceptual care" clinic, which provides peer group meetings, a case worker to 

aid with problems, routine contact with school 

personnel, and health services, as well as birth 

control and health information. Meetings are 

relatively well attended. 

Total health care—not just during pregnancy—is available to her and her baby. 

She is more fortunate than her cousin, 

whose day-laborer husband does not qualify 

for welfare, but whose salary cannot begin to 

cover health insurance or good health care. 

They, like millions in the low-middle income 

brackets, are too poor for private care, too rich 

for Medicaid, and too young for Medicare. 

For further information, write: 

Maternal and Infant Care 

Project Parklawn Building 

Fishers Lane 

Rockville, Maryland 20852 

Maternal and Infant Care Project 

Grady Memorial Hospital 

Atlanta, Georgia 30303 

CHILDREN NEUROLOGICALLY 

ABNORMAL AT ONE YEAR Rate BY AGE 

OF MOTHER (WHITE) 

CHILDREN NEUROLOGICALLY 

ABNORMAL AT ONE YEAR BY AGE 

OF MOTHER (WHITE) 

40 

30 

20 

10 

0 

10-15 16-17 18-19 20-24 25-29 30-34 35-39 40+ 

Mother’s Age at Birth 

Source: Collaborative Prenatal Study of 

National Institute of Neurological 

Diseases and Stroke 
“The goal is not survival; it is intact survival" 

Modern technology is responsible for saving the lives of many premature and highrisk infants through the new intensive care units for newborns, spreading in a 

network across the country. 

But modern technology is not enough. 

Even though a large percentage of these babies survive, many may emerge with 

serious mental defects. 

Funding for intensive care programs staffed by highly trained neonatologists on 

24-hour duty is an urgent necessity. 

Deeply concerned by the facts, one physician states the problem in these terms: 

"The goal is not survival, it is intact survival." 

MAJOR CHARACTERISTICS OF PATIENTS SERVED AT 

GRADY MEMORIAL HOSPITAL INTERCONCEPTUAL 

CARE CLINIC 
From Chromosomes to Family Care 

The flow and interchange of staff among 

the services of the Los Angeles County—University of Southern California's Medical Center 

make it difficult to know where one service 

stops and another starts. 

That's the point. 

The continuity of specialized care that the 

clients receive cannot be captured in any organizational chart because of the close interaction 

among the staff, and the coordination of services. 

The Genetic Center's team works closely 

with the Department of Obstetrics and Gynecology, their Family Planning Division, and 

the entire Pediatrics Department, especially the 

intensive care unit for newborns. And the 

clinic for developmental problems of infants 

and children is an integral part of the entire 

network of services. 

Social workers and public health nurses 

are often the bonding agents for linking the 

medical, social and educational services. 

Since the Genetic Division is most immediately concerned with prevention of mental-
retardation and other handicaps, it invites closer 

inspection. 

"A genetic division is not just a 

laboratory." explains its director. "We have a 

multidisciplinary team of physicians, 

including genetics post-graduate fellows, 

laboratory technicians, public health nurses, 

and a social worker. 

"Any genetic program involved in 

amniocentesis for prenatal diagnosis requires 

a full team to do the back-up work necessary 

in genetic evaluation and counseling," she 

adds. (Amniocentesis is a procedure in which 

a small amount of amniotic fluid surrounding 

the fetus is removed. Examination of the 

cultured amniotic cells may indicate 

whether the fetus has a chromosomal or 

biochemical defect detectable by present 

laboratory tests.) 

In the past two years, about one out of

every 20 pregnant women seen by the Genetic 

Center's staff were found to be carrying a 

fetus with chromosomal or biochemical 

abnormalities, and the couple in each case 

decided to terminate the pregnancies. 

Couples are first evaluated by 

physicians of the Genetic Division to 

determine the genetic risk involved in the 

pregnancy. If they choose to have 

amniocentesis, a thoroughly trained 

obstetrician performs the procedure. 

It takes two to three weeks for the amniotic cells to grow in culture and be 

analyzed for evidence of the fetus' normal or 

abnormal chromosomes. A fine art now, the 

technique is constantly being refined to 

improve the reading of the microscopic 

genetic message captured on the slide. 

In the weeks awaiting the outcome of the 

tests the couple very much needs the psychological support of the professional team. 

Although by far the largest number of the 

patients are found to be carrying fetuses 

showing no evidence of genetic disorders, 

anxiety is high among all until results are 

known. 

For those found to be carrying an abnormal fetus, there is further team counseling, 

as the prospective parents decide if the pregnancy is to be terminated or not. 

The risks of having a fetus affected by 

certain genetic disorders in future pregnancies 

may be known before conception. In some 

cases the carrier state for genetic disorders such 

as Tay-Sachs disease can now be determined. 

Even though detection of an abnormal 

fetus and termination of pregnancy can prevent 

the birth of a large number of children with 

mental retardation and other handicaps, the 

risk usually comes to light only after the prior 

delivery of an affected child. The exception is 

the woman in the late thirties or in the forties, 

whose age alone raises the risk. 

Of the pregnant women seen by the physicians of the Genetic Division since 1970, about 

two-thirds had a previously affected child, such 

as one with Down's syndrome (mongolism) or 

a biochemical abnormality. About one-third of 

the women were over 35 years of age. 

The majority of the amniocentesis 

“No medical practitioner can be excused 

now for not knowing the nature of genetic 

diseases, the special diagnostic techniques 

applicable to them, the identification of 

carriers, the means of reducing the deleterious effects 

in many of them, and means by which their 

incidence in future generations can be reduced" 

—George W. Beadle, Ph.D. 

Nobel Laureate in Genetics 

Former President, U. of Chicago 

referrals to USC’s Genetic Center are from 

private physicians. A large number of the 

Center's patients had previously used the service. 

A very small proportion of requests for 

amniocentesis are from people in the lower 

socio-economic groups, even though it is 

reasonable to assume that these groups include a 

large number of high-risk mothers and even 

though no patient is ever turned away for 

inability to pay. 
The Medical Center of USC has become 

acutely aware that there are few, if any, 

single-problem families, and each problem 

has several facets. Consequently, the integrated 

and multidisciplinary teams are attempting to 

provide the many related services required 

for effective family treatment, and vital to the 

prevention of future problems. 

Because of the younger child's chromosomal abnormality expressed in Down's syndrome, and the mother's age, the risk that 

To use a hypothetical example, a twoyear-old Mexican-American boy is brought to 

the pediatric emergency clinic with severe bronchitis. After treatment for the acute problem, 

the medical staff completely evaluates him and 

confirms their observation that the child has 

Down's syndrome and is seriously delayed in 

development, in addition to being undernourished. 

An interview with the mother discloses 

the fact that she is 37 years old, about three 

months pregnant and not under a doctor's care. 

Another child in the family, a five-year-old 

girl, is found to be relatively healthy but somewhat below normal mental development for 

her age. 

Assisted by a pediatric social worker, the 

mother receives a thorough obstetrical examination. She then becomes a patient in the 

obstetrical service of the hospital and will be 

delivered there. 

Marcia Kay Keegan

Of 3,500 patients seen in a two-week period last year at the Emergency Pediatric 

Clinic of Los Angeles County—U.S.C. Medical Center, 70 percent were 

Mexican-American, and 40 percent of these spoke no English. 

"Have you ever faced a mother with a desperately ill baby in her arms at 2 

o'clock in the morning, and found that she speaks no English and there is no 

Spanish-speaking interpreter available?" asks a pediatrician at the clinic. 

He was echoing the frustration felt by a number of people attempting to serve 

the Spanish-speaking population which has increased dramatically in the last few 

years, especially in the Atlantic and Pacific coastal cities. There are frequent 

complaints that budgets in medical, social and educational services often ignore 

the pressing need for translators. 

13
she is carrying another affected child is increased. So the pediatric social worker, who 

is also part of the Genetic Division's team, 

discusses the situation with the mother, 

who is then evaluated and counseled by a 

physician in the Genetics Division. 

An amniocentesis to detect fetal chromosomal abnormalities is offered, and the parents 

decide that they wish this procedure. While 

awaiting the results of the growth of the amniotic cell culture, the public health nurse attached to the genetic team counsels the 

parents and tries to allay anxiety. She is 

available at all times to give very 

personalized service. 

Meanwhile, the social worker locates 

a Headstart class in the community that has 

an opening—not an easy task—for the fiveyear-old girl whose development is below 

normal. The hope is that this program may 

give her the added mental and social 

stimulation needed to prepare her for a 

regular first grade class in public school. If 

not, she may require special education. 

For the two-year-old with Down's syndrome, a medical and nutritional team goes to 

work on his physical needs, while the public 

health nurse counsels the family on his 

care and feeding. Soon the social worker 

will begin the search for a pre-school program 

for handicapped children in the community. 

The child will remain under the guidance of 

the Medical Center's team as long as he needs 

such help. 

While the search for community 

services for the children of this family has 

been going on, the laboratory technicians 

have analyzed the amniotic cell culture and 

found no abnormalities. 

This mother's pregnancy will be 

followed closely by the obstetrical team, and 

should continue to term without problems. If 

any develop for her or the baby, highly 

specialized medical help is available in the 

Medical Center. 

She will be provided family planning 

services if she wishes, as well as genetic 

counseling if there are future pregnancies. 

All of these services for the family are 

within easy walking distance of one another. 

The social worker or public health nurse is 

there to aid in moving from one service to another with ease. 

For further information, write: 

Genetics Division 

Los Angeles County—U.S.C. Medical 

Center 

1200 North State Street 

Los Angeles, California 90033

California's plan for the development 

of a regional service system for the retarded 

throughout the State is now operational. 

The State is setting up a network of comprehensive medical and educational 

facilities designed to supply a complete range 

of services for an estimated 200,000 

retarded individuals. 

Regional centers offer a total 

management plan, including diagnosis and 

continued counseling. They are designed to 

guide parents to educational, training, and 

recreational programs, or to find foster 

homes or out-of-home placement for children 

whose parents cannot care for them. 

"If we had more funds for early childhood centers and short-term care," says a California social worker, "there would be 

much less need for full-time residential 

facilities." 

With adequate financing to assure 

equitable distribution of regional center 

services, the California system promises to 

be a plan for other States to follow. 

For further information, write: 

Bureau of Mental Retardation 

State Department of Public Health 

Berkeley, CA 94764 

14 
Nurse-Midwives Show the Way 

In 1969 the infant mortality rate in 

rural Holmes County, Mississippi was 39.1 

per thousand. Less than three years later, it 

was down to approximately 21 per 

thousand. In that same area, the neonatal 

mortality rate in 1969 was 23.4 per 1,000 

live births. In 1971 it was 8.5. 

Although such dramatic progress is in 

part due to teamwork in maternal and 

infant care among the University of 

Mississippi Medical Center, the State 

Board of Health, local physicians and other 

community health professionals, the key 

addition in that period was the nursemidwife of the County Health Improvement 

Project (CHIP), which started in '69. 

The Project started with 

demonstration programs in education and 

service in Jackson, Mississippi and 

surrounding area, and a program in rural 

service in Holmes County, which is a 

mainly low-income—or no income—area. 

15 
CHIP is now going into two more rural Delta 

counties, with an additional program in Vicksburg. 

The first step was to break down the prejudice against midwives. The educational program at the medical center, however, was 

training not just midwives, but Registered 

"We are concerned with the quality of life as 

well as physical wellbeing" 

Nurses as professional midwives under the supervision of physicians. When this point was 

illustrated, progress was smoother. Since the 

project started, 25 have been graduated from 

the 12-month training program at the 

University of Mississippi and are now 

practicing in the State. Forty nurse-midwives 

are currently working in Mississippi. 

They are now gearing to train 20 nursemidwife students twice a year, for a total of 40 

annually. Graduates of the program will be 

placed in six southeastern states: Florida, 

Georgia, South Carolina, Alabama, 

Mississippi and Louisiana. 

Basically, the nurse-midwives are being 

trained in an organized approach to total maternal and child care. They are prepared to 

handle normal prenatal care, delivery of the 

baby in the hospital (hospital delivery is required), and follow-up of the mother and 

baby at least through the first year. 

Working with community health aides 

trained at the University of Mississippi, the 

nurse-midwives follow the mother and newborn child intensively at home the first month 

after delivery. 

Instead of the usual 6-week checkup for 

new mothers, the CHIP mother has her 

checkup at the end of four weeks at the University Medical Center or health department 

clinic. During this time, the nurse-midwife 

counsels her on family planning, and starts 

her on whatever family planning method she 

has chosen. 

The baby gets a 6-week examination by 

the nurse-midwife, and is seen at home at 3, 6, 

9, and 12 months. The nurse-midwife is available by phone at all times. 

The people in Holmes County generally 

are farmers without much money, so CHIP has 

arranged to have the Department of Agriculture's Food Supplement program come into 

Holmes. In addition, since the well water 

supply is often contaminated, the babies under 

this program get a prepared formula that does 

not require dilution. 

One of the criteria for nurse-midwifery 

care is that the pregnant woman be essentially 

normal, with a prospect of an uncomplicated 

pregnancy. The high-risk patient is cared 

for by a physician. From the beginning, 

and through each stage of care, if any 

problem is detected in mother or child, the 

nurse-midwife immediately consults with an 

obstetrician or pediatrician. 

In addition to the routine tests and immunizations for the child, the nurse-midwives 

check the hemoglobin level, nutritional status, 

and developmental level. 

"We are concerned with the quality of 

life, as well as physical well-being," says the 

nurse in charge of the program. "So we see 

that the infants get early stimulation, and we 

"In some respects, the ghetto child is better off 

than the rural youngster, for he at least gets 

some medical care, while the rural child may 

have none at all." 

—Jay H. Arena, M.D. 

Past President, American 

Academy of Pediatrics 

counsel the mother on child-rearing practices as 

well as nutrition and health education." 

They use developmental tests on children, 

and use them as a teaching tool for the 

mother, also. 

If there is a developmental lag, there is an 

immediate referral for remedial measures. And 

in this total care project, a number of cases of 

potential mental retardation have been found 

16 
and checked before progressing further. Some 

of the babies, for example, have been born 

with hyperbilirubinemia (jaundice). These 

children have been treated immediately, and 

are now normal. If untreated, the result could 

be mental retardation. 

Another benefit from the program comes 

from having the Holmes County mother deliver in the hospital. CHIP has Maternal and 

Child Health Service funding for the hospitalization if the family is not on Medicaid or any 

other Federal aid program. (In other Mississippi counties, if the family can't afford 

hospital costs for delivery, the baby is often 

born at home.) 

Problems the nurse-midwife detects in the 

newborn are referred to local physicians or specialists available at the University of 

Mississippi Medical Center, a service not 

available in home deliveries. The personalized, 

first-rate medical care the nurse-midwife can 

give is proving valuable not only for mothers 

and children but also for physicians who are 

then freed to give more time to difficult 

cases. 

Funding for CHIP comes mainly from 

HEW grants and private foundations, with a

very small amount in State money. "Much of 

my time is spent looking for money," says the 

project's director. 

Because this successful project in the 

Delta was a product of Mississippi minds at 

work, it is known affectionately as the 

"Made-in-Mississippi Health Care Plan." 

For further information, write: 

Public Information Office 

University of Mississippi Medical 

Center 2500 N. State Street 

Jackson, Mississippi 39216

17 
Home Is Where the Teaching Is 

Home Start is so commonplace, so full of 

the old-fashioned virtues—parental care, 

family solidarity, order in the home—that it 

seems almost pretentious to call it a program. 

Home Start is a mother in Cleveland, 

Ohio talking with her young child as she peels 

potatoes for dinner. 

A grandmother in Gloucester, 

Massachusetts who takes care of her working 

daughter's pre-school children, marching 

around the living room with them, beating 

pans with wooden spoons. 

A father in Logan, Utah reading a story 

to the children after he tucks them in bed. 

A Parkersburg, West Virginia family 

sitting down to dinner together every night 

at six-thirty. 

That's Home Start. 

There's something old, something new, 

something borrowed and something that rings 

very true about the whole concept. 

The something old, of course, is the premise that child-rearing belongs in the home. 

And a home with some order in it, with 

healthy meals eaten together, and a 

reasonable bedtime. And conversation. Not 

just commands issued over the din of the TV, 

but give and take conversation. Questions and 

answers. 

The "new" is twofold: (1) the relatively 

recent knowledge gained from the "growth sciences" that such deceptively simple childrearing practices are essential to the healthy 

mental, physical and emotional development of 

the child, and (2) the realization that such 

matters have somehow gotten crowded out of 

modem homes—poor and affluent as well—and 

can no longer be taken for granted. They need 

to be taught. Home Start is beginning with the 

disadvantaged. 

The something borrowed—and applied in 

Home Start—is the undeniable evidence 

accumulating from human development 

studies throughout the world that a child's 

mind and emotions develop in stages, in much 

the same way as his body develops. There 

is a time schedule for each building block of 

growth, varying somewhat with each 

individual child. But if a block is missing, the 

whole structure is apt to collapse. 

The "growth sciences" owe their origin to 

18 
the Swiss psychologist, Jean Piaget, who 

was the first to describe how children 

construct their mental model of the world in 

cumulative stages. His studies started with 

mentally retarded children. 

The child's environment, he holds, is the 

key to how well and how rapidly the mental 

model is built. The greater the child's, 

variety of experience, the greater will be his 

ability to handle an even wider variety of 

experiences. 

Then by combining, or re-combining what 

he has learned before, he can build on that 

base to proceed to new methods of 'learning, 

coping, reasoning. 

The concept, adapted by Home Start, is 

not narrowly defined as "education," but is 

concerned with the development of the child 

as a whole person, with the parents as the 

natural teachers, the home as the natural 

setting. Neither is its goal emergency 

treatment for children deprived of essential 

building blocks in their development; it is 

prevention of the mental and emotional 

handicaps suffered when the cornerstone of the 

foundation is missing. 

(The centers-based developmental daycare programs have a similar goal, but are designed mainly for young children whose 

mothers must work or go on welfare.) 

The valiant "treatment" efforts of tutoring 

programs and other compensatory projects to 

help disadvantaged children "catch up" to the 

competence of more advantaged children, have 

opened the nation's eyes to the importance of 

early childhood, and the desperate need for 

help of many of our children. 

But such programs are not achieving the 

results they had hoped for, possibly because 

they may have come too late in the natural 

schedule of child development. 

Competence is a cumulative thing. 

These compensatory programs, and the 

much-maligned schools, may be building on a 

house of sand, developmentally speaking. 

Home Start could turn out to be the supplier of the missing cornerstone, not supplanting the other programs, but laying the foundations on which they can later build. 

Home Start was born in the Office of 

Child Development of HEW, in March 1972. 

Stated purpose of the home-based program is 

to focus on enhancing the quality of children's 

lives by building upon existing strengths and 

assisting parents in their role as the first and 

most important educators of their own children. 

It is serving approximately 3,000 children 

roughly between the ages of 3 and 5. 

Benefits of the program, however, extend 

to both younger and older children in the 

home. 

The 16 cities with Home Start programs, 

as of the time this report was written, are: 

Gloucester, Mass.; Binghamton, N.Y.; Parkersburg, W.Va.; Franklin, N.C.; Huntsville, Ala.; 

Harrogate, Tenn.; Cleveland, Ohio; Fort 

Defiance, Ariz. (serving Indian families); 

Houston, Tex.; Dardanelle, Ark.; Wichita, 

Kans.; Logan, Utah; Reno, Nev.;. Fairbanks, 

Alaska; Laredo, Tex. (serving migrant 

families); and San Diego, Calif. There is at 

least one Home Start program for each of the 

ten HEW Regions. 

Home Start is a Head Start demonstration 

program, serving children in the same age 

19
range and economic categories as those 

served by the center-based Head Start. 

Some communities, such as Binghamton, 

N.Y., already had projects similar to Home 

Start, so Home Start joined forces with the existing project. 

Each city involved has a continuing inservice staff training plan for the home visitors. They are generally para-professional 

women from the neighborhood in which they 

will be working. Most are mothers familiar 

with the community and its resources. 

Usually traveling in teams, they average 

about 12 families apiece whom they visit at 

"I never thought of myself as a teacher before." 

least once a week, bringing simple educational 

materials and child-rearing ideas with them. 

Often they find their families by simply 

walking through lower-income neighborhoods 

and knocking on doors. They explain the program, invite the family to participate, and if 

the family accepts, they are in. The home visitors become family friends. Each city's program 

serves a minimum of 80 families. 

The mothers seem uniformly enthusiastic 

after the initial apprehension or distrust wears 

off. For the first time, many feel, there is an 

ally to help them in their difficult and confusing role as mothers. One of the purposes is to 

help them enjoy raising their children. 

"I used to get rather short-tempered with 

my children," said one Home Start mother, 

whose five children range from 5 months to 8 

years. "When they'd ask a question, I'd just 

give them something to get them out of the 

way. Now I try to answer them very sincerely. 

We talk—a lot—and I think things are much 

better than they used to be." 

Home Start does not try to change a family's lifestyle, but to build self-confidence and 

give them the skills that are needed for a more 

productive life. 

The visitors also try to help low-income 

parents bring some order into their lives, 

suggesting set times for meals, a consistent 

bedtime for children, and certain places for 

their toys and clothes. 

Parents in the programs frequently get 

together to discuss mutual problems, and 

sometimes to hear talks about child-rearing. 

Some make toys and games for the children. 

Mothers are made aware that the most 

common household objects can be learning 

tools. They also receive booklets with suggestions for activities appropriate to certain ages, 

educational games, and simple tests of learning 

skills. "I never thought of myself as a teacher 

before," one mother commented proudly. "I 

thought only the schools did that." 

There are games to teach conceptual 

thinking,—organizing and categorizing things, 

done with such readily available items as 

laundry, groceries, kitchen utensils. 

Parents are encouraged to praise good behavior, to explain cause and effect, to offer 

choices in order to foster independent thinking, 

and to be consistent in discipline whenever 

possible. 

It's too early to predict long range effects, 

but at short range, it looks good. Many comments testify to the program's success so far: 

"I used to take my problems to a beer joint. 

Home Start brought me out of myself, to get a 

good look at what I could do for my kids." 

One shy, young mother offered: "Without 

Home Start I would crawl back into my hole." 

For further information, write: 

Director, Home Start 

Office of Child Development 

P. O. Box 1182 

Washington, D. C. 20013 

20 
Morton R. Engelberg 

Easing the Burden
Retarded People Have Rights, Too 

The legal rights of the mentally retarded have been long ignored. Parents 

and agencies have had to beg for services and funding, and even then, succeeded 

only when their patience outlasted that of the dispenser of the largesse. 

Suddenly, the scene has changed. Cases are being brought to court, on behalf 

of the mentally retarded, asserting the right to education, (including protection 

against assignment based on unfair labeling) the right to treatment, and the 

right to be free from involuntary servitude. (See MR 71) 

A deluge of such cases is flooding the courts. They may mark the 

beginning of a new national attitude toward people who are mentally retarded. 

 Henry is 11 years old. He is brain damaged, and termed trainable. 

He is also physically handicapped, and in a wheel chair. The 

school district in which he lives has a program for mentally 

handicapped children, but Henry is called "too handicapped" to be 

eligible. 

 Katherine lives on an Indian reservation. She had 

spinal meningitis at 18 months and has been retarded 

since that time. The State says her "education is the 

responsibility of the Federal government, since she is 

Indian, and lives on Federal property. Neither Interior 

Dept.'s Bureau of Indian Affairs nor HEW's Indian 

Health Service has a program to suit her needs. She 

could go to the closest institution, over 300 miles 

away, but her parents want her at home. There are no 

community services for her on the reservation. 

 Alice is 7. She can't talk, and has been called 

"un-testable" with the available testing materials. 

As of this writing, suits have been brought against seven states and the 

District of Columbia on the right to education for all children, regardless of handicap. 

In at least one suit—Mills vs. Board of Education of the District of Columbia—a 

court decision has affirmed this right. 

22 
 Petey is Black, 6 years old. He lives in a crowded tenement in a northern city. When Petey 

was tested in school he was given a set of blocks to assemble, among other items. The blocks have 

pictures of freight cars on them, and he was to arrange them so that the engine went in front, 

freight cars in the middle, caboose at the end. How can you tell where the caboose belongs if you 

have never seen a train? He failed the test. 

 Roberto arrived in this country three months ago from Mexico. He is 8. The family speaks no 

English. The person who administered his IQ tests spoke no Spanish. None of the team who 

devised the test had ever been to Mexico. He failed the test. 

 Clarissa is the 7-year-old child of a white, destitute family living in an isolated, 

mountain shack in Appalachia. Clarissa didn't know that she was supposed to match a 

medieval suit of armor with a lance. She failed the test. 

California, Massachusetts, and Louisiana have been sued for labeling members of 

minority groups and others as mentally retarded on the basis of tests geared to a white, middleclass background.

23
"The seclusion rooms are small cells with locked doors, 

barred windows, and are just large enough for one bed and 

a mattress on the floor. Residents are locked in these rooms 

without supervision and frequently for long periods of time. 

"One resident who was recently observed in a seclusion room had been there as long as the ward attendant 

had been assigned to that ward, which was six years. 

Physical restraints, including straight jackets, nylon stockings, rags as well as rope are often used without physician's orders. One young girl was observed in a straight 

jacket, tied to a wooden bench. It was explained that she 

sucked her fingers and had been so restrained for nine 

years." * 

In Alabama, Georgia, Illinois, Massachusetts and New York there is court action on right 

to treatment for mentally retarded in State institutions.

24 
"Approximately 500 residents work at Partlow 

[State School], mainly in maintenance, without 

compensation. Many residents also work without pay 

in the direct care of severely and profoundly retarded 

residents. They have received no prior training for these 

tasks. 

"In fact, a work assignment to a severely or profoundly retarded ward is often used as a means of 

punishment. There is no written policy protecting 

working residents. Many have been at their present job 

assignments for 20 to 30 years and some for over 40 

years. They work without supervision, often under 

dangerous conditions, and many work in excess of 60 

hours a week." *

In five states suits have been filed on the issues of peonage: The right of institution residents to 

be free from involuntary servitude, and, if they work in the operation of the institution, to receive 

minimum wages, social security, and other working benefits. 

For further information, write: 

Council for Exceptional Children 

Governmental Affairs Office 

1411 Jefferson Davis Highway--Suite 900 

Arlington, Virginia 22202 

(Information on Right to Education) 

National Center for Law and the Handicapped, Inc. 

1235 No. Eddy Street 

South Bend, Indiana 46617

* Source: Testimony before the U.S. Federal 

District Court for the Northern District of Alabama, 

relative to Partlow State School—Wyatt vs. 

Stickney 

25 
The Multi-handicapped Child 

The elevator, when it works, creaks its way 

up the rusted cage to the seventh floor. You are 

anxiously aware of being within the walls of 

New York City's ancient public hospital, 

Bellevue. 

Your destination is the unique Rubella 

Project's pre-school, an educational laboratory for 

children with multiple handicaps—deafness, 

blindness, mental retardation, in varying degrees. 

Many have all three conditions, and more. 

Recalling other settings featuring similar 

children, you fight the urge to run away. 

Minutes later, you are caught up in a scene 

bursting with such hope, such vitality, and—the last 

thing you would expect—humor, that you wonder if 

the Pre-school for Multi-handicapped Children 

may not be one of the truly happy spots in "Fun 

City." 

Three-year-old Gerardo, thick glasses 

slightly askew, hearing aid in place, shrieks with 

delight as he plunges down a slide into his teacher's 

arms. 

Juanita, who is five, and blind, is guiding her 

teacher through a multi-sensory maze built by high 

school shop students, feeling the flowers, the 

woolly things, the rough and the smooth surfaces. 

A speech teacher is helping a child learn to 

speak by having her blow soap bubbles. One floats 

across the room, and hits blond two year-old 

Richard on the nose. His teacher lifts her eyebrows 

and makes a face in mock astonishment. For a 

second he does nothing. Then he laughs. A gusty, 

two-year-old laugh that turns all adult eyes in the 

room toward him with excitement. His teacher hugs 

him to her, and he begins bouncing up and down in 

her arms, still crowing with pleasure at his accomplishment. 

26 
Across the room, the mothers put down 

their coffee cups and—even though three speak 

only Spanish, two speak only English, and Richard's mother speaks only Romanian—they 

somehow communicate their mutual pleasure 

in this feat. 

It is the first time Richard has ever 

laughed. 

When his mother was pregnant, she had 

rubella. Richard seemed to be normal at birth, 

but it soon began to be apparent that something was wrong. He did not respond as a normal child should. No eye contact, no smiles, 

coos, laughter, nor even much crying. The tentative diagnosis was autism, with possible deafness. 

No one knows yet if he is deaf or not. 

Now, four months after entering the preschool program, he is tolerating the earphones 

that test his response to sounds. He is making 

firm eye-to-eye contact. And he is making, the 

happy, human sound of laughter. 

Sharing in the Event of Richard's Laughter is a beautiful, young-looking Puerto Rican 

mother of eight children, among them Diana. 

In April of 1972, she had brought Diana, 

then 10, in her arms to the Rubella Project. 

For the five years since the mother's arrival in 

New York she had taken Diana to hospital 

after hospital, and clinic after clinic—ten in 

all—seeking a program to help her daughter 

learn something. 

The answers were all the same: Hopeless 

case. Nothing can be done. There are no programs for this kind of thing. You can try to 

get her in an institution. 

But her mother insisted on keeping her at 

home. And persisted in her efforts to get help 

for her child. 

For ten years Diana had lain on her back, 

unable to sit up. The only nourishment she did 

not reject was milk with an egg in it, which 

she drank from a baby's bottle. 

Finally, at a children's evaluation project, 

Diana was diagnosed as having the one condition she did not have—blindness. She was then 

referred to a program for the blind, which, on 

finding she was not blind, referred her to the 

Rubella Project because it serves an evaluation 

unit for the region's deaf-blind center. 

After an intensive evaluation at the Rubella Project it was found that Diana has 

congenital rubella with the following manifestations: Severe hearing loss, failure to 

thrive, chronic brain syndrome with severe 

mental retardation, behavior disorder with autistic features, and an impulse disorder. These 

conditions were compounded by malnutrition 

and anemia. Her "blindness" was profound apathy. 

Because her problems were so severe and 

complex, Diana was hospitalized for ongoing 

and simultaneous evaluation and treatment. 

She was force-fed to counter the malnutrition 

and anemia, and given medicine to control the 

impulsivity (despite her weakness, she would 

throw whatever came within reach, including 

equipment used to film her progress). 

At the same time, an interdisciplinary 

team of doctors, nurses, educators and social 

workers—and her mother—worked together. 

In a few weeks Diana was eating ravenously. 

She was sitting up and slowly beginning to observe the world around her, amplified by a 

hearing aid, and sharpened by her growing 

perceptivity.

27 
Strengthened and supported by the team, her 

mother was becoming her most effective 

therapist. 

Within a few months, Diana was walking 

with relative ease. Although still severely retarded, she takes part in the pre-school program, responds even with humor, and has 

learned many self-help skills. 

The point of the story, however, is not so 

much Diana's success, but the failure of the 

service system at all levels. 

How much of her degeneration over a period of ten years was caused by professional 

and societal neglect? The team at the Rubella 

Project believe that with early diagnosis and 

treatment she may have been far less retarded 

than she is—with a chance for significantly 

more independence than she can ever achieve 

now, and at much less cost. 

How different would her life have been if she 

had had a hearing aid at the age of one instead 

of ten? 

What effect would proper diet from infancy 

have had on brain development and physical 

skills? 

How different would have been the life of 

her parents and brothers and sisters if they had 

not had to wait ten years in hopelessness and 

helplessness? 

There are literally thousands like Diana 

on the back wards of State institutions all over 

the country. If such dramatic improvement can 

be evidenced in a few months in a severely, 

multi-handicapped child after ten years of professional neglect, how much suffering, human 

waste and public cost could be saved by an 

early evaluation, diagnosis and treatment followed by community services for each potentially 

handicapped child? 

During investigations which began a decade 

ago and contributed to progress toward 

prevention of rubella birth defects by 

vaccination, the Rubella Project expanded its 

mission to focus also on early detection and 

treatment, family training to handle the 

problem, and placement in appropriate 

community services. 

When a child is brought in, a 

physician interviews the parents and gives 

the child a thorough physical, bringing in 

whatever specialists are required. Since this is a 

medical center-based program, there are 

specialists in all fields available. 

At the same time, in the examining room, 

a member of the educational team evaluates 

the child, eliminating the need for further referral procedures and the all too frequent gap 

between medical diagnosis and educational 

management. 

From then on, for a period of several 

months, the integrated medical, social service 

and educational management team develops a 

program for the child and his family. 

A child is eligible if he has at least two of 

the following conditions: auditory impairment, 

both peripheral and central; visual impairment; 

brain dysfunction; mental retardation; physical 

impairment and behavior disorder. 

The project is no longer limited to children affected by rubella. 

Staff includes a teacher of the deaf, a 

teacher of the mentally retarded, an assistant 

teacher, a social worker, an occupational therapist, two health aides and several graduate and 

undergraduate students in these fields. These 

are in addition to the project's traditional medical personnel, which includes 28 specialties. 

The Rubella Project is a component of the 

Department of Pediatrics, New York University Medical Center—Bellevue Hospital Center. 

Funds come from Federal, State and local governmental agencies and private donations. 

As a laboratory to explore new methods 

and technology in treating multi-sensory deprivation, the pre-school recognizes that diagnosis 

cannot be separated from treatment, and treatment cannot be separated from the home environment if there is to be the necessary impact 

on the lifestyle of the multi-handicapped child.

So there are home visits and personal involvement in the home life of the child. At the 

same time, the parents—more often the mother 

—learn techniques under direct supervision, 

and are deeply involved in the treatment. 

The project becomes "home base" for the 

family, and the children return at least once a 

year for checkups on their educational and social progress as well as medical condition. 

Where do they go after the pre-school? 

There are too few community placement possibilities for them. And what becomes of those

28 
Deaf children feeding their turtle 

unknown thousands of similar multi-handicapped children for whom there is no such 

thorough pre-school? 

Like the hospitals and clinics and private 

physicians from whom Diana's mother sought 

help in vain, the vast majority of professionals 

are choosing to run away from the problem, or 

ignore it. 

Hopes rise, justifiably, with that creaky 

old elevator to the Rubella Project. There is 

treatment there that helps: Then what? 

For further information, write: 

Rubella Project 

New York University Medical Center 

550 First Avenue 

New York, New York 10016

In response to growing pressure on the 

States for treatment of the deaf-blind-retarded 

child, a handsome, ultra-modern regional residential facility, Frampton Hall, has recently 

opened at the N.Y. Institute for Education of 

the Blind in the Bronx, N.Y. The building was 

paid for by private funds. Program funding 

comes from the Deaf-Blind Centers and Services of Bureau of Education for the Handicapped and the regions served. It is one of ten 

deaf-blind regional centers. 

Frampton Hall receives patients from a 

region that covers New York, Pennsylvania, 

Delaware, New Jersey, Puerto Rico and the 

Virgin Islands. The facility provides care for 

about 75 children between the ages of 31

/2 and 

21. 

Frampton Hall cannot handle severely 

emotionally disturbed children, severely crippled, those with a mental age measurable in 

weeks, or those whose families cannot take 

29 
part in the training or be able to follow 

through. 

Applicants have a thorough pediatric 

workup at the Bellevue Rubella Project, which 

may take two days to a week. While waiting, 

there is an apartment at Frampton Hall for the 

mother and child. 

Once admitted, the child has the advantage of being in what is perhaps the most advanced therapeutic milieu of its kind, with 

every architectural and decorative detail designed for the instruction, safety and comfort 

of deaf-blind retarded children. There are no 

more than four children to each bedroom, and 

living quarters are in units close to private, 

specially equipped bathrooms. 

But Frampton Hall is no protective, padded cell. The children are taken out frequently, 

not just to walk through the spacious grounds 

of the Institute, but on field trips to shopping 

centers, the zoo, public parks and playgrounds, 

and wherever else they can find opportunities 

to sharpen their senses. With few exceptions, 

the children go home on weekends. If their 

home is too far, the staff seeks out some 

change for them whenever possible. 

Although the highly trained staff is responsible for training them in basic requirements of physical needs, there is also much 

activity in classrooms—baking, doing puzzles, 

making collages, dancing, marching, and introducing them to pleasures of childhood that 

other children learn naturally. 

There are plans for a pre-vocational program in housekeeping and simulated workshops in the future. 

The whole program is designed to prevent 

institutionalization. Yet, even after their training at Frampton Hall is completed—where 

else can they go? For some, the newly created 

National Center for Deaf-Blind Youth and 

Adults will provide the answer. But for many 

others there is no place. 

"We all wonder," said a teacher, "what 

will happen to them after they leave here. 

They will always need a great deal of help. 

But who will give it to them?" 

For further information, write: 

N.Y. Institute for the Education of the Blind 

999 Pelham Parkway 

Bronx, New York 10469 

Center for Services for Deaf-Blind Children 

Bureau of Education for the Handicapped 

ROB #3 

7th and D Streets, S.W. 

Washington, D.C. 20202 

30 
Texas Removes the Label 

If you are interested in EMRs, TMRs, 

MBIs or other such labels, don't go to Texas. 

If you are looking for the usual special education classrooms, proudly displayed, you will 

find few in Texas. 

However, if you care about children and 

their individual, special needs, take a look at 

Texas 

Something special is happening to special 

education there. And what is happening may 

well be a preview of a new era in education in 

general. The new concept of comprehensive, 

personalized education for individual needs is 

called Plan A. 

The primary goal in this child-centered 

plan is to provide each handicapped child in 

the state with an education suited to his ability 

to learn. Specialists are available to give the 

special help required to the child as well as to 

the teacher. 

By deemphasizing labeling and isolation 

in self-contained classrooms, and by focusing 

on the learning needs of each child rather than 

on the handicap, Texas is giving an increasing 

proportion of its handicapped children the opportunity to move into the mainstream of education—and of life. 

Contrary to fears that handicapped children would drown in this mainstream, they are 

being taught to swim. 

"They used to bring these kids in here 

and tell me, 'this one's got an I.Q. of 55. This 

one's MBI.' I don't want to know what their 

I.Q. is or what they can't do. All I care about 

is what they can do." 

The speaker was a muscular shop teacher

31 
in North East San Antonio's Roosevelt High 

School. He was standing by, unconcerned, as a 

group of students, most of them handicapped, 

expertly handled makeshift levers and ramps 

to load onto a truck the 7 x 9 foot house they 

had built. The scaled-down red and white 

building, a highly professional construction 

job, was to be the Christmas toy collection 

headquarters for a local radio station. 

Across town, at Alamo Heights Junior 

School, a resource teacher was working in a 

"resource room" with four students who had 

reading problems. Later one would go to math 

class, two to social studies, and the fourth to 

shop, where he is learning on lawnmowers, 

tractors and auto engines, to be an expert mechanic. The school does a brisk business in 

lawnmower repair. In the old system, all 

would have been labeled mentally retarded and 

isolated in a special education self-contained 

unit. 

The same system of integration was taking place with children in classrooms through 

the school. Those with special needs were receiving personalized help, then returning to 

art, music, physical education, shop, or regular 

classrooms. 

"We still have to match the child carefully with the regular teacher, the principal explained. "Those who may discourage or squash 

the child's initiative don't get these children." 

Until higher education catches up with the 

changes in elementary and secondary education, a great deal of the success of a 

comprehensive system depends on the understanding of the principal and administrative 

staff, and the individual teacher's attitude and 

instincts, in addition to teaching techniques. 

Directors of Special Education are discovering that principals trained in primary and 

early childhood education generally are more 

realistic toward children with varying special 

needs than are those coming from other education fields. The latter seem more oriented toward rigid, chronological criteria for grade 

placement. 

Technique and instinct both are apparent 

in Victoria Plaza Elementary School, where 

trained residents of Victoria Plaza, a model 

housing unit for aged persons, across the 

street, regularly take part in the school's program, and supply an extra dimension of care 

for the children. 

Integrated regular classrooms and resource 

rooms buzz with teacher-child dialogues: 

"Tell me why you chose that picture, Robert." Probing into the learning process. 

"Let's break up this ball of clay. Now, 

with all these pieces, do we have more than we 

had before? Or less? Or the same amount?" 

Developing concepts of conservation of matter. 

"Would you like to make some figures 

with the clay ?" Creativity. 

Piaget all the way. 

The newest educational techniques are 

most obvious, however, in the early childhood 

education programs. At Edgewood's Cardenas 

Early Childhood Center, children from three to 

five years are given highly specialized attention. Although most are handicapped mentally 

or physically and are predominantly MexicanAmerican, there is a mixture of children from 

several cultures and with a wide range of IQs. 

Brilliantly colored, and carpeted throughout, the demonstration school is alive with the 

joy of children discovering the world and 

themselves. But it is ordered exuberance. 

In one learning area of a large room, a 

group marches around in a circle, beating out a 

ragged rhythm with whatever can be turned 

into a percussion instrument. One child has 

32 
thick glasses, two or three have hearing aids, 

one a brace on her leg, and a few are marching 

to the rhythm of a very distant drum. With 

them are a teacher assistant and a Spanishspeaking volunteer, who is young and male. 

Over in a "learning well," two carpeted 

steps down, a little girl sits with a teacher who 

is giving her individual instruction. In several 

intimate, quiet rooms, small groups of children 

are working with teachers who are specialists 

in specific fields, such as speech therapy, or 

emotional disturbance. 

Around a table in another corner there is 

a social event—a party. A mother sits a little 

apart, observing over a cup of coffee. She is a 

member of the parents' group, PIENSA, an integral part of the center's program. 

Every few minutes, the action changes, to 

keep pace with the attention span of these 

young children. 

The scenes at the San Antonio schools are 

being duplicated in many parts of the State, 

now that Plan A is expanding to 187 school 

systems. It is expected to cover the state by 

1976, serving the needs of every handicapped 

child in Texas. 

As it grows, the effect it is having in regular primary and secondary education, as well as 

teacher training, is slowly becoming noticeable, 

though not fast enough to keep up with Plan 

A's pace. 

It is the early childhood programs, more 

than any other educational advancements, however, that are moving Texas' special education 

program out of the column marked perpetuation of mental retardation and into the column 

of prevention. 

Plan A had a nebulous beginning in the 

late '60s, with the State plan for education of 

handicapped children, provided for under Title 

VI of the Elementary and Secondary Education 

Act of 1965, as amended. 

In-depth research on the Texas State Plan, 

as well as on many other State plans, indicated 

that special education was not being 

responsive to the obvious call for massive 

restructuring of education in general. Instead, 

the special education plans seemed to be 

perpetuating the status quo. And the status quo 

was not working. 

In 1968, for example, less than half of all 

known handicapped children in Texas were

participating in the type of special education 

program they needed. (In one school district, 

there were 8 known multi-handicapped children under 6 years of age. After the Plan A 

program started, 42 were found.) 

More than 40 counties provided no special 

education for their handicapped children. 

Under 6 percent of the school-age population throughout the State were receiving special education services in 1968, while educators 

estimated that 10-20 percent needed such services. Many, receiving little or no help, dropped 

out of school. 

A disproportionate number of minority 

children were enrolled in special education. 

There were unanswered questions concerning 

the adequacy of the standards by which they 

were measured. 

In addition to these statistics, there was

the ever-present label, the stigma, the isolation 

that perpetuates and accentuates the handicap. 

And the dehumanization of the category—an 

EMR, a TMR or some other faceless designation. 

33 
Costs were increasing; benefits decreasing. 

Researchers brought in experts in special 

education and related fields, distilled their 

ideas into a report with 17 recommendations 

for drastic changes in special education. 

Major recommendations were: 

 Discontinue labeling and categorizing children. (Do not label one child as brain injured, 

another as emotionally disturbed, a third as 

mentally retarded, etc.) 

 Shift the emphasis from the handicapping 

condition to the educational needs of each 

child. (Discontinue emphasizing the fact that a 

given child is crippled. Instead, assess his individual needs and program his education accordingly.) 

 Shift the emphasis from the self-contained 

special class to mainstream or regular education facilities. Where a handicapped child can 

achieve, provide him with an education in the 

regular school program with modifications and 

support as needed. 

The research findings and recommendations, supported by the Texas Education 

Agency, resulted in legislation that was passed 

unanimously by both houses of the Texas Legislature in 1969. 

With wholehearted support from the State 

Board of Education and the Commissioner of 

Education, Plan A began during the 1970-71 

school year, with a pilot project in five school 

systems. In 1972-73 there are 70,000 handicapped Texas children receiving these special 

services. By 1976, Plan A is expected to serve 

all of Texas' handicapped children, from 3 to 

21 (with infant stimulation programs in many 

areas). 

Case finding is the responsibility of the 

local school district, and because of the change 

in funding patterns, it is to the district's financial advantage to get the children in school. 

Under Plan A, however, funds are allotted to school districts according to average 

daily attendance, and exceptional children who 

spend more than half of their time in regular 

classes—including art, music, gym, shop, homemaking, etc—are eligible to be counted in average daily attendance. For each 3,000 children 

in average daily attendance, the school district 

is allotted 20 professional instructional units, 7 

teacher aides, and 3 professional supportive 

personnel units. For each additional 1,000 pupils there is an additional entitlement. 

School districts may form cooperative 

programs, especially for severely 

handicapped children. Several have done 

this. Some regional programs have been 

established for children who cannot cope 

with a regular classroom. 

Previously, there was little or no 

assistance to teachers in regular classrooms 

that included handicapped children. 

Supportive staff positions were not 

available, nor was there a possibility of 

contracting for services. 

To assist the regular classroom 

teacher, specialists are now available, 

including educational diagnostician, 

helping teacher, resource teacher, teacher 

aide, counselor, visiting teacher, speech 

therapist, teacher of the deaf, blind, and 

others for special needs. 

Funds are available for appraisal of 

handicapped children, with each child 

receiving an individual education 

prescription. Each child is given individual 

help in this program, rooted in Piaget's 

theories of cognitive learning. 

In addition to the programs in the 

early childhood centers, there is a 

homebound program for stimulation of 

infants and for the bedridden. 

The Texas Education Agency's Special 

Education Department is currently holding 

a continuing series of institutes to create 

awareness of the need for curriculum 

change, and to train teachers and 

administrators in the application of Piaget's 

learning theories to curriculum 

development for exceptional children. 

Each participant is responsible 

for bringing ideas and results of the 

conference back to the school district, and 

implementing changes if there are 

implications for that school district. 

Those attending return to their 

schools and children with a heightened 

interest in the child as an individual rather 

than in terms of norms or as a subject to be 

located within a set of statistics. They are 

filled with Piaget's commitment to adapt the 

school to the mind of the child, to adapt 

teaching techniques to the cognitive 

structures of the child's thinking process, 

34 
and to adapt the content of what is taught to 

that which is relevant rather than traditional. 

They learn to replace teacher monologues 

with dialogues between child and teacher, and 

between child and materials. Teachers are 

taught to listen, to teach the child how to 

learn, to stimulate his own activity and to encourage him to direct that activity into meaningful channels. 

Strategies for curriculum change are growing out of these progressive concepts, which 

are based on sound knowledge of human development as it relates to the learning process 

itself. 

While these educational changes are taking place, Plan A classes are being examined in 

minute detail by Project PRIME (Programmed 

Re-entry Into Mainstream Education), the 

largest single study ever undertaken in special 

education. Findings will give policy makers 

across the nation firm data on how handicapped 

children can benefit most from integration into 

the regular classroom, and to identify 

strategies and climates in administration and 

teaching necessary to accomplish this goal. 

PRIME is a cooperative venture of the 

U.S. Office of Education's Bureau of Education 

for the Handicapped, the Texas Education 

Agency, local school districts and higher education institutions. 

The outcome of this study, combined with 

the dynamic concept of Plan A, promises an impact that will spread beyond the limits of special education, and far beyond the borders of 

Texas. 

For further information on Plan A, write: 

Director of Special Education 

Texas Education Agency 

201 E. 11th Street 

Austin, Texas 78701 

For further information on PRIME, write: 

PRIME 

Bureau of Education for the Handicapped 

ROB #3 

7th and D Streets, S.W. 

Washington, D.C. 20202 

Ralph Matthews

35 
INTO THE COMMUNITY 
The Open Institution 

After a visit to Mansfield you wonder why 

anyone would want to leave it. 

Mansfield Training School, a State 

residential facility serving eastern Connecticut, 

is situated in the gently rolling, well clipped 

countryside, about 30 minutes from Hartford. 

Two lakes mirror the beauty of the land. 

Everything seems open there—the unfenced grounds, unlocked doors, the dormitories, the staff, the snack bar, the director's 

office, and above all, the faces of the residents. 

There is a clothing "store," with attractive 

window displays and mannequins, where the 

residents choose their own clothes. 

"Why dole clothes out, when they can 

come in and choose what they like?" asks the 

superintendent, who has a background in both 

mental retardation and public administration. 

"Besides, they'll have to get used to buying 

clothes when they leave." 

The snack bar is open morning to night, 

patronized by staff and residents alike, and 

staffed by residents. 

We got a little flack on this," he says, 

"when we decided to open the staff’s snack bar up 

to the whole place. So we started with the 'highlevel' residents only, one day a week. Eventually, 

they were all coming, any time they wanted to. 

Nobody gives it a second thought any more. It's 

all part of the normalization process." 

Next to the snack bar is a "teen club" 

with a bowling alley and small tables that 

give it a club atmosphere. 

The beauty parlor is as pink and feminine 

and professional as any on "the outside." Two 

State-employed beauticians staff it and supervise residents who learn to do each other's 

hair. Appointments in advance are generally 

required. 

"We used to have a small place where the girls 

could wash and set their hair but it wasn't very sexy. 

So we invited the West Hartford Junior 

Women's Club out here to talk with some of the 

girls and see the place. We told them we'd need 

about $7,000 to get a nice shop. We got 

$15,000." 

There's a plaque on the wall in honor of 

the donors. 

Elsewhere on the campus, there's a men's 

barber shop, complete with all the trimmings. 

There's a vocational training work-shop

where a worker tells with pride how he 

thought up the distinctive "Mansfield grooves" 

in big, chunky candles, and shows how he 

achieves the effect—with an ingeniously protected blade. 

The training school's recreation, physical 

education and music programs have been used 

as a model for other institutions. The school 

band and the blind glee club have entertained 

thousands and have cut two long-playing records. 

At Christmas, there is a big holiday party 

—one of the many held during the year. Individual neighboring communities, clubs and fraternal organizations, churches, and the news 

media all join forces in Project FOCUS (Forgotten Ones Christmas You Serve) to give attention and friendship to the 500 "forgotten" 

residents of Mansfield who never receive visitors and have no family. 

"We get a lot of publicity from the newspaper and TV stations for FOCUS, and the response from the public is terrific. There are gifts, 

and, of course, the party, and contributions from 

all ages of people. Friendships get started and 

pretty soon, we've got another volunteer." 

FOCUS may have started as a Christmas 

project, but it now lasts all year round, with 

fashion shows, plays, concerts, roller skating 

37 

and bowling and a dozen other activities that 

get residents and neighbors together. 

“We do anything we can to close the gap 

between the community and our residents." 

The pattern begins to come clear. The 

clothing store and the beauty parlor and the 

snack bar and the teen club and FOCUS and 

all the other attractions of Mansfield are not 

just for the purpose of making the lives of 

Mansfield residents more pleasant and more 

normal. They are also preparation for the life 

that many will be living in the community. 

Whenever possible, the children go to 

local public schools. And the public schools

come to Mansfield, with plays and picnics and 

athletic events. Over 400 college and 70 high 

school students volunteer in various programs 

at Mansfield. 

Many of the retarded adults hold jobs in 

neighboring industries. In turn, the companies' 

technicians and engineers have helped Mansfield set up training programs for others who 

will hold similar jobs in the future. 

Residents take train rides into nearby cities to visit museums, zoos, parks, fire departments, airports—whatever the community 

offers that will add to their experiences. 

Most pay for the outings by saving up tokens 

earned by working at Mansfield. 

In the summer and often on weekends, big 

groups go out to the rugged and beautiful camp 

recently acquired. They eat around campfires, 

hike through the woods, and play in the open 

field. Many of the residents helped prepare 

the campsite, which was a wilderness when 

they got it. Mansfield has even dammed up a 

stream and made a lake for swimming, 

boating and fishing. 

"Everybody needs a change of scene once in 

a while." 

Throughout Mansfield there is a feeling 

of constantly changing scenes. Old storage 

areas ripped apart and being converted into 

brightly colored learning spaces for multihandicapped children who need special training. A big, roofed patio being built beside a 

cottage housing non-ambulatory residents, so 

that they can be wheeled outside for picnics 

and fresh air. A bigger and more professional 

gift shop where the candles and other gift 

items made at Mansfield are sold to the public. 

"We want to get all these old buildings 

down eventually. We're gradually getting 

there. Some of these places were built over 50 

years ago. They've got to go." 

Mostly, though, it's the people who give

the place its sense of dynamic movement. Both 

staff and residents. 

A resident in his late 50s proudly shows 

off his room, furnished home-style, complete 

with color TV. He paid for the television and 

most of the furniture with money he has 

earned working at Goodwill. "It's a lot better 

than cows," he says, obviously not a rural type. 

Each man has his own room in this section 

of a large, old building which somehow manages to look like an apartment building. All 

have outside jobs, but are not quite up to coping with the outside world fulltime. 

They get around, though. The bachelor 

resident manager takes four or five with him 

on his annual vacation to Florida. 

A group of teenagers in the new Kennedy 

Cottage—a modern, small, ranch-type house on 

the grounds—discuss their future with excitement as they prepare their own dinner. 
Another young adult group, also on their 

way to the outside, drops by the snack bar and 

invites some friends to come over to their apartment for coffee in the morning. They have 

their own quarters in the staff apartment building across the road. They're almost—but not 

quite yet—completely on their own. 

Some won't be going at all. But they're 

not hidden in drab back wards. 

The day room for the most profoundly retarded had been a large, high-ceilinged, barn 

of a room, gray and forbidding and with years 

of institutional history permeating its walls. 

"We had to do something about it, and 

lowering the ceiling or remodeling was too expensive. So we called in some of the 

architectural students from the University of 

Connecticut across the way, and put it up to 

them. Now it looks like a pleasant place to 

live in. And it's designed to get them to 

move around some." 

The gaily-painted room has a four-section

partial divider in the center, mounted on a 

slightly raised and carpeted platform. Action 

flows around the center area, with each of the 

four sections offering a slightly different interest. Over each of the four areas is a brightcolored tent, suspended from the ceiling, and 

hung just low enough to give the room a cozy, 

more intimate feeling. The cost for the "remodeling" was nominal. 

There's a cottage for blind retarded residents, with its own dining room, and private 

bedrooms, with two or four to a room. Using 

the same space that had previously been a 

large dormitory, it has been remodeled into 

private quarters with funds from the Connecticut Lions Clubs. 

The group of blind retarded young people 

sitting talking in their living room called out to 

the visiting staff member, "Don't forget to 

come to our concert next Sunday night." 

They are members of a choir that was to 

sing at a neighboring church, and they had 

been practicing for the concert for months. 

Why would anyone want to leave here? 

"Look, it may seem like a country club, 

but it's still an institution. And an institution 

is an institution, especially with these huge 

old buildings we're stuck with. The idea is 

to get as many as we can into real life, or as 

close to it as possible." 

The staff goes through continuing education to make them more sensitive to their 

charges. 

Throughout the region, there are former 

Mansfield residents living in group homes, 

some in boarding homes, a few living independently. Mansfield has leased the homes, 

and Mansfield staff remains available when 

needed, in addition to the house parents who 

are there at all times. 

Sometimes, residents still at Mansfield 

spend weekends at the group homes, as part of 

the phasing out system. 

The homes are in quiet residential areas of

neighboring communities, all within walking 

"There's no point in moving people from some big, bad 

institution into some little, bad foster home" 

distance of transportation. There had been 

some neighborhood apprehension before they 

moved in, and a few real problems, but all got 

settled. 

"This is really great," said one man who 

had been at Mansfield 17 years before being 

weaned away carefully to the group home. He 

was working in the kitchen of a rather expensive restaurant, and bragged about the prices 

on the menu. He was making $89 a week 

take-home pay. Everyone must be able to pay 

$25 a week room and board before he or she 

can enter into the group living arrangement. 

A few blocks away from this house was a 

similar one for young women, and some not so 

young. They are all working in the community. 

Some share apartments in the Hartford 

apartment house Mansfield leased three years 

ago. There are 15 units. Those who live there 

pay for their own apartment and food. The 

only cost to the State is for social service and 

housekeeping supervision. This is the final step 

on the way to living without any supervision or 

help. 

Through Connecticut's system of regional 

centers for mental retardation services, Mans40 
field's residents who move out into the community can be sent to any one of the 12 regions 

and receive the social services available in each 

region. In other words, the resident can go to 

another area in the State and be "picked up" 

to receive their full range of services. 

Mansfield now has about 750 in community-based programs. Over the last five years, 

the resident population has been reduced from 

2,100 to about 1,400. 

So Mansfield has already surpassed the 

goal of moving 1/3 of the residents out into 

community living. What is the next step? 

Most of those who have no place to go 

are severely and profoundly retarded. They 

usually have several handicaps, and many are 

bedridden. 

Foster care or nursing homes is possible 

for many if rigid restrictions can be modified 

concerning fire regulations, zoning, and similar 

obstacles to more personalized, private care. 

With the right kind of community relations, a 

number of homes would open up to caring for 

severely handicapped children, for example. 

Such care is more reasonable and better, generally, than institutional care. 

The safeguard against undesirable private 

care is in the system of licensing. If the State 

office of mental retardation had the right to 

license such homes, and the authority to insist 

on adherence to standards of care, each home 

would have to adhere to uniform and strict 

standards. 

"There's no point in moving people from 

some big, bad institution into some little, bad 

foster home." 

For further information, write: 

Superintendent 

Mansfield State School 

Mansfield Depot, Connecticut 06251

The Survey Research Center of the 

University of Michigan recently did a 

study of institutions. Among their 

findings: Those facilities with an 

educational treatment technology, almost 

without exception, provided higher levels 

of care, more balanced programs, and 

more equalitarian rendering of services 

to recent versus long-term residents than 

other facilities did. 

Facilities with a medical or psychiatric 

treatment technology had many residents 

who actually deserved educational and 

other therapeutic service, but who received 

far less than their share of these. 

Residents at medically oriented institutions, when matched with those of equal 

functioning at educational facilities, 

nevertheless were provided far fewer 

educational, social, vocational and even 

certain medical-nursing services than 

their fellow residents at educational 

facilities. 

These and other structurally-based differences existed despite about equal financial 

and other resources between the two 

kinds of facilities. 
There Are Choices

NARC 

The goal is to move at least one-third of 

those now in institutions out into the community. 

Is the nation moving toward that goal? 

Some states have surpassed the one-third 

figure. Other states still have people who have 

been waiting as long as nine years to get into 

State institutions for the retarded, with no alternatives available in the community. 

A director of a State institution may report a drop of over 100 in the resident population 

for the past year. An examination of their 

destination, however, reveals that close to 50 

have been sent to a State mental hospital because of their advanced age and senility. Numerous other residents are being transferred 

from one State school to another. 

One State school that moves out about 

150 annually, admits about 140 annually. 

In this mad juggling of residents, it is impossible to give any accurate account of how 

many nationwide are coming in, going out, 

making lateral transfers, or not moving anywhere. 

Many are definitely moving out. Johnny is 

one of them. 

When he was six, Johnny was still in diapers. He was able to say four or five words, 

and could barely walk. All day long for six 

years he had stared at the blank walls of a 

crowded ward of Beatrice State School in Nebraska, where he had been brought shortly 

after he was born. 

Severely retarded, he faced only the bleak

42 
prospect of eventually moving into another 

ward of Beatrice where the residents were 

older. That was all. 

But one day Johnny was taken out of the 

back ward and into a hostel in Omaha where 

five other severely retarded youngsters were 

living. 

Johnny now is a lively little boy who goes 

to special education classes; he talks and sings, 

goes down the sliding board, dresses himself 

and, of course, is toilet trained. Five days a 

week he, along with the others of the "family," are bused to their special classes, physical 

therapy and recreation programs. 

Perhaps more important, he is being introduced to normal living, in a real home, on a 

real street, and living with a real couple who 

are taking on the role of parents. 

Although at this stage his daily expenses 

are almost double that of institutional care, 

the ultimate goal is that he will eventually 

earn his own living and become a taxpayer instead of a tax-user. He will need supervision 

and help, however, for the rest of his life. 

He has a good chance to reach that goal 

of earning his own living. After all, Henry 

made it. And Henry came out of Beatrice 

when he was ,46, after 38 years on the back 

wards. His records said he was "totally incapable of functioning outside." 

Henry, also, moved into a hostel in 

Omaha, and was given five months of intensive 

vocational and social training. He has not 

missed a day of work nor been late once for 

his job as a dishwasher in an Omaha restaurant. 

He was almost late once, but that was 

during a blizzard. He walked through it and 

pinched in on time. 

The effects of the trend toward normalization are being felt not just in Nebraska, but 

across the country. The newer way exists in pathetic contrast, often in the same State, with 

the most backward back wards. Funding is 

spotty, usually a combination of Federal 

(HEW and HUD), State or regional, and 

local monies. Occasionally, private funds are 

available, or housing is provided by churches, 

unions, civic or fraternal organizations, or 

foundations. There is no national pattern; only a 

national trend toward normal living, through the 

use of hostels, foster homes, group homes, 

community training centers, day-care, respite 

care, and other community services. 

The answer is not just removal from the 

institution, but a concerted effort of a variety 

of community services that can provide good 

alternatives to institutional living—or a by-pass 

of the institution altogether. 

Wisconsin is planning to put into effect 

such a system. Standards, licensing and supervision of the community housing program are an 

integral part of the plan. Training programs 
for the "parents" are arranged as much as possible. 

One plan is for children under 18; another 

for adult retarded individuals. All require community resources back-up, and continued supervision by the sponsoring agency. 

In the CHILDREN'S living system, the 

following are planned, and some in 

operation: 

 FOSTER HOMES. Private homes with a 

family-type care program for less than five 

children. Full-time. 

 GROUP FOSTER HOMES. Family-type 

homes for five to eight children. Full-time. 

 CHILD WELFARE INSTITUTIONS. 

Facilities within the community_ for four or 

more developmentally disabled children who 

cannot remain in their own or foster homes, 

and who require specialized training, care and 

services. May be temporary. 

 BOARDING HOMES. Homes for one to 

four children who temporarily need a place to 

live while attending a specialized school 

program—especially rural children. The 

children go home on weekends and for 

vacations. 

 TEMPORARY CARE HOMES. Short-term, 

respite care for one to four children to relieve 

the family, or give emergency housing to 

children while plans are made for their more 

permanent living arrangements. 

For ADULT living systems, 18 years and 

over, Wisconsin plans: 

 FOSTER HOMES. Private homes with a 

family-type care program for less than five 

adults who can tend to their personal needs, 

and do not need continuing medical nursing 

services. They may be working and paying a 

part of their expenses or being trained for 

employment. 

 GROUP FOSTER HOMES. Family-type 

homes for up to eight retarded adults who need 

supervision and personalized living. May be 

short-term or long-term care. 

 BOARDING HOMES. Homes for up to eight 

retarded adults who are capable of independent 

living and total self-care. Most pay their room 

and board from earnings. Sometimes placement 

agencies supplement the cost. Little supervision 

required. 

 RESIDENTIAL CARE INSTITUTION (Type 

I). Long-term care for a maximum of 50 semidependent individuals, most of whom will be 

able to care for themselves with minimal 

supervision, but require special social and 

vocational help. Emphasis on training by 

specialists in non-medical fields. 

 RESIDENTIAL CARE INSTITUTION 

(Type II). Short-term care in a program 

resembling a hostel or halfway house for 9 to 

30 residents living semi-independently, with 

social, minimal nursing and community living 

needs met in the home. Some work or go to 

training programs in the community. 

 NURSING HOME CARE. Three types of 

licensed nursing care for those who require 

specialized attention: 

Skilled: for those requiring services of a 

registered nurse because of severe handicaps. 

Limited: for semi-ambulatory persons with 

some self-help skills. 

Personal: for ambulatory handicapped persons 

who require minimal medication and are 

capable of supervised community activities. 

In all nursing home care, State residential 

facilities make an independent evaluation of licenses, and they must meet the requirements of 

the State licensing agency. 

Adequate adult programming for social, 

educational and recreational needs is possible 

with proper staffing and funding. The use of 

trained volunteers is also encouraged. 

The Wisconsin plan combines several 

agencies, including Division of Mental Hygiene and Family Service, Division of Health, 

Department of Social Service, Department of 

Industry and Human Relations (for local 

44 
building, zoning, health and safety requirements) with overall monitoring by the Bureau of 

Mental Retardation. 

For further information, write: 

Eastern Nebraska Community Office of 

Retardation 

Central Office 

116 South 42nd Street 

Omaha, Nebraska 68131 

Wisconsin Department of Health and Social 

Services 

Bureau of Mental Retardation 

Madison, Wisconsin 53706 

45 
Making It on Their Own 

Elwyn Institute, a residential facility 

for the mentally retarded near Philadelphia, 

chose 65 of its long-term residents to take 

part in a 4-year research project concerned 

with independent living. 

All were retarded, with an average of 15 

years in institutions. Most had been 

orphaned or abandoned by their families at 

an early age. The oldest had been in an 

institution for 49 of his 50 years. 

They were given batteries of aptitude 

tests; classes in personal adjustment, work adjustment, and community adjustment; and a 

"The mentally retarded are people. People do 

not live in institutions or facilities. People live 

in houses" 

—Jens Mailing Pedersen 

Danish Architect 

choice of 15 trade training courses. And then 

they were moved out into halfway houses to 

introduce them to independent living. 

Their work record: 

More than 90 percent are employed in 

steady jobs. 

Of those who had been in the labor market for four years, more than half had changed 

jobs—largely to better themselves. 

They were more satisfied with their 

work than with their wages and chances for 

advancement. 

Their social record: 

One-third were married, and had a 

total of ten children—not one of whom is 

retarded. 

All have made some new friends 

since leaving Elwyn. A few joined bowling clubs. 

Most return to Elwyn for annual parties, picnics, and on visiting days. A number 

came back for help in filling out income tax 

forms. 

Favorite recreation (in order of 

popularity): TV, radio, visiting friends, 

going driving, movies. 

Their record as residents of the 

community: 

Their savings accounts average 

between $300 and $500. Most have life 

insurance, in addition. 

Three had been arrested, but none convicted. 

Most lived in rented rooms or small 

apartments, starting out in furnished quarters, 

then buying their own furniture when they 

could afford it. 

So they have made it in the community. 

Nearly all feel they will never need to be in 

an institution again. And Elwyn agrees. 

For further information, write: 

Elwyn Institute 

111 Elwyn Road 

Elwyn, Pennsylvania 19063

46 
Building a Model for the Nation

Back in September of 1964, a group of 

special education vocational students in Pennsylvania were given the job of cleaning up and 

renovating an abandoned school bus garage. It 

was to be used later as a classroom and training facility for senior high school boys. 

Within two years they had gone far beyond cleaning up; they had renovated the 

building and constructed a wood-working shop, 

an auto body shop and a classroom. The building became a "monument" to the vocational 

students' ability. 

Too much had been gained to stop with 

that one project, so when a house in the 

community was about to be condemned, the 

Director of Special Services of Intermediate 

Unit one arranged to have it given to the 

program. 

One year later, the expertly renovated 

building was ready to be used as a home management house for trainable senior high school 

aged girls. The boys are still responsible for its 

maintenance. 

A more ambitious step followed. With 

$150,000 of school funds, the students 

overhauled a two-story building that is now 

the West Leisenring School for the 

Handicapped. A bright, cheerful school, it is 

complete with elevators and ramps for wheel 

chairs, a physical therapy room and other 

special purpose spaces. Its estimated value 

today is nearly six times the cost of renovation. 

By now, the vocational students had 

shown that they could do a job with supervision, and do it well. It was time for the program to grow up to its potential and branch 

out beyond the limits of the school. 

An agreement was made between the program directors and Concerned of Pennsylvania, 

Inc., a non-profit organization launched by clergymen of three denominations to develop 

badly needed low-cost housing. 

Concerned acquires the homes to be renovated, provides the building materials and 

leaves the completion date open-ended. The 

special education class provides students to do 

the work, instructors to supervise and train 

them, and hand tools and equipment. 

Specialized services beyond the capacity 

of the students are contracted out by 

Concerned. 

Because of the source of free labor, it is 

47 
possible to cut the selling price of the homes to 

the cost of materials and contracted services 

only. And the special education classes are assured a permanent program of on-the-job prevocational training in the building trades. 

The group has now progressed to building 

new pre-fab houses. 

To steelworker James Greene and his 

family, their renovated home in Smock, Pa., 

is a "dream come true." 

The Greens paid $9,500 for their attractive 4-bedroom home, with most of that 

amount covered by a Farmers Home Administration mortgage. 

The new pre-fabs are being sold for 

$15,500, well below the usual market price. 

Concerned now has applications for 175 

would-be purchasers. 

Because the construction work has taken 

the boys considerable distance from their 

school, they have a trailer for a classroom that 

goes with them on the construction site. It 

serves 20 to 25 students. 

The industrial arts teacher, who has had 

several courses in teaching the mentally retarded, and the certified special education 

teacher assigned to the classroom trailer, work 

closely with the boys and with each other. 

Classes and construction work are done in 

shifts. If there is any problem on the job involving math, reading, measurements, etc., it 

can be immediately corrected in the classroom. 

The curriculum is built around practical 

aspects of the job. 

Visitors to the current construction site 

will see one group of boys vigorously 

engaged in such tasks as waterproofing 

foundations while the other half of the class 

sits in an adjacent trailer concentrating quietly 

on their math workbooks. Peering over their 

shoulders, you'll see such eminently practical 

problems as: 

"A plumber, in connecting a water tank, 

used six lengths of pipe as follows: 16 inches, 

28 inches, 8 inches, 21 inches, 6 inches, 32 

inches. How many inches of pipe should he 

charge to the job?" 

Their instructor says he has never had any 

discipline problems, although this was not true 

when they were in a more traditional, less relevant academic setting. 

All eight of the June graduates from the 

program found employment, in spite of depressed conditions in this once prosperous coal 

mining area. 

They are living proof of the motto on the 

wall of their trailer-classroom: 

"When the going gets tough, the tough 

get going." 

Despite the attraction of the program, the 

question inevitably arises: What do the unions 

think of it? Isn't such work cutting into their 

territory? 

Not at all. The Monongahela Valley 

Building and Construction Trades Council 

is not only endorsing the program, but 

promoting it as an innovative approach to 

some of America's most urgent problems in 

both education and housing. Unions are busy 

with larger-scale projects and welcome the 

entrance of these young allies into the field. 

So, what started as a local, vocational education experiment for a few young men could 

prove to be the spearhead of a national program to provide low-cost housing, vocational 

education and employment to thousands. 

Fruition of such a plan requires the participation of State and local education departments and of several departments of the U.S. 

Government, including Labor, Commerce, Agriculture, Housing and Urban Development, 

and Health, Education, and Welfare. 

Indeed, the vocational students of the 

Monongahela Valley are building more than 

houses; they are building a model program 

for the rest of the nation. 

For further information, write: 

Director of Special Education 

Intermediate Unit One 

1148 Wood Street 

California, Pennsylvania 15419 

48
PCMR'S ROLE 

The Executive 

Order establishing 

the President's 

Committee on Mental 

Retardation assigned 

it three tasks: 

1. To advise and assist the President on 

evaluation of the adequacy of the national 

effort to combat mental retardation 

coordination of Federal activities in the field 

liaison between Federal activities and those 

of other public and private agencies 

development of public information to reduce the 

incidence of MR and ameliorate its effects. 

2. To mobilize professional and general public 

support for MR activities. 

3. To report to the President at least annually. 

49 
H I G H L I G H T S O F P C M R ' s 

ACTIVITIES IN 1972 

PCMR 

MEMBERS 

1972

Elliot L. Richardson 

Chairman 

Clair W. Burgener 

Vice Chairman 

Marianna Beach 

N. Lorraine Beebe 

PCMR organized, at the President's request, a 

full-scale review of all MR and MR-related 

programs in the Executive Branch of the 

Federal Government. The published report is the 

first on the total Federal MR effort. 

PCMR developed and published a Committee 

position paper on lead poisoning, terming it a 

preventable cause of mental retardation. 

PCMR held a series of meetings on critical 

issues in mental retardation, focusing on the 

return of retarded persons to community life. 

Participants: National leaders from parent and 

professional organizations in the MR field. 

PCMR launched a newsletter for the exchange of 

information on public relations activities of agencies involved in MR, with PCMR as clearinghouse. 

PCMR maintained an active interest in several 

court cases testing the rights of the retarded to 

education, treatment, due process, and payment 

for work. Committee assisted certain plaintiffs in 

obtaining expert advice and testimony. PCMR 

plans a National Legal Rights Conference in 

the spring of 1973. 

PCMR determined that the President's goal of 

reducing by half the occurrence of MR could 

best be met through improved maternal and infant 

care. 

PCMR organized training institutes in southwestern and midwestern states for leaders in 

parent and professional MR groups. Institutes 

covered a wide range of subjects including the 

Robert A. Collier 

Frank R. DeLuca 

Richard J. Elkus 

Ralph J. Ferrara
Donald L. Fox 

(Deceased) 

Melvin Heckt 

Cecil B. Jacobson, 

M.D. 

James N. Juliana

latest in preventive measures and community 

services, presented by experts. 

PCMR met with the youth branch of the National 

Association for Retarded Children to discuss their 

volunteer efforts.

PCMR met with spokesmen for the health insurance 

industry to try and resolve misconceptions of the 

nature of mental retardation which has caused 

insurance groups to consider the retarded "uninsurable." 

PCMR conducted, in a coordinated effort with 

several agencies, a definitive conference on early 

childhood screening and assessment, led by foremost 

authorities in the field. The findings and 

conclusions will probably have national implications concerning cost-effective screening programs 

and treatment before the occurrence of irreversible 

damage. 

PCMR expanded its international interests, in attempting to identify mental retardation services 

and programs which might serve American citizens overseas. Participants in a series of meetings 

included representatives of the State Department, 

Organization of American States, International 

League of Societies for the Mentally Handicapped, and Armed Forces agencies. 

PCMR served as catalyst in creating the Indian 

Education for Health Committee, whose formation 

was personally announced by the Secretary of 

Health, Education, and Welfare (responsible for 

Indian health), and the Secretary of Interior 

(responsible for Indian education). The purpose is 

to coordinate health and education programs on 

reservations, with an emphasis on mental retardation prevention and improved communityservices for the retarded. 

PCMR studied, endorsed, and disseminated information nationally about an innovative school 

Lawrence A. 

Kane, Jr. 

Aris (Bob) Mallas 
William B. 

Robertson 

Kenneth S. Robinson 

Jeannette 

Rockefeller 

The Secretary of 

Labor, Ex Officio 

vocational program in Western Pennsylvania 

in which retarded youth learn construction skills 

and related academic subjects by renovating 

houses for sale to low-income families. 

PCMR conferred with the National Association 

of School Psychologists on alternatives to IQ 

tests in assessing pupils' individual needs. 

PCMR held a planning session with representatives of Federal agencies in the mental retardation 

field to discuss training of administrators in 

the delivery of human services rather than 

solely for the delivery of services to a specific 

group. 

PCMR issued six new publications, bringing 

the number of reports to 20 at the present time. 

(A current list is available on request.) Total 

number of publications distributed in 1972: 

259,550. Total number of inquiries received 

and answered in 1972: 42,860. 

Caspar W. Weinberger 

52 

Will Beth 

Stephens, Ph.D. 

Margaret B. Ulle 

Miriam G. Wilson,

M.D. 

The Director of the

Office of Economic

Opportunity, 

Ex Officio 
M R 72 RECOMMENDATIONS 

We have described in this report models of programs in various 

parts of the nation. Clearly implied is our recommendation that such 

programs be adopted or adapted on a wider scale by State and 

community agencies. More specifically, as to Federal actions, we offer 

the following recommendations as means of achieving the President's 

goals in mental retardation: 

1. A Mental Retardation Coordination and Liaison Office 

at the highest administrative level should be established in 

Federal departments of executive agencies that have not already 

done so. Through these offices, the departments and agencies 

should work with the President's Committee on Mental 

Retardation for a coordinated effort. Similar action should be 

taken at the regional level, involving Federal, State and local 

representatives. 

2. A plan should be formulated by the involved Federal 

departments to aid State and local governments in implementing 

community services as alternatives to institutionalization of 

mentally retarded persons. 

3. Public agencies and private businesses capable of helping 

retarded persons to find competitive or sheltered employment 

should reexamine and intensify their efforts to secure far more 

job placements. A chance to do work according to their 

highest potential is crucial to a better life for retarded persons. 

4. As a prime means of preventing handicaps, efforts should 

be concentrated on improving maternal and infant care. 

5. The Federal Government should make fullest use of existing 

Federal authority to act on behalf of legal rights of the 

mentally retarded, and should consider enlarging that 

authority. 

6. Appropriate agencies and organizations should work with 

PCMR in focusing information and education resources to 

create greater public awareness of prevention possibilities and a 

climate of community acceptance for retarded persons. 53 
PCMR STAFF 

OFFICE OF THE DIRECTOR 

Fred J. Krause, 

Executive Director 

Helen C. Caldwell 

Ruth Ann Metzger 

PROGRAM OFFICE 

Allen R. Menefee, 

Program Coordinator 

Alfred D. Buchmueller 

Elizabeth S. Bush 

Edward J. Lynch 

Richard C. Thompson 

Gwen R. Coleman 

Edna G. Cosby 

Gail M. Gorman 

Pierette A. Spiegler 

INFORMATION OFFICE 

Raymond W. Nathan, 

Director of Communications 

Martin Bouhan 

Mary Z. Gray 

Nancy O. Borders 

Beverly M. Keith 

Mattie A. Smith 

MANAGEMENT OFFICE 

Stanley J. Phillips, 

Management Officer 

Ruth G. Gray 

Patricia S. Kramer 

Larry Lane 

CONSULTANTS 

Richard C. Allen, J.D. Harold S. Barbour, 

Ed.D. Charles C. Bergman 

Leo F. Cain, Ph.D. 

J. Julian Chisolm, Jr., M.D. Louis Z. Cooper, 

M.D. Patrick J. Doyle, M.D. Maurice Flagg 

Dennis E. Haggerty, LL.B. H. Carl 

Haywood, Ph.D. Edward L. Johnstone 

Tadashi A. Mayeda 

Paul A. Rittmanic, Ph.D. Donald J. 

Stedman, Ph.D. George Tarjan, M.D. John 

D. Thompson, M.D. Thomas A. Tucker 

Raymond W. Vowel! 

We wish to thank the numerous individuals 

in all levels of government and the private 

sector, especially those in voluntary 

organizations, who have contributed so much 

toward PCMR's efforts to reach the 

President's goals of prevention and 

normalization in the field of mental 

retardation. We appreciate the commitment 

of PCMR's consultants and special advisors 

who have given technical assistance on many 

projects and special reports. And we wish to 

pay special tribute to the staff whose 

experience and dedication have enabled the 

Committee to carry out its far-ranging 

program to prevent mental retardation and 

to ease the burden of those afflicted. 

Fred J. Krause 

Executive Director

54 

U.S. GOVERNMENT PRINTING OFFICE: 1973 735-726/2118
DEW Publication No. (OS) 73-7 

President's Committee on Mental Retardation 

Washington, D.C. 20201