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The original documents are located in Box 42, folder "President's Committee on Mental
Retardation" of the Betty Ford White House Papers, 1973-1977 at the Gerald R. Ford
Presidential Library.
Copyright Notice
The copyright law of the United States (Title 17, United States Code) governs the making of
photocopies or other reproductions of copyrighted material. Betty Ford donated to the United States
of America her copyrights in all of her unpublished writings in National Archives collections.
Works prepared by U.S. Government employees as part of their official duties are in the public
domain. The copyrights to materials written by other individuals or organizations are presumed to
remain with them. If you think any of the information displayed in the PDF is subject to a valid
copyright claim, please contact the Gerald R. Ford Presidential Library.
3
Hello
World!
THE PRESIDENT'S COMMITTEE
on MENTAL RETARDATION
presents this pamphlet in the hope that it
will further an understanding of the men-
tally retarded, and by so doing, will ease the
way for them to become a part of the world
in which we all live.
The Committee is composed of 21 citizen
members and 3 ex-officio members appointed
by the President of the United States.
to advise him on what is being done for
the mentally retarded;
to recommend Federal action where
needed;
to promote coordination and cooperation
among public and private agencies;
to stimulate individual and group action;
and to promote public understanding of
the mentally retarded.
R
emember how it feels to be called on in
school when you haven't done your home-
work?
That's the way Tommy feels now. He's the
eight-year-old standing by the blackboard
with the faded T-shirt hanging out over his
blue jeans.
His teacher has asked him to add 46 and
24. She may as well have asked him to solve
a problem in nuclear physics. It's true that
he didn't do his homework, but if you can't
read, what's the point in looking at a book?
Yesterday, Tommy was called down for
not knowing his address. In the last two
years he has moved from his mother's to
his grandmother's, and now to his aunt's.
No one has told him the address.
He had been excited about starting school
and learning all the things big children
know. But the teacher had no more time to
give him than anyone else ever had. And it
was almost as noisy and crowded there as it
was at home, where there were nine people
living in two small rooms.
Each month Tommy drops further and
further behind in his schoolwork. Now he is
no longer just a slow learner; his ability
1
to learn has become limited. How long it
will remain limited depends on the kind of
help he receives.
Tommy is mentally retarded.
In the most important growing period of
his life, between birth and five years, when
he was learning to talk and becoming aware
of the world around him, there was no one
who could afford to give him more than the
bare physical necessities.
No one could provide him with the lux-
uries of fondling, talking to him, reading to
him, or stimulating his mind and emotions.
His early years were his big opportunity for
learning. And he missed the opportunity.
Without early, personalized special educa-
tion, the effort to catch up will become pro-
gressively more difficult and futile. Year
after year he will probably be given a "social
promotion," until he drops out of school at
around 15, if he follows the usual pattern.
By then he will be in the tenth grade, though
he may still be reading on second grade
level.
Chances are that his mounting frustration
will find expression in behavior problems,
and for the rest of his life he will remain
emotionally and socially a young adolescent,
his potential for a productive maturity lost.
Some gifted teacher or other adult with
time and love enough to provide the special
attention he needs might yet give him the
proper motivation at the teachable moment
to spark his mental motor into high gear.
But it will have to be soon-and sustained.
Time is running out for Tommy's teachable
moments.
Essentially, he is a normal person whose
learning capacity has become limited be-
cause of the mental and physical hardships
of poverty.
Tommy represents the majority of all the
retarded persons in the United States.
3
It is this new knowledge-this expectancy
The rest are retarded-mentally deficient
of success-that sparks the present con-
-because of some inborn defect, an acci-
certed national effort of layman and profes-
dent, or a certain disease at an early age.
sional, government and private enterprise.
Rich and poor alike can be affected by these
Expanded teacher training programs, new
forms of mental retardation.
methods in education and training of the
The mentally retarded learn more slowly
retarded, Head Start and other early en-
than others, and are limited in what they can
richment projects, revised job training,
learn. That's all. They are children and
behavioral and biomedical research, diag-
adults with the same human needs that we
nostic and evaluation clinics and new treat-
all have-only more so.
ment centers are all geared to this new
Their mental and social handicaps may be
understanding, this change in basic concepts
mild, moderate, severe, or profound.
of who the mentally retarded are and what
The retarded don't need less education
they can do.
because they are retarded; they need more
Although it will take long and continued
and better education geared more to their
effort for the new concepts, services and
individual capabilities than the average, in
on-the-spot help to reach all those who need
both academic and social skills. Even the
it, many are already benefiting.
most profoundly retarded can benefit from
early training. The earlier the education or
training begins, the greater the chances for
success.
In fact, many children like Tommy might
never have become retarded if they had been
given the opportunity for healthy human
development in their early years.
Less than a generation ago, many of the
experts held that intelligence was fixed at
birth. Only a few disputed the theory.
The excitement surging in the field today
springs from living proof that mental ability
can grow when nourished with human
warmth and stimulation. Minds can also
deteriorate from neglect.
Since we know now that human potential
is determined not by nature alone, but also
by each individual's response to his environ-
ment, it follows that an improved environ-
ment can change the course of life. It is
nature and nurture that shape human lives
-a fact that makes all the difference in
current attitudes and actions toward the
retarded.
4
5
pand his horizon until his apparent limits
are reached. He may then "graduate" into
Richard is one of them. Unlike Tommy,
more specialized job training, though from
whose retardation was caused by his en-
the beginning, his education will be designed
vironment, Richard was born with his hand-
to help him become a productive, self-sup-
icap.
porting citizen. However, when he has to
He was slow as a baby-slow to smile, to
make an important decision or when a crisis
sit up, to crawl, to feed himself, to be toilet
arises, throughout his life he will need help
trained.
to guide him.
His parents took him to a mental retarda-
Otherwise, for Richard, all systems are
tion clinic attached to a nearby university
GO.
where a team of professionals diagnosed
Less than ten years ago there would have
him as mildly retarded-cause unknown,
been no clinic, little knowledge of the added
"an accident of nature."
benefits of the early socialization and intro-
He is now in a special education class with
duction to education of the pre-school nurs-
nine others of comparable age and ability,
ery, and few special education classes. Those
each learning at his own pace.
in the field were seldom aware of the
Richard is the one with the crewcut,
potential for learning that the retarded
writing the word GO, and coloring it green.
have when given the opportunity.
The class is learning to read signs. They
will learn arithmetic similarly planned to
serve a practical purpose in life-how to
measure wood to make a footstool, how much
change you get back when you give the bus
driver a dollar.
When Richard was about three, his
mother, with the help of the local chapter of
The more seriously retarded-repre-
the National Asssociation for Retarded
senting a minority of the total-present
Children, organized a pre-school nursery
different kinds of problems. Because there
with the parents of other retarded children
are physical causes of mental deficiency, and
in the community. She found them through
because there are usually added physical
a letter to the editor printed in the local
defects, they have more need for medical
newspaper, and through public service an-
care than the mildly affected. They, too,
nouncements on the local radio station. A
however, can be considerably helped by early
nearby church gave them the use of their
education and training.
parish hall for the five-day a week classes.
Under other circumstances, that winsome
The parents also worked together to en-
little blond girl swimming in the pool with
courage the school board to increase the
her sister may have been hidden at home-
number and quality of special education
or left to vegetate in a custodial institution.
classes in the area. Funds for classrooms
Her name is Jennie, and she is moderately
and teachers' salaries come from local,
retarded.
state and federal sources.
Her eyes slant a little; her nose is short;
His special education will continue to ex-
her fingers stubby. She has "Down's Syn-
6
7
drome," more commonly called Mongolism,
a condition that occurs in one out of about
Sixteen-year-old Ron, for instance, is now
every 600 or 700 births.
happily engaged in placing light bulbs in
Not all of those with Down's Syndrome
paper cartons for an electric company that
are moderately retarded like Jennie. Some
contracted the job to a sheltered workshop.
are only mildly affected; others seriously
No light bulbs ever received more tender
handicapped.
handling.
She is capable of learning to read and
The workshop is supported by the local
write a little-up to about a normal seven-
vocational rehabilitation office, in partner-
year-old's level-but she learns very slowly
ship with the local association for retarded
and requires much patient repetition in
children.
order to retain it.
In the evenings, Ron returns to the state
Jennie will need some protective care
school where he lives, traveling by a bus
throughout her life. This does not mean that
provided by the men's group of a church.
she must be in an institution. Increased
He makes enough to provide him with
day care programs, the additional training
some spending money, and last year a local
now available in public schools, and ex-
civic organization took the workshop em-
panded vocational training opportunities are
ployees on a Christmas shopping trip. For
proving that the majority of the moderately
the first time in his 16 years he was able to
retarded can lead useful and productive
buy his parents a Christmas present with
lives-outside institutions.
his own money. It was the proudest day of
This fact represents a revolutionary
his life.
change in concept and action in less than a
Ron has only partial vision, blurred
decade. Unfortunately, the change has not
speech, cerebral palsy, and a very low I.Q.
yet reached into the lives of all of the re-
Despite these massive handicaps, he has at
tarded, and most communities are still
last found a purpose in life.
without the programs that make semi-
Without the help he has received, Ron
independent living possible for them.
might have sat day after day after day on a
long bare bench, staring at the long gray
walls of a back ward.
Just as thousands like him are still doing.
The profoundly retarded require a great
The smallest number of the mentally re-
deal of care and training. For centuries it
tarded-but those requiring the greatest
was thought that all that could be done was
personal care-are the severely and pro-
to feed them and try to keep them clean. It
foundly affected.
requires dedicated and constant effort for
Some of the brighter members of this
the nurses and attendants of many under-
group can be trained to do productive work
staffed institutions to fulfill even these mini-
under immediate supervision-an accom-
mum human requirements.
plishment most people had never before
thought possible.
"There were wards with the completely
helpless who cannot turn themselves over
8
9
in bed, much less feed themselves; wards
feeds herself and goes to the toilet alone. Not
with poor tormented souls constantly on
very remarkable for a ten-year-old. But
the move, as if on a never-ending search for
Betsy is profoundly retarded. Seven weeks
a peace they would never find; wards with
earlier she could do none of these things.
quiet little old ladies who from time to time
Because the staff had faith that she was
would come back from the private worlds
capable of benefiting from training, she was
they had occupied for twenty years.
chosen for a special experiment in behavior
"And finally-and most important-there
modification. With infinite patience, step
were the children.
by step, an attendant trained her to feed
That is a description of a hospital for the
herself, undress, dress, and go to the toilet,
severely and profoundly retarded in the
with rewards for the most microscopic ac-
words of a state legislator after his first visit
complishment in each phase of the training.
to such an institution-"a chastening ex-
This promising technique, based on
perience on a bright blue, cold day."
rewards for desired behavior, is being intro-
But even here, there is hope, and dramatic
duced into several institutions for the re-
change for a fortunate few.
tarded not just as a pilot study, but as an
Betsy now dresses and undresses herself,
ongoing part of the total program.
Ward attendants and nurses are seeing
many of their charges become changed,
socialized human beings. Many more are
capable of achieving these goals.
But what hope is there for those much
worse off than Betsy? Children like Harry,
restrained in his crib for self-protection, his
body wracked with convulsions coming at
the rate of one every three minutes, twenty-
four hours a day.
Modern science has not been able to find
the answer, and medicine hasn't worked for
this child.
But something else is working. A foster
grandmother. In fact, a team of foster
grandmothers and grandfathers who come
into the hospital on four-hour shifts around
the clock to take him out of his restraints
and hold him, rock him, talk comfortingly
to him-and love him.
The convulsions have ceased.
For the first time he is responding to
people. Time will tell how far his progress
will go. There is hope for others like him.
There are other signs of progress on the
institutional scene. Rehabilitation services
10
11
are starting to move in-and are moving out
PREVENTION
some who have been patients for 20 years or
more. These patients need a great deal of
The kind of mental retardation that has a
help and supervision, social and job train-
physical cause is being attacked on the medical
ing, but the success is more than worth the
front. Large investments in biomedical re-
effort-and results in substantial savings
search are paying off.
after the initial investment.
If you are in the child-bearing years, take
advantage of the findings, and protect yourself
and your children with these measures:
Guard against rubella (3-day German
measles) that can be severely damaging to the
fetus when contracted by the mother during
early months of pregnancy. Check with your
physician regarding immunization.
Have your children vaccinated against
the 10-day measles, a disease that can cause
brain inflammation and resulting retardation.
Insure against results of untreated kidney
or bladder infections, thyroid disease and dia-
betes by being under medical care throughout
pregnancy. These diseases often have few or
no symptoms, but can cause abnormalities in
the baby.
If genetic counseling is available in your
community take advantage of it before con-
ception, especially if there is any abnormality
in either parent's family, or if you have had a
defective child.
Protect against x-rays and other radiation
Some go through a period of living in a
exposure for both mother and father before
half-way house and then entering the "out-
conception, with special precautions for the
side world." Others work by day in sheltered
mother during pregnancy.
workshops, business or industry and return
to the institution at night. Still others are
Avoid all drugs during pregnancy except
moving into boarding homes set up specifi-
those your doctor prescribes. Certain drugs
cally for the adult working retarded person,
may cause deformities, and some otherwise
who joins a family of others like himself,
harmless drugs in combination with others
with a "mother and father" in charge.
can result in defects.
Now they can become producers as well
If blood tests at any time indicate vene-
as consumers-and individuals who have
real disease for mother or father, get treat-
found their human dignity.
ment immediately.
12
13
Have prenatal tests to discover any in-
same way in which crowding, malnutrition,
compatible blood factors, and take advantage
ignorance and unemployment run in fam-
of the latest treatment available.
ilies.
Eat a balanced diet throughout life.
Those affected are not all in city slums.
They are in the hills and hollows of Appala-
chia, too, and in Louisiana bayous, in share-
Have your baby checked for inborn
croppers' shacks in Oklahoma, in migrant
chemical errors immediately after birth.
work camps in California, on Montana
Some can be corrected.
Indian reservations, and in disadvantaged
homes across the nation.
Among other known causes of defects are:
Problems caused by prematurity and birth
There is a greatly increased danger of
injury; certain infections and viruses, pro-
pregnancy complications among the poor,
a higher incidence of prematurity and prob-
longed high fever, inadequate diet and physi-
lems at the time of birth, such as breathing
cal injury during pregnancy.
difficulties, convulsions and circulation dis-
The nine months of gestation and the first
orders.
three to four years are the most crucial in
These troubles, in turn, very often lead to
our entire lifetime.
mental retardation, and varieties of physical
Good nutrition and health care are vital.
defects and weaknesses.
But a whole person is one whose mind and
Government and private programs which
emotions as well as his body have been richly
encourage economic development, improved
nourished.
In the first 30 months, when the child is
normally learning to talk, the tone is set for
later learning and emotional experience. In
that most impressionable period, individuals
are patterning their response to life as they
perceive it through their senses and through
the immeasurable relationship with another
human being.
This bond cannot be defined, but it is ex-
pressed in a thousand ways-holding the
baby close, cuddling, talking, smiling, rock-
ing, playing, perhaps singing or cooing to
him.
Simple and obvious? For many, yes. For
others, not so obvious. Or perhaps not so
simple. The struggle for survival among the
poor can often crowd out all other considera-
tions, leaving little time or room for indi-
vidual attention.
The kind of mental retardation that is
caused by deprivation is widespread in
poverty areas. It runs in families only in the
14
15
education, job training, equal opportunity,
better housing, rehabilitation, maternal and
child care are all related parts of the com-
bined attempt to prevent mental retarda-
tion so widespread among the poor.
TO THE PARENTS
of a retarded child.
The first big hurdle is getting over the
initial shock of being told that your child is
retarded. There is no need for shame or
guilt. These emotions drive parents into
either rejection or over-protectiveness, and
both can often be more emotionally
damaging to a child than the retardation.
Mentally retarded children have been born
into families in all walks of life-from the
richest home to the poorest slum dwelling.
"Shopping around" for a physician to
revise the diagnosis is usually futile. How-
ever, rather than determine your child's
future on the basis of one opinion, it is ad-
visable to have a team of professionals
examine him. His hearing, vision and neuro-
logical system need to be tested, in addition
to his intelligence.
The most thorough professional teamwork
is most often found at a clinic attached to a
university, or a community diagnostic and
treatment center. If there is neither in your
area, ask your doctor to consult with special-
ists to confirm the diagnosis.
Then if the final diagnosis is positive,
accept it-as a challenge, not as a problem.
And know that you are not alone.
Investigate all of the health and education
services for the retarded offered in the com-
munity. If adequate help is not available,
Mrs. Hubert Humphrey with her granddau
join with other parents to start action. This
Vicky Solomonson, who is mentally retard
16
17
is the way many such community services
such activities in your area, the Association
began.
for Retarded Children will help you start
If you are the parent of a retarded adult,
them.
you are probably concerned about his future.
Volunteers under 21 can join the fast-
What will happen when you can no longer
growing numbers of young people working
care for him?
together with great success to help the men-
As yet, there is no easy answer.
tally retarded live fuller, more enjoyable
Some states are now building group
lives. Get in touch with YOUTH-NARC,
homes, often called hostels, for dependent,
2709 Avenue E East, Arlington, Texas 76011
retarded adults.
Young people across the country are
The best long-range solution is concerted
taking an active-and most effective-role
citizen action. There is a need for foster
in changing the lives of the retarded through
parents, special group living facilities, and a
recreational activities, sports, tutoring,
life-long guarantee of sheltered living condi-
fund raising, and drives to inform the public
tions in each community for those unable to
about mental retardation, as well as bring-
lead independent lives.
ing new life into institutions and "disturbing
dusty old ways of thinking," as one hospital
VOLUNTEERS
administrator put it.
Volunteers are needed to:
transport the retarded to and from
CAREERS
clinics, preschool programs, day care cen-
ters, sheltered workshops, recreational ac-
Careers for professional and supportive per-
tivities;
sonnel in mental retardation and related fields
help them develop through sports and
recreational programs;
work as aides in residential homes for
the retarded;
help in day care centers, clinics, pre-
school nurseries, special education class-
rooms, private tutoring, sheltered work-
shops, offices, labs;
relieve mothers of retarded children by
sitting with them or taking them on outings;
help the retarded find jobs in the com-
munity.
Among those already doing volunteer
work with the retarded are local chapters of
the Association for Retarded Children,
Civitans, Junior Chamber of Commerce,
4-H Clubs, the American Red Cross,
churches, synagogues, and other civic and
fraternal organizations. If there are no
18
don't skip, or mind if it is the same story
again. Everybody should try to have one,
especially if you don't have television, be-
cause grandmas are the only grownups who
have got time."
CONCERNED CITIZENS
If every concerned citizen or group of
citizens joined forces with those already
engaged in helping the mentally retarded, all
of the retarded could lead fuller and more
productive lives-and a great many might
never become retarded at all.
These are the most important things to
do:
In All Areas
Support appropriate legislation on the
local, state and national level.
cover a wide range, including special educa-
tion, psychology, sociology, medicine, and
rehabilitation, to name a few.
There are new careers also opening up in
mental retardation for junior college and
high school graduates, neighborhood leaders,
students and retired men and women.
Retired men and women across the
country are becoming Foster Grandparents
to the retarded with very gratifying results
on both sides. They are paid on an hourly
rate for about four hours a day.
The best job description of what is re-
quired comes from a mildly retarded girl
who had a foster grandmother:
"They don't have to be smart, only answer
questions like why dogs hate cats, and how
come God isn't married. They don't talk
baby talk like visitors do, because it is hard
to understand. When they read to us they
20
21
In Education
take their children while they attend the
clinics.
1. Urge your local school system to provide
early childhood education, especially for de-
prived children.
EMPLOYERS
2. Work to improve teacher attitudes to-
ward children of the slums, and more imagin-
The shirt you are wearing may have been
ative educational techniques.
laundered and packaged by a mentally re-
tarded worker.
3. Campaign for more and higher quality
special education and vocational training
Your child's favorite toy was probably
classes, with specially trained teachers, and
made by a mentally retarded employee.
flexible programs to allow children to move
The wiring on your television set, the meal
freely between academic and vocational pro-
you enjoyed on your plane flight, the new
grams, as their abilities and interests change.
upholstery on your sofa-all these things
the mentally retarded could have had a hand
4. Encourage early identification of learn-
in accomplishing. For these are but a few of
ing problems and help for those who need it.
the industries successfully using retarded
workers.
In Maternal and Child Care
In fact, this pamphlet may have reached
you with the help of a mentally retarded
1. Urge your family physician, your
person employed by the Post Office-one of
health department, or local medical group
or hospital, to help set up prenatal clinics
for all mothers.
2. Urge your hospital to give tests shortly
after birth, to discover in time conditions
which can cause mental retardation.
3. Ask your hospital, family physician or
local medical group to assist in setting up pro-
grams in maternal and infant care to help
prevent mental retardation.
4. Call or write your local association for
retarded children to discover if your state is
providing good maternity care and medical
and psychological examinations of infants.
Then write your legislator and other govern-
ment officials to support these programs.
5. Organize groups to provide transporta-
tion to clinics for under-privileged mothers,
or to supervise nurseries where they can
22
23
thousands working in the U.S. Government.
Employers are learning that it isn't
charity to hire the mentally retarded. It's
The best place to start in helping the re-
good business.
tarded is with YOU. Whether or not you
work with them as a volunteer or in a
They are happy doing the monotonous
but necessary chores that are often the
career, whether you hire or fire them, if you
cause of a high rate of job turnover, fre-
accept them as fellow human beings, their
battle is half won.
quent absences and frustration-problems
that eat into the managerial budget.
They need respect-not pity, nor over-
When properly trained for a job they feel
protection, nor babying. Though they also
competent to do, they make fewer job
need your financial support for education
changes, have a lower absence rate, are
and training, treatment and care, they need
more punctual, and are generally more con-
you even more. No amount of money or
scientious than the average worker.
trained manpower can substitute for the
The mentally retarded, however, are not
most needed commodity of all-and the most
all alike. Although the majority prefer
successful-a person who cares. The re-
routine, repetitive jobs, there are many with
wards are great.
special skills who are producing genuine
works of art, etching on glass, painting,
sculpture, industrial and fashion design.
The Committee expresses its appreciation to the
following for the use of their photographs:
Gracewood State School, Atlanta, Georgia
Little Grassy Facilities, Southern Illinois
University
National Association for Retarded Children
David Warren
Jim Wells
DHEW Publication No. (OS) 73-94
24
U.S. GOVERNMENT PRINTING OFFICE: 1973 M-727-162/187
National Association for
Retarded Children
2709 Avenue E East,
Arlington, Texas 76011
Asociacion pro Ninos Retardados de
Puerto Rico
G.P.O. Box 1904, San Juan,
Puerto Rico 00936
Canadian Association for the
Mentally Retarded
Kinsmen Bldg., York Univ. Campus,
Downsview, Ontario
The President's Committee on
Mental Retardation
Washington, D.C. 20201
FORD
BERRLO
LIBRARY
PCMR
is for people
The President's Committee on Mental Retardation, Washington, D.C. 20201
"The important
The PCMR Mission
thing is to
Six million Americans, it is estimated,
are mentally retarded in varying degrees.
integrate the
For them and their families, this condition
can bring great tragedy.
retarded as
For the nation, its toll is staggering in
lost productivity and cost of special care.
much as possible
To focus the full efforts of government
and citizens on this problem, the
into normal
President's Committee on
Mental Retardation (PCMR)
was established in 1966.
activities and
The committee is a group of prominent
services rather
citizens named by the President to
assist him in translating his concern for
the retarded into effective measures of
than separate them
Research and Manpower Development
Prevention
In this particular
Service
Information
field you can do
The Committee is chaired by the Secretary
of Health, Education, and Welfare. The
so much to change
Secretary of Labor and the Director of the
Office of Economic Opportunity also serve.
Twenty-one citizens are appointed to
the life of an
three-year terms, with one-third of the
appointments expiring each year.
individual, to
The citizen members undertake their
Committee duties in addition to their
make his life better."
normal occupations as physicians,
educators, attorneys, businessmen, etc.
To assist them and provide continuity of
operations, a small professional staff
PRESIDENT RICHARD NIXON
functions at Washington headquarters, and
to PCMR Members at the
a number of consultants are retained
White House, January 19, 1970
to provide expertise in specialized fields.
DHEW Publication No. (OS) 72-21
The President Orders
Example: "Residential Services For The
Mentally Retarded: An Action
Policy Proposal."
The Executive Order establishing the
Committee assigned it three tasks:
Collaboration with other Federal
agencies in developing action programs.
1 To advise and assist the President on
Example: With the President's Committee
a evaluation of the adequacy of the
national effort to combat mental
on Employment of the Handicapped,
retardation
formulated a 39-point action program on
habilitation and employment of the
b coordination of Federal activities
mentally retarded.
in the field
c liaison between Federal activities
Campaigns to increase public aware-
ness of mental retardation needs.
and those of other public and
private agencies
Example: Through the cooperation of
d development of public information
The Advertising Council, many magazines,
to reduce the incidence of MR and
radio and TV stations donated $40 million
ameliorate its effects.
in free space and time for public
service messages from PCMR.
2 To mobilize professional and general
public support for MR activities.
Sponsorship of studies on fundamental
issues in mental retardation.
3 To report to the President at least
annually.
Example: A biologist has been assembling
all available knowledge on the relationship
of malnutrition to retardation.
Convening state and local officials and
professional groups to consider
special needs of the retarded.
Example: A Law and Ethics work group
of PCMR is planning regional conferences
To Meet These Needs
of law enforcement officers and members
of the bar on the rights of the retarded
when they come into contact with
Committee activities carrying out these
"the law."
assignments include:
Developing recommendations to the
Issue-oriented work conferences of
President for new programs which can
leaders in the various fields having
prevent or ameliorate retardation.
an impact on MR.
Example: The Committee formulated a
Example: The March 1971 conference to
proposal for a research institute that
take a fresh look at the whole process
would explore the little understood
of placing children in special education
learning process in terms of both the
programs for the mentally retarded.
biological and behavioral forces, and their
relationship. The President adopted
Publications highlighting areas where
(and adapted) this proposal as a key
action is needed.
feature of his education message.
And For Tomorrow
Answers may lie in finding better
techniques of measuring ability than I.Q.
PCMR has launched a "new thrust"
tests without regard for adaptive behavior
program, which emphasizes the human
or cultural or language background; in
ecology aspects of retardation. With
providing special education classes for
mounting evidence that a high
the half of the nation's school districts
percentage of cases labeled
now without any; and in the improvement
mental retardation stems from environ-
of our total education system through
mental causes, the Committee seeks to
application of those innovative methods
mobilize all available resources of
which have worked best in controlled tests.
research and manpower for an attack on
those causes. The attack will be
How can we provide an environment in
multi-faceted, dealing with such
which the mildly or moderately retarded
questions as:
can live in the community as productive
How can we make available to
members?
prospective parents the information and
services that will give them the best
Here we must collect and make widely
chance to produce normal children?
known the best models of new techniques
in group homes, recreational programs,
The answers will require exploration of
job-finding, and counseling service on
vaccination and other measures to prevent
personal problems.
infections of the mother which can
cause retardation in the child; of
How can we mobilize Federal agencies
nutritional and other pre-natal care
for a coordinated attack on mental re-
that will help prevent retardation; of new
tardation?
genetic techniques, such as prediction of
defects by examination of the amniotic
fluid surrounding the fetus.
PCMR has begun a systematic
exploration of the varied Federal resources
How can we improve the quality of life
which can be brought to bear. If,
during the first few years so that
for example, new types of living facilities
"retardation" will not develop?
are needed to keep the retarded in
their home communities, can the Depart-
We must seek answers in such directions
ment of Housing and Urban
as enriching the child's experience with
Development help?
new stimuli (e.g., Head Start
programs); guarding his physical well-
being (e.g., the Health Start concept
Can private agencies not specifically
of the Office of Child Development);
concerned with MR make a contribution?
and making possible an adequate
nutritional level (e.g., the Family
Voluntaryism is a major factor in
Assistance Plan).
American life, and PCMR plans to seek
broader participation in MR activities
How can we keep those who start
by national voluntary or professional
school with some mental handicap from
organizations. The aim is to provide
falling further and further behind until
a fuller life for the retarded through
they may develop emotional and be-
sports, camping, recreational and
havioral as well as educational problems?
other programs.
ORDER BLANK
How You Can Help
Please send me the publications of the Presi-
dent's Committee on Mental Retardation check-
The job of combating mental
ed below, to address on other side.
retardation cannot be done by
government alone.
HELLO WORLD. Popularly written general in-
As a good citizen, you can:
formation booklet, with retarded individuals il-
lustrating levels and kinds of retardation, causes,
JOIN WITH OTHERS in your area to
means of prevention and aid.
promote services and better understanding
TO YOUR FUTURE WITH LOVE. For young
for the mentally retarded.
people seeking meaningful volunteer and ca-
Contact your local association for
reer opportunities. Many experiences are told
retarded children, Civitan Club,
by volunteers in their own words.
Junior Chamber of Commerce, public
school special education department,
THESE, TOO, MUST BE EQUAL. Describes
America's needs in habilitation and employment
community recreation department, or
of the mentally retarded, and lists proposals
community volunteer office.
for action.
BRING COMMITTEE RECOMMENDATIONS
RESIDENTIAL SERVICES FOR THE MEN-
to the attention of public and private
TALLY RETARDED: AN ACTION POLICY PRO-
POSAL. A proposed statement on residential
agencies for appropriate consideration.
services for public and professional review.
STIMULATE INVOLVEMENT of area
MR 71: ENTERING THE ERA OF HUMAN
professional groups-medical
ECOLOGY. A report on the interrelated genetic
society, bar association, etc.-in special
and environmental factors that cause mental
retardation, with indications of what PCMR is
mental retardation projects related to
doing about such problems as lead poisoning,
their professional concerns.
genetic damage, and legal rights, among others.
BECOME A TEACHER OF THE
MANPOWER AND MENTAL RETARDATION-
RETARDED. Contact your local college
AN EXPLORATION OF THE ISSUES. Proceedings
or university for information.
of a joint United States-Canada Conference:
1970.
A VERY SPECIAL CHILD. Report of a confer-
YOU CAN HELP-IN so MANY WAYS.
ence on placement of children in special educa-
tion programs for the mentally retarded, with
recommendations on restructuring testing
process.
INFORMATION OFFICE NEWS CLIPPING SERV-
ICE. Topical clippings from the mental retar-
dation field nationwide.
THE SIX-HOUR RETARDED CHILD. Report on
a conference dealing with educational problems
of inner city children. Includes recommenda-
tions for constructive changes in the education
system.
Available only from Superintendent of Docu-
ments, Washington, D.C. 20402 . Price 35 cents.
U.S. GOVERNMENT PRINTING OFFICE: 1972 O-460-240
1970-0-400-704.
The President's Committee on Mental Retardation
Washington, D.C. 20201
MEMBERS
Elliot L. Richardson, Chairman
Secretary of Health, Education, and Welfare
Washington, D.C.
Clair W. Burgener, Vice Chairman
Sacramento, California
Robert A. Aldrich, M.D., Denver, Colorado
Marianna Beach (Mrs. Ross), Hays, Kansas
N. Lorraine Beebe (Mrs.)
Dearborn, Michigan
William H. Borders, Jr., M.D.
Atlanta, Georgia
Frank R. De Luca, Charleroi, Pennsylvania
PRESIDENT'S
COMMITTEE
David Echols, Chicago, Illinois
Donald Lee Fox, Dayton, Ohio
Cecil B. Jacobson, M.D., McLean, Virginia
James N. Juliana, Ocean City, New Jersey
NO
RETARDATION
Lawrence A. Kane, Jr., Cincinnati, Ohio
MENTAL
Aris Mallas, Austin, Texas
Susann R. Ora (Mrs. Peter J.)
Franklin, New Jersey
Lloyd E. Rader, Sr.
Oklahoma City, Oklahoma
Louise R. Ravenel (Mrs. Arthur, Jr.)
Charleston, South Carolina
William B. Robertson, Richmond, Virginia
Kenneth S. Robinson, Nashville, Tennessee
The President's Committee on Mental Retardation
Jeannette Rockefeller (Mrs. Winthrop)
Washington, D.C. 20201
New York, New York
Beth Stephens, Ph.D., Philadelphia, Pennsylvania
Name
David K. Udall, Mesa, Arizona
Margaret B. Ulle (Mrs. Wilbur P.)
Baltimore, Maryland
Address
EX-OFFICIO MEMBERS
City
James D. Hodgson, Secretary of Labor
Phillip V. Sanchez
Director, Office of Economic Opportunity
State
Zip Code
EXECUTIVE DIRECTOR
Joseph H. Douglass, Ph.D.
PRESIDENT'S COMMITTEE ON MENTAL RETARDATION
WASHINGTON, D.C. 20201
POSTAGE AND FEES PAID
OFFICIAL BUSINESS
U.S. DEPARTMENT OF H.E.W.
U.S.MAIL
LIBRARY
FORD
DHEW Publication No. (OS) 72-21
ISLANDS EXCELLENCE
mr 72
Report of the President's Committee on Mental Retardation
PRESIDENT'S COMMITTEE
THE
States MENTAL NO
DER i want to come home
pits
to do thank Mou it infortunate
r stay E wits my you
mother, victimalization living in and those why meaning did they
PRESIDENT'S COMMITTEE
NO
THEM
RETARDATION
pcmr
like they
ese I dignity unablethat and to speak there
The President
The White House
Washington, D. C.
daught I was
2 ardemand tions prevalen a re
My dear Mr. President:
que eved blonde que eyed blonde Measl
It is my pleasure to transmit to you the sixth annual report of
the President's Committee on Mental Retardation. In doing so,
can nd I as 1:
I pay tribute to the leadership of Elliot L. Richardson as
no powers help, THE know what ther and now to do. they My da:] al ar
tarded. the well as
Chairman during the past two years.
end of this century:
and School for the all
there are reta
e is re, majority It heavy, profound is 1,279, of Infancy large and with state the the move mental nursing into progr Ins
The President's Committee on Mental Retardation, Washington, D.C. 20201
Two major national goals, outlined by you in meeting with the
ent Ievels We would like
Committee, form the theme of this report:
:e of a need of nursing service to set up ai
o To reduce by half the occurrence of mental
ment Is in for a sound basic In thi
retardation in the United States before the
o To enable one-third of the more than 200,000
retarded persons in public institutions to
return to useful lives in the community.
School of that. not District talk, Penny, she wc! WI
Smited
ion. Ince
The following report, MR 72, Islands of Excellence, presents a
number of national, state, regional, and local programs that
does the day schools w}
frc
typify the positive approach to prevention and alleviation of
mental retardation.
a Cleft Palate,
They are not necessarily the best available--although some are--
special kindly send care My me and treining my all wife to be States Provident I the disting of America. of She
born with
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 develop-
a
ment, biomedical technology, and a respect for human dignity.
One vehicle that promises to expand these benefits is the growing
developmentyndrose Down' and he
R I am like to Sir, place mentaly year a complaint old retarded boy al
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.
and
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.
diagnosis I know you is are aware of the frustration the a
We appreciate your leadership in these pressing problems, and
look forward to your support and commitment toward continued
always relevant already aware of. Cause of the confirm
the parent is made and a trained professional parent is only experiences able to when no what real
progress.
tive steps to help. but one feels at the onset that condition knowing may is probably indicate not posi
Faithfully yours,
runn
parents as to lubat are
would help inform us
verintendent. a
regarding mental the
Caspar W. Weinberger
Chairman
and non-physicians
zur een do at home to help
Don, he is six hear
MENTAL RETARDATION
Contents
BY CAUSE
Psychological
TOWARD A LIFE OF QUALITY
Page
Education for Parenthood
7
Biomedical
The Mother Is Just a Child
8
From Chromosomes to Family Care
11
25%
Nurse-Midwives Show the Way
15
Home Is Where the Teaching Is
18
75%
EASING THE BURDEN
Socio-
Environmental
Retarded People Have Rights, Too
22
& Unknown
TH
The Multi-handicapped Child
26
increasing emphasis on State, re-
dation because their minds were stimulated
31
gional and local responsibility in planning,
early enough to provide them with a firm base
Texas Removes the Label
funding and provision of services makes it im-
for learning (PP. 7, 18). Others will be born
INTO THE COMMUNITY
perative for those in the field to be informed
mentally and physically sound because of pre-
of what is NOW being done well for a few,
ventive measures taken during their mother's
CLASSIFICATION OF THE
The Open Institution
37
and should be available to all.
pregnancy and their infancy (pp. 8, 11, 15).
MENTALLY RETARDED
POPULATION
There Are Choices
42
Included in this report are programs that
The efforts toward prevention described in
Moderate (6%)
Making It on Their Own
46
are representative models in prevention and
these pages, however, are not sufficient. For the
Severe (3.5%)
treatment of mental retardation. There are
most part, we fail to communicate, to finance
Profound (1.5%)
Building a Model for the Nation
47
many others equally deserving of recognition.
and to apply the biomedical technology and
The main point, however, is that services of
the information on human development we
PCMR'S ACTIVITIES
49
such high quality are reaching only a small
now have. Too many universities, hospitals,
RECOMMENDATIONS
53
percentage of the population.
classrooms and social agencies are teaching and
TODAY we have the biomedical technol-
practicing long outmoded theories.
ogy and the knowledge of human development
TODAY we know how to ease the burden
to begin to approach the President's goal of re-
of mental retardation for those who are af-
(89%)
The President's Committee on Mental Retardation
ducing by half the occurrence of both organic
fected.
Mild
Washington, D.C. 20201
and functional retardation.
There is substantial evidence from the re-
Thousands of children may escape becom-
port on treatment of severely and multi-handi-
DEW Publication No. (OS) 73-7
ing statistics in future reports on mental retar-
capped children (p. 26) that there are very
1
few-if any-"hopeless cases." Helping them
the "learning years" both earlier and later than
with what is actually taking place in many hos-
ready happening out in the field-or could be
takes adequate staffing by trained professionals
the rigid "school years," with no time limits,
pitals, schools, institutions, and group homes.
happening if they were aware of the possibili-
and paraprofessionals. And the desire to help
no rejections, no categorizations, and no labels.
Despite the fact, for instance, that educa-
ties.
them. We no longer have the excuse of not
Concentration on the learning process it-
tion in the classroom is moving away from the
In the medical field, obstetricians and pe-
knowing how.
self, with an emerging change in definition of
categorical approach, very few regular class-
diatricians, to name just two disciplines, are
The responsibility does not end with diag-
learning disabilities that encompasses all learn-
room teachers are given training in teaching
nosis and evaluation. It begins there. Inestima-
ing problems, with varying degrees of compet-
the handicapped children coming into inte-
ble suffering, human waste and public cost
grated classrooms.
"We know the priorities.
ence considered.
could be saved by early evaluation, diagnosis
and treatment, followed by community services
Restructuring of medical training and prac-
Although there are exemplary cases of
We need the resources."
for each child who is potentially handicapped
tice, with interdisciplinary emphasis, and
cross-pollinization in higher education between
teamwork of many professionals and ancillary
the department of human development and
learning more on the front lines than in medi-
(PP. 11, 15, 22, 31).
Given the right services at the right time,
personnel in treating the whole person within
regular or special education, many universities
cal schools how their responsibilities interrelate
his environment.
still lack the integrated approach. In an at-
and overlap. And many of the more progres-
most such children could become productive
tempt to compensate for this lack, some ele-
Growing recognition of the rights of re-
sive medical centers are joining the social
adults, leading lives of dignity.
mentary schools are now reeducating their
worker and public health nurse with the medi-
Yet a survey of State education agencies
tarded individuals, as evidenced by the myriad
teachers in developmental concepts, through
cal team.
completed in 1971 by the National Association
court cases regarding their civil rights.
in-service training.
In residential care, also, the gaps between
for Retarded Children found that not more
Recognition that consumer action can often
"We know the priorities," said the head
theory and reality are becoming apparent.
than 60 percent of retarded children are being
achieve results before court action becomes nec-
of a large State university's education depart-
A young psychologist in a progressive
served in any State. One State is currently
essary.
ment. "We need the resources to fit them to
State school bemoans the fact that the training
meeting the educational needs of only 15 per-
the priorities. Meanwhile, we have to answer
cent of retarded school-age children.
Moves toward community agencies sharing
he received in higher education was far behind
TODAY we know how to meet the Presi-
the responsibility to provide more normal liv-
the needs of those on our doorstep."
what was being done in the innovative institu-
ing conditions for retarded children and adults,
Another problem in education involves de-
tion.
dent's goal of successfully returning to the
community at least one-third of the more than
with residential institutions providing back-up
cision-makers in State departments of educa-
A staff member of another State school,
services, if needed.
tion. There is an emerging development of in-
bitter with the State-controlled system, explains
200,000 retarded children and adults now in
service training programs for the professionals
public institutions.
These trends can be accelerated only if
that the residents are leaving the baked fish on
already employed in these departments, to
their plates because they don't like it. "They
Programs in Connecticut (p. 37), Ne-
professional training is brought up to date
bring them up to date with what is often al-
prefer fish sticks, but every ounce of food
braska (p. 42), Wisconsin (p. 43), Pennsyl-
Arthur Tress
served is planned in headquarters in the State
vania (PP. 46, 47) are showing the way to
capital. We've been trying to get fish sticks
normal living for the retarded. Participants
for six months now."
overwhelmingly prefer them to the inhuman
The newer generation drawn to service in
warehouses that are so deplorably prevalent.
residential care complains of outmoded rules
And the net cost of normal living to the tax-
and regulations imposed by out-of-date admin-
payer can be less.
istrators. "Do you know why the girls want to
Most of the examples included in this re-
work in the laundry?" asks one such young
port are not only models worthy of duplication
man. "It's because that's the only place they
(and capable of being duplicated), but are also
get to see the boys. They don't even eat to-
reflections of major national trends, harbingers
gether. It's inhuman!"
of the future that all may someday enjoy.
Direction in the past came from higher
Among those broad trends:
echelons-the Government, the universities,
An increasing awareness of the fact that
State school boards, administrators. Today, it is
$1.00 spent for prevention is worth $1,000
often consumers and newcomers to the field
spent for warehousing or wasted lives.
who are leading the way, pressuring for better
Growing appreciation of the need for par-
services, more relevant education, integrated
health care, and respect for individual rights.
ent education and enrichment programs in
If they seem impatient, it is because they
early childhood based on human development
know that the world can be made a better
concepts.
place for the retarded, and they want to make
New approaches to education, extending
this happen, not "someday" but NOW.
2
3
PRESIDENT'S GOAL: RETURNING RESIDENTS
NEW PATHS OPEN TO ACHIEVE PRESIDENT'S GOAL:
TO COMMUNITIES
RETURNING RESIDENTS TO COMMUNITIES
THE PROBLEM
1950's
Home
Institutions
?
186,700 Persons
Residing in
202 State
Foster
Institutions
Home
in 1970
15,000
14,700
State
Group
Wage
NET RETURN (-300)
1970's
Home
Residential
Admissions
Releases
Homes
Earner
Facility
THE GOAL
Community
Residential
Return One-Third
Facility
of 186,700 = 62,000
to Community
ACTION NEEDED
1. Reduce intake - by offering alternative
3. Increase community placement by
types of placement
developing qualified community facilities
2. Increase capabilities & independence of
and homes
residents - through highly skilled care
4. Promote public acceptance as neighbors
and training
and employees
Education for Parenthood
Where do you start to prevent mental re-
tardation?
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 re-
tarded because they have been deprived of
basic needs during early childhood develop-
ment.
SUG
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 na-
tional voluntary organizations serving youth.
The program attempts to increase prospec-
tive parents' knowledge of child growth and
figures. This is the highest percentage increas
development; of the social, emotional and
of any age group. The next highest percentage
physical needs of children; and the role of par-
increase over 1968 figures is in the 15-19 year
ents in successful child rearing.
old group, who gave birth to 629,000 babies it
The Education Development Center of
1971, a 6.3 percent increase.
Cambridge, Mass., was awarded a grant to de-
The deprivation that so often leads to
velop a curriculum for parenthood education.
functional retardation begins just after birth
The curriculum combines both classroom in-
Pre-parenthood education may be one remedy
struction in child development and practical
that can be applied before it's too late to make
experience in working with young children at
up the deficit.
day care centers, Head Start programs and kin-
For further information, write:
dergartens.
National statistics point up the need for
Education for Parenthood
such education.
Office of Education
According to the Metropolitan Life Insur-
U.S. Department of
ance Company, approximately 12,000 girls
Health, Education, and Welfare
under age 15 gave birth in the United States in
400 Maryland Avenue, S.W.
1971-a 23.6 percent increase over the 1968
Washington, D.C. 20202
7
"The cycle of poverty, ignorance,
If typical, she is not interested in attend-
maternal malnutrition and low
ing "birth control clinics" following the birth
of her child. So Grady has established a teen-
birthweight infants must be broken.
age "interconceptual care" clinic, which pro-
The Mother Is Just a Child
If we could make sure that infants,
vides peer group meetings, a case worker to
aid with problems, routine contact with school
children and pregnant mothers re-
personnel, and health services, as well as birth
ceive adequate nutrition, we could
control and health information. Meetings are
relatively well attended.
The frightened girl waiting to see an ob-
stetrical patients at medical centers serving
stetrician at Grady Memorial Hospital in At-
those who cannot afford private care through-
interrupt this cycle and remodel
Total health care-not just during preg-
lantá is just 16. She is jobless, unmarried, mal-
our future."
nancy-is available to her and her baby.
out the country. At Grady, she is Black; her
She is more fortunate than her cousin,
nourished, and pregnant with her first child.
color changes in Appalachia, the Southwest
whose day-laborer husband does not qualify
She has never used any form of contraception.
and other parts of the country, but not her life-
-Charles U. Lowe, Scientific Director
for welfare, but whose salary cannot begin to
The probability is high that she will de-
style nor the outcome of her pregnancies.
National Institute of Child Health
cover health insurance or good health care.
and Human Development, NIH.
They, like millions in the low-middle income
brackets, are too poor for private care, too rich
But the pregnant adolescent has serious extra
for Medicaid, and too young for Medicare.
nutritional needs for the child developing
within her.
For further information, write:
Studies on the nutritional status and food
habits of adolescents, pregnant and non-preg-
Maternal and Infant Care Project
nant, frequently indicate inadequate and bi-
Parklawn Building
zarre diets, with especially low intake of iron,
Fishers Lane
calcium, vitamins A and C.
Rockville, Maryland 20852
Poverty compounds the adolescent dietary
problems. Adolescent pregnancy raises the
Maternal and Infant Care Project
problem to national significance.
Grady Memorial Hospital
Of all women who deliver at Grady, 98
Atlanta, Georgia 30303
percent request-and receive-information on
CHILDREN NEUROLOGICALLY ABNORMAL AT ONE YEAR
contraception for the future.
BY AGE OF MOTHER (WHITE)
Rate
Perhaps as a consequence, the number of
40
multiple pregnancies is sharply declining. This
is true at Grady and nationwide. However,
those at risk for producing handicapped chil-
dren, and least prepared for motherhood-16
30
year old, jobless, unwed, malnourished girls—
liver prematurely, and that her baby will have
The magnitude of the problem of adoles-
are increasing their reproductivity.
a mental, physical, and/or emotional handicap.
cent pregnancy continues to increase. The high-
The 16-year-old girl in Atlanta will re-
She is the prototype of the obstetrical pa-
est percentage increase in live births by age of
ceive expert medical attention from the Grady
20
tient most commonly seen at Grady, which
mother, comparing 1968 figures with 1971, ap-
Maternal and Infant Care Project, including
serves the indigent population of Fulton and
peared in the 12 to 19 age group.
screening for rubella, sickle cell anemia, vene-
DeKalb Counties. The two counties include
Teenage mothers-under 17-produce a
real disease, and other infections. Available to
metropolitan Atlanta. A large percentage of
disproportionate number of low birthweight
her if she needs them will be such services as
10
the residents of Fulton and DeKalb have re-
(under 51/2 lbs) babies. Low birthweight car-
psychiatry, medical specialties dealing with ma-
cently moved in from rural areas.
ries an increased risk of mental retardation and
ternal and fetal care, nutritional education and
Over 50 percent of Grady's obstetrical pa-
is the most important single factor in infant
social services, including family planning. She
tients are under 21, refrecting the consistent,
mortality.
will also have access to consultation and re-
0
10-15
16-17
18-19
20-24
25-29
30-34
35-39
40+
nationwide trend toward teen-age mothers.
The adolescent's own growth requires ade-
sources of Emory University Medical Center,
Mother's Age at Birth
This 16-year-old mother-to-be typifies ob-
quate amounts of calories, protein and calcium.
with which Grady is affiliated.
Source: Collaborative Perinatal Study of National Inst. of
Neurological Diseases and Stroke
8
9
From Chromosomes to Family Care
"The goal is not survival; it is intact survival"
Modern technology is responsible for saving the lives of many premature and high-risk
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
The flow and interchange of staff among
with the Department of Obstetrics and Gyne-
duty is an urgent necessity.
the services of the Los Angeles County-Uni-
cology, their Family Planning Division, and
versity of Southern California's Medical Center
the entire Pediatrics Department, especially the
Deeply concerned by the facts, one physician states the problem in these terms: "The
make it difficult to know where one service
intensive care unit for newborns. And the
goal is not survival, it is intact survival."
stops and another starts.
clinic for developmental problems of infants
That's the point.
and children is an integral part of the entire
The continuity of specialized care that the
network of services.
clients receive cannot be captured in any orga-
Social workers and public health nurses
nizational chart because of the close interaction
MAJOR CHARACTERISTICS OF PATIENTS SERVED AT
are often the bonding agents for linking the
GRADY MEMORIAL HOSPITAL INTERCONCEPTUAL
among the staff, and the coordination of serv-
medical, social and educational services.
CARE CLINIC
ices.
Since the Genetic Division is most imme-
Marital Status
Total 569
The Genetic Center's team works closely
diately concerned with prevention of mental re-
Single
486
Married
76
Separated
5
No Answer
12
Used Contraceptives
Total 569
No
502
Yes
59
No Answer
8
Adoption
Total 569
No
559
Yes
3
No Answer
7
Source: Progress Report, Grady Memorial Hospital Maternal
and Infant Care Project, 1971-72
10
tardation and other handicaps, it invites closer
cases the carrier state for genetic disorders such
The Medical Center of USC has become
inspection.
as Tay-Sachs disease can now be determined.
acutely aware that there are few, if any, sin-
"A genetic division is not just a labora-
Even though detection of an abnormal
gle-problem families, and each problem has
tory." explains its director. "We have a multi-
fetus and termination of pregnancy can prevent
several facets. Consequently, the integrated and
disciplinary team of physicians, including
the birth of a large number of children with
multidisciplinary teams are attempting to pro-
genetics post-graduate fellows, laboratory
mental retardation and other handicaps, the
vide the many related services required for
technicians, public health nurses, and a social
risk usually comes to light only after the prior
effective family treatment, and vital to the pre-
worker.
delivery of an affected child. The exception is
vention of future problems.
"Any genetic program involved in amni-
the woman in the late thirties or in the forties,
To use a hypothetical example, a two-
ocentesis for prenatal diagnosis requires a full
whose age alone raises the risk.
year-old Mexican-American boy is brought to
team to do the back-up work necessary in ge-
Of the pregnant women seen by the physi-
the pediatric emergency clinic with severe bron-
netic evaluation and counseling," she adds.
cians of the Genetic Division since 1970, about
chitis. After treatment for the acute problem,
(Amniocentesis is a procedure in which a small
two-thirds had a previously affected child, such
the medical staff completely evaluates him and
amount of amniotic fluid surrounding the fetus
as one with Down's syndrome (mongolism) or
confirms their observation that the child has
is removed. Examination of the cultured am-
a biochemical abnormality. About one-third of
Down's syndrome and is seriously delayed in
niotic cells may indicate whether the fetus has
the women were over 35 years of age.
development, in addition to being undernour-
a chromosomal or biochemical defect detecta-
The majority of the amniocentesis refer-
ished.
ble by present laboratory tests.)
An interview with the mother discloses
In the past two years, about one out of
the fact that she is 37 years old, about three
every 20 pregnant women seen by the Genetic
Center's staff were found to be carrying a fetus
"No medical practitioner can be
months pregnant and not under a doctor's care.
Another child in the family, a five-year-old
with chromosomal or biochemical abnormali-
excused now for not knowing the
girl, is found to be relatively healthy but some-
ties, and the couple in each case decided to ter-
nature of genetic diseases, the spe-
what below normal mental development for
minate the pregnancies.
her age.
Couples are first evaluated by physicians
cial diagnostic techniques applica-
Assisted by a pediatric social worker, the
of the Genetic Division to determine the ge-
ble to them, the identification of
mother receives a thorough obstetrical exami-
netic risk involved in the pregnancy. If they
nation. She then becomes a patient in the
choose to have amniocentesis, a thoroughly
carriers, the means of reducing the
obstetrical service of the hospital and will be
trained obstetrician performs the procedure.
deleterious effects in many of them,
delivered there.
It takes two to three weeks for the am-
Because of the younger child's chromo-
niotic cells to grow in culture and be analyzed
and means by which their inci-
somal abnormality expressed in Down's syn-
for evidence of the fetus' normal or abnormal
dence in future generations can be
drome, and the mother's age, the risk that
chromosomes. A fine art now, the technique is
Marcia Kay Keegan
constantly being refined to improve the reading
reduced."
of the microscopic genetic message captured on
the slide.
-George W. Beadle, Ph.D.
In the weeks awaiting the outcome of the
Nobel Laureate in Genetics
Of 3,500 patients seen in a two-week period last year at the Emergency Pediatric Clinic
tests the couple very much needs the psycho-
Former President, U. of Chicago
of Los Angeles County-U.S.C. Medical Center, 70 percent were Mexican-American, and
logical support of the professional team.
40 percent of these spoke no English.
Although by far the largest number of the
"Have you ever faced a mother with a desperately ill baby in her arms at 2 o'clock in
patients are found to be carrying fetuses show-
rals to USC's Genetic Center are from private
the morning, and found that she speaks no English and there is no Spanish-speaking
ing no evidence of genetic disorders, anxiety is
physicians. A large number of the Center's pa-
interpreter available?" asks a pediatrician at the clinic.
high among all until results are known.
tients had previously used the service.
For those found to be carrying an abnor-
A very small proportion of requests for
He was echoing the frustration felt by a number of people attempting to serve the
mal fetus, there is further team counseling,
amniocentesis are from people in the lower so-
Spanish-speaking population which has increased dramatically in the last few years,
as the prospective parents decide if the preg-
cio-economic groups, even though it is reasona-
especially in the Atlantic and Pacific coastal cities. There are frequent complaints that
nancy is to be terminated or not.
ble to assume that these groups include a large
budgets in medical, social and educational services often ignore the pressing need for
The risks of having a fetus affected by
number of high-risk mothers and even though
translators.
certain genetic disorders in future pregnancies
no patient is ever turned away for inability to
may be known before conception. In some
pay.
12
13
she is carrying another affected child is in-
For further information, write:
creased. So the pediatric social worker, who is
Genetics Division
also part of the Genetic Division's team, dis-
cusses the situation with the mother, who is
Los Angeles County-U.S.C. Medical Center
1200 North State Street
then evaluated and counseled by a physician in
the Genetics Division.
Los Angeles, California 90033
An amniocentesis to detect fetal chromo-
somal abnormalities is offered, and the parents
California's plan for the development of
decide that they wish this procedure. While
a regional service system for the retarded
awaiting the results of the growth of the am-
throughout the State is now operational.
niotic cell culture, the public health nurse at-
The State is setting up a network of com-
tached to the genetic team counsels the parents
prehensive medical and educational facilities
and tries to allay anxiety. She is available at all
designed to supply a complete range of services
for an estimated 200,000 retarded individuals.
times to give very personalized service.
Meanwhile, the social worker locates a
Regional centers offer a total management
Headstart class in the community that has an
plan, including diagnosis and continued coun-
opening-not an easy task-for the five-year-
seling. They are designed to guide parents to
old girl whose development is below normal.
educational, training, and recreational pro-
The hope is that this program may give her
grams, or to find foster homes or out-of-home
the added mental and social stimulation
placement for children whose parents cannot
care for them.
needed to prepare her for a regular first grade
class in public school. If not, she may require
"If we had more funds for early child-
special education.
hood centers and short-term care," says a Cali-
fornia social worker, "there would be much
For the two-year-old with Down's syn-
less need for full-time residential facilities."
drome, a medical and nutritional team goes to
work on his physical needs, while the public
With adequate financing to assure equita-.
health nurse counsels the family on his care
ble distribution of regional center services, the
and feeding. Soon the social worker will begin
California system promises to be a plan for
other States to follow.
the search for a pre-school program for handi-
capped children in the community. The child
For further information, write:
will remain under the guidance of the Medical
Center's team as long as he needs such help.
Bureau of Mental Retardation
While the search for community services
State Department of Public Health
for the children of this family has been going
Berkeley, California 94764
on, the laboratory technicians have analyzed
the amniotic cell culture and found no abnor-
malities.
This mother's pregnancy will be followed
Nurse-Midwives Show the Way
closely by the obstetrical team, and should con-
tinue to term without problems. If any develop
for her or the baby, highly specialized medical
In 1969 the infant mortality rate in rural
Center, the State Board of Health, local physi
help is available in the Medical Center.
Holmes County, Mississippi was 39.1 per thou-
cians and other community health profession
She will be provided family planning serv-
sand. Less than three years later, it was down
als, the key addition in that period was the
ices if she wishes, as well as genetic counseling
to approximately 21 per thousand. In that
nurse-midwife of the County Health Improve
if there are future pregnancies.
same area, the neonatal mortality rate in 1969
ment Project (CHIP), which started in '69.
All of these services for the family are
was 23.4 per 1,000 live births. In 1971 it was
The Project started with demonstration
within easy walking distance of one another.
8.5.
programs in education and service in Jackson,
The social worker or public health nurse is
Although such dramatic progress is in part
Mississippi and surrounding area, and a pro-
there to aid in moving from one service to an-
due to teamwork in maternal and infant care
gram in rural service in Holmes County, which
other ease.
among the University of Mississippi Medical
is a mainly low-income-or no income-area
14
15
CHIP is now going into two more rural Delta
9, and 12 months. The nurse-midwife is avail-
and checked before progressing further. Some
then freed to give more time to difficult cases.
counties, with an additional program in Vicks-
able by phone at all times.
of the babies, for example, have been born
Funding for CHIP comes mainly from
burg.
The people in Holmes County generally
with hyperbilirubinemia (jaundice). These chil-
HEW grants and private foundations, with a
The first step was to break down the prej-
are farmers without much money, so CHIP has
dren have been treated immediately, and are
very small amount in State money. "Much of
udice against midwives. The educational pro-
arranged to have the Department of Agricul-
now normal. If untreated, the result could be
my time is spent looking for money," says the
gram at the medical center, however, was
ture's Food Supplement program come into
mental retardation.
project's director.
training not just midwives, but Registered
Holmes. In addition, since the well water sup-
Another benefit from the program comes
Because this successful project in the
ply is often contaminated, the babies under this
from having the Holmes County mother de-
Delta was a product of Mississippi minds at
"We are concerned with the qual-
program get a prepared formula that does not
liver in the hospital. CHIP has Maternal and
work, it is known affectionately as the "Made-
require dilution.
Child Health Service funding for the hospitali-
in-Mississippi Health Care Plan."
ity of life as well as physical well-
One of the criteria for nurse-midwifery
zation if the family is not on Medicaid or any
being."
care is that the pregnant woman be essentially
other Federal aid program. (In other Missis-
For further information, write:
normal, with a prospect of an uncomplicated
sippi counties, if the family can't afford hospi-
Public Information Office
pregnancy. The high-risk patient is cared for
tal costs for delivery, the baby is often born at
Nurses as professional midwives under the su-
by a physician. From the beginning, and
home.)
University of Mississippi Medical Center
2500 N. State Street
pervision of physicians. When this point was
through each stage of care, if any problem is
Problems the nurse-midwife detects in the
illustrated, progress was smoother. Since the
newborn are referred to local physicians or spe-
Jackson, Mississippi 39216
detected in mother or child, the nurse-midwife
project started, 25 have been graduated from
immediately consults with an obstetrician or
cialists available at the University of
the 12-month training program at the Univer-
pediatrician.
Mississippi Medical Center, a service not
sity of Mississippi and are now practicing in
In addition to the routine tests and immu-
available in home deliveries. The personalized,
the State. Forty nurse-midwives are currently
nizations for the child, the nurse-midwives
first-rate medical care the nurse-midwife can
working in Mississippi.
check the hemoglobin level, nutritional status,
give is proving valuable not only for mothers
They are now gearing to train 20 nurse-
and developmental level.
and children but also for physicians who are
midwife students twice a year, for a total of 40
"We are concerned with the quality of
annually. Graduates of the program will be
life, as well as physical well-being," says the
placed in six southeastern states: Florida, Geor-
nurse in charge of the program. "So we see
gia, South Carolina, Alabama, Mississippi and
that the infants get early stimulation, and we
Louisiana.
Basically, the nurse-midwives are being
trained in an organized approach to total ma-
"In some respects, the ghetto child
ternal and child care. They are prepared to
is better off than the rural young-
handle normal prenatal care, delivery of the
baby in the hospital (hospital delivery is re-
ster, for be at least gets some med-
quired), and follow-up of the mother and baby
ical care, while the rural child may
at least through the first year.
have none at all."
Working with community health aides
trained at the University of Mississippi, the
nurse-midwives follow the mother and new-
-Jay H. Arena, M.D.
Past President, American
born child intensively at home the first month
Academy of Pediatrics
after delivery.
Instead of the usual 6-week checkup for
new mothers, the CHIP mother has her
counsel the mother on child-rearing practices as
checkup at the end of four weeks at the Uni-
well as nutrition and health education."
versity Medical Center or health department
They use developmental tests on children,
clinic. During this time, the nurse-midwife
and use them as a teaching tool for the
counsels her on family planning, and starts her
mother, also.
on whatever family planning method she has
If there is a developmental lag, there is an
chosen.
immediate referral for remedial measures. And
The baby gets a 6-week examination by
in this total care project, a number of cases of
the nurse-midwife, and is seen at home at 3, 6,
potential mental retardation have been found
16
17
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 re-
tarded children.
Home Is Where the Teaching Is
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
Home Start is so commonplace, so full of
mulating from human development studies
handle an even wider variety of experiences.
old-fashioned virtues-parental care, fam-
throughout the world that a child's mind and
Then by combining, or re-combining what
solidarity, order in the home-that it seems
emotions develop in stages, in much the same
he has learned before, he can build on that
Imost pretentious to call it a program.
way as his body develops. There is a time
base to proceed to new methods of learning,
Home Start is a mother in Cleveland,
schedule for each building block of growth,
coping, reasoning.
hio talking with her young child as she peels
varying somewhat with each individual child.
The concept, adapted by Home Start, is
otatoes for dinner.
But if a block is missing, the whole structure is
not narrowly defined as "education," but is
A grandmother in Gloucester, Massachu-
apt to collapse.
concerned with the development of the child as
who takes care of her working daughter's
The "growth sciences" owe their origin to
a whole person, with the parents as the natural
re-school children, marching around the living
teachers, the home as the natural setting. Nei-
with them, beating pans with wooden
ther is its goal emergency treatment for chil-
boons.
dren deprived of essential building blocks in
A father in Logan, Utah reading a story
their development; it is prevention of the men-
the children after he tucks them in bed.
tal and emotional handicaps suffered when the
A Parkersburg, West Virginia family sit-
cornerstone of the foundation is missing.
down to dinner together every night at
(The centers-based developmental day-
x-thirty.
care programs have a similar goal, but are de-
That's Home Start.
signed mainly for young children whose moth-
There's something old, something new,
ers must work or go on welfare.)
to focus
a
mething borrowed and something that rings
The valiant "treatment" efforts of tutoring
lives by
-
true about the whole concept.
programs and other compensatory projects to
assisting
The something old, of course, is the prem-
help disadvantaged children "catch up" to the
most imp
that child-rearing belongs in the home. And
competence of more advantaged children, have
dren.
home with some order in it, with healthy
opened the nation's eyes to the importance of
It is
eaten together, and a reasonable bed-
early childhood, and the desperate need for
roughly b
And conversation. Not just commands is-
help of many of our children.
of the 1
over the din of the TV, but give and take
But such programs are not achieving the
younger a
onversation. Questions and answers.
results they had hoped for, possibly because
The
The "new" is twofold: (1) the relatively
they may have come too late in the natural
as of the
knowledge gained from the "growth sci-
schedule of child development.
Glouceste
ces" that such deceptively simple child-rear-
Competence is a cumulative thing.
burg, W.
practices are essential to the healthy men-
These compensatory programs, and the
Harrogate
physical and emotional development of the
much-maligned schools, may be building on a
ance, Ariz
ild, and (2) the realization that such matters
house of sand, developmentally speaking.
Tex.; D
somehow gotten crowded out of modern
Home Start could turn out to be the sup-
Logan, U
omes-poor and affluent as well-and can no
plier of the missing cornerstone, not supplant-
Laredo, 1
nger be taken for granted. They need to be
ing the other programs, but laying the founda-
San Dieg
ught. Home Start is beginning with the dis-
tions on which they can later build.
Start pro
dvantaged.
Home Start was born in the Office of
gions.
The something borrowed-and applied in
Child Development of HEW, in March 1972.
Hom
ome Start-is the undeniable evidence accu-
Stated purpose of the home-based program is
program,
18
19
Morton R. Engelberg
range and economic categories as those served
time for children, and certain places for their
by the center-based Head Start.
toys and clothes.
Some communities, such as Binghamton,
Parents in the programs frequently get to-
N.Y., already had projects similar to Home
gether to discuss mutual problems, and some-
Start, so Home Start joined forces with the ex-
times to hear talks about child-rearing. Some
EASING THE B
isting project.
make toys and games for the children.
Each city involved has a continuing in-
Mothers are made aware that the most
service staff training plan for the home visi-
common household objects can be learning
tors. They are generally para-professional
tools. They also receive booklets with sugges-
women from the neighborhood in which they
tions for activities appropriate to certain ages,
will be working. Most are mothers familiar
educational games, and simple tests of learning
with the community and its resources.
skills. "I never thought of myself as a teacher
Usually traveling in teams, they average
before," one mother commented proudly. "I
about 12 families apiece whom they visit at
thought only the schools did that."
There are games to teach conceptual
"I never thought of myself as a
thinking,-organizing and categorizing things,
done with such readily available items as laun-
teacher before."
dry, groceries, kitchen utensils.
Parents are encouraged to praise good be-
havior, to explain cause and effect, to offer
least once a week, bringing simple educational
choices in order to foster independent thinking,
materials and child-rearing ideas with them.
and to be consistent in discipline whenever
Often they find their families by simply
possible.
walking through lower-income neighborhoods
It's too early to predict long range effects,
and knocking on doors. They explain the pro-
but at short range, it looks good. Many com-
gram, invite the family to participate, and if
ments testify to the program's success so far:
the family accepts, they are in. The home visi-
"I used to take my problems to a beer joint.
tors become family friends. Each city's program
Home Start brought me out of myself, to get a
serves a minimum of 80 families.
good look at what I could do for my kids."
The mothers seem uniformly enthusiastic
One shy, young mother offered: "Without
after the initial apprehension or distrust wears
Home Start I would crawl back into my hole."
off. For the first time, many feel, there is an
ally to help them in their difficult and confus-
For further information, write:
ing role as mothers. One of the purposes is to
help them enjoy raising their children.
Director, Home Start
Office of Child Development
"I used to get rather short-tempered with
P. O. Box 1182
my children," said one Home Start mother,
Washington, D. C. 20013
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 fami-
ly'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, sug-
gesting set times for meals, a consistent bed-
20
Petey is Black, 6 years old. He lives in a crowded
Retarded People Have Rights, Too
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
The legal rights of the mentally retarded have been long ignored. Parents and agencies have
them, and he was to arrange them so that the engine
had to beg for services and funding, and even then, succeeded only when their patience outlasted
went in front, freight cars in the middle, caboose at the
that of the dispenser of the largesser
end. How can you tell where the caboose belongs if you
Suddenly, the scene has changed. Cases are being brought to court, on behalf of the mentally
have never seen a train? He failed the test,
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
Paul Conklin
program to suit her needs. She could go to the closest
Roberto arrived in this country three months ago from
institution, over 300 miles away, but her parents want her
Mexico. He is 8. The family speaks no English. The per-
at home. There are no community services for her on the
son who administered his IQ tests spoke no Spanish.
reservation.
None of the team who devised the test had ever been to
Mexico. He failed the test.
Alice is 7. She can't talk, and has been called "un-
Clarissa is the 7-year-old child of a white, destitute
testable" with the available testing materials.
family living in an isolated, mountain shack in Appa-
lachia. Clarissa didn't know that she was supposed to
match a medieval suit of armor with a lance. She failed
the test.
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
California, Massachusetts, and Louisiana have been sued for labeling members of
suit-Mills vs. Board of Education of the District of Columbia-a court decision has
minority groups and others as mentally retarded on the basis of tests geared to a white,
affirmed this right.
middle-class background.
23
22
"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 pro-
foundly retarded ward is often used as a means of
punishment. There is no written policy protecting work-
ing residents. Many have been at their present job assign-
ments for 20 to 30 years and some for over 40 years. They
work without supervision, often under dangerous con-
ditions, 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
"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 seclu-
sion 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 stock-
ings, rags as well as rope are often used without physi-
cian'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, Geórgia, Illinois, Massachusetts and New York there is court action on
* Source: Testimony before the U.S. Federal District Court
for the Northern District of Alabama, relative to Partlow
right to treatment for mentally retarded in State institutions.
State School-Wyatt vs. Stickney.
24
25
Across the room, the mothers put down
After an intensive evaluation at the Ru-
their coffee cups and-even though three speak
bella Project it was found that Diana has
only Spanish, two speak only English, and Ri-
congenital rubella with the following mani-
chard's mother speaks only Romanian-they
festations: Severe hearing loss, failure to
somehow communicate their mutual pleasure
thrive, chronic brain syndrome with severe
The Multi-handicapped Child
in this feat.
mental retardation, behavior disorder with au-
It is the first time Richard has ever
tistic features, and an impulse disorder. These
laughed.
conditions were compounded by malnutrition
When his mother was pregnant, she had
and anemia. Her "blindness" was profound ap-
The elevator, when it works, creaks its
rubella. Richard seemed to be normal at birth,
athy.
arning
way up the rusted cage to the seventh floor.
but it soon began to be apparent that some-
Our
You are anxiously aware of being within
thing was wrong. He did not respond as a nor-
the walls of New York City's ancient pub-
mal child should. No eye contact, no smiles,
lic hospital, Bellevue.
coos, laughter, nor even much crying. The ten-
red
Your destination is the unique Rubella
tative diagnosis was autism, with possible deaf-
Project's pre-school, an educational labora-
ness.
orange
tory for children with multiple handicaps—
No one knows yet if he is deaf or not.
blue
deafness, blindness, mental retardation, in
Now, four months after entering the pre-
black
varying degrees. Many have all three con-
school program, he is tolerating the earphones
ditions, and more. Recalling other settings
that test his response to sounds. He is making
yellow
featuring similar children, you fight the
firm eye-to-eye contact. And he is making the
urge to run away.
happy, human sound of laughter.
Sharing in the Event of Richard's Laugh-
Minutes later, you are caught up in a
ter is a beautiful, young-looking Puerto Rican
scene bursting with such hope, such vitality,
mother of eight children, among them Diana.
and-the last thing you would expect-humor,
In April of 1972, she had brought Diana,
that you wonder if the Pre-school for Multi-
then 10, in her arms to the Rubella Project.
handicapped Children may not be one of the
For the five years since the mother's arrival in
truly happy spots in "Fun City."
New York she had taken Diana to hospital
Three-year-old Gerardo, thick glasses
after hospital, and clinic after clinic-ten in
slightly askew, hearing aid in place, shrieks
all-seeking a program to help her daughter
with delight as he plunges down a slide into
learn something.
his teacher's arms.
The answers were all the same: Hopeless
Diana
Juanita, who is five, and blind, is guiding
case. Nothing can be done. There are no pro-
her teacher through a multi-sensory maze built
grams for this kind of thing. You can try to
Because her problems were so severe and
by high school shop students, feeling the flow-
get her in an institution.
complex, Diana was hospitalized for ongoing
ers, the woolly things, the rough and the
But her mother insisted on keeping her at
and simultaneous evaluation and treatment.
smooth surfaces.
home. And persisted in her efforts to get help
She was force-fed to counter the malnutrition
A speech teacher is helping a child learn
for her child.
and anemia, and given medicine to control the
to speak by having her blow soap bubbles. One
For ten years Diana had lain on her back,
impulsivity (despite her weakness, she would
floats across the room, and hits blond two-
unable to sit up. The only nourishment she did
throw whatever came within reach, including
year-old Richard on the nose. His teacher lifts
not reject was milk with an egg in it, which
equipment used to film her progress).
her eyebrows and makes a face in mock aston-
she drank from a baby's bottle.
At the same time, an interdisciplinary
ishment. For a second he does nothing. Then
Finally, at a children's evaluation project,
team of doctors, nurses, educators and social
he laughs. A gusty, two-year-old laugh that
Diana was diagnosed as having the one condi-
workers-and her mother-worked together.
turns all adult eyes in the room toward him
tion she did not have-blindness. She was then
In a few weeks Diana was eating ravenously.
with excitement. His teacher hugs him to her,
referred to a program for the blind, which, on
She was sitting up and slowly beginning to ob-
and he begins bouncing up and down in her
finding she was not blind, referred her to the
serve the world around her, amplified by a
arms, still crowing with pleasure at his accom-
Rubella Project because it serves an an evalua-
hearing aid, and sharpened by her growing
plishment.
tion unit for the region's deaf-blind center.
perceptivity.
26
27
Strengthened and supported by the team,
cialists are required. Since this is a medical cen-
her mother was becoming her most effective
ter-based program, there are specialists in all
therapist.
fields available.
Within a few months, Diana was walking
At the same time, in the examining room,
with relative ease. Although still severely re-
a member of the educational team evaluates
tarded, she takes part in the pre-school pro-
the child, eliminating the need for further re-
gram, responds even with humor, and has
ferral procedures and the all too frequent gap
learned many self-help skills.
between medical diagnosis and educational
The point of the story, however, is not so
management.
much Diana's success, but the failure of the
From then on, for a period of several
service system at all levels.
months, the integrated medical, social service
How much of her degeneration over a pe-
and educational management team develops a
riod of ten years was caused by professional
program for the child and his family.
and societal neglect? The team at the Rubella
A child is eligible if he has at least two of
Project believe that with early diagnosis and
the following conditions: auditory impairment,
treatment she may have been far less retarded
both peripheral and central; visual impairment;
than she is-with a chance for significantly
brain dysfunction; mental retardation; physical
more independence than she can ever achieve
impairment and behavior disorder.
now, and at much less cost.
The project is no longer limited to chil-
How different would her life have been if
dren affected by rubella.
she had had a hearing aid at the age of one in-
Staff includes a teacher of the deaf, a
stead of ten?
teacher of the mentally retarded, an assistant
What effect would proper diet from in-
teacher, a social worker, an occupational thera-
fancy have had on brain development and
pist, two health aides and several graduate and
physical skills?
undergraduate students in these fields. These
How different would have been the life of
are in addition to the project's traditional med-
her parents and brothers and sisters if they had
ical personnel, which includes 28 specialties.
not had to wait ten years in hopelessness and
The Rubella Project is a component of the
Deaf children feeding their turtle
helplessness?
Department of Pediatrics, New York Univer-
There are literally thousands like Diana
sity Medical Center-Bellevue Hospital Center.
unknown thousands of similar multi-handi-
In response to growing pressure on the
on the back wards of State institutions all over
Funds come from Federal, State and local gov-
capped children for whom there is no such
States for treatment of the deaf-blind-retarded
the country. If such dramatic improvement can
ernmental agencies and private donations.
thorough pre-school?
child, a handsome, ultra-modern regional resi-
be evidenced in a few months in a severely,
As a laboratory to explore new methods
Like the hospitals and clinics and private
dential facility, Frampton Hall, has recently
multi-handicapped child after ten years of pro-
and technology in treating multi-sensory depri-
physicians from whom Diana's mother sought
opened at the N.Y. Institute for Education of
fessional neglect, how much suffering, human
vation, the pre-school recognizes that diagnosis
help in vain, the vast majority of professionals
the Blind in the Bronx, N.Y. The building was
waste and public cost could be saved by an
cannot be separated from treatment, and treat-
are choosing to run away from the problem, or
paid for by private funds. Program funding
early evaluation, diagnosis and treatment fol-
ment cannot be separated from the home envi-
ignore it.
comes from the Deaf-Blind Centers and Serv-
lowed by community services for each poten-
ronment if there is to be the necessary impact
Hopes rise, justifiably, with that creaky
ices of Bureau of Education for the Handi-
tially handicapped child?
on the lifestyle of the multi-handicapped child.
old elevator to the Rubella Project. There is
capped and the regions served. It is one of ten
So there are home visits and personal in-
treatment there that helps. Then what?
deaf-blind regional centers.
volvement in the home life of the child. At the
During investigations which began a dec-
same time, the parents-more often the mother
For further information, write:
Frampton Hall receives patients from a
ade ago and contributed to progress toward
-learn techniques under direct supervision,
region that covers New York, Pennsylvania,
Rubella Project
prevention of rubella birth defects by vaccina-
and are deeply involved in the treatment.
Delaware, New Jersey, Puerto Rico and the
New York University Medical Center
tion, the Rubella Project expanded its mission
The project becomes "home base" for the
Virgin Islands. The facility provides care for
550 First Avenue
to focus also on early detection and treatment,
family, and the children return at least once a
about 75 children between the ages of 3½ and
New York, New York 10016
21.
family training to handle the problem, and
year for checkups on their educational and so-
placement in appropriate community services.
cial progress as well as medical condition.
Frampton Hall cannot handle severely
When a child is brought in, a physician
Where do they go after the pre-school?
emotionally disturbed children, severely crip-
interviews the parents and gives the child a
There are too few community placement possi-
pled, those with a mental age measurable in
thorough physical, bringing in whatever spe-
bilities for them. And what becomes of those
weeks, or those whose families cannot take
28
29
part in the training or be able to follow
making collages, dancing, marching, and intro-
through.
ducing them to pleasures of childhood that
Applicants have a thorough pediatric
other children learn naturally.
workup at the Bellevue Rubella Project, which
There are plans for a pre-vocational pro-
may take two days to a week. While waiting,
gram in housekeeping and simulated work-
there is an apartment at Frampton Hall for the
shops in the future.
mother and child.
The whole program is designed to prevent
Once admitted, the child has the advan-
institutionalization. Yet, even after their train-
tage of being in what is perhaps the most ad-
ing at Frampton Hall is completed-where
vanced therapeutic milieu of its kind, with
else can they go? For some, the newly created
every architectural and decorative detail de-
National Center for Deaf-Blind Youth and
signed for the instruction, safety and comfort
Adults will provide the answer. But for many
of deaf-blind retarded children. There are no
others there is no place.
more than four children to each bedroom, and
"We all wonder," said a teacher, "what
living quarters are in units close to private,
will happen to them after they leave here.
specially equipped bathrooms.
They will always need a great deal of help.
But Frampton Hall is no protective, pad-
But who will give it to them?"
ded cell. The children are taken out frequently,
not just to walk through the spacious grounds
For further information, write:
of the Institute, but on field trips to shopping
centers, the zoo, public parks and playgrounds,
N.Y. Institute for the Education of the Blind
and wherever else they can find opportunities
999 Pelham Parkway
to sharpen their senses. With few exceptions,
Bronx, New York 10469
the children go home on weekends. If their
home is too far, the staff seeks out some
Center for Services
change for them whenever possible.
for Deaf-Blind Children
Although the highly trained staff is re-
Bureau of Education for the Handicapped
sponsible for training them in basic require-
ROB #3
ments of physical needs, there is also much
7th and D Streets, S.W.
activity in classrooms-baking, doing puzzles,
Washington, D.C. 20202
Texas Removes the Label
If you are interested in EMRs, TMRs,
special help required to the child as well as to
MBIs or other such labels, don't go to Texas.
the teacher.
If you are looking for the usual special educa-
By deemphasizing labeling and isolation
tion classrooms, proudly displayed, you will
in self-contained classrooms, and by focusing
find few in Texas.
on the learning needs of each child rather than
However, if you care about children and
on the handicap, Texas is giving an increasing
their individual, special needs, take a look at
proportion of its handicapped children the op-
Texas.
portunity to move into the mainstream of edu-
Something special is happening to special
cation-and of life.
education there. And what is happening may
Contrary to fears that handicapped chil-
well be a preview of a new era in education in
dren would drown in this mainstream, they are
general. The new concept of comprehensive,
being taught to swim.
personalized education for individual needs is
"They used to bring these kids in here
called Plan A.
and tell me, 'this one's got an I.Q. of 55. This
The primary goal in this child-centered
one's MBI.' I don't want to know what their
plan is to provide each handicapped child in
I.Q. is or what they can't do. All I care about
the state with an education suited to his ability
is what they can do."
to learn. Specialists are available to give the
The speaker was a muscular shop teacher
30
31
in North East San Antonio's Roosevelt High
thick glasses, two or three have hearing aids,
In 1968, for example, less than half of
School. He was standing by, unconcerned, as a
one a brace on her leg, and a few are marching
known handicapped children in Texas we
group of students, most of them handicapped,
to the rhythm of a very distant drum. With
participating in the type of special educati
expertly handled makeshift levers and ramps
them are a teacher assistant and a Spanish-
program they needed. (In one school distri
to load onto a truck the 7 X 9 foot house they
speaking volunteer, who is young and male.
there were 8 known multi-handicapped ch
had built. The scaled-down red and white
Over in a "learning well," two carpeted
dren under 6 years of age. After the Plan
building, a highly professional construction
steps down, a little girl sits with a teacher who
program started, 42 were found.)
job, was to be the Christmas toy collection
is giving her individual instruction. In several
More than 40 counties provided no speci
headquarters for a local radio station.
intimate, quiet rooms, small groups of children
education for their handicapped children.
Across town, at Alamo Heights Junior
are working with teachers who are specialists
Under 6 percent of the school-age popul
School, a resource teacher was working in a
in specific fields, such as speech therapy, or
tion throughout the State were receiving sp
"resource room" with four students who had
emotional disturbance.
cial education services in 1968, while educato
reading problems. Later one would go to math
Around a table in another corner there is
estimated that 10-20 percent needed such ser
class, two to social studies, and the fourth to
a social event-a party. A mother sits a little
ices. Many, receiving little or no help, droppe
shop, where he is learning on lawnmowers,
apart, observing over a cup of coffee. She is a
out of school.
tractors and auto engines, to be an expert me-
member of the parents' group, PIENSA, an in-
A disproportionate number of minori
chanic. The school does a brisk business in
tegral part of the center's program.
children were enrolled in special educatio
lawnmower repair. In the old system, all
Every few minutes, the action changes, to
There were unanswered questions concernir
would have been labeled mentally retarded and
keep pace with the attention span of these
the adequacy of the standards by which th
isolated in a special education self-contained
street, regularly take part in the school's pro-
young children.
were measured.
unit.
The scenes at the San Antonio schools are
gram, and supply an extra dimension of care
In addition to these statistics, there w
The same system of integration was tak-
for the children.
being duplicated in many parts of the State,
the ever-present label, the stigma, the isolatic
ing place with children in classrooms through
Integrated regular classrooms and resource
now that Plan A is expanding to 187 school
that perpetuates and accentuates the handica
the school. Those with special needs were re-
rooms buzz with teacher-child dialogues:
systems. It is expected to cover the state by
And the dehumanization of the category-
ceiving personalized help, then returning to
"Tell me why you chose that picture, Rob-
1976, serving the needs of every handicapped
EMR, a TMR or some other faceless design
art, music, physical education, shop, or regular
child in Texas.
tion.
ert." Probing into the learning process.
classrooms.
"Let's break up this ball of clay. Now,
As it grows, the effect it is having in regu-
"We still have to match the child care-
with all these pieces, do we have more than we
lar primary and secondary education, as well as
fully with the regular teacher, the principal ex-
had before? Or less? Or the same amount?"
teacher training, is slowly becoming noticeable,
plained. "Those who may discourage or squash
Developing concepts of conservation of matter.
though not fast enough to keep up with Plan
the child's initiative don't get these children."
"Would you like to make some figures
A's pace.
Until higher education catches up with the
with the clay?" Creativity.
It is the early childhood programs, more
changes in elementary and secondary educa-
Piaget all the way.
than any other educational advancements, how-
tion, a great deal of the success of a
The newest educational techniques are
ever, that are moving Texas' special education
comprehensive system depends on the under-
most obvious, however, in the early childhood
program out of the column marked perpetua-
standing of the principal and administrative
tion of mental retardation and into the column
education programs. At Edgewood's Cardenas
staff, and the individual teacher's attitude and
Early Childhood Center, children from three to
of prevention.
instincts, in addition to teaching techniques.
five years are given highly specialized atten-
Plan A had a nebulous beginning in the
Directors of Special Education are discov-
tion. Although most are handicapped mentally
late '60s, with the State plan for education of
ering that principals trained in primary and
or physically and are predominantly Mexican-
handicapped children, provided for under Title
early childhood education generally are more
American, there is a mixture of children from
VI of the Elementary and Secondary Education
realistic toward children with varying special
Act of 1965, as amended.
several cultures and with a wide range of IQs.
needs than are those coming from other educa-
Brilliantly colored, and carpeted through-
In-depth research on the Texas State Plan,
tion fields. The latter seem more oriented to-
out, the demonstration school is alive with the
as well as on many other State plans, indicated
ward rigid, chronological criteria for grade
joy of children discovering the world and
that special education was not being respon-
placement.
themselves. But it is ordered exuberance.
sive to the obvious call for massive restructur-
Technique and instinct both are apparent
In one learning area of a large room, a
ing of education in general. Instead, the special
in Victoria Plaza Elementary School, where
group marches around in a circle, beating out a
education plans seemed to be perpetuating the
trained residents of Víctoria Plaza, a model
ragged rhythm with whatever can be turned
status quo. And the status quo was not work-
housing unit for aged persons, across the
into a percussion instrument. One child has
ing.
32
33
Costs were increasing; benefits decreasing.
in average daily attendance, the school district
and to adapt the content of what is taught to
PRIME is a cooperative venture of the
Researchers brought in experts in special
is allotted 20 professional instructional units, 7
that which is relevant rather than traditional.
U.S. Office of Education's Bureau of Education
education and related fields, distilled their
teacher aides, and 3 professional supportive
They learn to replace teacher monologues
for the Handicapped, the Texas Education
ideas into a report with 17 recommendations
personnel units. For each additional 1,000 pu-
with dialogues between child and teacher, and
Agency, local school districts and higher educa-
for drastic changes in special education.
pils there is an additional entitlement.
between child and materials. Teachers are
tion institutions.
Major recommendations were:
School districts may form cooperative pro-
taught to listen, to teach the child how to
The outcome of this study, combined with
Discontinue labeling and categorizing chil-
grams, especially for severely handicapped chil-
learn, to stimulate his own activity and to en-
the dynamic concept of Plan A, promises an im-
dren. (Do not label one child as brain injured,
dren. Several have done this. Some regional
courage him to direct that activity into mean-
pact that will spread beyond the limits of spe-
another as emotionally disturbed, a third as
programs have been established for children
ingful channels.
cial education, and far beyond the borders of
mentally retarded, etc.)
who cannot cope with a regular classroom.
Strategies for curriculum change are grow-
Texas.
Previously, there was little or no assist-
ing out of these progressive concepts, which
Shift the emphasis from the handicapping
ance to teachers in regular classrooms that in-
are based on sound knowledge of human de-
For further information on Plan A, write:
condition to the educational needs of each
cluded handicapped children. Supportive staff
velopment as it relates to the learning process
child. (Discontinue emphasizing the fact that a
positions were not available, nor was there a
itself.
Director of Special Education
given child is crippled. Instead, assess his indi-
possibility of contracting for services.
While these educational changes are tak-
Texas Education Agency
201 E. 11th Street
vidual needs and program his education ac-
To assist the regular classroom teacher,
ing place, Plan A classes are being examined in
cordingly.)
minute detail by Project PRIME (Programmed
Austin, Texas 78701
specialists are now available, including educa-
Shift the emphasis from the self-contained
tional diagnostician, helping teacher, resource
Re-entry Into Mainstream Education), the larg-
For further information on PRIME, write:
special class to mainstream or regular educa-
teacher, teacher aide, counselor, visiting
est single study ever undertaken in special edu-
teacher, speech therapist, teacher of the deaf,
cation. Findings will give policy makers across
PRIME
tion facilities. Where a handicapped child can
achieve, provide him with an education in the
blind, and others for special needs.
the nation firm data on how handicapped chil-
Bureau of Education for the Handicapped
regular school program with modifications and
Funds are available for appraisal of hand-
dren can benefit most from integration into the
ROB #3
support as needed.
icapped children, with each child receiving an
regular classroom, and to identify strategies
7th and D Streets, S.W.
individual education prescription. Each child is
and climates in administration and teaching
Washington, D.C. 20202
The research findings and recommenda-
given individual help in this program, rooted
necessary to accomplish this goal.
tions, supported by the Texas Education
in Piaget's theories of cognitive learning.
Ralpb Matthews
Agency, resulted in legislation that was passed
In addition to the programs in the early
unanimously by both houses of the Texas Leg-
childhood centers, there is a homebound pro-
islature in 1969.
gram for stimulation of infants and for the
With wholehearted support from the State
bedridden.
Board of Education and the Commissioner of
The Texas Education Agency's Special Ed-
Education, Plan A began during the 1970-71
ucation Department is currently holding a
school year, with a pilot project in five school
continuing series of institutes to create aware-
systems. In 1972-73 there are 70,000 handi-
ness of the need for curriculum change, and to
capped Texas children receiving these special
train teachers and administrators in the appli-
services. By 1976, Plan A is expected to serve
cation of Piaget's learning theories to curricu-
all of Texas' handicapped children, from 3 to
lum development for exceptional children.
21 (with infant stimulation programs in many
Each participant is responsible for
areas).
bringing ideas and results of the conference
Case finding is the responsibility of the
back to the school district, and implementing
local school district, and because of the change
changes if there are implications for that
in funding patterns, it is to the district's finan-
school district.
cial advantage to get the children in school.
Those attending return to their schools
Under Plan A, however, funds are allot-
and children with a heightened interest in the
ted to school districts according to average
child as an individual rather than in terms of
daily attendance, and exceptional children who
norms or as a subject to be located within a set
spend more than half of their time in regular
of statistics. They are filled with Piaget's com-
classes-including art, music, gym, shop, home-
mitment to adapt the school to the mind of the
making, etc-are eligible to be counted in aver-
child, to adapt teaching techniques to the cog-
age daily attendance. For each 3,000 children
nitive structures of the child's thinking process,
34
35
TO THE COMMUNITY
The Open Institution
After a visit to Mansfield you wonder why
girls could wash and set their hair but it wasn't
anyone would want to leave it.
very sexy. So we invited the West Hartford
Mansfield Training School, a State resi-
Junior Women's Club out here to talk with
dential facility serving eastern Connecticut, is
some of the girls and see the place. We told
situated in the gently rolling, well clipped
them we'd need about $7,000 to get a nice
countryside, about 30 minutes from Hartford.
shop. We got $15,000."
Two lakes mirror the beauty of the land.
There's a plaque on the wall in honor of
Everything seems open there—the un-
the donors.
fenced grounds, unlocked doors, the dormito-
Elsewhere on the campus, there's a men's
ries, the staff, the snack bar, the director's
barber shop, complete with all the trimmings.
office, and above all, the faces of the residents.
There's a vocational training work-shop
There is a clothing "store," with attractive
where a worker tells with pride how he
window displays and mannequins, where the
thought up the distinctive "Mansfield grooves"
residents choose their own clothes.
in big, chunky candles, and shows how he
"Why dole clothes out, when they can
achieves the effect-with an ingeniously pro-
come in and choose what they like?" asks the
tected blade.
superintendent, who has a background in both
The training school's recreation, physical
mental retardation and public administration.
education and music programs have been used
"Besides, they'll have to get used to buying
as a model for other institutions. The school
clothes when they leave."
band and the blind glee club have entertained
The snack bar is open morning to night,
thousands and have cut two long-playing rec-
patronized by staff and residents alike, and
ords.
staffed by residents.
At Christmas, there is a big holiday party
"We got a little flack on this," he says,
-one of the many held during the year. Indi-
"when we decided to open the staff's snack bar
vidual neighboring communities, clubs and fra-
up to the whole place. So we started with the
ternal organizations, churches, and the news
'high-level' residents only, one day a week.
media all join forces in Project FOCUS (For-
Eventually, they were all coming, any time they
gotten Ones Christmas You Serve) to give at-
wanted to. Nobody gives it a second thought
tention and friendship to the 500 "forgotten"
any more. It's all part of the normalization
residents of Mansfield who never receive visi-
process."
tors and have no family.
Next to the snack bar is a "teen club"
"We get a lot of publicity from the news-
with a bowling alley and small tables that give
paper and TV stations for FOCUS, and the re-
it a club atmosphere.
sponse from the public is terrific. There are
The beauty parlor is as pink and feminine
gifts, and, of course, the party, and contribu-
and professional as any on "the outside." Two
tions from all ages of people. Friendships get
State-employed beauticians staff it and super-
started and pretty soon, we've got another vol-
vise residents who learn to do each other's
unteer."
hair. Appointments in advance are generally
FOCUS may have started as a Christmas
required.
project, but it now lasts all year round, with
"We used to have a small place where the
fashion shows, plays, concerts, roller skating
37
and bowling and a dozen other activities that
fers that will add to their experiences. Most
get residents and neighbors together.
pay for the outings by saving up tokens earned
"We do anything we can to close the gap
by working at Mansfield.
between the community and our residents."
In the summer and often on weekends,
The pattern begins to come clear. The
big groups go out to the rugged and beautiful
clothing store and the beauty parlor and the
camp recently acquired. They eat around camp-
snack bar and the teen club and FOCUS and
fires, hike through the woods, and play in the
all the other attractions of Mansfield are not
open field. Many of the residents helped pre-
just for the purpose of making the lives of
pare the campsite, which was a wilderness
Mansfield residents more pleasant and more
when they got it. Mansfield has even dammed
normal. They are also preparation for the life
up a stream and made a lake for swimming,
that many will be living in the community.
boating and fishing.
Whenever possible, the children go to
"Everybody needs a change of scene once
local public schools. And the public schools
in a while."
come to Mansfield, with plays and picnics and
Throughout Mansfield there is a feeling
athletic events. Over 400 college and 70 high
of constantly changing scenes. Old storage
school students volunteer in various programs
areas ripped apart and being converted into
at Mansfield.
brightly colored learning spaces for multi-
Many of the retarded adults hold jobs in
handicapped children who need special train-
neighboring industries. In turn, the companies'
ing. A big, roofed patio being built beside a
technicians and engineers have helped Mans-
cottage housing non-ambulatory residents, so
field set up training programs for others who
that they can be wheeled outside for picnics
will hold similar jobs in the future.
and fresh air. A bigger and more professional
Residents take train rides into nearby cit-
gift shop where the candles and other gift
ies to visit museums, zoos, parks, fire depart-
items made at Mansfield are sold to the public.
ments, airports-whatever the community of-
"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'v 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 homestyle, 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 man-
ages to look like an apartment building. All
have outside jobs, but are not quite up to cop-
ing 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 excite-
ment as they prepare their own dinner.
38
39
Another young adult group, also on their
as many as we can into real life, or as close to
field's residents who move out into the commu-
on adherence to standards of care, each home
way to the outside, drops by the snack bar and
it as possible."
nity can be sent to any one of the 12 regions
would have to adhere to uniform and strict
invite some friends to come over to their apart-
The staff goes through continuing educa-
and receive the social services available in each
standards.
ment for coffee in the morning. They have
tion to make them more sensitive to their
region. In other words, the resident can go to
"There's no point in moving people from
their own quarters in the staff apartment build-
charges.
another area in the State and be "picked up"
some big, bad institution into some little, bad
ing across the road. They're almost-but not
Throughout the region, there are former
to receive their full range of services.
foster home."
quite yet-completely on their own.
Mansfield residents living in group homes,
Mansfield now has about 750 in commu-
Some won't be going at all. But they're
some in boarding homes, a few living inde-
nity-based programs. Over the last five years,
For further information, write:
not hidden in drab back wards.
pendently. Mansfield has leased the homes,
the resident population has been reduced from
The day room for the most profoundly re-
and Mansfield staff remains available when
Superintendent
2,100 to about 1,400.
tarded had been a large, high-ceilinged, barn
Mansfield State School
needed, in addition to the house parents who
So Mansfield has already surpassed the
of a room, gray and forbidding and with years
are there at all times.
Mansfield Depot, Connecticut 06251
goal of moving 1/3 of the residents out into
of institutional history permeating its walls.
Sometimes, residents still at Mansfield
community living. What is the next step?
"We had to do something about it, and
spend weekends at the group homes, as part of
Most of those who have no place to go
lowering the ceiling or remodeling was too ex-
the phasing out system.
are severely and profoundly retarded. They
pensive. So we called in some of the architec-
The homes are in quiet residential areas of
usually have several handicaps, and many are
tural students from the University of Connecti-
neighboring communities, all within walking
bedridden.
cut across the way, and put it up to them. Now
Foster care or nursing homes is possible
it looks like a pleasant place to live in. And
"There's no point in moving people
for many if rigid restrictions can be modified
it's designed to get them to move around
from some big, bad institution into
concerning fire regulations, zoning, and similar
some."
obstacles to more personalized, private care.
The gaily-painted room has a four-section
partial divider in the center, mounted on a
some little, bad foster home."
With the right kind of community relations, a
The Survey Research Center of the Univer-
number of homes would open up to caring for
sity of Michigan recently did a study of
slightly raised and carpeted platform. Action
institutions. Among their findings: Those
severely handicapped children, for example.
flows around the center area, with each of the
distance of transportation. There had been
facilities with an educational treatment
four sections offering a slightly different inter-
some neighborhood apprehension before they
Such care is more reasonable and better, gener-
technology, almost without exception, pro-
moved in, and a few real problems, but all got
ally, than institutional care.
vided higher levels of care, more balanced
est. Over each of the four areas is a bright-
colored tent, suspended from the ceiling, and
settled.
The safeguard against undesirable private
programs, and more equalitarian render-
care is in the system of licensing. If the State
ing of services to recent versus long-term
hung just low enough to give the room a cozy,
"This is really great," said one man who
office of mental retardation had the right to
residents than other facilities did.
more intimate feeling. The cost for the "re-
had been at Mansfield 17 years before being
license such homes, and the authority to insist
modeling" was nominal.
weaned away carefully to the group home. He
Facilities with a medical or psychiatric
There's a cottage for blind retarded resi-
was working in the kitchen of a rather expen-
treatment technology had many residents
dents, with its own dining room, and private
sive restaurant, and bragged about the prices
who actually deserved educational and
bedrooms, with two or four to a room. Using
on the menu. He was making $89 a week
other therapeutic service, but who received
the same space that had previously been a
take-home pay. Everyone must be able to pay
far less than their share of these.
large dormitory, it has been remodeled into
$25 a week room and board before he or she
private quarters with funds from the Connecti-
can enter into the group living arrangement.
Residents at medically oriented institu-
cut Lions Clubs.
A few blocks away from this house was a
tions, when matched with those of equal
The group of blind retarded young people
similar one for young women, and some not so
functioning at educational facilities, never-
sitting talking in their living room called out to
young. They are all working in the community.
theless were provided far fewer educa-
tional, social, vocational and even certain
the visiting staff member, "Don't forget to
Some share apartments in the Hartford
medical-nursing services than their fellow
come to our concert next Sunday night."
apartment house Mansfield leased three years
residents at educational facilities.
They are members of a choir that was to
ago. There are 15 units. Those who live there
sing at a neighboring church, and they had
pay for their own apartment and food. The
These and other structurally-based differ-
been practicing for the concert for months.
only cost to the State is for social service and
ences existed despite about equal finan-
Why would anyone want to leave here?
housekeeping supervision. This is the final step
cial and other resources between the two
"Look, it may seem like a country club,
on the way to living without any supervision or
kinds of facilities.
but it's still an institution. And an institution is
help.
an institution, especially with these huge old
Through Connecticut's system of regional
buildings we're stuck with. The idea is to get
centers for mental retardation services, Mans-
40
41
prospect of eventually moving into another
a national trend toward normal living, through
ward of Beatrice where the residents were
the use of hostels, foster homes, group homes,
older. That was all.
community training centers, day-care, respite
But one day Johnny was taken out of the
care, and other community services.
There Are Choices
back ward and into a hostel in Omaha where
The answer is not just removal from the
five other severely retarded youngsters were
institution, but a concerted effort of a variety
living.
of community services that can provide good
Johnny now is a lively little boy who goes
alternatives to institutional living-or a by-pass
to special education classes; he talks and sings,
of the institution altogether.
goes down the sliding board, dresses himself
Wisconsin is planning to put into effect
and, of course, is toilet trained. Five days a
such a system. Standards, licensing and supervi-
week he, along with the others of the "fam-
sion of the community housing program are an
ily," are bused to their special classes, physical
integral part of the plan. Training programs
therapy and recreation programs.
Perhaps more important, he is being intro-
duced 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 in-
stead 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 incapa-
ble of functioning outside."
Henry, also, moved into a hostel in
Omaha, and was given five months of intensive
NARC
vocational and social training. He has not
The goal is to move at least one-third of
One State school that moves out about
missed a day of work nor been late once for
those now in institutions out into the commu-
150 annually, admits about 140 annually.
his job as a dishwasher in an Omaha restau-
nity.
In this mad juggling of residents, it is im-
rant.
Is the nation moving toward that goal?
possible to give any accurate account of how
He was almost late once, but that was
Some states have surpassed the one-third
many nationwide are coming in, going out,
during a blizzard. He walked through it and
figure. Other states still have people who have
making lateral transfers, or not moving any-
punched in on time.
been waiting as long as nine years to get into
where.
The effects of the trend toward normaliza-
State institutions for the retarded, with no al-
Many are definitely moving out. Johnny is
tion are being felt not just in Nebraska, but
ternatives available in the community.
one of them.
across the country. The newer way exists in pa-
A director of a State institution may re-
When he was six, Johnny was still in dia-
thetic contrast, often in the same State, with
port a drop of over 100 in the resident popula-
pers. He was able to say four or five words,
the most backward back wards. Funding is
tion for the past year. An examination of their
and could barely walk. All day long for six
spotty, usually a combination of Federal
destination, however, reveals that close to 50
years he had stared at the blank walls of a
(HEW and HUD), State or regional, and
have been sent to a State mental hospital be-
crowded ward of Beatrice State School in Ne-
local monies. Occasionally, private funds are
cause of their advanced age and senility. Nu-
braska, where he had been brought shortly
available, or housing is provided by churches,
merous other residents are being transferred
after he was born.
unions, civic or fraternal organizations, or
from one State school to another.
Severely retarded, he faced only the bleak
foundations. There is no national pattern; only
42
43
for the "parents" are arranged as much as pos-
For ADULT living systems, 18 years and over,
sible.
Wisconsin plans:
building, zoning, health and safety require-
One plan is for children under 18; another
ments) with overall monitoring by the Bureau
FOSTER HOMES. Private homes with a family-
for adult retarded individuals. All require com-
of Mental Retardation.
type care program for less than five adults who can
munity resources back-up, and continued super-
tend to their personal needs, and do not need con-
For further information, write:
vision by the sponsoring agency.
tinuing medical nursing services. They may be work-
ing and paying a part of their expenses or being
Eastern Nebraska Community Office
trained for employment.
of Retardation
Central Office
GROUP FOSTER HOMES. Family-type homes for
up to eight retarded adults who need supervision and
116 South 42nd Street
personalized living. May be short-term or long-term
Omaha, Nebraska 68131
care.
BOARDING HOMES. Homes for up to eight re-
Wisconsin Department of Health and
tarded adults who are capable of independent living
Social Services
and total self-care. Most pay their room and board
Bureau of Mental Retardation
from earnings. Sometimes placement agencies supple-
Madison, Wisconsin 53706
ment the cost. Little supervision required.
RESIDENTIAL CARE INSTITUTION (Type I).
Long-term care for a maximum of 50 semi-dependent
individuals, most of whom will be able to care for
themselves with minimal supervision, but require spe-
cial 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 com-
munity 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 atten-
In the CHILDREN'S living system, the following
tion:
are planned, and some in operation:
Skilled: for those requiring services of a registered
FOSTER HOMES. Private homes with a family-
nurse because of severe handicaps.
type care program for less than five children. Full-
Limited: for semi-ambulatory persons with some
time.
self-help skills.
Personal: for ambulatory handicapped persons who
ESTIMATES OF NUMBERS OF RETARDED PERSONS PER
GROUP FOSTER HOMES. Family-type homes
require minimal medication and are capable of
YEAR OF AGE IN A COMMUNITY OF 100,000
for five to eight children. Full-time.
supervised community activities.
Number/Year
of Age
CHILD WELFARE INSTITUTIONS. Facilities
In all nursing home care, State residential
(43)
IQ
within the community for four or more develop-
mentally disabled children who cannot remain in
facilities make an independent evaluation of li-
0-19
censes, and they must meet the requirements of
20-49
their own or foster homes, and who require special-
ized training, care and services. May be temporary.
the State licensing agency.
50+
10
BOARDING HOMES. Homes for one to four
Adequate adult programming for social,
children who temporarily need a place to live while
educational and recreational needs is possible
attending a specialized school program-especially
with proper staffing and funding. The use of
rural children. The children go home on weekends
trained volunteers is also encouraged.
and for vacations.
5
The Wisconsin plan combines several
TEMPORARY CARE HOMES. Short-term, re-
agencies, including Division of Mental Hy-
spite care for one to four children to relieve the
family, or give emergency housing to children while
giene and Family Service, Division of Health,
plans are made for their more permanent living ar-
Department of Social Service, Department of
rangements.
Industry and Human Relations (for local
0-5
6-19
20-24
25+
Age in Years
Source: American Journel of Mental Deficiency
44
45
Making It on Their Own
Elwyn Institute, a residential facility for
picnics, and on visiting days. A number came
the mentally retarded near Philadelphia, chose
back for help in filling out income tax forms.
65 of its long-term residents to take part in a
Favorite recreation (in order of popular-
4-year research project concerned with inde-
ity) TV, radio, visiting friends, going driving,
pendent living.
movies.
All were retarded, with an average of 15
Their record as residents of the commu-
years in institutions. Most had been orphaned
nity:
or abandoned by their families at an early age.
Their savings accounts average between
The oldest had been in an institution for 49 of
$300 and $500. Most have life insurance, in
his 50 years.
addition.
They were given batteries of aptitude
Three had been arrested, but none con-
Building a Model for the Natio
tests; classes in personal adjustment, work ad-
victed.
justment, and community adjustment; and a
Most lived in rented rooms or small apart-
ments, starting out in furnished quarters, then
buying their own furniture when they could af-
"The mentally retarded are people.
ford it.
Back in September of 1964, a group of
West Leisenring School for the H
People do not live in institutions or
So they have made it in the community.
special education vocational students in Penn-
A bright, cheerful school, it is CO
Nearly all feel they will never need to be in an
facilities. People live in houses."
sylvania were given the job of cleaning up and
elevators and ramps for wheel cha
institution again. And Elwyn agrees.
renovating an abandoned school bus garage. It
cal therapy room and other spe
was to be used later as a classroom and train-
spaces. Its estimated value today
-Jens Malling Pedersen
For further information, write:
ing facility for senior high school boys.
times the cost of renovation.
Danish Architect
Elwyn Institute
Within two years they had gone far be-
By now, the vocational st
choice of 15 trade training courses. And then
111 Elwyn Road
yond cleaning up; they had renovated the
shown that they could do a job w
they were moved out into halfway houses to
Elwyn, Pennsylvania 19063
building and constructed a wood-working shop,
sion, and do it well. It was time
introduce them to independent living.
an auto body shop and a classroom. The build-
gram to grow up to its potential
Their work record:
ing became a "monument" to the vocational
out beyond the limits of the school.
More than 90 percent are employed in
students' ability.
An agreement was made betw
steady jobs.
Too much had been gained to stop with
gram directors and Concerned of P
Of those who had been in the labor mar-
that one project, SÓ when a house in the com-
Inc., a non-profit organization laun
ket for four years, more than half had changed
munity was about to be condemned, the Direc-
gymen of three denominations
jobs-largely to better themselves.
tor of Special Services of Intermediate Unit
badly needed low-cost housing.
They were more satisfied with their work
One arranged to have it given to the program.
Concerned acquires the homes
than with their wages and chances for advance-
One year later, the expertly renovated
vated, provides the building ma
ment.
building was ready to be used as a home man-
leaves the completion date open-
Their social record:
agement house for trainable senior high school
special education class provides stu
One-third were married, and had a total
aged girls. The boys are still responsible for its
the work, instructors to supervis
maintenance.
of ten children-not one of whom is retarded.
them, and hand tools and equipment
All have made some new friends since
A more ambitious step followed. With
Specialized services beyond the
leaving Elwyn. A few joined bowling clubs.
$150,000 of school funds, the students over-
the students are contracted out by
hauled a two-story building that is now the
Because of the source of free
Most return to Elwyn for annual parties,
47
46
possible to cut the selling price of the homes to
All eight of the June graduates from the
the cost of materials and contracted services
program found employment, in spite of de-
only. And the special education classes are as-
pressed conditions in this once prosperous coal
sured a permanent program of on-the-job pre-
mining area.
vocational training in the building trades.
They are living proof of the motto on the
PCMR'S ROLE
The group has now progressed to building
wall of their trailer-classroom:
new pre-fab houses.
"When the going gets tough, the tough
To steelworker James Greene and his
get going."
family, their renovated home in Smock, Pa., is
Despite the attraction of the program, the
a "dream come true."
question inevitably arises: What do the unions
The Greens paid $9,500 for their attrac-
think of it? Isn't such work cutting into their
tive 4-bedroom home, with most of that
territory?
amount covered by a Farmers Home Adminis-
Not at all. The Monongahela Valley
tration mortgage.
Building and Construction Trades Council is
The new pre-fabs are being sold for
not only endorsing the program, but promoting
$15,500, well below the usual market price.
it as an innovative approach to some of Ameri-
Concerned now has applications for 175
ca's most urgent problems in both education
would-be purchasers.
and housing. Unions are busy with larger-scale
Because the construction work has taken
projects and welcome the entrance of these
the boys considerable distance from their
young allies into the field.
school, they have a trailer for a classroom that
So, what started as a local, vocational edu-
goes with them on the construction site. It
cation experiment for a few young men could
serves 20 to 25 students.
prove to be the spearhead of a national pro-
The industrial arts teacher, who has had
gram to provide low-cost housing, vocational
several courses in teaching the mentally re-
education and employment to thousands.
tarded, and the certified special education
Fruition of such a plan requires the partic-
teacher assigned to the classroom trailer, work
ipation of State and local education depart-
closely with the boys and with each other.
ments and of several departments of the U.S.
Classes and construction work are done in
Government, including Labor, Commerce, Ag-
shifts. If there is any problem on the job in-
riculture, Housing and Urban Development,
volving math, reading, measurements, etc., it
and Health, Education, and Welfare.
can be immediately corrected in the classroom.
Indeed, the vocational students of the
The curriculum is built around practical aspects
Monongahela Valley are building more than
of the job.
houses; they are building a model program for
1. To advise and assist the President on
Visitors to the current construction site
the rest of the nation.
evaluation of the adequacy of the national
will see one group of boys vigorously engaged
effort to combat mental retardation
in such tasks as waterproofing foundations
For further information, write:
The Executive Order
while the other half of the class sits in an adja-
Director of Special Education
coordination of Federal activities in the field
cent trailer concentrating quietly on their math
Intermediate Unit One
establishing the
liaison between Federal activities and those
workbooks. Peering over their shoulders, you'll
1148 Wood Street
see such eminently practical problems as:
California, Pennsylvania 15419
President's Committee
of other public and private agencies
"A plumber, in connecting a water tank,
on Mental Retardation
development of public information to reduce
used six lengths of pipe as follows: 16 inches,
the incidence of MR and ameliorate its
28 inches, 8 inches, 21 inches, 6 inches, 32
assigned it three tasks:
effects.
inches. How many inches of pipe should he
charge to the job?"
2. To mobilize professional and general public
Their instructor says he has never had any
support for MR activities.
discipline problems, although this was not true
when they were in a more traditional, less rele-
3. To report to the President at least annually.
vant academic setting.
48
49
HIGHLIGHTS OF PCMR's
PCMR
ACTIVITIES IN 1972
MEMBERS
1972
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 organized, at the President's request, a full-
scale review of all MR and MR-related programs
PCMR met with spokesmen for the health insur-
in the Executive Branch of the Federal Govern-
Elliot L. Richardson
Robert A. Collier
Donald L. Fox
ance industry to try and resolve misconceptions of
ment. The published report is the first on the total
Lawrence A.
Chairman
(Deceased)
the nature of mental retardation which has caused
Kane, Jr.
Federal MR effort.
insurance groups to consider the retarded "unin-
surable."
PCMR developed and published a Committee
position paper on lead poisoning, terming it a
PCMR conducted, in a coordinated effort with
preventable cause of mental retardation.
several agencies, a definitive conference on early
childhood screening and assessment, led by fore-
PCMR held a series of meetings on critical issues
most authorities in the field. The findings and
in mental retardation, focusing on the return of
conclusions will probably have national implica-
retarded persons to community life. Participants:
tions concerning cost-effective screening programs
National leaders from parent and professional
and treatment before the occurrence of irreversi-
Clair W. Burgener
organizations in the MR field.
Frank R. DeLuca
Melvin Heckt
ble damage.
Aris (Bob) Mallas
Vice Chairman
PCMR launched a newsletter for the exchange of
PCMR expanded its international interests, in at-
information on public relations activities of agen-
tempting to identify mental retardation services
cies involved in MR, with PCMR as clearing-
and programs which might serve American citi-
house.
zens overseas. Participants in a series of meetings
included representatives of the State Department,
PCMR maintained an active interest in several
Organization of American States, International
court cases testing the rights of the retarded to
League of Societies for the Mentally Handi-
education, treatment, due process, and payment
capped, and Armed Forces agencies.
for work. Committee assisted certain plaintiffs in
Marianna Beach
obtaining expert advice and testimony. PCMR
Richard J. Elkus
Cecil B. Jacobson,
PCMR served as catalyst in creating the Indian
Lloyd E. Rader, Sr.
plans a National Legal Rights Conference in the
M.D.
Education for Health Committee, whose forma-
spring of 1973.
tion was personally announced by the Secretary
of Health, Education, and Welfare (responsible
PCMR determined that the President's goal of
for Indian health), and the Secretary of Interior
reducing by half the occurrence of MR could
(responsible for Indian education). The purpose
best be met through improved maternal and infant
is to coordinate health and education programs
care.
on reservations, with an emphasis on mental re-
tardation prevention and improved community
PCMR organized training institutes in south-
services for the retarded.
western and midwestern states for leaders in
parént and professional MR groups. Institutes
PCMR studied, endorsed, and disseminated in-
N. Lorraine Beebe
covered a wide range of subjects including the
Ralph J. Ferrara
James N. Juliana
formation nationally about an innovative school
Louise R. Ravenel
50
51
vocational program in Western Pennsylvania in
MR 72 RECOMMENDATIONS
which retarded youth learn construction skills and
related academic subjects by renovating houses
for sale to low-income families.
We have described in this report models of programs in
various parts of the nation. Clearly implied is our recom-
PCMR conferred with the National Association
mendation that such programs be adopted or adapted on a
of School Psychologists on alternatives to IQ tests
wider scale by State and community agencies. More specifi-
in assessing pupils' individual needs.
cally, as to Federal actions, we offer the following recom-
mendations as means of achieving the President's goals in
William B.
PCMR held a planning session with representa-
mental retardation:
Will Beth
Robertson
tives of Federal agencies in the mental retardation
Stephens, Ph.D.
1. A Mental Retardation Coordination and Liaison
field to discuss training of administrators in the
Office at the highest administrative level should be
delivery of human services rather than solely for
established in Federal departments of executive agencies
the delivery of services to a specific group.
that have not already done so. Through these offices,
the departments and agencies should work with the
PCMR issued six new publications, bringing the
President's Committee on Mental Retardation for a
number of reports to 20 at the present time. (A
coordinated effort. Similar action should be taken at the
current list is available on request.) Total number
regional level, involving Federal, State and local repre-
of publications distributed in 1972: 259,550. Total
sentatives.
number of inquiries received and answered in
1972: 42,860.
2. A plan should be formulated by the involved Fed-
Kenneth S.
eral departments to aid State and local governments in
Margaret B. Ulle
Robinson
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 shel-
tered 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
Caspar W. Weinberger
to a better life for retarded persons.
4. As a prime means of preventing handicaps, efforts
should be concentrated on improving maternal and
Jeannette
infant care.
Miriam G. Wilson,
Rockefeller
M.D.
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.
The Secretary of
The Director of the
Labor, Ex Officio
Office of Economic
6. Appropriate agencies and organizations should work
Opportunity,
with PCMR in focusing information and education
Ex Officio
resources to create greater public awareness of preven-
tion possibilities and a climate of community acceptance
for retarded persons.
52
53
PCMR STAFF
CONSULTANTS
Richard C. Allen, J.D.
OFFICE OF THE DIRECTOR
Harold S. Barbour, Ed.D.
Fred J. Krause,
Charles C. Bergman
Executive Director
Leo F. Cain, Ph.D.
Helen C. Caldwell
J. Julian Chisolm, Jr., M.D.
Ruth Ann Metzger
Louis Z. Cooper, M.D.
PROGRAM OFFICE
Patrick J. Doyle, M.D.
Allen R. Menefee,
Maurice Flagg
Program Coordinator
Dennis E. Haggerty, LL.B.
Alfred D. Buchmueller
H. Carl Haywood, Ph.D.
Elizabeth S. Bush
Edward L. Johnstone
Edward J. Lynch
Tadashi A. Mayeda
Richard C. Thompson
Paul A. Rittmanic, Ph.D.
Gwen R. Coleman
Donald J. Stedman, Ph.D.
Edna G. Cosby
George Tarjan, M.D.
Gail M. Gorman
John D. Thompson, M.D.
Pierette A. Spiegler
Thomas A. Tucker
INFORMATION OFFICE
Raymond W. Vowell
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
We wish to thank the numerous individuals in
all levels of government and the private sector,
Ruth G. Gray
especially those in voluntary organizations, who
have contributed so much toward PCMR's efforts
Patricia S. Kramer
to reach the President's goals of prevention and
Larry Lane
normalization in the field of mental retardation.
We appreciate the commitment of PCMR's con-
sultants and special advisors who have given
technical assistance on many projects and spe-
cial 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 retarda-
tion and to ease the burden of those afflicted.
Fred J. Krause
Executive Director
54
* U. S. GOVERNMENT PRINTING OFFICE 1973 735-726/2118
DHEW Publication No. (OS) 73-7
THE PRESIDENT'S COMMITTEE
ON MENTAL RETARDATION
Washington, D.C. 20201
U.S.MAIL
POSTAGE AND FEES PAID
U.S. DEPARTMENT OF H.E.W.
HEW-391
The President's Committee on Mental Retardation
Washington, D.C. 20201
MR 73/ THE GOAL IS FREEDOM
PRESIDENT'S COMMITTEE
UNUM
MENTAL NO
THE PRESIDENT'S COMMITTEE ON MENTAL RETARDATION
Washington, D.C. 20201
In spite of
PRESIDENT'S
COMMITTEE
all the ideas and
NO
all the technology and atoms
ANTAL
RETARDATION
pcmr
in the world,
The President
The White House
Washington, D.C.
it all comes down
Dear Mr. President:
It is a pleasure to present to you the seventh annual report of
to shaping one
the President's Committee on Mental Retardation, MR 73: The Goal
Is Freedom.
individual
This is a human document, concerning mentally retarded people
who might have lived wasted lives had it not been for remedial
action that enabled them to develop into contributing members
at a time.
of society, freed from those internal blocks that set them apart.
Some have been able to avoid dependency by early treatment. Some
have been brought out of institutions into employment and commun-
ity living. Others have been saved from retardation by preventive
measures.
Both the prevention of mental retardation and the preparation of
retarded people for community living are relevant to the goals
you have set for the nation.
These achievements have been made possible by the application of
modern behavioral and medical science in the prenatal, neonatal,
and early childhood periods, in addition to the concept of contin-
uous development for all retarded persons, no matter what the age.
Evaluation of programs can now be based on specific data, with
records showing individual progress along a continuum of objectives
toward a stated goal for each person. The criterion for evaluation
has changed from whether or not the client is being served to how
much improvement the client has shown as a result of the service.
We commend these advances to your attention. We ask your support
in helping to bring these services to all retarded individuals
and to all those at risk of being born retarded.
Faithfully yours,
Caspar W. Weinberger
Chairman
h. Lorraws Beebs.
2804
(Mrs.) N. Lorraine Beebe
Vice Chairman
kionamy
Reprinted with permission from
Abbey Press, St. Meinrad, Indiana
INTRODUCTION
This report is not about "the men-
approach to a client-centered one.
same time the newest method of
tally retarded."
The criterion for evaluating programs
transporting a high-risk infant, early
It is about a little boy who failed
is no longer: How many clients are
childhood programs for handicapped
MR 73
to thrive because he had been aban-
being served? It is becoming: Are the
children, and treatment to prevent
doned; a young girl suffering from
clients developing as a result of this
long-term institutionalization.
the emotional effects of 16 years in
program?
One of the methods of communi-
bears witness to the
a State school; a group of "crib cases"
The President's Committee on
cating such advances is this annual
who were helped to function as
Mental Retardation therefore has
report from the President's Commit-
Committee's beliefs that:
human beings and given their iden-
chosen to base the first section of this
tee on Mental Retardation to the
tities; a young woman emerging as an
report on individual children and
President and to the American people.
adult after 26 years as a child.
adults who have grown and developed
Other activities conducted by the
The primary diagnosis for all of
as a result of this goal-oriented, per-
Committee in 1973-in the field of
these people was mental retardation.
sonalized concept. Large-scale, long-
legal rights, early childhood interven-
Mentally retarded people are capable of
The primary problem for each, how-
term results are not yet available,
tion, preparation for community
ever, was fear, or social inadequacy,
since application of the concept is
living, housing, public information,
continuing development.
or physical limitations. These internal,
relatively new.
among numerous others-are covered
personal barriers to freedom were
The report is also concerned with
in the report's third section. All are
more responsible for keeping them
other kinds of programs that can
designed to promote progress in pre-
Corrective measures introduced in early
from living meaningful lives than their
aid in avoiding dependency and
ventive measures, or to create a
childhood can reduce the severity of the
IQs.
promoting optimum development.
climate that will enable individuals
When they were recognized as in-
The main emphasis here is on preven-
who are retarded to live as normal a
handicap and sometimes reverse its
dividuals, each different from the
tion of the problem. The second sec-
life as possible.
other, each with potential for further
tion consequently contains material
Taken all together, the underlying
course.
development, they were given help
related to research on prevention and
philosophy of the entire report was
based on individualized assessment
early intervention. It is based on pre-
expressed over 100 years ago by
Prenatal and neonatal biomedical inter-
of their actual needs.
sentations given at a four-State Forum
Thomas Carlyle:
As a result, they did develop, and
held by PCMR in Kansas City, Mis-
vention can prevent many forms of men-
are still developing as persons, step
souri in the Fall of 1973.
by step, toward realistic goals.
Areas covered include prenatal re-
"Let each become all that he
tal retardation and related handicaps.
The expectation of continuing de-
search into the causes of handicapping
was created capable of being;
velopment toward objectives and
conditions, the oldest and at the
expand, if possible, to his full
goals, set on the basis of individual
growth, and show himself at
assessments, and measurable on
length in his own shape and
achievement scales, promises to be-
stature, be these what they
come the guiding principle in the
may."
mental retardation field.
Consequently, planning for services
is shifting from a program-centered
DHEW Publication No. (OHD) 74-21001
1
STEP BY STEP TOWARD FREEDOM
"We will let him show
Bryan is one of an increasing num-
A social worker found him there,
ber of retarded individuals who are
alone, abandoned, eating his own
us what he can do."
being helped to develop toward per-
feces.
sonal freedom and functional inde-
Each receiving home, each hos-
pendence through intensive, individ-
pital did for him what their limited re-
ualized programs that are oriented
sources allowed. He wasn't neglected.
He was like a frightened deer
toward practical goals.
The hospitals treated him for his phy-
when he arrived at the children's
Rather than being catch-all pro-
sical ills, and one started him on a
center. A small, wild creature, claw-
grams planned on the basis of IQ
sensory stimulation program, which
ing, biting, kicking everyone within
level, the newer programs are de-
began to bring him out of his emo-
reach, including himself.
signed to answer unique needs, and
tional prison.
At five, he spoke only a few words.
to remove those personal, inner bar-
It wasn't that no one cared. They
Prolonged screams were his principal
riers that tend to set mentally re-
cared deeply, wrote long, agonized
means of protesting captivity.
tarded persons apart from the rest
descriptions of his behavior and his
Mentally ill?
of society.
needs-"but his needs reach beyond
Mentally retarded?
In many cases, retarded mental
this program
His last psychological evaluation,
development is not the major prob-
From tests made when he was
when he was four, tentatively gave
lem. The main factors blocking in-
four, he appeared to be functioning
him an IQ of about 30.
dividual progress may be uncontrolled
at a little over a one-year-old level,
"Forget the diagnosis," said the
emotions, or negative self-image, or
IQ 30+, although the psychologist
center's director. "He is a frightened
entrenched negative habits that are
noted that his bizarre behavior and
child. We will work with him and see
reinforced with repetition, or physical
deprived background made meaning-
what happens. We will let him show
handicaps. These "side effects" are
ful results almost impossible.
us what he can do. And then we will
often more inhibiting to development
He screamed or cried constantly,
work with him some more."
than mental retardation itself.
rocking back and forth in bed or on
Bryan is seven now, a sociable,
the floor. He plucked at his skin until
outgoing little boy who is the pride
it was raw. No speech. No relation-
of his foster family. Aggressiveness
For Bryan, the road to freedom has
ship to people. A little boy tuned out,
has turned into leadership; he often
been filled with barriers, both external
captive of his own inner world of
plays teacher to his class.
and internal, from the day he was
terror.
Soon he will graduate from the
born.
When he was referred to the chil-
center's program to a special educa-
He was premature, and weighed
dren's center they ignored the test
tion class in public school. Later, he
just a little over two pounds. So he
results.
may be able to move into a regular
stayed in the hospital for the first
But there was no way to ignore
class. No one knows yet. After all,
five months. There, at least, he sur-
Bryan.
he has traveled so far in the last
vived, though just barely.
During the first few months there
few years.
From then on, because his mother
he would tear into the director's of-
At least it appears that he is headed
was unable to care for him, and be-
fice whenever he got the chance,
for a self-sufficient life. Two years
cause of his "failure to thrive," he
destroying papers, pictures, books,
ago he was headed for a lifetime in an
was in and out of hospitals for five
institution.
years. When he was out, he was in
receiving homes except for a brief
time after his first birthday, when he
went home.
3
STEP BY STEP TOWARD FREEDOM
anything he could reach. He was five
there were very few successes to re-
Even though the program at the
as aids to individual program plan-
inforce. They came more frequently
children's center is individualized and
then.
ning and assessment-never as a
Less than six months later he was
as he began to respond to the un-
highly personal, it is systematized
means of identifying the person. They
still running into his office, but now
familiar experience of having one
and structured, the program director,
are kept confidential. When a child
for a daily hug, and a little talk.
person's fulltime attention all day in
a psychologist, explains. "We struc-
goes from the program into a regu-
By that time, he was quite a little
the beginning of his therapy.
ture the situation, and build the en-
lar classroom in public school-as
mimic with his new-found method of
Then he moved up to groups of
vironment around the child in order
many do-no labeling goes with him.
communication: Speech. The staff of-
two, three, then a class of five or six.
to get constructive change."
"He's then just a nice kid in school,"
ten wondered if he would pick up the
The temper tantrums, the screaming,
Each instructional program is
says the director. "Some administra-
director's Hungarian cadences. He
the rocking, and finger plucking at
broken down into specific units, each
tors love to call children by their
didn't.
his skin gradually subsided.
unit containing both a detailed pro-
diagnosis. We don't give them the
Eventually-it took many months
cedure and a clearly defined behavior
chance. If there's any trouble, his
-he decided it was more fun to do
goal.
mother knows where she can come
what the class was doing than to go
The teacher then can record base-
for help."
The specifics of treatment at the
his own way. He was discovering that
line behaviors for each of the chil-
The center's basic goals are best
center are carefully and individually
cooperation has its rewards. He began
dren studying the unit. Thus, research
described by the director:
prescribed, but, more important, the
to choose to cooperate.
and services are joined. The chil-
"When we get the children at four
attitudes of the staff and administra-
Slowly, the academic program
dren's progress can be measured,
or five or older, the cycle of behavior,
tors are shaped by the philosophy
started. It took weeks of training for
and also the relative effectiveness of
of performance, is turning one way-
expressed in every act: Each individ-
him to be able to sit still on a chair
each of the components can be ana-
negative, negative.
ual is precious and each is capable of
and observe the teacher for even
lyzed.
"A temper tantrum is negative fun.
continuing development.
the briefest length of time, one of the
After behavior is modified to the
"Then we give them a taste of
When a child is deprived of normal
first of the "educational survival
extent that the child is able to exert
something that's more fun. Being
stimulation, he often begins to stimu-
techniques" the children are taught.
inner controls, the staff begins to in-
hugged, patted, smiled at, cuddled
late himself. This can become destruc-
When he mastered this art, the
troduce academic learning.
for doing the right things. They soon
tive in certain children who may
first objective had been reached to-
One of the goals is to give the child
find that, yes, that is more fun than
injure themselves severly by head-
ward the goal of learning how to
the skills needed to survive in the
biting and screeching.
banging, biting, or other kinds of self-
learn.
educational system. Another is to
"Pretty soon the cycle begins to
mutilation. So the staff attempts to
The check marks on his achieve-
promote inner motivation that will
reverse. Slowly. We all-all of us-
substitute the negative acts with posi-
ment chart were moving further over
carry him through on his own.
push, push toward the positive. Re-
tive ones, the destructive stimulation
from the "Never" column, through
"These flowers must bloom in the
place all the negatives with positives.
with constructive stimulation.
the "Sometimes," the "Usually," and
cold, outside world, not just in this
You take away something bad, you
"Early age is the best time to get
more into the "Always."
hothouse."
have to put something good in its
them," says the director. "When they
Bryan was ready now to learn how
The staff tries to involve the par-
place. Reach an objective, put the
come here they are already failures,
to read.
ents as much as possible, although
next one higher.
rejected by the system, rejected by
And so on up the ladder of learn-
only about half are able to take part.
"Now we introduce a little aca-
themselves-sometimes by the time
ing and behavior. He may not make
Some are employed by the center.
demic learning--a number, a letter.
they are five years old.
it all the way to the top. The scars
IQs are seldom mentioned there.
"Here we try to reinforce success.
of his formative years run deep. But
And although there are records con-
Success is sweet, and it's fun to
he is still climbing.
taining diagnoses, test scores, per-
succeed."
formance assessment and other rele-
Bryan had no tolerance for failure.
vant information, they are used only
At first, during the behavior shaping,
5
ust a little bite at first. Once they
the joys of learning, the learn-
itself becomes reinforcing.
"We give a little more push. Posi-
always toward the positive. The
ycle is beginning to turn more
uickly now.
"Then all of a sudden something
licks.
"And you know that the child is
eginning to push that inner wheel
imself, That is the wonderful time.
"When the wheel inside is turning
by itself, then he is ready. We are
lone. And, God willing, then he has
ained enough inner direction, moti-
ation, momentum to carry him
hrough. When someone on the out-
yells at him, he can take it, be-
ause there is still the inner strength.
"And the wheel is still rolling-
ositive, positive."
Contained in those words are the
secrets" of helping handicapped in-
ividuals move toward a life of qual-
Replacing negative with positive,
mphasizing strengths, and setting
bjectives higher and higher-but
till attainable-as each one is
eached, toward the goal for each
ndividual.
STEP BY STEP TOWARD FREEDOM
"You never know how
"That just proves," the center's
Candidates for community place-
The length of preparation varies
program director commented, "you
ment, such as Yolanda, are bussed
far a person can go,
for each individual, depending on
never know how far a person can go
in daily to the training center from
whether he or she meets the criteria
once she decides she
once she decides she wants to go
nearby residential State schools.
of the center, and whether goals have
there."
Because most are in their teens,
been met.
wants to go there."
Only a few of her fellow workers
the center provides a high school at-
When the staff feels a client is
know that she used to be labeled re-
mosphere, and offers sports and rec-
ready, and has met the criteria, the
tarded.
reation in addition to the classes.
placement officer goes into the com-
Last year Yolanda came out of
Yolanda failed in her first job not
Most of the classes are concerned
munity and seeks the jobs to suit in-
the State school where she had been
because she was retarded, but be-
with personal adjustments and job
dividual talents. There are several
since she was two years old. She had
cause she wasn't making the most of
training, but there is academic work
sessions with potential supervisors,
stayed there for 16 years, becoming
her abilities. When she found what
also, fitted to job requirements.
counseling with them as well as with
an institutionalized "retardate," fear-
she did best-working in an office-
Initial concentration is on person-
the clients.
ful, docile, dull.
she bloomed. And she is still pro-
al adjustment: Developing good
Sometimes the placement officer
Her first attempt to hold a food
gressing.
work habits; eliminating the internal
goes with the client for the initial job
services job and live in a group home
She may not ever become the pres-
obstacles to progress; telling time,
interview. In some instances, this is
failed, and she had to return to the
ident of the firm, but she'll never
and developing a time sense; social
more for the benefit of the supervisor
institution.
again stagnate in an institution. Even
and emotional adjustment.
of the job than for the employee.
The second venture into the world
in economic terms, that was a poor
There is a great deal of role play-
Before the job starts, there is trans-
has succeeded.
investment. She was costing the tax-
ing and simulation of social and work
portation training. Transportation
She now has a job as a "Girl Fri-
payers about $6,500 yearly. She's
situations.
can be one of the largest external
day" with a large corporation, where
now proudly paying taxes and con-
"We work to get them to a level of
obstacles encountered. But accessi-:
her puncture-proof good humor has
tributing in many other ways to so-
maturity that will enable them to live
bility of the job to the living situa-
made her an office favorite. Through
ciety and the nation.
in a group home or half-way house
tion is always a major consideration,
her own initiative, she has parlayed
The first experiment in group liv-
or independently, and to work suc-
before job placement.
the job from messenger to "office as-
ing failed because Yolanda prefers
cessfully on a job," says the training
There is frequent follow-up for the
sistant," maintaining office supplies,
living alone. Also perhaps because
center's director.
first few months, then periodic checks
and opening and closing the office
she was not so mature then as she
After much counseling and evalu-
for the first year or so.
each day, since she is on the job
is now. Counseling and personal ad-
ation of their skills, they then start
The alumni keep in touch, many
earlier and later than anyone else.
justment courses at the training cen-
on actual job training for food serv-
returning once a month for a social
In a project she calls her "insur-
ter have raised her level of maturity.
ices, maintenance or business work.
evening at the center.
ance for the future," she is teaching
And she's grown out of the rebellious
For two to three months, six hours a
"We don't deal in IQs," the direc-
herself to type.
adolescent stage that retarded as well
day, they work in a simulated job
tor says. "It doesn't even make any
Yolanda originally had requested
as most other young people go
situation.
difference whether our students are
the business course at the occupa-
through.
Around this time, a couple of
supposed to be 'educable' or 'train-
tional center where she was trained
She's enjoying living by herself in
months before job placement, they
able' or whatever label someone has
for employment but, because of her
her own apartment-a prime exam-
move into a half-way house. "The
slapped on them. All that's impor-
past experience with failure, the staff
ple of the necessity for offering a
program is set up and timed so that
tant to us is whether they can get and
preferred to start her in something
choice of life-styles geared to the in-
there will be as few simultaneous
less stressful. So she was prepared
dividual.
traumatic experiences as possible," a
for food services instead.
counselor says. "Starting a job and
moving into a community at the same
time is too much, especially if there
Gary Fine
8
are transportation problems."
STEP BY STEP TOWARD FREEDOM
hold a job and take care of them-
the teacher, a gentleman's agreement
selves either in sheltered or inde-
to achieve individual objectives.
pendent living after they leave here.
"We don't change values here so
The vast majority make it."
much as we change ways of arriving
Throughout the classrooms, there
at values," a teacher explains.
are charts listing personal goals, ar-
Yolanda has gone beyond fulfilling
rived at after many sessions with the
the terms of her personal contract.
teacher and counselor.
She's now setting her own goals and
Hanging beside the goals chart is
values, and they are higher than any-
a folder containing contracts made
one thought she could reach.
with themselves in cooperation with
NAME
GOALS
GOALS
(Training)
(Personal Adjustment
Training)
Jimmy
Increase speed on assignment
Stop rolling eyes
Elrod
Stop complaining about work
Stop roving about class
Terry
Improve attitude
Lower voice level
Denise
Be punctual
Stop flirting
Gary Fine
Gary Fine
Gary Fine
Michael Day
11
STEP BY STEP TOWARD FREEDOM
Open-ended progress
independent living.) The administra-
various kinds may be needed simul-
tor can then chart realistically the
taneously.
for each individual
broad functioning level of a group of
Each step is a prelude to the next
individuals and can plan programs
step in an open-ended progression.
The setting of goals and objectives
according to the next objective for
Benefits of the intensive training
for persons who are retarded is
these clients.
toward an objective extend beyond
quickly gaining acceptance through-
Requirements for staffing, equip-
the person served. Each person who
out the various planning levels, from
ment, budget planning, daily pro-
learns to dress himself, for example,
individual programing, through to
gramming and all other aspects of
not only moves up from total depend-
the federal level. The approach is
program planning must be kept flex-
ency to semi-dependency, but also
realistic and geared to the human
ible to meet clients' current and ac-
frees the person who has been dress-
scale.
tual needs.
ing him for more constructive duties.
Some programs employ minutely
Community, then State, and fed-
For people with severe handicaps,
detailed individualized assessment
eral planning can also be based on
there are some fundamental objec-
charts covering every facet of func-
cumulative data on functioning levels
tives. With rare exceptions, being
tioning. Others use a more informal
and resultant needs for clients in or-
toilet trained and ambulatory are
procedure that requires a minimum
der that they can advance toward
basic requirements for going to
of record-keeping. Measuring tech-
higher objectives.
school or getting a job, or group liv-
niques also vary according to age,
Traditionally, in the program-cen-
ing. Both are high priorities.
severity of handicap, and other fac-
tered approach, "the mentally re-
Once toilet training is accom-
tors.
tarded" within certain IQ ranges
plished, self-feeding may be possible.
In goal-oriented, individualized as-
have been fitted into existing pro-
Then dressing unaided. Then.
.?
sessment and program planning sys-
grams. Many of these kinds of pro-
Who knows how far the ladder of
tems-there are several varieties-
grams are a dead-end for the retarded
development reaches for each indi-
there is, first, a one-to-one procedure
person.
vidual?
to modify or strengthen behavior.
Client-centered programs, goal-or-
The ultimate goal is the achieve-
This is done to enable the person to
iented and based on individual assess-
ment of maximum functional inde-
move up from whatever functional
ment charts, on the other hand, fit
pendence for each person within his
stage he is in to the next higher level.
the program to the client. Resources
capabilities.
(Example: John now combs his hair
can then be redirected toward ac-
Is such a goal feasible for even the
unaided. The next objective may be
tual needs.
most severely handicapped individ-
brushing his teeth unaided.)
For instance, clients in a day care
uals who are incontinent and bed-
Each step is measurable on indi-
center might be enabled to progress
ridden? The next pages indicate the
vidualized assessment scales.
to a higher level of functioning if
answer.
Group planning is possible for sev-
given intensified occupational train-
eral persons in a given situation when
ing and socialization. Some may need
they have reached a certain common
orthopedic surgery, or dental work,
objective. (Example: X number of
in addition. Remedial programs of
bed-ridden clients have become am-
bulatory, or X number of clients liv-
ing in a group home are moving into
13
STEP BY STEP TOWARD FREEDOM
"Human beings inside.
mutely folding mountains of diapers.
The linens, floors, walls are hospi-
From the other end of the ward
tal clean. The patients, incontinent
Handle with care!"
comes the only sound in the room,
as they are, are as clean as they can
three community youth workers hud-
be under the circumstances. They
dled together on a bench, giggling
are fed as well as possible, consid-
Viewed through the bars of the
nervously.
ering their limited ability to chew
oversized crib, the diapered form ly-
The place reeks of a great variety
and swallow. The staff-patient ratio
ing there appears to be all arms and
of human waste.
is good.
legs, frozen at grotesque angles.
This is one floor of a hospital for
In short, these patients are being
Rows on rows of similar cribs
the "hopeless," the non-ambulatory,
served adequately. Requirements for
holding similar faceless, nameless,
mentally retarded patient with multi-
sexless bodies line the walls.
ple handicaps.
In four wooden chairs drawn to-
gether, white-clad nurses' aides sit
STEP BY STEP TOWARD FREEDOM
this patient population needing nurs-
alike. It has started on the fifth floor;
from vocabularies. Uniforms are dis-
ing care are being met.
it will gradually include the entire
appearing, though roles remain clear-
All other floors of the hospital are
resident population. [Since this sec-
ly defined, and each knows that he
mirror images of this scene.
tion of the report was written, the
has a responsibility in the total pro-
Except one.
other floors have been included in
gram plan-the laundry workers
The fifth floor, freshly painted in
the program with comparable results.]
through to the director.
happy colors, is alive with murals
The changes encompass the colors,
First and foremost, though, the
and artistic designs by art students
the light, the furniture, the living
change from immobility to forward
and community volunteers. A bright
space allotted each individual, the
motion on the developmental scale has
corridor leads to a door with a pro-
person-oriented design of that space,
been accomplished through the es-
nouncement attached: "CAUTION:
dynamically and effectively used.
tablishment of an ultimate goal: Lib-
Human beings inside. Handle with
Words that shape attitudes are
eration of the person.
care!"
changed.
The door opens onto action and
Hospital, ward, patient, retardate
interaction, involvement, motion. A
-all the inappropriate terms are be-
formerly nonambulatory boy of about
ing removed from signs as well as
eights walks up to greet the visitors.
He plunges a hand into the pocket
of his corduroy trousers with such
vigor that they begin sliding to half
mast, but he hikes them up. An aide
in a blue pantsuit smiles at him as
she rushes past to catch a frisbee re-
leased rather than thrown by a little
shoes, they, like all the others on this
the persons living on the fifth floor
escape from a depressing scene,
girl seated on a mat. Near her on the
floor, are fully clothed.
are no different from those of the
either down the corridors or to be
same mat another aide is on his
A few are in wheel chairs getting
patients on all other floors. A few
absent for days at a time.
knees taking a blind child through
ready to be taken to the swimming
months ago, they, too, were lying
There is no appreciable increase
the motions of tumbling.
pool. Everybody on this floor gets
motionless in rows of cribs.
in the cost of the fifth floor center of
A small group of children and
out at least twice a week.
The staff has not been increased
action over the wards of inaction be-
adults doing art work at a table are
The walls are in attractive pastels,
for the fifth floor. When they weren't
low.
so involved with one another that
decorated with residents' art work
changing diapers or washing or feed-
The changes are not due to a dem-
they are oblivious of the visitors.
and posters proclaiming: "If you
ing the patients, they used to sit and
onstration grant, and these persons
Some are staff, some residents. It is
hear the music, join the singing." "No
fold diapers like the staff on other
on the road to mobility and selfhood
impossible to differentiate from the
bird soars so high as he does with
floors. The staff is more in evidence
will not slip back to being immobi-
clothes they wear. There are no uni-
his own wings."
on the fifth floor, but it is because on
lized, faceless forms in a deadend
forms.
Basically, the needs as well as the
the other wards the staff tends to dis-
hospital after a spurt of progress.
In a side room, two young children
physical and mental competencies of
appear for long periods during the
are asleep in cribs. But they are there,
day, to give in to the human urge to
because it is nap time, and they are
A total learning experience is tak-
taking their naps. Except for their
ing place here for residents and staff
17
16
STEP BY STEP TOWARD FREEDOM
"Can you help me
He likes gardening and yard work.
her record, and often did.
So the goal for him is a job as a
She was 56, a tiny, bird-like wo-
get out?"
yard man in an apartment complex
man who had been in the institution
for elderly persons, situated conveni-
since she could remember.
ently near the group home. Mean-
For the past 12 years she had
Age is no deterrent to further de-
while, he is making the transition in
been assembling components for hair
velopment and successful community
a sheltered workshop run by the
driers, and she was proud of her
living, even after nearly a lifetime of
county ARC.
work. "Nobody here can work any
institutionalization, for some people.
"This is really living," he says, as
faster than me," she boasted, tilting
"Can you help me get out?" The
he draws up a chair for a checkers
back her head with mock arrogance.
request came unexpectedly from a
game with the other men after din-
A candidate for community living?
man raking up leaves on the institu-
ner.
She could make money with her skills.
tion grounds. He had not been on the
"They better not try to get me out
list of residents to be interviewed by
of here." She bristled at the thought
a county Association for Retarded
Citizens group, there to interest resi-
of moving. "This is my home. I'm
dents in community living.
staying right here. And you'd better
His hair was white, but his step
"I'm staying here."
believe it."
firm, despite his 70 years. "I don't
When Miss Bessie was placed in
know how long I've been here," he
the huge, isolated asylum, as they
told the group. "Long as I can re-
Some move toward independence
termed State schools in those days, it
call."
and freedom of choice with ease.
was thought to be the ideal life for
He had heard from others about
Some hold back, shackled by re-
retarded people.
the program of training being of-
straints too ingrained to overcome.
Miss Bessie still thinks so. And
fered, and decided that he wanted to
Miss Bessie's production rate out-
for her, it is. Life "outside" would
be a part of it. In a very short time,
distanced even the youngest worker
defeat her.
he was accepted as a candidate. For
in the sheltered workshop attached
the next month he went through the
to the State home for retarded peo-
evaluation tests, including social
ple. Every day she tried to better
adaptability. He passed with ease.
Now he is having the time of his
life, living in a group home with some
younger men.
19
STEP BY STEP TOWARD FREEDOM
Out of the nest
In this case, it was the parents who
"If I get a job will I
needed counseling more than their re-
tarded daughter. After several ses-
have to leave here?"
Janice is 26. She has lived at home
sions they began to see that she could
with her family all her life. The only
grow more as a mature person if she
time she was away from home over-
were out of the nest. So she's now liv-
The staff of the group home
night was when she spent a week at a
ing in a group home and working a
couldn't figure what was wrong with
camp for retarded adolescents.
few hours a day giving lunch to chil-
Harold. He was the most helpful and
For six years she has worked in
dren in a nearby nursery school.
affable of the seven men who lived
a sheltered workshop doing routine
Gradually the time she spends there
in the home. No one was more happy
jobs, and generally being pleasant,
will expand.
than he was to get out of the institu-
shy and quiet.
She is making plans to move into
tion. But he resisted all efforts to
Perhaps that was her problem. She
her own apartment whenever she is
place him in a job.
was so agreeable that she was no
financially capable of the move. A
Finally, he confessed. "If I get a
problem to anyone, so she was
friend at the workshop will share the
job will I have to leave here?"
passed over when chances for ad-
apartment.
Reassured that he would be in-
vancement were being offered.
In her spare time, Janice is now
volved in any decision concerning his
One day a teacher in the program
trying to organize a volunteer group
life, and offered freedom of choice,
had a long talk with her and found
to go on regular visits to a State
he stopped worrying. A week later
Michael Day
she liked the idea of working with
school and provide friendship and
he had a job.
people-"doing things to help them."
recreation for the residents.
Home, for him, was the group
Evaluations showed she was cap-
- Long-range goals for Janice are
home-at least for the present time.
able of developing beyond her pres-
being revised, with the sights raised,
ent job, and also seemed to be ready
based on her short experience with
for moving out of the protected en-
new-found freedom.
vironment of living at home at the
age of 26.
20
21
LOWERING THE RISKS/EASING THE BURDEN
The positive approach
need for further research and appli-
strongly indicate the need for further
pregnancy, they are studying tissue
cation of present knowledge.
positive action directed toward pre-
implanted in the mouse uterus.
So, if preventing handicapping
vention of retardation and avoidance
"A severe disruption at this very
The best hope for reaching the
conditions is the best hope of free-
of dependency, so that more may
early stage would lead to death," said
goal of freedom is prevention of
dom and avoidance of dependency,
benefit.
Dr. Spaulding, "but a less severe one
the handicapping conditions that can
early and intensive treatment is the
In order to hear from some of the
may still distort the entire growth and
rob individuals of their freedom and
second best hope.
people who are directly involved in
development of that individual from
keep them dependent throughout
A handicap can usually be made
these fields, PCMR held a Regional
there on."
their lives.
much less severe when treated in the
Forum in the Fall of 1973 at Kansas
The Medical Center is also inves-
Across the nation, research is delv-
early developmental period. When re-
City, Missouri, with participants from
tigating placental transfer in goats,
ing into the factors that promote
tardation is the result of sensory dep-
Kansas, Missouri, Iowa and Nebraska.
with exactly dated pregnancies. They
healthy human development or those
rivation, research has indicated that
Other Forums are planned for the
are especially looking into placental
that disrupt development and result
early childhood stimulation and im-
future.
transfer of various significant drugs,
in damage that is often irreparable.
proved environment can often cor-
The material in the next few pages
to determine the effect of the drug on
The health and environment of both
rect the condition.
is based on relevant, selected presen-
the goat fetus, and the dosage rela-
mother and father, even before con-
For many children, it is already
tations made at the Forum. They start
tionship.
ception occurs, is of importance, as
too late for such remedial interven-
at the beginning of the chronology of
Dr. Spaulding also discussed the
is the genetic inheritance they will
tion. But it is still possible to lessen
prevention, with research on repro-
Medical Center's fetal diagnostic
pass on to the child.
the handicap considerably, and make
ductive biology. They then move on
studies, using the technique of am-
From conception on to completion
these children less dependent than
to attempts to prevent disorders in
niocentesis, to draw fluid from the
of pregnancy, development and dif-
they would be if left untreated.
high-risk pregnancies; through an
embryonic sac. [Many university
ferentiation of tissues and organs, as
Many such research and treatment
early intervention program for in-
medical centers and some other large
well as growth (represented by in-
programs are going forward across
fants and young children and their
medical centers are now offering am-
crease in mass) are major determi-
the country. Results of the work
parents; and, finally, to an inten-
niocentesis and prenatal diagnosis to
nants of the eventual intellectual and
sive, short-term program for severely
families.] He stressed the necessity
emotional functioning of the indi-
handicapped children to prevent their
for an experienced obstetrician to
vidual.
long-term institutionalization.
perform the amniocentesis; the need
Though research has uncovered
for a competent lab to do the chromo-
many causes of disorders beginning
some, or biochemical, studies; and an
in the prenatal period, discovering
"The entire potential
Center, reviewed the Center's re-
expert in genetic counseling to inter-
the cause is but one step in the proc-
search into various stages of prenatal
pret lab results and to offer a prog-
ess of correcting the problem. Every
in one cell."
growth. In every stage of pregnancy,
nosis if the individual is diagnosed as
baby born with mental and/or physi-
he explained, a number of events
affected.
cal disorder is tragic evidence of the
must occur in sequence in order to
What, for example, will it mean in
"There is a moment in time when
produce a healthy child.
the life of the person if he is found
the entire potential of the individual
First, researchers at the Medical
to have Down's syndrome?
is in one cell, a single microscopic
Center are exploring the relationship
"Counseling," he said, "has to be
cell invisible to the human eye," said
of hormone levels to ovarian function
connected with some way of taking
Dr. John Spaulding in the opening
in order to learn how conception is
action. If the pregnancy is to be ter-
words of his presentation at the
enabled to take place.
minated, an expert obstetrician is
PCMR Forum.
Then, to determine the elements
Dr. Spaulding, Director of the
that affect the survival very early in
Children's Rehabilitation Center at
22
the University of Kansas Medical
23
LOWERING THE RISKS/EASING THE BURDEN
needed. If the pregnancy is to be con-
longer and longer periods because
"When this test is done in the
"The most attractive
sugar, infection, and jaundice when
none were. The team transported
tinued, there must be follow-up pro-
they seem to like to hear the music
incubator, it has shown that the
it is severe enough for the bilirubin
four babies in 1968. During 1973
grams."
and "they will work (suck) for it."
background noise in there is
isolette ever made."
(which causes jaundice) to reach a
they transported 250 babies.
In the area of neonatal physiology,
When they reverse the process, said
deafening. The inside of an in-
certain level in the blood and enter
By taking these extra measures,
he described tests being done on new-
Dr. Spaulding, and turn off the music
cubator is a loud, noisy, drip-
the brain-one of the common causes
they initially believed they could re-
born infants that may indicate wheth-
as soon as the child sucks, he will
ping, roaring place. One ques-
From five to twenty percent of
of cerebral palsy.
duce the number of deaths by half,
er or not the child can hear. Ear-
then suck less and less and less-in-
tions whether that's very good
all women who are pregnant will
One of the methods Dr. Van Leeu-
and prevent some of the brain dam-
phones are placed on the baby, and
dicating, it would seem, that he can
for the nerves of the infant."
have an infant who is at some de-
wen and his team use to prevent
age and disability. The results, how-
a pacifier put in his mouth. The paci-
hear.
gree of risk, Dr. Gerard Van Leeuwen
disability in high-risk newborns is a
ever, have exceeded the expectations.
fier is connected to sophisticated re-
John Spaulding, M.D.
told the PCMR Forum. The range is
transport isolette which carries its
Dr. Van Leeuwen reported that a
cording devices. The researchers then
related to the socio-economic struc-
own oxygen and can be used in a car
1949 to '53 long-term survival study
induce the child to suck, and feed
ture of the area.
or airplane. This equipment plus a
in Colorado on 91 babies who
sound into the earphones—a mixture
The six major causes of death or
box of medication and supplies are
weighed four pounds or less at birth
of classical and folk music. The in-
brain damage in babies, he said, are
all that is needed to provide total care
indicated that 66 percent had handi-
fants can be conditioned to suck for
low birthweight, maternal diabetes,
of the infant from the moment he is
caps. One-third of these handicapped
maternal toxemia, blood incompati-
picked up at the emergency entrance
children were severely mentally re-
bility, congenital malformations, and
of the referring hospital or the home,
tarded or had cerebral palsy or were
complications of pregnancy.
and brought to the newborn inten-
blind.
Dr. Van Leeuwen, who is Profes-
sive care unit at the University of
In the Nebraska program, he said,
sor and Chairman of Pediatrics at the
Nebraska Hospital.
serious handicaps are down to about
College of Medicine, University of
6 percent of the survivors. The sur-
Nebraska at Omaha, is a "practi-
"Those of us who are in the
vival rate has doubled.
tioner of newborn medicine," a spe-
business of preventing mental
In 1973, he said, at least 75 per-
cialty that requires at least two addi-
retardation and developmental
cent of the infants under four pounds
tional years of training after pedi-
disabilities and those who are
in their program appeared to be men-
atric residency.
treating the problem often don't
tally normal and have minimal devel-
In small communities, he reported,
realize that we're in the same
opmental disabilities-despite the fact
there is usually one doctor who de-
business."
that these were all high-risk infants.
livers the mother, and if the mother
Dr. Van Leeuwen added that there
has difficulty, this means there is no
is still a possibility that a number of
one there to take care of the baby.
"Probably the best way to move
these children may have minor dis-
Therefore, Dr. Van Leeuwen and his
the infant, however," Dr. Van Leeu-
abilities that would not be discovered
team emphasize the importance of a
wen said, "is inside the uterus."
until they may have learning prob-
second, trained person to resuscitate
He called the uterus "the most at-
lems at school.
the baby.
tractive transport isolette ever made.
Cost for the intensive medical care
He pointed out a few of the dan-
It hardly ever gets dropped. It never
of a high-risk newborn infant is of-
gers at the time of delivery. Too
runs out of electricity, and it has a
ten $5,000, he said, and frequently
much oxygen may cause blindness
number of other advantages. It keeps
reaches $20,000, paid for in a num-
and lung damage; not enough may
the baby oxygenated and warm."
ber of ways-insurance, parents, the
cause brain damage. Letting a baby
He reported that during the first
State. State dollars have not been
get cold also may produce brain dam-
six months of 1973, 75 mothers were
used for air transport, however. "This
age, he said.
transferred to the hospital; in 1963
is a small price to pay for a normal
Other causes of neonatal brain
brain and a normal body," he con-
24
damage that he cited are low blood
cluded.
25
Goals for each child
The purpose of the Infant Devel-
opment Center, Lake Quivira, Kansas
City, Kansas, is to provide develop-
mental education immediately upon
identification of high-risk or sus-
pected atypical infants, and to pro-
vide supportive and informative coun-
seling for the family. The program
was described to the PCMR Forum
by the Center's director, Lee Ann
Britain.
"The impact of the birth of a
handicapped child on the fam-
ily is a devastating experience."
"We like to get to the mother
right away and give her emo-
tional support, and let her meet
other mothers in similar circum-
stances."
"The mother, or whoever has
the primary care of the child,
is the developmental educator,
trained by the Center's staff."
"Highly individualized goals are
set for each child by the staff
in the development of gross
motor, fine motor, adaptive,
language, and personal-social
skills."
LOWERING THE RISKS/EASING THE BURDEN
"If we don't do anything
their child and possibly avoid the
hyperactive, or not toilet trained. The
The teachers are also advised on the
for this child now
"
need to place him in an institution.
schools can't serve these children, he
child's needs.
"The difficulty of rearing a re-
said. So the clinic admits them for
Dr. Hussain told of an 8-year old
tarded child in the home can be
two or three months, has orthopedic
child with Down's syndrome, who
reduced through early intervention in
surgery done, or toilet trains the
was in the short-term respite care
To prevent long-term admissions,
behavior management and special
child, or provides behavior modifica-
program. At the time of admission,
Woodward State Hospital-School,
therapy techniques," Dr. Hussain
tion. Then they train the parents in
she had no independent self-help
Woodward, Iowa, has started a
said. "When we see a child in the
physical therapy or behavioral tech-
skills. Three months later when she
short-term intensive treatment unit
Diagnostic Clinic with serious prob-
niques, or whatever is needed to con-
was discharged, she was able to feed
and respite care program for chil-
lems, we know that if we don't do
tinue the treatment. The child can
and dress herself and meet her toilet-
dren from birth to 12 years of age,
anything for this child now, he'll be
then live at home and go to school.
ing needs independently.
Dr. S. B. Hussain, Clinical Director,
a long-term institutionalized person."
All of the children given the inten-
reported in his PCMR Forum pres-
He cited examples of children with
sive, short-term treatment at the unit
entation.
"legs like scissors," children who are
are back in their communities and
The expressed purpose is to assist
progressing well, according to Dr.
parents in the home management of
Hussain. Left alone, he said, these
are the sure candidates for long-term
institutionalization.
28
29
PCMR BELIEVES THAT:
Mentally retarded people are capable of continuing
development
The fact that people who are retarded can develop with intensive care and under
favorable environmental conditions has been effectively demonstrated. A hostile environ-
ment, however, can block progress even when the internal barriers to growth and development
have been removed.
In order to promote a more receptive environment in which persons who are retarded can
develop in the freest possible way, with the opportunity to exercise the same rights as other
citizens, in 1973 PCMR:
Held the first national conference on The Mentally
Cooperated with the Law Enforcement Assistance Ad-
Retarded Citizen and the Law to help educate the legal
ministration in a Southeastern Regional Conference on
profession and the public to human and legal rights to
the Mentally Retarded Citizen and the Criminal Justice
which retarded persons are entitled;
System;
Assisted in the preparation of two publications resulting
Joined with the American Association on Mental Defi-
from the legal rights conference: One a professional
ciency in a regional conference on legal rights in
legal reference document; the other an action-oriented
Morgantown, W.Va.;
report for a general audience;
Participated in a Conference on Services for the Re-
Promoted acceptance of retarded citizens in communi-
tarded Adult held in Santa Barbara, California;
ties, and emphasized their right to choose a place of
residence, through radio and TV public service an-
Published a professional paper on Experimental Studies
nouncements, distributed nationwide;
of Memory in the Mentally Retarded, which explores the
learning process and possibilities for accelerating it;
Launched a joint effort with architects to improve
building codes, zoning regulations, and other barriers
Took leadership in exploring the effects of the energy
to community living;
shortage with several private and governmental or-
ganizations serving retarded persons, and designed a
Contracted for updating the PCMR publication that was
survey on the impact of cuts in heating fuels and gaso-
so influential in promoting the normalization principle,
line on mental retardation programs;
Changing Patterns in Residential Services for the Men-
tally Retarded;
Proposed to the Secretary of DHEW ways and means to
meet the urgent need to develop. executive manpower
Directed preparation of a monograph on planning com-
for mental retardation and other human services pro-
munity services for mentally retarded persons living
grams.
away from home;
31
PCMR BELIEVES THAT:
Corrective measures introduced in early childhood can
Committee members actively par-
ticipated in the programs at the Kan-
reduce the severity of the handicap and
sas Center for Mental Retardation
and Human Development at the Uni-
sometimes reverse its course
versity of Kansas in Lawrence, dur-
ing a visit in conjunction with a Re-
gional Forum in 1973.
Research data strongly indicate that the first five years of life are crucial in the development of each
individual. This is especially true of children born with a handicap. If problems are detected and
treated in these early years, the damage can often be considerably lessened. In some cases, the
course of the condition can be reversed.
To encourage early detection and correction of handicaps, and to publicize the most recent
advances, in 1973 PCMR:
Published a definitive monograph on Screening and As-
sessment of Young Children at Developmental Risk, an
extension of the theme of a 1972 PCMR conference on
Nan Ulle beating the drums in music therapy.
the subject; (Available only from Superintendent of
Documents, GPO, Washington, D.C. 20402. $2.40. SN
4000-00294.)
Kenneth Robinson astonishes a friend with his
Ralph Ferrara gives a friend a head start.
block-building skills.
Completed plans to cosponsor a Conference on Infancy
and Early Childhood Education, with the Association for
Childhood Education International, and several other
agencies, to be held in the spring of 1974;
William Robertson teaches
reading readiness.
Published a professional paper on Malnutrition, Learn-
ing, and Intelligence, summarizing research data on the
effects of malnutrition on brain growth and learning
ability.
g
DE
a
h
1
Dr. Henry Cobb lends a hand with phonics.
u
32
PCMR BELIEVES THAT:
Prenatal and neonatal biomedical intervention can
There was other Committee business in 1973 that touched on each of these areas.
Members and the executive director addressed numerous groups and attended conferences in this
prevent many forms of mental retardation and
country, Europe, England and Latin America. They testified before committees; they were
related handicaps
interviewed on radio, TV, and for newspapers and magazines.
Some 1973 Committee activities that touched on all areas in the mental retardation
Reproduction is an intricate process. One extra chromosome in the genetic inheritance, a virus
field included:
contracted by the mother at a certain time in the pregnancy, an untreated infection, these and
many other factors can cause the child to be damaged.
A Mid-Atlantic Leadership Training Institute held in
Richmond, Virginia, which brought together people
To stimulate advances in the techniques of prevention of mental retardation, and to
from Pennsylvania, Delaware, Maryland, Virginia, West
Virginia, and the District of Columbia, to report and
inform the public on preventive measures, in 1973 PCMR:
discuss progress and problems in mental retardation
in those States;
A Midwest Regional Forum held in Kansas City, Mis-
souri, at which representatives of Kansas, lowa,
Missouri, and Nebraska gave presentations and dem-
Brought together a group of leading geneticists to
onstrations of their programs to aid persons who are
review the state of the art and to identify methods of
mentally retarded and to prevent handicapping condi-
meeting needs;
tions;
Produced a series of radio spot announcements in
Advance meetings to plan for a major Inter-American
English and Spanish to inform prospective mothers on
Conference on Mental Retardation to be held in 1975,
how to increase their chances of having healthy
in which PCMR will participate.
children.
Louise Ravenel and
PCMR Executive Director
Fred Krause get involved.
Marianna Beach offers a reward for improved behavior.
Dr. Cecil Jacobson observing
a pre-school class.
34
35
CMR MEMBERS 1973
Marianna Beach
Henry V. Cobb, Ph.D.
Robert A. Collier
Frank R. DeLuca
Richard J. Elkus
Ralph J. Ferrara
Caspar W. Weinberger
Chairman
N. Lorraine Beebe
Vice Chairman
Michael R. Gardner
Melvin Heckt
Cecil B. Jacobson, M.D.
James N. Juliana
Lawrence A. Kane
Aris (Bob) Mallas
The Secretary
of Labor,
Ex Officio
The Director of
the Office of
Economic Opportunity,
Ex Officio
Hon. Thomas J. Meskill
Lloyd E. Rader, Sr.
Louise R. Ravenel
William B. Robertson
Kenneth S. Robinson
Will Beth Stephens, Ph.D.
Margaret B. Ulle
Miriam G. Wilson, M.D.
A FINAL WORD FROM THE EXPERTS
PCMR STAFF 1973
OFFICE OF THE DIRECTOR
CONSULTANTS
"Not everybody's the same."
The President's Committee wishes
Fred J. Krause
Harold S. Barbour, Ed.D.
to express its sincere appreciation for
Executive Director
Leo F. Cain, Ph.D.
the gift of time and talent by Andrew
In a completely spontaneous, frank discussion, a group of eight ado-
Helen C. Caldwell
J. Molnar, Vice President and Art
lescents sat down together one evening in 1973 and talked about mental
Julius S. Cohen, Ed.D.
Ruth Ann Metzger
Director of Ceco Publishing Co.,
retardation. All had been in special education classes, all have grown up
Louis Z. Cooper, M.D.
with the label "retarded."
Troy, Michigan.
The Committee also wishes to
Their conversation was video-taped at the Mental Retardation and
PROGRAM OFFICE
Ross H. Copeland
thank the numerous individuals in
Child Psychiatry Media Unit of the Neuropsychiatric Institute, Univer-
Patrick J. Doyle, M.D.
the following facilities who contrib-
sity of California, Los Angeles. With UCLA's permission, these quotes
Allen R. Menefee
uted many of the photographs, much
were taken from portions of the discussion.
Program Coordinator
Maurice Flagg
of the information and most of the
Alfred D. Buchmueller
Erwin Friedman, Ph.D.
inspiration for this report.
Elizabeth S. Bush
James M. McCormick
Dennis E. Haggerty, LL.B.
The National Children's Center,
"I think when we were being born,
"To accomplish something takes
"I realize that I'm 21 and I
want
Michael J. Offutt
Edward L. Johnstone
Washington, D.C.
Mother Nature made some mistake
you twice the effort.
To get a
to have a car and
all these
Linda E. Walder
The Occupational Training Center,
and it damaged part of the brain
C, I would have to work like an A
things. And yet I get uptight about
Paul A. Rittmanic, Ph.D.
Washington, D.C.
William H. Wilsnack
Sunland, Tallahassee, Florida
and something didn't turn out right,
student."
it with myself I'm my own worst
Gwendolyn R. Coleman
George Tarjan, M.D.
Sunland, Marianna, Florida
and it held us back."
enemy. I just told the guys the other
Montgomery County (Maryland)
day, 'There's only one person in
Gail M. Gorman
John D. Thompson, M.D.
Association for Retarded Citizens
"Once I sat down and cried
this apartment that I don't get along
Pierrette A. Spiegler
Thomas A. Tucker
University of Kansas Medical Center,
Kansas City
"A different thing happened to
because I was in a gym class and
with: Me!'
College of Medicine, University of
each of us."
I had a problem. Everybody threw
INFORMATION OFFICE
Nebraska
rocks at me and ran up and hit me
Infant Development Center, Kansas
and I turned around and hit them
"The emotion does figure in it. It's
Raymond W. Nathan
City, Kansas
"Not everybody's the same."
back. The teacher walked around
reversed. Because you want to do
Director of Communications
Woodward State Hospital School,
Woodward, lowa
laughing and showing this roll
things but you know you can't. And
Martin Bouhan
The Hospital for Sick Children,
book. It said FFFF. Eventually I
you keep on fighting it and you
Mary Z. Gray
Washington, D.C.
"It depends on the person-on
got out of this class,
I was put
keep on pushing harder and harder
Mental Retardation and Child
how much they have on the ball."
in a special gym class where some
to get there faster and faster."
Nancy O. Borders
Psychiatry Media Unit of the
people had problems and where
Beverly M. Keith
Neuropsychiatric Institute,
University of California, Los Angeles
people were more grown up. Later
Mattie A. Smith
Illinois Braille and Sight Saving School,
"Like my cousin Russell. All the
on, I went to a doctor for some
"We'll have problems with holding
Jacksonville, III.
time, 'I can't do this,' and 'I can't
help, and I found out what the
certain types of jobs. Like I know
MANAGEMENT OFFICE
do that.' I tell him, 'Russell, yes
problem was:
Very poor visual
I'll probably never make it to be
you can. You can, too'
perception. That was the thing that
an engineer.
The question is
Stanley J. Phillips
was holding me back."
still open."
Management Officer
"Like me. I try because I want to
Ruth G. Gray
get ahead. In 9th grade I got out of
"I wanted to be a social worker.
Patricia S. Kramer
Special."
But it would take me 14 or 15 years
Larry Lane
to do it. So, realistically.
38
39
"You have to face the fact that
"You gotta evaluate the youngster
"You never stop learning. You learn
"You have to have the experience
"And later on in life, nobody's
"There comes a point when you
that's one thing you can't do."
on an individual basis. Not compare
things every day of your life."
of knowing how to live when Mom
going to teach you how to be
have to let go
when you've
one to another, like a tennis match."
and Dad aren't around. Because
independent and what to do."
got to get them their freedom.
one day they die, too."
Slowly, but surely, they'll get their
"You know you are [retarded], and
"Let the kid go out and make his
independence."
everybody calls you it.
But you
"But discipline should be the same
own mistakes and learn from them."
don't want to say it. You know you
for all children."
are within. It chops you down."
"They'll grow out of some [of the
"Even though they* may have
mental retardation], but if the
"It's more the way it is said. It's
learning problems, they're human
mother protects them, they'll never
not just that word. It could be'any
beings just like everybody else, and
grow out of it."
word, really."
they deserve basically the same
treatment as any other human
being."
"They'll go into a shell. A live
"I think parents should tell the kid
vegetable."
what is wrong with them. They're
going to have to find out sooner or
"The object is to motivate them to
later."
try harder and to encourage
"You aren't going to learn anything
them."
if somebody's doing something for
you all of the time."
"Sooner is better than later."
"My mother will always see me as
"You can't hide it from the kid
* Some of the speakers use "they" in
a baby, no matter how old I get."
because he's going to find out
referring to other retarded persons.
eventually anyway that there's
something wrong-like I did."
40
Give me a fish
and I eat
for a day.
Teach me to fish
and I eat
for a lifetime.
PRESIDENT'S COMMITTEE ON MENTAL RETARDATION
WASHINGTON, D.C. 20201
OFFICIAL BUSINESS
POSTAGE AND FEES PAID
U.S. DEPARTMENT OF H.E.W.
U.S.MAIL
HEW-391
DHEW Publication No. (OHD) 74-21001