Keynote and Welcome Presented to the National Mental Retardation Prevention Showcase and Forum, Atlanta, Georgia
This speech assessed progress made in rehabilitation and assistive technologies designed to prepare Americans with mental
retardation for independent living. During the late 1970s and 1980s, mental health became a concern of the U.S. Surgeon General
and other public health officials in the United States, who proposed that the methods of public health, in particular epidemiological
study, could be applied to mental health as well.
Number of Image Pages:
15 (1,067,709 Bytes)
1982-09-15 (September 15, 1982)
Koop, C. Everett
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Medical Subject Headings (MeSH):
Congenital Birth Defects and the Medical Rights of Children: The "Baby Doe" Controversy
"Keynote and Welcome Presented to the National Mental Retardation Prevention Showcase and Forum, Atlanta, Georgia"
Deputy Assistant Secretary for Health and Surgeon General
US Department of Health and Human Services
Presented to the National Mental Retardation Prevention Showcase and Forum
September 15, 1982
(Greetings to hosts, guests, etc.)
The program for the international Summit and for this national showcase and forum give ample testimony to our continued commitment
to learn more about mental retardation and, to the extent possible, prevent its occurrence. Since the last summit, some five
years ago, the research community and the health care and social services community have made tremendous strides in expanding
our knowledge base and extending our range of service options.
I think we are doing a much better job than ever before in research and in providing assistance to the mentally retarded and
their families. We have every reason to be hopeful and to be optimistic . . . but with a touch of caution nevertheless.
Mental retardation still poses more questions that we have answers. Its basic mechanisms are still wrapped in mystery. And
as we continue to probe, we are sometimes overwhelmed by the implications of the field of study before us. This single area
of research and study can reveal so much to us of the nature of the human condition -- the complexity . . . and the joy .
. . and the burden.
Thinking about this aspect of our work, I was reminded of the remark by the philosopher William James. He tried to search
beyond the bright face that most people present to the world. James felt that "In the deepest part of all of us there
is a corner in which the ultimate mystery of things works sadly."
For centuries, when confronted by mental retardation, people have been puzzled, frustrated, and saddened. Gradually, over
time, those feelings have been changing. Today, even though we still have much to learn about mental retardation, we are far
more understanding and accepting of the mentally retarded. What's more, we now think in terms of their integration into
the normal life of our society.
From my reading of the proceedings of the first international summit, I think this feeling was evident in 1977. It is certainly
with us today. It is also evident in the way the President's Committee on Mental Retardation approached its 1981 annual
report to the President. I like the positive, well-documented case made in that report for greater integration of mentally
retarded persons into the American workforce. As Secretary Schweiker says, "Given training and employment, retarded citizens,
once thought of as being dependent for life, can reach increased levels of social and economic independence, which may equal
those of average citizens."
The 1981 report of the PCMR is one example of our commitment to bring more of our mentally retarded citizens into the mainstream
of American life. Fortunately it is not the only example. This theme can be read in a variety of reports of what government
has been doing as well as what it hopes to get done. Just such a document that points to the future if the five-year research
plan for the National Institute of Child Health and Human Development.
Of the 15 research goals for mental retardation in them plan, four are dedicated to "amelioration and rehabilitation."
We hope that the new knowledge developed under this heading should further enable retarded persons to make "an optimal
adjustment to community life," in the words of the NICHD research steering committee.
Those are very encouraging words. They demonstrate that the marriage between the biomedical and behavioral sciences is not
only intact but it is being continually strengthened by the Institute, its contractors and its grantees. Granted, there is
still much that we need to learn about Down's syndrome and the "Fragile X Syndrome, " about cytogenetics and developmental
neurology. But a human being is much more than just "genetic aggregate" or a network of information transmission systems.
The late Dr. Rene Dubos wrote that "Each human being is unique, unprecedented, unrepeatable." But Dubos was even more
specific. He said we recognized each unique human being "By his voice, his facial expressions, and the way he walks --
and even more by his creative responses to surroundings and events." In other words, people do interact with their human
and physical environments . . . and the way they interact tells us a great deal about who they are.
This level of sensitivity lies much closer to the source of the "mysteries" we pursue in medicine, what Dubos calls
"the science of human life." Fortunately, our colleagues in the NICHD are aware of that and the President's Committee
knows it, too. How important that understanding is for the future . . . the decades ahead . . . when society will garner the
benefits of today's research and detection services for the mentally retarded.
I am emphasizing the biobehavioral aspect of research and service because that's the basis upon which a great deal of
our prevention effort is mounted. It more closely reflects the total human experience. For example, if we identify a link
between certain maternal nutrition deficits and the appearance of mental retardation in offspring, how then do we convince
pregnant women to maintain a certain nutritional balance in their diet? Again, after we identify the link between herpes and
injury to the developing fetus, how do we break the chain of herpes transmissions among potential parents?
These questions -- and many others like them -- present both the biomedical and behavioral challenge to the public health
practitioner, particularly those of us concerned with the retarded.
The Department of Health and Human Services, with the strong support of the President, is pursuing this type of overall prevention
and health promotion strategy. While some elements of the strategy may be more appropriate for the aged or for adolescents,
the number of elements directly relate to the prevention of mental retardation or to preventing or controlling the stresses
that may occur among a retarded person's family.
It is not common these days to find a government program that is new and is also expanding. Yet, that is the nature of the
commitment that the prevention program has in our department. As you know, the essential strength of the research effort in
the Public Health Service is being maintained. That effort, however, also includes the development of new knowledge related
Let me amplify that statement with the following few numbers:
- The research budget for the National Institutes of Health is projected to rise by about $109 million in fiscal 1983, providing
continued strong support for biomedical and some behavioral research . . .
- The research budget for the Alcohol, Drug Abuse, and Mental Health Administration, where most of our behavioral and some
of our biomedical research is carried on, is projected to rise about $27 million in the next fiscal year . . .
- But all research, service, and information activities combined but are related to the prevention initiative will rise about
$870 million, a 4.5 percent increase over last year -- and this all comes at a time when most federal activities are being
held at present levels or being trimmed to lower, smaller levels.
The clear message from this should be that the administration is truly putting its money where its rhetoric is.
Secretary Schweiker promised that, under his stewardship of our department, prevention would be put at the very top of the
federal health agenda. And he's done exactly that. He is also invited the private sector -- non-profit and profit-making
organizations alike -- to join in and help. And there is already a growing list of professional, voluntary, and trade associations
that are taking part in this truly national strategy of prevention and health promotion.
As for maternal and child health in particular, the Public Health Service is one of more than 50 national organizations who
have joined together in a nationwide program called "Healthy Mothers, Healthy Babies." This unusual coalition is following
a six-point program emphasizing prenatal care, good nutrition, and good follow-through for medical and social services as
may be required following delivery.
In 1985, with the help of the "Healthy Mothers, Healthy Babies" program and other efforts around the country, we hope
to achieve two important goals. I think they are of special importance to this meeting. They are . . .
. . . to increase the awareness of women of childbearing age of the risks of pregnancy associated with smoking, including
the risks of lower birth weight, spontaneous abortion, fetal death . . .
. . . and to increase the proportion of women of childbearing age who are aware of the risks associated with pregnancy and
drinking, in particular the risk of delivering a child exhibiting "Fetal Alcohol Syndrome."
But smoking and immoderate drinking are not the only preventable agents adversely affecting a pregnancy. Other environmental
factors may come into play as well: toxic agents in the home or work place, lead levels in the air, and certain potential
contaminants of drinking water are others. Infectious diseases, including the whole range of sexually transmitted diseases,
are other factors. Accidents suffered by the pregnant woman while riding in a car or while at work -- or any serious physical
trauma, for that matter -- they also have an adverse effect, causing retardation of the infant. And the research is continuing
regarding the effects of genetic factors, prematurity, family poverty, and metabolic disorders.
Not all these can be prevented. I would go even further and say that probably none can be prevented by the government, although
federal action may well exert a strong influence on outcomes. I'm thinking, for example, of the government interest in
lead levels in the air, in maximum speed limits on interstate highways, and stopping the spread of infectious diseases through
mass vaccination, or in monitoring the workplace for the presence of teratogenic substances.
That may be true. But the primary federal role is in the support of research. In that case the lead agency would appear to
be the National Institute for Child Health and Human Development. In just five days the NICHD will celebrate its 20th anniversary.
In the course of its life so far, the Institute has made many contributions to improve maternal and child health in general,
and several specific contributions for the detection, control, or prevention of mental retardation.
It's appropriate to mention here, I believe, the development by the NICHD of the simple test in the newborn for PKU, or
phenylketonuria. Thanks to this simple test, mental retardation brought on by PKU can now be routinely prevented through careful
diet management. Recently, NICHD researchers also developed a screening method for congenital hypothyroidism. Now it is possible
to screen for PKU and hypothyroidism at the same time with the same drop of blood. At one time, these two conditions -- PKU
and hypothyroidism -- combined were the cause of about 300 cases each year of mild to severe mental retardation among the
newborn. Both causes are now preventable and treatable.
In the past few minutes I think I've touched, directly or indirectly, and most of the major prevention activities available
- Improved prenatal care . . .
- Specific attention to the special needs of the premature . . .
- Appropriate genetic counseling . . .
- Immunization, especially rubella . . .
- And the prevention of fetal alcohol syndrome.
It did not mention -- but I am aware of -- the need to guard against head injuries to children, which means the prevention
or, at least, the reduction of accidents, plus additional attention to the problem of child abuse or kernicterus prevention
with immunoglobulin after appropriate tests for Rh antibodies.
Although there is a wealth of material, already widely published, on the detection and identification of mental retardation
among the newborn and what we can do about it, there still very little in the literature that deals with the problems of preventing
other kinds of disabilities and diseases from attacking the mentally retarded child or adult. Added to this is the fact that
we still do not fully understand how the retarded and their families respond to all the usual lifecycle events.
It's possible that, along the way, we may have been guilty of compartmentalizing our interests . . . of maintaining too
narrow and too rigid a focus on the prevention of mental retardation per se. As a result, we know very little about reducing
the risks and health hazards to the retarded person who is in the midst of life. I think we may have missed exploring further
this "science of human life," about which Rene Dubos wrote so eloquently. In the next few minutes I'd like to
talk about this particular aspect of the prevention challenge . . . a challenge that is just beginning to take shape on the
A few moments ago, I mentioned that one of our main goals should continue to be the integration, to the extent possible, of
the mentally retarded into the mainstream of American life. I say "to the extent possible" because we must acknowledge
the exceptional challenges presented by the severely or profoundly retarded -- challenges which have more to do with elemental
survival than with such issues as socialization or the quality of life.
But, with just that one qualification, we need to look more closely at the kinds of risks that integration itself may present
to the mildly retarded. These persons are the vast majority, forming about 80 percent of the retarded population. It also
happens that a disproportionate number is found among populations disadvantaged by poverty or geography or who have been victims
of racial or ethnic discrimination. Nevertheless, I think we can -- and we should -- begin now to build a new strategy --
what I would call a "second strategy" -- of prevention that could benefit retarded persons as they become integrated
into the world of work, into the life of the families that come from, and into the lives of the families that they themselves
may choose to form.
I also think we might reap a kind of "bonus" from this "second strategy" of prevention and health promotion.
That bonus would be the potential for reinforcing a number of important prevention and health promotion concepts among the
people who employ or in some way support the retarded individual. They, of course, also represent a much larger population.
Let me offer this example:
We know that weight control is important for the retarded individual, since obesity can interfere with work and family life
and increase the risk of cardiovascular disease. But obesity is as much a health hazard to the person with an IQ of less than
80 as it is to a person with an IQ of 80 or above. If we can develop nutrition programs that are effective for the retarded,
establishing diet routines they will accept and follow, I should imagine the results would also influence and benefit the
caretakers and employers . . . the very people who would relay those programs to the retarded.
But I don't wish to dwell on this. It would be, as I indicated, only a bonus. The importance of this "second strategy"
is quite simply what it can do for the retarded person alone. In addition to nutrition I believe we need to adapt our entire
prevention strategy to meet the needs of the retarded individuals and their families wherever that can be done:
- We need to emphasize dental health, physical fitness, and exercise . . .
- We must be vigilant regarding the use of tobacco and alcohol . . .
- We must be equally vigilant concerning sexually transmitted disease . . .
- And we need to work cooperatively with employers regarding safety in the workplace.
I will admit that these are extraordinary challenges. For example, one of the most common tendencies among the retarded if
their inability to identify and resolve problems, to organize information in a way that isolates and responds to a particular
problem. The retarded also have serious memory deficits, shorter attention spans, and difficulty transferring skills and behaviors
from one activity to another.
You know these things, of course. But I am restating them here because they are skills that are directly relevant to health
promotion and prevention of disease and disability. And that's why the challenge is so great. Nevertheless, I believe
that if we could accomplish this "second strategy" of prevention among the retarded, we would at the same time learn
a great deal about how to deliver the essence of our prevention message to the general public. In other words, we might learn
quite a few things that would make our "first strategy" that much more effective.
In addition, I believe we need to know more about the dynamics within the families in which there is a retarded individual.
I know from personal observation that the overwhelming majority of those families are made up of loving and deeply caring
people. But I also know that they often function under great personal and interpersonal stress . . . that the same high-risk
health issues of alcohol, auto safety, and nutrition, for example, may be aggravated for those devoted caretakers.
We have concluded -- and correctly, in my opinion -- that an institutional environment may be a very poor answer for most
mentally retarded persons. And we've gone on to the next step. We have encouraged families to take care of the members
who are retarded. We've asked communities . . . neighborhoods . . . to be excepting of these human beings. But we public
health professionals have not always been forthcoming with the kind of help that makes family life really livable with a retarded
These are things we will know more about, as we put more resources into longitudinal studies, following retarded persons through
personal and family lifecycles, understanding the home-to-school transitions, the school-to-work transitions, knowing more
about their efforts to replicate family life for themselves. And in the course of reviewing the results of these long-term
studies, we might very well begin to build the framework for this "second strategy." We just might learn how to help
the retarded take advantage of the same basic knowledge of prevention as the general public and thus assure themselves of
an added dimension to the quality of their lives.
Underneath all these questions and concepts and strategies I believe there is a very powerful idea that is shared by everyone
in public health. It is the notion that each person is special is worth our very best . . . our most professional . . . our
most dedicated attention. Knowing someone's IQ level or some other score may help us determine how we might best deliver
our information or our service, but that knowledge cannot determine whether we will be of service. It is understood that we
will be of service . . . and that's important.
The great Spanish writer Ortega y Gassett phrased it in a special way, and I'd like to leave it with you this morning.
He said, "Living is precisely the inexorable necessity to make oneself determinate, to enter into an exclusive destiny
. . . " I think we in medicine and public health except the fact that every person -- whatever his or her IQ level or
mental competence -- everyone has an "exclusive destiny," something unique and special and one's own. If I'm
not mistaken, that is probably the core of this Second International Summit and National Showcase and Forum.