Summary of the Workshop [on Children with Handicaps and their Families]
This workshop took place on December 13 and 14, 1982, at Children's Hospital of Philadelphia, Pennsylvania.
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[United States Public Health Service]
Courtesy of C. Everett Koop.
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Medical Subject Headings (MeSH):
Home Care Services
Congenital Birth Defects and the Medical Rights of Children: The "Baby Doe" Controversy
Report of the Surgeon General's Workshop on Children with Handicaps and Their Families: Case Example: The Ventilator-Dependent
Child  (in The Reports of the Surgeon General)
In the summer of 1982, Surgeon General, C. Everett Koop, M.D., requested
that a Workshop on Children with Handicaps and their Families be convened
to seek out ways to lessen the handicaps imposed on disabled children and
to promote child and family self-sufficiency and autonomy. The workshop was
held at The Children's Hospital of Philadelphia on December 13 and 14, 1982. Over 150 individuals including handicapped
patients, their families and those involved with their care, were inviled to participate in tlie conference. An additional
100 people attended parts of the proceedings because of their interest in the welfare of handicapped children. All of the
participants paid their own expenses or were supported by their own institutions. Financial assistance was provided for participating
patients and parents.
The Workshop was called in response to the revolutionary transformations in
medical technology which have taken place during the past four decades. Discoveries and applications in the fields of antibiotics
and other drugs, in
vaccines, in computerized imaging procedures, in life-support and monitoring,
in laboratory techniques, and in the understanding of basic physiology have
altered the prognosis for innumerable children. The baby who is born minutely
premature, and the infant with severe congenital defects of the major organs
or skeleton, and the child who is damaged by severe trauma or infection can
now be supported by the combination of high technology and trained medical personnel. Many of these children now survive,
and most of those who do can look forward to a productive life, though often impeded by residual disability.
Modern American society has geared itself to almost unlimited support of this technology. But support for the essential services
systems outside the tertiary care environment has not kept pace for the increasing numbers of children whose lives are being
saved. Technology is expensive, essential support services are also expense, and funds are limited. Numbers of questions require
consideration. Can we maintain the technological support, yet improve the essential services with the funds available? Do
we need more funds? Can we find ways of redistributing the funds now being spent? Can we devise strategies for providing more
humane service with fewer dollars?
Those attending the workshop concentrated on the severe, specific problems of the ventilator-dependent child, and the findings
for this prototype were extrapolated for their implications for all handicapped children.
Presentations of programs in Illinois, New York, and Pennsylvania explored
problems and progress in meeting the needs of increasing numbers of ventilator-dependent children. A parent, Mrs. Betty Warteuberg,
presented a summary of
the life of her nine-year old son. She gave an account that recalled the years on ventilator support in an intensive care
unit, the disruptions to family unity, and of the remarkable progress made after his transfer to home care.
Following the presentations the participants were assigned to working groups where a mix of disciplines were used to assure
an interchange of ideas and
perspectives. Parents met insurance people, government executives saw and
talked with handicapped patients who were in wheelchairs and on ventilators,
executives of service organizations walked the acute and intermediate wards
of the hospital and interacted with children who have lived there all their
lives, 3 or 4 years; legislative aides participated with physicians and hospital
administrators. During this brief time a mechanism evolved which cut through
the intermediaries of typed letters, impersonal phone calls and layers of
A consensus of the working groups' deliberations tias reported to a final plenary
session, which marked the close of the workshop.
Synthesis of the Deliberations and the Surgeon General's Responses
The summaries and recommendations of the workshop groups reveal an overwhelming diversity of concepts and directions to be
considered. Many ideas arose repeatedly during the two days of discussion and can be grouped within broad categories:
. Developing regional systems of care
. Defining the scope of the problem
. Developing model standards for quality assurance
. Incorporating principles of care for children with disabilities into current education curricula
. Identifying areas of potential abuse
. Supporting research on the care of children with handicaps
. Improving financing of the kinds of care these children and their families need
While the workshop did not focus specifically on ethical matters, the effect of each participants set of social values was
always apparent during discussions. Interaction was influenced by each persons' values, conscious or not, stated
or unstated. Throughout the process one quality, humaneness, permeated all.
Humaneness, thus, was a common thread and a universal motivation. Every expression of thought seemed to emanate from the
theme, "what Is best for the child?"
Continuing Mission of Workshop
In declaring the workshop a success and accepting its recommendations the
Surgeon General expressed his belief that the eventual outcome will. be better
health care for a more diverse as well as an increased number of children with disabilities. Dr. Koop stated: "Where we
have it in our power, we hope to make their handicaps temporary, or, at least to ameliorate their severity. We will be using
a variety of techniques to continue the momentum which has developed at the
workshop, and I will report back to you as we make progress on the various
suggestions you have passed on to me as Surgeon General.
The Department of Health and Human Services has a very strong commitment to
improve services to disabled children and their families. And, as long as I am Surgeon General, disabled children have a very
strong advocate in the Public