Summary of the Worlcshclp
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The Call to the Works&
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In Llje summer of 1982, Surgeon CeneraL, C. Everett Kuop, M.D., requested

that a Workshop on Children with Handicaps and their Families be convened

to seek out ways to lessen the hrtndicaps imposed 1111 disabled chi.ldren nnd

LO promote c*hild arkd family self-suEIi(.icnry :{11d :iutonomy.  'l'l~c workshop was

trcald at The Children's Hospital of Philadclphi~~ on IIt'cember 13 and 14, 1982.

Over 150 individuals including handicappccl ;Jaticrlts, their families and

those involved with their cart', wcrc inviled to participate in tlie conference.

,111 additional 100 people attended parts of LOCI proceedings hccause of their

interest in the welfare of handicapped children.  All of the participants paid

their own ex:enses or were supported by their own institutions.   Financial


asslstancc WilS provided for particfpating patients and parents.

The Workshop was called in response to the revolutionary transformations in

medical technology which have taken place duri.ng the past four decades.  Dis-

coveries and applications in the fields of antibiotics and other drugs, in

vaccines, in computeri..cd imaging procedures, in life-support and monitoring,

in laboratory techniques, and in the understanding of basic physiology have

altered the prtiguosls 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 per-

sonnel.  Many of these children now survive, and most of those who do can look

forwdrd to a productive life, though often impeded by residual disability.


Summary of the Workshop - Page 2

Modern American society has geared itself to almost unlimited support of this

technology.  But support for the essential services systems outside the ter-

tiary 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 con-

sideration.  Can we maintain the Qechnological 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 pro-

viding 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 Eor all handicapped chil.dren.

!'rcsentations of pro::rams in Illinois, New York, and Pennsylvania explored

problems and progress in meeting the needs of increasing numbers of ventilator-

dependent children.  A parent, Plrs. Betty Warteuberg, presented a summary of

the life of her n6ne-year old son.  She gave au account that recalled the

yeah-s 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.

I;0 I I ow i 11): Ll~c*scb  pt-cl! i~~ilt;iLlons tlw pili*ti(*Ip3nfs wcarc ass ignctl to working grOUjJs

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,


SullLi:ary of the Workshop - Page 3

executives of service organizations walked the acute and intermediate wards

of the hospital and interacted with ch-ildren who have lived there all their

lives,  3 or 4 years; legislative aiJcs 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

formalization.

A consensus of the working groups' deliberations tias reported to a final plenary

session, which marked the close of the workshop.

SQntiEsis of the Deliberations and the Surgeon-~~eneral's Respnses
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'i'!rt, summaries and recommendations of the workshop groups reveal an overwhelming

diversity of concepts and directions to be considered.  Many ideas arose
repe:::edly 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 wi.th disabilities into

current education curricula

.  Identifying areas of potential abuse



f  Supporting research on the care of children with handicaps


.  Improving financing of the kinds of care these children and their families need


Summary of the Workshop - Page 4

While the workshop did not focus specificalLy on ethical matirers, the effc*ct

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,

IIumaneness, thus, was a common thread and a universal motivation.  Every ex-

pression of thought seemed to emanate from the theme, "what Is best for the child?"

Continuing FEssion of Workshop
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In declaring the workshopck:success and accepting its recommendations the

Surgeon General expressed his belief that the eventual outcome will. be better
                5 P5 pc)ccc6)4
health care for a more diver*p a& an increased number of children with disa-
    L?f. //ss/
Lilities. -J=& stated:  "Where we have it in our power, we hope to make their

handicaps temporary, or, at least to ameliorate t?leir severity.  We will be using

a variety of techniques to continue the momentum which has developed at the

worka`hop, 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 1

am Surgeon General, disabled children have a very strong advocate in the Public

Health Service.  //