This meeting is a natural follow-
up tothe Surgeon General's Work-
shop on Children with Handicaps
and Their Families, which we held
a year ago in Philadelphia. At that
time, in my charge to the workshop
participants | said, “The way we
deal with problems like these re-
veals just what kind of society we
are.”

| think the record of the past 12
months is clear enough. It shows
that we are still a caring and com-
passionate society — concerned
about the health of children, sym-
pathetic to the families who face
enormouschallenges inthecourse
of accepting and raising a handi-
capped child, and innovative in the
way we bend the political and eco-
nomic environment to make it
serve the human needs of our
families, rather than the reverse.

But those are generalities. Ac-
tually, | have two specific reasons
for being especially pleased to

ON 72 e tae eleeM LEN TEENA TERE TER AAR

 

The Surgeon General's seminar on ventilator-dependent
children and adults captures the attention of the news media.

urseon General Ap
Society To Share Problems Of
The Handicapped

by C. Everett Koop, MD

open this conference this morning.
First, | can’t tell you how proudlam
to be in the government, to have
held a conference, and then, a year
later, to be able to look back and
see the results of that conference.

Even after two-plus years in this
position, | still consider myself to
be the new kid on the block in the
Public Health Service. Many of my
colleagues and friends in the Pub-
lic Health Service have been fight-
ing the battle of inertia for much
longer than |. As the new kid, |
haven't had the years of triumph
and uncertainty that usually come
with the territory of public service.
But we've been very fortunate. In
this highly complex and emotion-
ally charged area of service to
handicapped children and adults
and their families, we've been able
to make significant, measurable
progress. I'm very proud of that —
as a public servant and as your Sur-
geon General — andI hope you feel

peals To

the same way. Ina single year, we
may have made a difference in the
lives of many hundreds of children
and their families.

My second reason is a little dif-
ferent. Over the past year, we’ve
been devoting our time to an issue
that brooks no obstruction, that
admits of no pettiness — an issue
that inspires people to offer the
best that is in them in order to
plan and implement such a worth-
while program. The problems
faced by ventilator-dependent
patients and their families can be
staggering. They are among the
most complex problems to appear
within the environment of medi-
cine. They require innovative, care-
ful relationships between medi-
cine and community social ser-
vices. These are also costly prob-
lems, requiring the help of accoun-
tants with the souls of saints. And
the problems are also inextricably
linked to a cluster of profound mys-

Me Sd eee AES AGL EE ERATE eon

 
teries — the mystery of the human
infant, the mystery of parenthood,
the mystery of personal courage,
and the mystery of family love.

As formidable a task as we set
for ourselves, | have to neverthe-
less say that it was the right task.
For too many years we had talked
about this problem and we sym-
pathized and commiserated and
had come up with a number of
steps to somehow lighten the bur-
den for both the ventilator-depen-
dent patient and his or her family.
But clearly we were not doing
enough.

Also, the way we were going
about it said quite a bit about our
intentions, generally in regard to
the solving of many other serious
socio-medical issues. The fact is,
if we could pull together our re-
sources in such a coherent and ef-
fective way that we could make
good things happen for ventilator-
dependent children, then we could
do good things for many, many
other disabled and Handicapped
children and adults.

You remember the words of
Cassius to Brutus in Shakespeare's
Julius Caesar. ‘The fault, dear
Brutus, is not in our stars but in
ourselves, that we are under-
lings.” We sooften defer tocircum-
stance, as the Romans deferred to
Caesar, and we become, in effect,
the “underlings” of circumstance.
That need not always be so. It isnot
written anywhere in the stars that
disabled children, attached to
machinery for the vital air of life,
must go without any other help
from their society. Nor is it written
anywhere that other disabled and
handicapped individuals, very
young ones tovery oldones, should
be left outside the pale of assis-
tance. That's just not the way we
want our society to be.

So, with this project, addressing
the needs of ventilator-dependent
children and their families, we

declared our intention to blamethe
stars no longer, but rather to look
to ourselves for what could be
done. And | can tell you it worked.

At the close of last December's
workshop, we affirmed our com-
mitment. to, turn into reality as
many of the workshop recommen-
dations as possible. With us today
are a number of the same people

 

C. Everett Koop

who had taken part in last year’s
program. And they have stories to
tell us — stories of hope, profes-
sionalism, character, and I'm
pleased to say, of success.

As an introduction to their con-
tributions, let me briefly report
on the status of the seven recom-
mendations and how we're doing
on them. As the top of the list last
year was the need to get as clear
a definition of the problem as we
could. And by that, ! don’t mean to
narrow down the problem and
thus, in a sense, trivialize many of
its aspects — quite the reverse. It
was felt that the public as well as
the medical and social service pro-
fessions needed to appreciate the
scope of the problem of care for

handicapped children and their
families. We did not feel — and
rightly so — that such appreciation
was Current. ,

| believe that the publication and
distribution of the proceedings
of the December workshop has
contributed to this task of clarify-
ing what the problem is. The work-
shop report does provide a com-
mon base of understanding for all
persons with an interest in this
problem.

Stimulated by this first recom-
mendation regarding the defini-
tion of the problem, the Crippled
Children’s Program at the Univer--
sity. of Illinois surveyed the status
of ventilator therapy and support
among: children in Illinois. This
makes Illinois the second state to
obtain this kind of information.
Pennsylvania was the first and has
been updating its information
base.

Asimilar study was alsobegunat
the University of California at San
Francisco. The health policy pro-
gram at the university is investi-
gating, for example, theincreasein

the last 25 years of the number of

days of limited activity among
children.’

Additional! efforts have included
a “National Conferenceon Chronic
llInesses in Children,’ conducted
last April by Vanderbilt University.
This conference has heiped us ina
number of ways, but I'll mention
in particular the attention it paid
to the issue of research priorities
regarding chronic illness among
children.

Then, just this past October in
Kalamazoo, MI, a three-day ‘‘In-
vitational Symposium on Ven-
tilator-Dependent Children’’ was
held. | understand it was quite a
success. A full report of that sym-
posium will soon be published in
Pediatrics magazine, and | urge
you all to watch for it. The Kalama-
zoo Symposium dealt with a num-
“If we could pull together our resources so
that we could make good things happen for ventilator-
dependent children, then we could do good things for many,
many other disabled and handicapped children and adults.”

ber of issues such as the need for
better data, the problems associ-
atedwith the financing of care from
both public and private. sources,
the research needs of this field,
and. the major task of education
that has to be done among parents,
patients, health and social service
professionals, and our communi-
ties in general.

The second recommendation of
the workshop last December con-
cerned the need for mode! stan-
dards. The workshop participants
feltweneededtospend much more
time and effort in developing stan-
dards that reflected the needs of
the family as well as the concern
for the quality of life of each dis-
abled child. To get this work started,
our division of Maternai and Child
Health awarded two grants for
special projects of regional and
national significance now known
as “Sprans” grants. One of these
is the project at the University of
lowa. It will explore the relation-
ships that develop between dis-
abled children and the health pro-
fessionals who take care of them.

The other, at the University of
Michigan, is looking at standards
of care that may be applied to re-
gionalized community health ser-
vices for children with diabetes.
Such a regionalized support net-
work would invoive health and
social service professionals, pri-
vate professional and voluntary
organizations, and local and state
governmental agencies. It’s an
ambitious and very worthwhile
project.

And that brings up the third
recommendation which was to
develop regionalized systems of

care for ventilator-dependent
children.

Three “Sprans” grants have
been awarded for the development
of regionalized systems that deal
specifically with ventilator-depen-
dent children. The accent is on
ways to help move children out of
institutional settings and get them
back home, or at least to a home-
like setting. Naturally, the role
played by effective community-
based support systems is crucial.

Six other ‘Sprans” grants have
been awarded for the development
of model systems to serve children
with arthritis. In all, the Public
Health Service has awarded close

” to $750,000 for the development

of regionalized systems of care
for disabled children.

Among the most exciting efforts
in this area is the contract awarded
by the Office of Human Develop-
ment Services to the John F. Ken-
nedy Institute in Baltimore. What
we hope to accomplish here is a
model for a working nationwide
referral network for the develop-
mentally disabled. Using today’s
sophisticated technology, itshould
be possible for a developmentally
disabled individual, or the physi-
cian, parents, or care-takers of
such an individual, to query a sin-
gle source for information about
that disability and pinpoint the best
or most appropriate places to get
help for the person so disabled —
help anywhere in the country or
possibly even the world.

This is no longer the “blue-sky”
thinking of visionaries. We know
it can be done because it is being

‘done here and there, albeit in

piece-meal fashion. But we look to

the Kennedy Institute to pull some
of these things together.

Under the terms of this award,
the strong features of two impor-
tant information systems are to be
combined and regionalized. One is
a data retrieval system for the par-
ticular use of practicing physi-
cians, and the other is accessible
by the general public.

The database for the physician-
oriented system was developed by
the Kennedy Institute in Baltimore,
using data supplied by the 38
university-affiliated facilities
around the country. As a matter of
fact the American Medical Associ-
ation itself has a contract with
Kennedy to bring the institute’s
data in as the fifth offering of the

AMA's Nationwide Medical In-

formation Network, or “Minet.”
itis available to every ‘‘Minet” sub-
scriber who has a desk-top com-
puter and a telephone.

This enterprise nicely pulls to-
gether government, the private
non-profit sector, and organized
medicine — in this case, the AMA
— to make information available to
physicians concerning access to
specialized care for their patients
and the presence of community
support services.

The other and more consumer-
oriented data system is now func-
tioning out of the University of
South Carolina to benefit citizens
of that state. The system carries
information on access to care and
community support services with-
in the state. However, any indi-
vidual or family member can get
into the system merely by dialing
a toll free “800” number. It isn’t
open only to physicians, for ex-
“I am setting as a personal objective the need
to keep track of all developments in the financing of care so
that the potential for increased support is fully realized and
every child who needs care will get it.”

ample.

‘The Kennedy Institute has anex-
cellent concept of just how sucha
network will function. By means
of the Kennedy Award, we hope to
expand the South Carolina model
to cover all the states in federal
Region IV, and they are, in addi-
tion to South Carolina, Alabama,
Florida, Georgia, Kentucky, Mis-
sissipp!, North Carolina, and Ten-
nessee. If that works — and | am
very optimistic that it will — then
the next step is to ‘go national”
as it were, andthus make available
to all our citizens the best infor-
mation and the most appropriate
resources relative to handicapping
conditions.

I'd like to add one additional
point. The Kennedy Grant is for
$95,000. It is probably the greatest
bargain today in the entire field
of health care and social service
R & D. But it also illustrates that
the size of the problem may not al-
ways determine the costliness of
the solution. As professionals in
this field, we need to keep our
minds open to what can be done
and then pay what's necessary.

| agree that such a sentiment is
easier to say than to live, and for
that reason, we have been moving
on the fourthrecommendation, the
one that deals with the financing
of care for children with disabili-
ties. Last May, we held another
kind of workshop in Washington,
D.C. on this problem.

The cost of care is an important
and continuing concern of the ad-
ministration. | can tell you that the
May workshop and a subsequent
meeting in June with officials of
the Health Care Financing Admin-

istration have served to throw
some light on more and better
ways — within existing law and
regulation — to help pay for more
and better service to handicapped
children.

But the problem will not go away

_ with the conduct of one workshop

or the scheduling of one meeting.
For that reason, | am setting as a
personal objective the needtokeep
track of all developments in the fi-
nancing of care so that the poten-
tial for increased support is fully
realized and every child who needs
care will get it. !knowthatisclearly
the feeling here in our host state
of Missouri, and | want to recog-

. nize the leadership given to this

complex issue by Governor Bond.

Three other recommendations
are worth mentioning, although
| would rather not take the time
to comment on them right now.
They are: /dentifying areas of po-
tential abuse. That is, controlling
costs, eliminating duplicative ser-
vices, monitoring care according
to model standards, and so on.
Another is incorporating principles
of care for children with disabili-
ties into training programs for
health professionals and parents
which is a straightforward enough
recommendation. | can report that
an Ad Hoc Committee dedicated to
following up this training recom-
mendation met last June, with
representation from acrossabroad
spectrum of health, social service
and educational specialties.

The seventh recommendation
from our first workshop has to do

‘ with supporting research in the

care of children with disabilities.
The Vanderbilt study that | men-

tioned earlier, has been helpful in-
giving us some direction in our
research strategy.

| -hope you feel as good as | do
about this record of achievement
over the past 12 months. It does
demonstrate that concerned citi-
zens — health and social service
professionals, government offi-
cials, and lay citizens — can focus
their interésts and energies on a
particular issue and make a dif-
ference in the outcome of the
public debate, and that disabled
children and adults will benefit.

In these remarks | have mea-
sured progress according to what's
been accomplished on the recom-
mendations of last year’s work-
shop. But many other things have
happened over the past year, and
! would be remiss if | did not recog-
nize that. In fact, | would like to pay
special attention to an event that
took place in Washington, D.C. on
November 29.

On that day, representatives of
nine national organizations came
together at a press conference.
They convened to announce their
agreement on a joint statement
entitled, “Principles of Treatment
of Disabled Infants.”’ The nine par-
ticipants included:

@ The American Academy of Pedi-
atrics

@The American Association of
University-Affiliated Programs

@ The American Association of
Mental Deficiency

@ The American Coalition of Citi-
zens with Disabilities

@ The Association for the Severely
Handicapped
@ The National Association of
Children’s Hospitals and Related
Institutions
@ The Association for Retarded
Citizens — United States
@ The National Down’s Syndrome
Congress
@® The Spina Bifada Association
of America ;
The first statement of theirstate-
ment reflects a great deal of social,
legal, and medical history of the
past few decades. It says, “Dis-
crimination of any type against any
individual with a disability/dis-
abilities, regardless of the nature
or severity of the disability, is mor-
ally and legally indefensible.’
The statement goes on to high-
light the “need for information”
which will ‘‘improve decision-
making about disabled individuals,

especially newborns.” Medical
care and the role of both govern-
ment and the community are also
dealt with in this statement. If
you have not read it, | urge you to
get a copy by writing directly to any
of the nine signatories.

At the beginning of this year,
! doubt that more than two or three
of these nine groups could have
agreed on such a broad statement,
although they all believe deeply
in the issues as well as in the need
to keep moving forward. As the
debate over the “Baby Doe” cases
unfolded, | think the need for ac-
commodation and consensus be-
came increasingly clear to every-
one. Yes, principles are at stake,
but they are not at risk.

Events have made this past year
both hectic and crowded, but it

has been a gratifying year as well.
I’ve not been gone that long from
the Children’s Hospital of Phila-
delphia that I’ve forgotten the
enormous personal and family
problems faced by a number of my
former patients — [little children.
who had to be hooked up to a ven-
tilator to get through the first few
months of life with a disability.

So the hard work of the past year
does have its very precious re-
wards. More children and more
adults are going to get a better
break in life, as a result of what
we've accomplished and what we’
intend to accomplish. It seems to
me that getting deeply involved
in this’ kind of issue is precisely
what an office such as mine ought
to do — or else — what are Surgeon
Generals for? @