SURGEON GENERAL'S SUMMARY

CAMPAIGN `87:  COMMITMENT TO

FAMILY CENTERED COORDINATED CARE

  FOR CHILDREN WITH SPECIAL

     HEALTH CARE NEEDS

JUNE 16, 1987

HOUSTON, TEXAS


SURGEON GENERAL'S SUMMARY

          AND

   CHARGE TO THE GROUP

  CAMPAIGN `87: COMMITMENT TO
hMILY CENTERED COORDINATED CARE
   FOR CHILDREN WITH SPECIAL
      HEALTH CARE NEEDS

June 14-16, 1987

Houston, Texas


Closing Remarks

Surgeon General's Conference

Houston, TX

Usually at the end of a conference like this while you are all winding
down, I am getting more tense because I have to respond with
unprepared remarks based upon things that have happened. This
hasn't been the usual Surgeon General's Conference where I give a
charge at the beginning and do this at the end. Instead I gave you the
report at the beginning and foolishly I thought that that meant I could
go home yesterday and that's not how it turned out. You all know that
I was a pediatric surgeon and I was that for just a little more than
thirty-five years.  I guess the most frequent question that people ask
me in this job is, "Do you miss surgery?" and I always answer in the
. same way, because it's the truth, I say, "No, I don't miss surgical
procedures, per se; I've seen and listened to (remember that, listened
to) all the hemorrhage that I wanted, and &.rllibly breathe faster!
Secondly, I have to admit, I don't miss children, per se; but what I do
miss is being able to find the sore point of anxiety of parents and set
them on their way with the understanding that their problem has been
or will be solved to the best of our ability as health professionals and I
do miss that because I realize now, in retrospect, that that's why I got
my kicks out of them for all years".

In meeting with you these last several days, puts me right back where
I was, because many of you have come to me and you have revealed to
me the sore point of your anxiety and the problems that I face today
and yesterday are the same problems I've faced all those years - I can't
solve all problems, but I want you to know that that doesn't mean I
haven't heard them; that doesn't mean I don't care and it doesn't
mean that I wouldn't like to do something about them.

I would like to start this afternoon by paying tribute to parents who
have children of the type that we're concerned about here. These
parents face very major adjustments to lifelong differences in a child,
if not lifelong disabilities.  Others face the prospect of knowing that
they will lose a child and these people lose their children twice - once
when they know the diagnosis and the prognosis and once when it
really happens: and although' there is a sense of relief and release
when death does come to some children, there is no doubt about the

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Closing Remarks

Surgeon General's Conference

Houston, TX

fact that you never get over the death of a child: and many of you know
that I've been through that, too, and I speak with some authority on
that subject. Most parents face their problems with what seems to me
to be an extraordinary degree of equanimity.   Even in their
frustrations, they manage to do things that are important because they
seem to be able to change the system to help others overcome the
pitfalls that they encountered to somehow or other help others to
cope. Some face family breakdown, which I think is perhaps the most
tragic thing of all those things that we discuss around the care of these
special children: and as I have pondered this question, I have sought
to find what we could do in the way of preventive measures and I have
to say that I've come back over and over again to the same thought that
in marriage, especially when it is fraught with the kinds of problems
that we understand so well, we have to ask people to center on the
commitment to marriage and the commitment to family rather than
on a commitment to a spouse. Now, that may sound queer to you, but
think about it, and I think you'll recognize that the marriages that have
endured through these tragic circumstances are indeed those
marriages and I think that in addition to that, the generation that is
now raising normal children owe to them the hones$y that reveals
what the human condition is all about, so that they can understand to
some extent the quality and the nature of human relationships. I really
believe that a realistic appraisal of the human condition is far
preferable to what at the present time seems to me to be a cross
between hypocrisy at some times and fantasy at other times, but
parents, let me just say that my hat is off to you.

I'd like now to go over a few random thoughts that I've picked up from
the meetings and also from conversations here in the corridors, how
to teach physicians, nurses and other health care professionals, to be
explicitly sensitive to the feelings of the family of the child with
special needs.  I used to face this problem, because in addition to
being a pediatric surgeon I was also a trainer of pediatric surgeons.
The law of residency programs limited me to training one man each
year for two year periods so that they leapfrog up the ladder, so that I
always had two people I was training to be pediatric surgeons. But, in

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Closing Remarks

Surgeon General's Conference

Houston. `IX

the course of the year, I had an additional sixteen to twenty surgeons
that I really tried to train to be so afraid of me, I had to make sure that
they wouldn't try it.  Well, what I wanted them to do was to
understand the problems of families and I did not ever have the time
to sit down with each of the sixteen or twenty, because they came
through peculiar rotations and tell them all the things that I have
learned about parents, but I used to put it this way: I said, no matter
what you see here in a child's problem, and no matter how mundane it
might be to you, it is to that family an overwhelming burden and
indeed, it might be an impending tragedy; and I would just ask you,
Dr. Resident, to behave toward that family in such a way on every
occasion, that even though we are unsuccessful and we lose this child,
that the mother wants to come back to this hospital where it all
happened and become a volunteer to help other parents.

How do you overcome the problems of changes in doctors, the red
tape, the delays in hospitals and clinics? I'm not sure that you can, but
that doesn't mean that I don't thmk that you should try.  I think one
has to consider whether or not the benefits of a multi-disciplinary
team of the kinds of specialist that a child needs under these
circumstances, may outweigh all those other joint iroblems.  One
solution that I think could work in those communities that have a
medical student is to assign a medical student as the manager, the
advisor and the coordinator of the family with such a child. Now that
wouldn't by any means cover all the children, but what it might do is
raise a whole generation of physicians who understood this problem
because they had dealt with and had the absolute grass roots level that
they had put themselves in the position of the family; they understood
the resources and the modes of access to them, but most important of
all, they could tram those that followed them to understand the same
thing.

What aids can we provide for the support of such people until that day
comes? I'll mention only two, although, of course there are more.
Many of you have heard me speak of these before.   One is a
physician/health care worker-oriented database that can be queried by

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closing Remarks      Surgeon General's Conference          Houston, `IX
a health professional who only has to know the diagnosis of this
patient and the city in which that patient lives and he learns from the
computer everything that is available to that child from a place where
diagnosis and treatment can be carried out to a place where family
support mechanisms can also be found. The second one is a patient-
oriented system of the same type. Access by an `800' number, where a
competent health professional, with the aid of a computer, can answer
practically every question that a parent has after the parent has left
the institution and is now out in that tremendous field where most
people find they have to fend more often for themselves than with the
help of others.

I might mention a project that is taking place that can feedback, I
think, on some of the things that you are trying to accomplish in your
own communities. Next September at UCLA, we will be having a three
day conference on "Self-Help and Mutual Aid". There are enormous
numbers of groups around the country that are engaged in self-help
and mutual aid, usually based around a diagnostic problem, where
parents get together and share their concerns and their triumphs but
also teach others how to avoid their tragedies. Many of these overlap
and duplicate each other and I was absolutely astounded when I began
to look into this that in the State of New Jersey alone for example,
there are 30,000 such self-help mutual aid organizations. They don't
even know the others exist. They overlap and they duplicate. What we
want to do in California next September, is to have a clearing house
function, so we know who they all are and then have some kind of a
networking procedure that will rid us of the duplication and the
problems of overlap and provide for less money/better service for
children. If you think about it, self-help and mutual aid causes every
single initiative and every function of the Department of Health and
Human Services and I am certain that some of these activities could
actually be ancillary to the goals of this conference.

In the city where I practised for forty years, it was possible for a child
with an orthopedic problem to be picked up by a yellow school bus,
taken to a very special school for orthopedically handicapped children
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closing Remarks      Surgeon General's Conference          Houston, `IX
and there the school was not only in a beautiful setting but its
academic standards were extraordinary, their teaching was great and
the equipment that they had for students was outstanding. The bus
took the children to school, picked them up and took them to their
homes and in the summertime it added other perks such as summer
camps and everyday that bus passed many children en route to the
school, children who had inconunence of urine and feces, children
who were in the midst of a series of operations for hypospadias (for
those of you who don't know what that is - the opening of the urethra
in the male penis is not at the tip where it belongs but some place
back towards the scrotum) - these youngsters have the terribly
embarrassing problem going to school and instead of standing in front
of a urinal like all the other boys, they have to sit down on the toilet
like a girl. There are children who have a short bowel syndrome -
they are not incontinent but because they have so little bowel and
cannot absorb all of the moisture in their nutritional intake `and,
therefore, they have what amounts to the need to go to the toilet may
be six, eight, ten, twelve times a day. There are other children who
have colostomy, temporary or permanent. There are those who have
an even more difficult similar situation, an fleostomy, ,and then there
are the rare children who have the ureterostomy, where the ureters
are joined together and empty onto the abdominal wall. Now these
silent, invisible chronic or temporary long term difficulties must be
addressed just as readily as we address the visible ones and care so
well for children who have things that we understand rather than
those which we never see.

Another thing that I have been reminded of during these past several
days, is that we need to remind those of sound mind and body that
hereditary and congenital disturbances can be mimicked in a flash by
trauma.  That the coordinated community-based care we seek for
others today, may be their potential need tomorrow. For example, a
spinal cord injury can result in the same orthopedic, gastrointestinal,
neurological and urologic dysfunction exhibited by a youngster who
was born with spina bifida; &nd as pediatric trauma becomes more
successfully treated by advanced techniques, there are going to be an

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closing Remarks      Surgeon General's Conference          Houston. TX
increasing number of children who are presented to us who have the
same special health care needs that we used to think were reserved
for those with hereditary or congenital malfunctions.   Because
pediatric trauma is going to save more lives, but remember that with
that improvement in result will come the intended heartache, the
rehabilitation challenge, the need for comprehensive care, and of
course the economic burden as well.

Now let me leave those rampant thoughts for a moment and turn to a
look at the future and let me say that the call to action presented to
you in the report delivered at your registration is a call to
partnerships; it is a call to strengthen existing partnerships and a call
to deal through partnerships; partnerships with families between
families and states and among families, states and health care
financing sector.  I believe these partnerships will lead to the
assurance of the family center community-based coordinated care we
are all working so hard to achieve for our nation's families.

Therefore, I am calling on the Division of Maternal and Child Health to
assist in the development of systems of care at the community level
that demonstrate responsiveness to the strengths and needs of
families that are developed through a partnership between parents
and professionals.

I am calling on them also to insure that these systems of care are
coordinated, flexible and sensitive to cultural differences in families. I
am calling upon them to develop inter-disciplinary educational
programs at the pre-senrice and in-service levels in which families
participate in the development of curricula and in the preparation of
providers to serve their essential role.

As many of you know, a major report is being prepared at the
University of Iowa through the Future Directions of Services for
Children with Special Health Care Needs project. It will be a
landmark publication and"`wil1 provide in-depth analysis and
substantive information on the difficult and complex issues we have

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Closing Remarks      Surgeon General's Conference          Houston. TX

dealt with over the past four years as we have struggled to improve and
expand family-centered, community-based coordinated care. I would
like to take this opportunity to recognize Dr. John MacQueen for his
leadership throughout his distinguished career as a quiet architect in
building systems truly responsive to family needs. A symposium on
Thursday in Iowa for Dr. MacQueen recognizes these contributions as
he retires from his position as director of the State program. Dr.
Hutchins was to be a part of that symposium and I, for him, express
our appreciation to John for his lifelong service and concern for
children and their families.

The report will be completed this year and Maternal and Child Health
and the University of Iowa will launch the report as a major milestone
in furthering of family-centered, community-based coordinated care.
The Division of Maternal and Child Health will, as a major priority for
their discretionary Special Projects of Regional and National
Significance funds, provide grants to states to assist them in
developing "family centered, community-based coordinated care
systems." These funds will help the States mobilize the coalitions-
parents, providers and payers -and maximize all resources--public,
private and voluntary. The information and knowledge you have gained
at this conference will help you accomplish this task.

In order to facilitate a comprehensive approach to services,
partnerships must continue to be developed with other Federal
agencies I am particularly asking the Division of Maternal and Child
Health to:

       .   Work with the Department of Education on the
implementation of Public Law 99-457 in order to coordinate services
to the youngest and smallest members of our society and their
families.  Mrs. Madeleine Will, Assistant Secretary for Special
Education, shares our concerns and has been totally supportive of
strong Federal collaboration among families, health and education. On
July 15 and 16, representative of all States are being invited to
Washington for a meeting jointly sponsored by the Division of Maternal

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closing Remarks

Surgeon General's Conference

Houston, TX

and Child Health and OSERS to continue building partnerships and
developing strategies for the implementation of this new law. A joint
report to Congress on early intervention services is being prepared
also by the two agencies. We are committed to working closely and
collaboratively with parents, providers and States in implementing
this legislation.

Also, I, with DMCH, will meet with Dr. Jean Elder, Assistant Secretary
Designee, Office of Human Development services, to look at ways to
use the social services system to improve support to families through
respite care, Head Start, child care --in order to strengthen families
rather than respond after crisis and disintegration have occurred.

On the issue of financing-- 1 am asking the Division of Maternal and
Child Health, working with coalitions of parents, providers and payers

-- to continue efforts to find solutions to the very complex problems of
financing care for these children. For example, the leadership from
Blue Cross/Blue Shield of Texas will be shared with other across the
country and I, with the Division of Maternal and Child Health, will
meet with Dr. Bill Roper, Director of the Health Care Financing
Administration, to continue ongoing efforts to provide quality care in
cost-effective ways. The American Academy of Pediatrics through its
project on the underinsured and uninsured supports these efforts to
finance the care of children with special health care needs.

  As long as I am Surgeon General, parents, providers and payers will be
  a part of all of these deliberations.
           j..n b&,?.. y.-*    +#p  This meeting has been dedicated to i r&&J' L
9.d the children irn this fund f&r+hi-ch special health care needs and f~
   their families.  As I mentioned in my report, as a parent and a
  pediatric surgeon, I have felt a special commitment to these children
  and their families for over forty years.

Children are the future of our nation, our most precious resources.
Let us join hands and forces today-- and go forward together--
dedicating ourselves at this very moment-- to improving the care and
lives of these very special citizens and their families.

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