Lecture Vol. 19 # 6 March 14, 1989 cover
                        Remarks
                     BY
              C. Everett Koop, MD, ScD.
                 Surgeon General
                  U.S. Public Health Service
         U.S. Department of Health and Human Services

          Presented to
   Surgeon General's conference on
Transition of Handicapped Children to Adult Care
      Jekyll Island, Georgia
         March 14.1989

This lecture is included in this archive because it concentrates on one of the most difficult
aspects of my interest in and concern about special needs children and their families - the
transition from pediatric care to adult medical supervision. This has always been a difficult
aspect of the care of special needs children and even as late as this year - 2003 - I've been
speaking publicly about the fact that we have to do more in this country to make this transition a
safe one for children and a satisfactory one for their families.

I began the actual lecture by reminding the audience that we had established a National Agenda
and I ticked off seven major initiatives that were moving forward and recalled that the previous
year 1,200 participants from medicine, health, education, social service fields, and families
joined us at the September Surgeon General's Conference in Washington.

The one area I felt had not been properly addressed in all that we had done about special needs
children, was the barrier youngsters encounter and must surmount if they were to secure ongoing
quality medical care as they made that transition from childhood to adulthood. Those present
were invited by me as leaders in the major organizations and professions, which provided these
services to help us solve that problem.

This was to be my last Surgeon General's Workshop and was sort of a personal effort to close
the loop on the conference some of us had in June 1984 at Wayzata, Minnesota, a conference on
youth with disabilities: "The Transition Years". That's when I first spoke on the subject that has
been a favorite of mine ever since - "Who Are the Disabled Among Us." Although, I left the
question unanswered, I think the implication was clear that some members of society were more
handicapped than those we called disabled, but they were handicapped by attitude, prejudice and
tunnel vision.

I then took an optimistic turn to talk about five major areas where I thought we were making
progress and took this opportunity to do something I very infrequently did and that was to get
something off my chest and castigate ASTHO - the Association of State and Territorial Health
Officers for their behavior since my arrival in Washington. They believed the adverse publicity
about me, when I arrived and never changed their minds.


ASTHO and the Surgeon General should be, for this country, a united front that initiates and sees
follow-up come to fmition on the major health problems that affect the states and the territories.
Nearing the time that I was about to leave my post, they invited me to their meeting the
following month, but it was a half-hearted invitation, because they couldn't find the money for
my airfare nor the will to meet me at the airport, so I did not plan to attend. I had hoped that in
the future the leadership of ASTHO would try harder with my successor than they did with me.
(They did not.)

I then went over what was wrong with available transitions services and concepts and
summarized the basic underlying defect in the system as one that has to do with the lack of
transition protocol for ordinary adolescents from pediatric to adult services. Strangely enough,
part of that is because the population in general enjoys its healthiest years in the decade after
adolescence. Not so for special needs children. I acknowledged that the pediatricians and
internists that I was speaking to were not typical, but I had been involved for enough years with
enough youngsters to know that they were having more trouble than they need growing up. An
additional problem is that parents don't want to leave the familiarity, security, and expertise of
what they have for the unknown - which usually turns out to make them suffer greatly in
comparison with the known.

Pediatricians too - understandably - have a tremendous interest and investment that encourages
them to cling to the patient longer than they know is necessary or even in the patient's best
interest.

I was very blunt in saying that responsible adult care givers have lots of things to overcome:
first, the idea that pediatricians play medical games with their patients and over indulge their
patient's parents. Second, the truth that the parents know more about the child, and his problem,
and the goals of his care than does the new practitioner. Third, the idea that it is not
unreasonable for parents to be anxious, to expect satisfactory explanations, and to want to be part
of any decision-making.

I have long accepted in my own mind that the adult caregiver will probably never have the same
creative interest that was the priceless ingredient of the former situation, indeed may have been
the adhesive that held it together.

Because I had been there, I said all these things. Some of the diagnoses I dealt with required 10
to 15 years of constant attention to ensure maximal rehabilitation of the infant who became a
toddler, and then a child, and finally, an adolescent. I acknowledged that my interests were very
proprietary. In our mobile society, I inherited lots of new patients - by referral - when they were
halfway - or more or less - through their rehabilitation process. I know that my enthusiasm for
them was not the same as it was for a child I had been caring for since birth. If that was the case
with me, think how difficult it is for the reluctant physician.

One of the reasons that I called this workshop together was that even as I spoke, as hard as you
might imagine it is for a stranger to beat his way through the bureaucracy and finally got to talk
to me personally, not a month went by that an old patient eventually found me to ask me to
intervene in a situation where one barrier or another had become insurmountable.

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Everything I had been talking about was made more difficult by the fact that the care I wanted
was labor intensive care, it was expensive, and reimbursement systems had not yet caught up
with that fact.

Using my crystal ball based upon the previous almost 8 years of experience as Surgeon General,
I realized that the two populations of greater risk of disenfranchisement were the elderly and the
children. Each would fight harder than ever before for the funds to care for themselves and that
would make it difficult for children with special needs.

I closed with a pessimistic note that I did not expect any administration or any Congress to
address this issue on the clear merits of the situation. However, I felt in my heart that the day
would come when the business community would cry for help as the cost of health care made us
non-competitive in world markets. (That day has come!) What I don't see now in 2003 is any
special plan being made for any special needs children so they are not short-changed as the
health care delivery system is now being rebuilt.

(For the user who has been reading any of my positions on unintentional injury in children,
please be aware that a lot of the special needs children I've been referring to here, started off life
as normal healthy children, until they ran into an "accident" that we probably could have
prevented and their lives and those of their families and communities have been unbelievably
changed from that day and will remain so until the die.)