Surgeon General of the U.S. Public Health Service and Deputy Assistant Secretary of Health
U.S. Department of Health and Human Services
Presented at the Surgeon General's Conference on Coordinated Care for the Chronically Ill Child
June 14, 1987
Surgeon General's Workshops are very specific events and the chief vehicle by which I did my own consensus development
and brought new issues to the floor or settled protocol for the future. As has been made abundantly clear in previous addresses
in this archive, they started with an evening charge followed by a day and a half of break out sessions followed by a report
by each of those and concluded with my response as a government official in reference to the narrow issue of the workshop.
This was really a conference and it was part of a long, long journey I started way back at the Children's Hospital of
Philadelphia in December 1982, when we had our first Surgeon General's Workshop on problems involving handicapped children
and their families. This conference was a long way down the road and what we had accomplished in four short years is truly
memorable. When people asked me through the years, what was the most important thing I did as Surgeon General, I always hedged
and said, "It depends what your interest is". But by and large, I think, as much needed change in health care of handicapped
children took place as we were able to accomplish in any other field. I had said back in December of `82, "The way we
deal with problems like this reveals just what kind of society we are." I meant it then. I mean it now.
I was addressing an audience that had started to work together as the beginning of a national program, took that work to regional
programs, moved on to the states, moved on the municipalities and counties. And now we were gathering together for sort of
a catch-up at the national level once again.
Back in 1982, I had asked that audience to come up with some guidance as to the direction in which the society could go in
its quest for improving the condition of handicapped children and their families. That meant what questions needed to be asked?
And how should we go about getting the answers? The user will recall that we began with the ventilator dependent child, because
some problems had been raised that needed immediate answers and it was my feeling that that was such a complicated problem,
if we could master it, we could master anything.
This was not an hour-long lecture. It was a refocusing of attention, it was a pep-talk, it was a thank you, it was a meeting
held in gratitude for what had been done by the huge group of people gathered there with one thought in mind.
From that point, I hit the highlights very briefly from 1982 until the time I was speaking in Houston. It can be best summarized
in saying that we set out to have, and accomplished our purpose in having: "comprehensive, coordinated, family-centered,
community-based care for every handicapped (Special needs) child" - that, of course, reflected on the families. Indeed,
we were so successful that eventually Title V of the Social Security Act was changed to make that last quotation a guarantee
for every special needs child in the United States. This was the conference that turned all those hopes and aspirations into
a true grass-roots program.
Our charge, at the time, was to review the questions we had been asking, look at the answers we had generated, fit the pieces
together, and see it all as a single, major national move on behalf of chronically ill children and their families. With the
momentum behind us, I asked some final questions.
I asked all families to become more active in development of programs that serve their children. I asked all state agencies
to establish working relationship with families and use these partners to full mutual advantage. I asked all health care providers
to open up the systems of health care at all levels and help make them fully accessible by all families and children in need.
And I asked all members of the health care financing sector - public and private - to re-examine their policies and make the
necessary adjustments so that all children with special health needs could have access to quality health care and none would
be denied because of costs.
The answers were beginning to be shaped, but in my opinion they were not yet complete enough and that was reason for this
conference. I believed the answers would lie in the history that we intended to make - and that is how it turned out.
At the close of this conference, I issued a charge much more specific than I have said above and that is the subject of the
address, which follows.