"Total Care for the Disabled Child: Keynote Address to the First International Conference on Pediatric Social Work, Chicago,
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Koop, C. Everett
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Congenital Birth Defects and the Medical Rights of Children: The "Baby Doe" Controversy
Total Care for the Disabled Child: Keynote Address to the First International Conference on Pediatric Social Work, Chicago,
Illinois (August 12, 1982)
Vol.#2 -- 9
"Total Care for the Disabled Child"
First International Conference on Pediatric Social Work
August 12, 1982
Here, I am talking about the arena where I spent forty years of my professional life caring for less than perfect children
who, even properly cared for and sometimes operated on, do not end up pristine in form or function. I know this territory
well and I take the listener from generalities through step-by-step suggestions for adding to our already large armamentarium.
For example, preparing the pediatric and surgical staffs of hospitals for possible long-term relationships with some parents,
the fact that the physician-patient relationship can no longer be casual nor short-term and communication has to be in words
parents understand and not forget. Then there's the reminder that, in addition to the problem at hand, there are financial,
emotional, and other issues. The physician must never transmit a sense of hopelessness or futility or in effect, go into mourning
for a child who is still very much alive no matter how severe its physical or mental burden. Rejection of terms of hopelessness
is not the same as offering false hopes to confuse and frighten parents, we need to be cautious, honest, and objective but
we need to build on the family strength.
Complementary to all of the above, is to expand in strength of the facilitating skills of the social services staff.
We also have to control -- rather be controlled by -- the new technology of medicine and health care.
I lean heavily for examples on the respirator-dependent children with whom I had significant experience before becoming Surgeon
General. This is the first time I mentioned in public, the plight of Katie Beckett, the need for Katie Beckett waivers, and
my chairmanship of the Katie Beckett Waiver Board.
(Katie Beckett was a respirator-dependent child living in a hospital far from home with bills being paid for by Medicaid.
We proved that Katie was better off at home, her cost there was $800 a week rather than $1500 a day in the hospital, and made
Medicaid foot the bill at home. The chain of responsibility passed from Julie Beckett, Katie's mother, to congressman
Tauke (Iowa) to Vice President Bush to President Reagan, to Secretary of Health & Human Services Schweiker, to the Surgeon
Charities, vulnerability to disguise
Control of new technology of respirator dependent children
High costs, (emotional & monetary)
Disabled neonate-responsibility of parents
Our stubborn innocence in dealing with our own mortality
Special training of physicians & nurses
Support of parents in the time of need
The ambiguity of parent/child relationship
The effort to give human life a specific value
The expansion & strengthening of facilitating skills