I am pleased to present you with a copy of Children with Handicaps and Their Families, based on material presented recently
at the U.S. Public Health Service (USPHS) Surgeon General's Workshop held at the Children's Hospital of
Philadelphia. More than 170 health care providers, financial executives,
legislative aides, and parents met to formulate recommendations concerning the care of children with disabling conditions
and their families.
Although ventilator-dependent children were used as the models for the
discussions, the recommendations have implications for nationwide care of all
children with disabilities, The recommendations focused on ways to ameliorate legislative and financial barriers to home
care and on ways to organize and coordinate existing community resources.
Many of these recommendations, as might be expected, affect physicians and
other health care personnel. Coordinating the highly sophisticated and
specialized medical/surgical allied health, and supportive professional team
to determine and provide the most appropriate care for technology-dependent
children in the least restrictive environment emerged as a high priority
during the workshop.
Representatives from the American Medical Association (AMA) indicated that a
number of the recommendations relate to priority activities in which the AMA
is currently involved or in which it as planning to become involved.
Specifically cited were the Medical Information Network (NET), with its
potential for incorporating medical and referral information on disabling
conditions affecting children, and the Health Policy Agenda for the American
People, with its potential for focusing appropriate attention on planning to
meet the health care needs of the chronically ill and of disabled persons.
I understand that both of these activities are still in the developmental
stages. It may, therefore, be desirable for representatives from the American Medical Association and from the Office of
the Surgeon General to meet to discuss how we may best cooperate and coordinate to accomplish our mutual objectives. If such
a meeting seems as desirable to you as it does to me, I hope that it can be arranged as soon as possible.
In any event, the American Medical Association is to be commended for the
attention it is focusing on meeting the immediate health care needs of all
persons with disabling conditions. I understand that the AMA has been an
active participant in activities of the International and National Year of
Disabled Persons, in addition to its ongoing activities in health care and
education. I hope that the AMA will focus special attention on a special
group with special needs: the million dollar babies.