Medical science and technology has increased our capacity to care for and sustain many infants with severe or multiple ailments.
Many of these infants are now surviving into childhood, enjoying many of the things that other children do growing, learning
and living at home.
However, there are many difficult and varied issues that arise as these children and their plight come to public attention.
Can all infants who are born with multiple ailments become candidates for programs that will teach their parents and family
units how to care for their many medical needs at home? What are the health care costs involved and who will pay the bills
that usually accompany chronic conditions? Finally, what are the benefits and problems of home care for patients with chronic
conditions, their families and the institutions and communities that serve them.
These and other issues will be the topic of a Senate Labor and Human Resources Committee hearing to be held in Salt Lake City,
Utah, on August 9, 1983, 9:30 a.m. at the Primary Children's Medical Center.
For several years now I have been an advocate of home health services as an alternative to institutional care for the elderly,
both because of its potential for saving health dollars and its obvious benefits to both the patient and the patient's
family. This philosophy has been the impetus behind S. 1539 and S. 1540, two bills which I introduced on June 22, 1983, to
expand home and community-based services (copies and summaries are enclosed). These bills are also designed to expand home
health services for the disabled, including children. Thus S. 1539 and 1540 would help to address the many problems faced
by chronically ill children and their families.
I would like to invite you to testify at this hearing and address the issues as they relate to your experience in providing
or seeking home care for chronically ill children. Federal health policy makers have geared their efforts towards support
of institutional care and only in the past few years have begun seeking viable alternatives.
Your input on how federal policy can best address these issues and specifically S. 1539 and S. 1540 would be valuable. Please
keep your oral presentation limited to 5 minutes. An extended statement may be written for inclusion in the hearing record.
50 copies of your written presentation should be mailed to the Committee no later than August 2, 1983. If you will be able
to testify please contact Debbie Turner 202/224-6572 or David Sundwall 202/224-2563. I look forward to hearing your testimony.