Cultivating the Executive Branch
in Youth Allied By CFIDS, Spring
While in Washington to participate
CFS ICC meeting, CFIDS advocates had two meetings with executive branch
officials that have important implications for YPWCs.
The Vice President's
On April 9, 1996, a group of CFIDS advocates met with Skila
Harris, Special Assistant to Vice President Gore and his wife, Tipper. Rebecca
Moore (CYA chairman), Kim Kenney (executive director of The CFIDS Association of
America), Tom Sheridan and Doralee Halperin (CFIDS Association lobbyists),
Evelyne Rominger (wife of Deputy Secretary of Agriculture Richard Rominger and a
health advocate with many years of experience) and I attended the meeting .
We presented the problems facing young
people with CFIDS, focusing on the lack of understanding about their disease
within the medical and educational communities. Skila described Mrs. Gore's
interest in mental health issues and illustrated some of the ways she and her
staff have increased public awareness on the subject which, like CFIDS, is often
met with prejudice and misunderstanding. In an open and frank discussion of the
high and low points of trying to communicate human needs to the decision-makers
in an often insensitive political world, we established a new relationship with
Mrs. Gore's office and brought an awareness of pediatric CFIDS and the issues
facing young people with CFIDS (YPWCs) to this level of government.
On April 11, Kim Kenney, Vicki Carpman (editor of The CFIDS
Chronicle) and I met with Dr. Thomas Hehir, director of the Office of Special
Education Programs (OSEP) for the U.S. Department of Education. We discussed
problems YPWCs have getting their local school districts to understand their
CFIDS-related educational problems and to make appropriate accommodations to
meet their educational needs.
Dr. Hehir assured us that all children
established educational needs (including YPWCs) are entitled to special services
under two federal laws: IDEA and Section 504. He also said that OSEP can work
with the Association to disseminate information about students with CFIDS to
each state's education department.
We established connections with Dr.
and OSEP that will bring about a better understanding of CFIDS in the
educational community and improve YPWCs' access to educational services. One of
the immediate benefits will be a return to OSEP in May to discuss a federal
research project to study CFIDS as an emerging disability. We will report on
this meeting and other developments in future issues of YABC.
Karen Lang and her son
Calen have CFIDS.