Cultivating the Executive Branch

By Karen Lang

Originally published in Youth Allied By CFIDS, Spring 1996

While in Washington to participate in the CFS ICC meeting, CFIDS advocates had two meetings with executive branch officials that have important implications for YPWCs.

The Vice President's Office
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.

The Department of Education
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 with 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. Hehir 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.