Encouraging Compliance Through Legislation

By Karen Lang

In 1994, California CFIDS advocates developed legislation to provide educational support for students with CFIDS. The bill, named Assembly Bill 105 (AB 105), directed the Education and Health departments to develop and distribute a description of the medical and cognitive effects of pediatric CFIDS and the ways it can impair a child's educational performance. The bill also called for a list and explanation of suggested educational strategies and of special educational and related services for which CFIDS students qualify under federal and state laws. The state department of education was given financial responsibility in the bill to carry out its directives within its existing budget, something the department's personnel were confident could be done.

A "Compliance" Bill
AB 105 was first conceived as a "compliance" bill, a legislative attempt to bring the state of California into compliance with federal regulations mandating protection of the educational rights of disabled children. The advocates quickly found that the bill's tough language alienated the major educational lobby and power groups and California's Republican lawmakers. As a result, the bill was amended during its journey, and the bill's focus was changed from mandate to directive. By actively seeking input from the state associations of county superintendents, school boards and special education local plan areas, these potential political enemies became allies.

The amended bill moved forward. AB 105 passed successfully through the Education and Appropriations committees of both the Assembly and the Senate and then through the full Assembly with only a few "no" votes. But it was vetoed September 2, 1995 by Governor Pete Wilson, who called it "unnecessary," something no one was prepared for.

AB 105 was a victim of partisan politics. In California, as in many other states and the nation's capitol, Republicans and Democrats are battling for power. AB 105's legislative author was the Assembly Democratic Floor Leader. Vetoing it was one of the political sacrifices made by California's Republican governor in 1995.

Hard-Learned Lessons
If you are considering introducing similar legislation in your state, keep these suggestions in mind:

Build a strong committee before you start, including people with political connections and families and students who can present their stories with credibility. One of the education com--munity's biggest arguments against AB 105 was that the bill would give unscrupulous parents one more way to abuse the special education system. You must counter this with proof that CFIDS is a valid medical illness with serious educational implications.

Focus on CFIDS as a medical and educational disability. Chronic illness that "results in reduced strength, vitality or alertness" and "adversely affects a child's educational performance" is included in the "other health impairment" category of the Individuals with Disabilities Education Act (IDEA) and in Section 504 of the Rehabilitation Act of 1973. Both of these federal laws require that local school systems educate disabled students.

Approach other disability groups for their support and expertise. You may need to spend a little time teaching them about CFIDS, but their knowledge and experience is invaluable. Every state has a disability council and resources for special education advocacy, including learning disability associations and other parent groups. The networking you do with other disability groups will enrich you now and in the future.

Choose your legislative sponsor carefully. Does he or she have a good record on health and education issues? Is he or she willing to go the distance with you? The legislative process involves a lot of hard and thankless work, and few people regard CFIDS as a glamorous or "catchy" disability. Your bill's author will need to be committed after the excitement wears off and the journey becomes long and tiring.

Contact your governor's education and health staff members. Make sure they understand why your legislation is necessary. Educational services provided now for students with CFIDS can prevent more costly services later.

Although AB 105 was vetoed before it could become law, it opened doors at the state levels where decisions are actually made. It drew attention to the fact that CFIDS is a real, disabling, chronic illness that strikes children as well as adults, that can impair a child's educational performance and that it can be addressed without an exorbitant expenditure of state funds. Plans are underway to bring a new bill similar to AB 105 before the California legislature in 1996.

The future for children with CFIDS depends on people who are willing to fight with them and for them for community and political acceptance and understanding, and for accommodations that will make their illness more bearable and their educational experience more meaningful.

Karen Lang and her son Calen both have CFIDS. Karen, who fought for Calen's educational rights throughout his educational careet, first wrote about the subject in "Calen's Story" in the Winter 1994 issue of The CFIDS Chronicle.