Encouraging Compliance Through
LangAnyone who knows a child with
chronic fatigue and immune dysfunction syndrome (CFIDS) understands the problems
students with CFIDS have convincing teachers and others that they are really
sick. The common misconception is that attitude, school phobia or adolescence
(or a combination thereof) are to blame when a child looks fairly normal but
complains of feeling so ill that he or she cannot physically and/or cognitively
keep up with peers.
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
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.
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
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
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
Karen Lang and her son Calen both have CFIDS. Karen,
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