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ADVOCACY FOR STUDENTS WITH FOOD
ALLERGIES
Making waves or making progress? v.
1996/2010
During the past thirty years, most schools have learned to
provide educational opportunities for children who had been traditionally left
out or ignored.
These changes were driven by many people who had a vision of community that
included all children and a vision of democracy that included all voices.
Many of these people were parents of children with disabilities who took cases
to court and who lobbied politicians and policy makers at all levels. Their victories
often came too late to benefit their own children but expanded educational
opportunities for millions of others.
One of their achievements is Section 504 of the Rehabilitation Act of 1973, a civil
rights law that prohibits discrimination against individuals with disabilities
in education or employment programs that receive our tax dollars. The authors
of Section 504 recognized that many of the barriers people with disabilities
face are the result of social attitudes and institutional policies and
practices.
Thus Section 504 was written to change policies and practices used to exclude,
isolate, disenfranchise, stigmatize or create other barriers to education and
employment for people with disabilities
Unlike the Individuals with Disabilities Education Act (IDEA) which requires
students to fit into one of thirteen disability categories to be eligible for
services, 'eligibility' under Section 504 is a functional concept, not a
categorical one.
For children, Section 504 promotes equity of access to a free and appropriate
public education (FAPE). It explicitly requires schools to meet the needs of
regular and special education students.
As other civil rights laws have established, policies that fail to consider and
compensate for differences in 'starting positions' may have a discriminatory
impact. Not to address concerns for personal safety and the need to
exercise special cautions is discrimination because it makes education resources
effectively less accessible. [1]
Thus, the US Department of Education Office for Civil Rights has ruled that
schools do not have discretion about administering medication; if a student
needs medication in order to attend school, schools must provide for its safe and
reliable administration.
MAKING WAVES
Even when parents tell me, "I never dreamed the school would treat my
child this way," they often hesitate to take legal steps. Some parents
believe that taking formal steps is too complicated and time-consuming.
Some parents fear being labeled a troublemaker and worry that they will
jeopardize relationships. A parent writes, "We want people to know
that we are not malcontents waging a war against the school but rather parents
advocating for a child who is basically happy at the school and would like to
remain there."
Unfortunately, it is a complaint-driven system. If the system is not being
used, it creates the impression that there are no problems. For example,
a state public health official once told me that she had had no complaints about
kids having difficulties receiving medication in over two years!
In their book, Teachers and Parents: A Guide to Interaction and Cooperation,[2]
Robert B. Rutherford, Jr. and Eugene Edgar emphasize that parents have the
right to pursue the best possible educational environment for their children.
"Granted, this is often a difficult and unpleasant task and one that is approached
with extreme reluctance. But the alternative of sacrificing the child to six or
seven hours a day in a non-nurturing environment is unacceptable."
MAKING PROGRESS
Parents of students with food allergies can become part of a proud advocacy
tradition that developed precisely because systems have often neglected the
rights and needs of children and their parents. Child advocates believe that children
should not be expected to adjust to the arbitrary demands and expectations of
institutions and service systems.
Rather, schools should be held accountable to children...The
end result is that children receive those programs and services that will
enable them to function at their best at home, in school, and in the community.
The goal of advocacy for students with food allergies is to
help schools, families and others in the community understand that making a
school safer and more accessible for students with food allergies is a win-win
situation.
Change is difficult. Advocates must be persuasive and
persistent. Peggy McIntosh explains the intimidating power of the status quo.
"...People perceive the status quo as morally neutral, normative, and
average, and also ideal...' [3]
Thus, both [school officials and parents] see "discrimination" only
in individual acts of meanness, not in invisible systems of rules and attitudes
that create conditions that stack the deck against someone.
Pam Gaffney worked for several years to influence her school
to increase nursing coverage and adopt the practice of writing Individualized
Health Plans for her children with food allergies. She writes, "It is easy
for officials to silence parents with suggestions that their children are a
burden on the school or that meeting their child's needs somehow detracts from
the school's obligations to "normal" children. For me, placing parents
in the false position of choosing between community interests and their primary
obligation to their own children creates a chilling atmosphere of intolerance."
DEMOCRACY WORKS
Officials and policy makers need to know: What problems have
you encountered? How have you solved or attempted to solve them? What problems
have yet to be resolved?
Put your concerns and frustrations in writing. Be
persistent. Follow up. Take a cue from the winning strategy of compiling
"discrimination diaries" that helped to win support for the Americans
with Disabilities Act (ADA)[4],
a law which broadens Section 504's anti-discrimination protection.
Write to your legislators, education and public health
officials. Creating visibility for yourself can help you cultivate important
allies.
Speaking up on behalf of children, both on an individual and
group basis, has lead to positive changes. Several states have new school
health and medication regulations and have new school manuals that explain
Section 504 and provide forms for creating Individualized Health Plans (IHPs).
In January 1996, Rhode Island amended its School Health
Program Regulations to include many changes. All schools in Rhode Island must
develop an emergency plan for each student at risk for anaphylaxis and provide
training for appropriate personnel (identified as nurses, teachers and food
service workers).
Every school must now have at least one person other than
the school nurse trained in first aid and the use of an EpiPen. In fact, any
willing staff member can use the EpiPen with full "Good Samaritan"
protection.
So help to spread the word. Being an advocate means developing
the communication skills and strategies that build cooperative relationships
and using resources and knowledge to achieve change. Pass it on: Advocacy
works. Everybody wins.
Resources
Managing Life Threatening Food Allergies in School, MA
Department of Education www.doe.mass.edu/cnp/news02/allergy.pdf
Massachusetts
Department of Special Education Appeals www.doe.mass.edu/bsea/decisions/03-3629.pdf
Ann Arbor MI Public Schools Food Allergy
Handbook (Elementary)
www.aaps.k12.mi.us/aaps.forparents/files/foodallergyhandbook.pdf
Guidelines to Managing Life-Threatening Food Allergies in
Connecticut Schools, Connecticut State Department of Education, www.state.ct.us/sde/deps/student/Health/Food_Allergies.pdf
[1]Montana
Katz and Veronica Vieland, Get Smart! What You School Know (But Won't Learn in
Class) About Sexual Harassment and Sex Discrimination. 2nd Edit., The Feminist
Press at City University of new York, NY, 1993.
[2]Abridged
Edition, 1979. Allyn and Bacon, Inc., Boston, MA.
[3]"White
Privilege: Unpacking the Invisible Knapsack," Peace and Freedom,
July/August, 1989.
[4]The
Americans with Disabilities Act extends the rights and responsibilities
provided by Section 504. Title II of the ADA applies to government services,
for example, schools, and Title III applies to places of public accommodations
such as day care centers, etc.
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