When existing laws and policies fail to provide adequate protection, the best strategy is to change the laws or policies that lead to discrimination, by influencing local policy or by passing state or national legislation. ADA works on school policy at all of these levels.
Legislation is not to be undertaken lightly. Nor is it a quick solution; often legislation may take several legislative sessions to pass. It can also be a risky undertaking, depending upon the vagaries of the current political mood; and requires a shrewd analysis of potential opposition, to avoid waking any sleeping giants.
Any consideration of legislation should be made only after other strategies have been exhausted. Nonetheless, there are definitely cases where "bad law" is the primary culprit in perpetuating discrimination.
Legislation to Restore Rights Eroded in the Courts
Legislation to protect civil rights is sometimes necessary in cases where vague or nonspecific language in a statute has been interpreted by the courts as not providing protection for individuals with diabetes. Such was the case with the successful passage of the Americans with Disabilities Act Amendments Act. In the years since the passage of the original Act, misinterpretations of legislative intent in case law had effectively eroded protections for people with diabetes and other conditions.
State Legislative Efforts
In recent years the Association's efforts have particularly focused on changing state laws that stand in the way of good diabetes management at school. Among the most common barriers to safe, accessible care in schools are state-determined professional practice laws and regulations related to the practice of nursing.
Most problematic are those laws that prohibit the administration of insulin or glucagon by non-health care professionals. In some states the laws may not be explicitly prohibitive, but are vague enough to be widely interpreted as prohibitive.
To address these roadblocks, the Association has developed state model school legislation to make sure students with diabetes are medically safe at school and have the same access to educational opportunities as do other students. So far, either comprehensive or targeted school legislation has passed in seventeen states.
The Association's legislative efforts have focused on passing school diabetes care legislation so that teachers, school administrators, school secretaries, and other personnel may be trained to provide diabetes care in the absence of a school nurse, and so that students who are able to do so can effectively self-manage their disease.
The Association's model school diabetes care legislation includes the following elements:
- Maintains that the school nurse plays a central role in the coordination and provision of diabetes care to students,
- Provides for the student's health care providers to provide necessary instructions, authorizes performance of diabetes care tasks by trained non-medical school personnel,
- Requires the establishment of training guidelines,
- Permits a student to provide self-care as authorized by his or her personal health care provider and parent, and
- Prohibits restriction of school choice.
Strategies for Advocates
LEGISLATE after attempts to educate, negotiate, and litigate have not been successful.
- Consider changing state law if current laws and policies do not provide students with diabetes with the protection they need or when school policies and practices are inconsistent within a state.
- Alert the American Diabetes Association about barriers encountered in education, negotiation, and litigation.
- Work with ADA, other individuals, allies and groups to explore strategies for resolving issues. Assist ADA in assessing the need to change the rules at a local, statewide, or national level.
- Identify legislators who may have a personal connection to diabetes, understand the concerns, and may be willing to introduce appropriate legislation.
- Coordinate efforts with ADA to organize and energize grassroots support.
- Realize that systems change slowly and the successful legislative efforts require patience and perseverance.
Read State School Legislation: Needed Protection for Students with Diabetes an article that explains the need for school diabetes care legislation in some states that appeared in the National Association of School Nurses Newsletter, January 2003. (PDF)
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