11 BACK-TO-SCHOOL with DiABETES Crystal Jackson Government Relations & Legal Advocacy American Diabetes Association Summer 2004

2 Schools must provide a medically safe environment for students with diabetes. Students with diabetes must have the same access to educational opportunities as do other students. GOALS

3 Common Issues Facing Students With Diabetes Failure to have trained staff to assist students with diabetes. Refusal to administer insulin. Refusal to administer glucagon. Lack of coverage during field trips and extracurricular activities. Refusal to permit blood glucose checks outside of the health clinic or office. Refusal to allow a student to attend the school at all.

4 Section 504 & Other Federal Laws Section 504 of the Rehabilitation Act of 1973 (Section 504) Americans with Disabilities Act (ADA) Individuals with Disabilities in Education Act (IDEA)

5 Section 504 A civil rights law that prohibits discrimination on the basis of disability. Who is covered? Child with a physical or mental impairment that substantially limits one of more of major life activities, has a record of such an impairment, or is regarded as having such an impairment. What schools? All public schools and private schools that receive federal financial assistance.

6 Schools Must: Identify children with disabilities. Provide free and appropriate public education (FAPE). Educate children with disabilities with other students as much as possible. Allow parental participation in decisions. Provide children with disabilities with an equal opportunity to participate in nonacademic and extracurricular activities.

7 ADA Prohibits discrimination against individuals with disabilities. Covered children: same standard as 504 Covered schools: public, private, day care centers -- except those run by religious institutions School required to make reasonable changes in its practices and policies to avoid discrimination and to afford equal opportunity unless doing so would impose an undue burden.

8 IDEA A child with diabetes is covered if he or she needs special education and related services in order to benefit from an education. Diabetes must adversely interfere with academic performance. School must provide special education program and related services. Children must be educated in the least restrictive environment. Team that includes parents, special education experts, and school staff develop Individualized Education Program (IEP) which outlines plan to achieve specific educational goals.

9 504/IEP Plan: Possible Contents Recognition and prompt treatment of hypoglycemia and hyperglycemia by trained school personnel during school day, field trips, and extracurricular activities. Immediate access to diabetes supplies and equipment. Unrestricted access to snacks, water and bathroom. Classroom blood glucose monitoring. Adherence to care schedule (routine blood glucose testing, insulin administration, meals and snacks eaten on time). Reasonable time/instruction to make up assignments and tests missed due to diabetes. No penalties for absences due to diabetes (illness/doctors appointments). Identify trained school personnel.

10 Is Your Child Prepared? School Checklist Work with your childs health care team to develop a Diabetes Medical Management Plan (DMMP). Meet with school before school begins to discuss implementation of DMMP. Develop or update Section 504 Plan or Individualized Education Program, if eligible. Approach in spirit of cooperation. Provide supplies, snacks, quick-acting form of glucose. Encourage your child to wear a medical ID jewelry.

11 Diabetes Medical Management Plan (DMMP) Document developed by family and health care provider Signed by health care provider Describes your childs diabetes care regimen Information may include: –Date of diagnosis –Current health status –Emergency contact information –Students willingness and ability to perform self-care –List of diabetes equipment and supplies –Orders for bg monitoring, insulin, glucagon, ketone checks, meal and snack plan, exercise –Typical signs, symptoms, and prescribed treatment for hyperglycemia and hypoglycemia

12 DMMP DMMP should be reviewed and updated each school year. Update upon change of your childs diabetes regimen, level of self-management or change in school circumstances (i.e. change in schedule).

13 Back-to-School Preparation Strategy Educate Negotiate Litigate Legislate

14 Educate the Educators Schedule meeting with school administrators and key staff members before the beginning of school year to discuss the implementation of your childs Diabetes Medical Management Plan and to develop Section 504 Plan or Individualized Education Program. Familiarize yourself and school staff members with the ADA Position Statement on Care of Children with Diabetes in the School and Day Care Setting. Seek coverage under appropriate federal laws. Be sensitive to the concerns of school personnel, but stand firm. Offer to help facilitate and assist with training when possible.

15 Negotiate Work through problems and concerns through education. Most times problems arise due to ignorance and/or fear. Clarify reasons for schools concerns and objections, preferably in writing. Collaborate with other parents and concerned individuals and organizations to work for change Gather resources to support your position (applicable laws, medical information, policies in place in neighboring school districts). Obtain expert opinion/letter from your childs endocrinologist.

16 Litigate File complaint with U.S. Department of Education, Office of Civil Rights. School district/state grievance procedure/hearing. File complaint in state court. File complaint in federal court.

17 Litigate When Necessary Office of Civil Rights in the U.S. Department of Education enforces Section 504 and ADA in programs that receive assistance from the federal government. The U.S. Department of Justice enforces ADA in schools and daycares that do not receive federal funding. The Office of Special Education Programs (OSEP) enforces IDEA. Due process appeals may be initiated through the state education agency.

18 Legislate 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 the protection they need Realize that systems change slowly. Patience and perseverance required.

19 State Laws And Regulations State and local laws and regulations vary regarding who may perform various aspects of diabetes care. Often there is no statewide policy. Rather, policy is determined district by district. Regardless of state and local laws, requirements of federal laws must be met. Some states have passed school diabetes care legislation.

20 State School Diabetes Care Laws Virginia California Washington Wisconsin Tennessee North Carolina Oregon Montana

21 Pending/Active School Diabetes Care Legislation Connecticut New Jersey South Carolina Rhode Island New Jersey Pennsylvania Illinois

22 What The Laws Covered Require staff be trained to assist students with diabetes at school and on field trips, etc. Insulin administration Glucagon administration Require classroom bg monitoring and allow diabetes management on school campuses or at school activities Extra absences

23 Health and Education Access for Students with Diabetes Act HR3178 introduced to House in October 2003 Ensures students have access to their diabetes supplies while at school Non-compliance may result in withdraw of drug free school grants Urge your MOC to sign on as a co-sponsor

24 School Diabetes Care Resources Helping the Student with Diabetes Succeed: A Guide for School Personnel developed by National Diabetes Education Program School Initiative. May be downloaded from or accessed via Diabetes Care Tasks at School: What Key Personnel Need to Know is a series of web-based training modules that can be downloaded from the ADAs website at Introduction and support of ADAs model school bill to state legislatures. Comprehensive information may be found on ADAs website at ADAs National Call Center representatives available to assist families experiencing difficulties at education, negotiation, and litigation stages. Call DIABETES for school packet and assistance.

25 Helping the Student with Diabetes Succeed

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27 Diabetes Care Tasks at School Diabetes Care Tasks at School WHAT KEY PERSONNEL NEED TO KNOW

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29 How You Can Help Educate school policy makers about appropriate diabetes care at school and how good care benefits everyone. Work together with other parents, interested individuals and organizations to create policies to meet our kids medical needs and to ensure equal access. Keep the Association informed of any action you take against school discrimination. Your actions may help another child. Call DIABETES.