1. www.diabetes.org 1-800-DIABETES PUMPING INSULIN AT SCHOOL ADA Safe at School Campaign: Your Child, Your School, and Your Rights Crystal Jackson, Manager American Diabetes Association Government Affairs & Legal Advocacy March 2006

2. www.diabetes.org 1-800-DIABETES Goals for School Diabetes Care Schools must provide a medically safe environment for students with diabetes. Students with diabetes must have the same access to educational opportunities and school-related activities as their peers.

3. www.diabetes.org 1-800-DIABETES ADA MANTRA Accomplish through education, negotiation, litigation, legislation. Educate school personnel about diabetes and legal obligations. Negotiate using resources such as NDEP school guide, ADA resources, and pump companies. Litigate if necessary – OCR, due process, state court, federal court. Legislate if all else fails and clear legal barriers exist.

4. www.diabetes.org 1-800-DIABETES ADA Safe at School Campaign Statement of Principles All school staff members need to have a basic knowledge of diabetes and know who to contact for help. School nurse is primary provider of diabetes care, but back-up school personnel must be trained to provide care when school nurse is not available. Students who are able to do so should be permitted to self-manage their diabetes wherever they happen to be – classroom, auditorium, cafeteria, athletic field, school bus.

5. www.diabetes.org 1-800-DIABETES SAS Endorsers to Date American Academy of Pediatrics American Association of Clinical Endocrinologists American Association of Diabetes Educators American Dietetic Association Children with Diabetes Juvenile Diabetes Research Foundation Lawson Wilkins Pediatric Endocrine Society Pediatric Endocrine Nursing Society

6. www.diabetes.org 1-800-DIABETES How Does SAS Work? Educate, negotiate, litigate and legislate Educate parents about legal rights through materials, direct assistance, and workshops. Educate and negotiate with educators and school nurses through resources and training. Litigate when necessary (Kindercare, CA lawsuits) Effect policy change at state level (legislation) and local level (school board). Build grassroots support (parents and caregivers like you!) to educate and lobby policy decision makers. Coalition building to support policy change efforts.

7. www.diabetes.org 1-800-DIABETES Legal Protection of Students with Diabetes: Federal Laws Section 504 of the Rehabilitation Act of 1973 (Section 504) Americans with Disabilities Act (ADA) Individuals with Disabilities Education Act (IDEA)

8. www.diabetes.org 1-800-DIABETES Whats The Difference? Section 504: students attending public and private school receiving federal funds covered; major life activity impacted does not need to be learning. ADA: same as 504, except covers daycares and camps; does not cover religious affiliated schools/programs unless federal funds received. IDEA: special ed law; must demonstrate that diabetes or another disability adversely impacts ability to learn and to progress academically.

9. www.diabetes.org 1-800-DIABETES Common School Diabetes Care Challenges Lack of trained back-up personnel Refusal to administer insulin, glucagon, bgm Fear of newer technology such as the pump. Lack of coverage for field trips and extracurricular activities Refusal to permit student self-care on the spot Sending child to diabetes school Refusal to enroll child

10. www.diabetes.org 1-800-DIABETES Insulin Pump Challenges: Educate to Overcome Fear and ignorance Perception that pumping is complicated Perception of increased responsibility and workload for school nurse and other school personnel Fear of damaging pump Resistance to learning about operation of equipment Concern that younger children will push buttons and accidentally dose

11. www.diabetes.org 1-800-DIABETES Overcoming School Pumping Challenges: Negotiate Work with your childs diabetes health care team to develop Diabetes Medical Management Plan (DMMP) or physicians orders before school begins. Set up meeting with school personnel before school begins so everyone understands your childs diabetes needs and how needs will be met. Address insulin pump protocols and concerns in a Section 504 plan or other written education plan. Provide school with supplies, snacks, and current emergency contact information. Work with your school nurse to arrange for pump company to provide training to school personnel.

12. www.diabetes.org 1-800-DIABETES DMMP Document developed and signed by your childs health care provider. Sets out your childs school diabetes care regimen. Used as a basis for development of Section 504 Plan or other written education plan. Should be updated annually or if your childs regimen, level of self-management, or school circumstances change.

13. www.diabetes.org 1-800-DIABETES DMMP Insulin Regimen Type of insulin Administration time Insulin to carb ratio Correction factor Sliding scale Authorization for parent to adjust doses without hcp approval Level of self-care

14. www.diabetes.org 1-800-DIABETES Pump Specifics Type of pump Basal rates Type of infusion set Level of self-care Identify when assistance will be needed Identify circumstances in which infusion set should be changed Other insulin delivery method if pump is inoperable

15. www.diabetes.org 1-800-DIABETES Assistance Needed? Carb counting Amount of bolus for carbs and correction Calculate and set basal rates (incl. temporary) Calculate and set boluses Disconnect/reconnect/suspend/resume pump Prepare reservoir and tubing Insert infusion set Troubleshoot alarms and malfunctions

16. www.diabetes.org 1-800-DIABETES What Does This Mean? Schools must: Identify students with disabilities Provide needed services and aids Educate with other children Allow parental participation in decisions Equal access to participation Treat students with fairness No retaliation

17. www.diabetes.org 1-800-DIABETES Implementation Implement through written education plan – usually a Section 504 Plan.

18. www.diabetes.org 1-800-DIABETES Possible Contents Related To Pumping Identify trained school personnel Training contents and when trained Child independent or need assistance? Allow to bolus on the spot if independent Allow to keep insulin and supplies with student Privacy if desired Safe-keeping and storage if pump is disconnected (P.E.)

19. www.diabetes.org 1-800-DIABETES How to Litigate? File complaint with U.S. Department of Education, Office of Civil Rights. School district or state due process/grievance procedure/hearing. File complaint in state court. File complaint in federal court.

20. www.diabetes.org 1-800-DIABETES Litigate: Office Of Civil Rights (OCR) Division of U.S. Department of Education responsible for enforcing Section 504 Complaint must be filed to initiate process OCR will investigate Settlement agreement – Commitment to Resolve Henderson, NC CTR required school to train personnel on pump

21. www.diabetes.org 1-800-DIABETES School Policies, State Laws and Regulations Vary from state to state, district to district, school to school. Sometimes sets out who can perform medical tasks. Regardless, there must be compliance with federal laws. Some states have passed school diabetes care legislation.

22. www.diabetes.org 1-800-DIABETES 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.

23. www.diabetes.org 1-800-DIABETES State Laws California Connecticut Hawaii Kentucky Massachusetts Montana Nevada (BON policy decision) North Carolina Oregon South Carolina Tennessee Texas Virginia Washington Wisconsin

24. www.diabetes.org 1-800-DIABETES 2006 School Legislation Efforts Michigan - comprehensive Nebraska - self-care New Jersey - comprehensive New York - glucagon Oklahoma - comprehensive Pennsylvania - comprehensive Rhode Island - glucagon Utah – glucagon (passed both Houses, waiting for Governors signature)

25. www.diabetes.org 1-800-DIABETES SAS Campaign WE NEED YOU! School legislation – NJ, NY, PA, RI. Contact Steve Habbe at SHabbe@diabetes.org Impact local policy Help other parents Create awareness in your community Are you a PTA member? Sign the petition to show your support Register to become a SAS advocate at http://advocacy.diabetes.org

26. www.diabetes.org 1-800-DIABETES Other Current ADA Advocacy Initiatives Call to Congress in Washington, DC June 7- 9. Register on ADA website. Submit quilt square to CWD to be displayed on the Mall. ADA school advocacy train-the-trainer workshop at CWDs Friends for Life. Open to FFL attendees. Volunteer Attorney Network development. Interested? Know someone who is interested?

27. www.diabetes.org 1-800-DIABETES Resources NDEP: Helping the Student with Diabetes Succeed: A Guide for School Personnel Diabetes Care Tasks at School:What Key Personnel Need to Know (ADA) www.diabetes.org/schooltraining www.diabetes.org/schooltraining Legal Rights of Students with Diabetes http://www.diabetes.org/advocacy-and- legalresources/attorneymaterials/legalrights.jsp 1-800-DIABETES and www.diabetes.orgwww.diabetes.org www.childrenwithdiabetes.com

28. www.diabetes.org 1-800-DIABETES Pump Manufacturers Animas Corporation 1-877-YES-PUMP (937-7867) www.animascorp.com Medtronic MiniMed, Inc. 1-800-MINIMED (646-4633) www.minimed.com Disetronic Medical Systems, Inc. 1-800-280-7801 www.disetronic-usa.com Deltec Cosmo 1800-826-9703 www.deltec.com

29. www.diabetes.org 1-800-DIABETES Safety + Access = School Success