PUMPING INSULIN AT SCHOOL

1. 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. 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. 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. 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. 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. 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. 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. What’s 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. Common School DiabetesCare 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. 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. Overcoming School Pumping Challenges: Negotiate • Work with your child’s diabetes health care team to develop Diabetes Medical Management Plan (DMMP) or physician’s orders before school begins. • Set up meeting with school personnel before school begins so everyone understands your child’s 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. DMMP • Document developed and signed by your child’s health care provider. • Sets out your child’s 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 child’s regimen, level of self-management, or school circumstances change.

13. 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. 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. 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. 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. Implementation Implement through written education plan – usually a Section 504 Plan.

18. 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. 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. 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. 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. 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. State Laws • California • Connecticut • Hawaii • Kentucky • Massachusetts • Montana • Nevada (BON policy decision) • North Carolina • Oregon • South Carolina • Tennessee • Texas • Virginia • Washington • Wisconsin

24. 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 Governor’s signature)

25. 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. 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 CWD’s “Friends for Life.” Open to FFL attendees. • Volunteer Attorney Network development. Interested? Know someone who is interested?

27. 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 • Legal Rights of Students with Diabetes http://www.diabetes.org/advocacy-and-legalresources/attorneymaterials/legalrights.jsp • 1-800-DIABETES and www.diabetes.org • www.childrenwithdiabetes.com

28. 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. Safety + Access = School Success