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, Legal Advocacy American Diabetes Association Government Affairs & Legal Advocacy Spring 2007

2. www.diabetes.org 1-800-DIABETES TO PREVENT AND CURE DIABETES AND TO IMPROVE THE LIVES OF ALL PEOPLE AFFECTED BY DIABETES ADA MISSION

3. www.diabetes.org 1-800-DIABETES Bailey Boxall Children and adults with diabetes in school and day care centers, the workplace, correctional facilities and in contact with police, and in access to places of public accommodation Jim Radermacher and family WHO IS DISCRIMINATED AGAINST BECAUSE OF DIABETES?

4. www.diabetes.org 1-800-DIABETES Children with diabetes are medically safe at school ADA SAFE AT SCHOOL CAMPAIGN GOALS Children with diabetes have the same access to educational opportunities as do other children

5. www.diabetes.org 1-800-DIABETES All school staff members need to have a basic knowledge of diabetes and know who to contact for help. SAFE AT SCHOOL CAMPAIGN PRINCIPLES Students should be permitted to provide self-care whenever they are at school or school-related activities. What Is Diabetes School nurse is primary provider of diabetes care, but other school personnel must be trained to perform diabetes care tasks when the school nurse is not present.

6. www.diabetes.org 1-800-DIABETES American Academy of Pediatrics American Association of Clinical Endocrinologists American Association of Diabetes Educators American Diabetes Association American Dietetic Association Children With Diabetes Disability Rights Education and Defense Fund Juvenile Diabetes Research Foundation Lawson Wilkins Pediatric Endocrine Society Pediatric Endocrinology Nursing Society SAFE AT SCHOOL PRINCIPLES ENDORSED BY:

7. 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.

8. www.diabetes.org 1-800-DIABETES TEAM APPROACH TO ACHIEVE Parent Student Students health care provider School nurse as facilitator and coordinator of care School administrator Teachers Other school personnel

9. 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)

10. www.diabetes.org 1-800-DIABETES Whats The Difference? Section 504: students attending public and private school receiving federal funds covered; the major life activity substantially limited 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.

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

12. 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

13. www.diabetes.org 1-800-DIABETES Substantially Limits … Unable to perform (at all) Significantly restricts ability to perform

14. www.diabetes.org 1-800-DIABETES Major Life Activities Caring for ones self Performing manual tasks Eating Walking Breathing Learning Working Speaking

15. www.diabetes.org 1-800-DIABETES Evaluation Required Schools must conduct an evaluation if suspected in need of special education or related services or if requested by parent.

16. www.diabetes.org 1-800-DIABETES Section 504 Requires Evaluation Meeting Evaluation must be made by a group of persons who are: Knowledgeable about your child Knowledgeable about the evaluation data Knowledgeable about services options Upon determination of 504 eligibility,a Section 504 Plan is developed by school team

17. www.diabetes.org 1-800-DIABETES A written document where the parents and school agree on the services and modifications that the student needs. Each child with diabetes has individual needs. A Section 504 Plan must be individually developed. What is a Section 504 Plan

18. www.diabetes.org 1-800-DIABETES Possible 504 Plan 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 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.

20. www.diabetes.org 1-800-DIABETES Pump Specifics Type of pump Type of insulin 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

21. www.diabetes.org 1-800-DIABETES DMMP Insulin Regimen Type of insulin Administration time Insulin to carb ratio Correction factor Bolus calculator and/or sliding scale Authorization for parent to adjust doses without hcp approval Level of self-care

22. www.diabetes.org 1-800-DIABETES Assistance Needed? Carb counting Calculate bolus for carbs and correction Calculate and set basal rates (incl. temporary) Push buttons – especially for younger children Disconnect/reconnect/suspend/resume pump Prepare reservoir and tubing Insert infusion set Troubleshoot alarms and malfunctions

23. www.diabetes.org 1-800-DIABETES Supplies Provided by Parent Blood glucose meter, strips, lancet with lancet device Blood/urine ketone strips Insulin syringes/insulin pen Insulin – vial, cartridge Pump cartridge, reservoir Pump infusion sets and inserter if used Pump batteries Glucagon emergency kit Quick-acting form of carb such as fruit juice, glucose tabs Snacks Pump resources such as manual, DVD, alarm card

24. www.diabetes.org 1-800-DIABETES A Word About CGMS Agreement on response to alarms Confirm blood glucose results with fingerstick before taking any action Receiver is not a pager or cell phone-needs to be kept close by or on student Educate personnel about CGMS and what they can expect Write into DMMP and 504 plan

25. www.diabetes.org 1-800-DIABETES Implementation of DMMP Implement through written education plan – usually a Section 504 Plan, but sometimes an Individualized Education Program (IEP), or other written plan.

26. www.diabetes.org 1-800-DIABETES Common School Diabetes Care Challenges Lack of trained back-up personnel Lack of knowledge by school nurse and other school staff Old school thinking about diabetes care 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

27. 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.

28. www.diabetes.org 1-800-DIABETES Diabetes Basics EDUCATE SCHOOL PERSONNEL What Is Diabetes Skill instruction for diabetes care tasks School district policy, federal and state laws

29. 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

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

31. www.diabetes.org 1-800-DIABETES NDEP Helping the Student with Diabetes Succeed: A Guide for School Personnel: www.diabetes.org/discrimination www.diabetes.org/discrimination click on school, click on NDEPs: Helping the Student… A comprehensive guide developed by key federal government agencies, diabetes and educational organizations to educate school personnel about diabetes management at school. RESOURCES YOU CAN USE

32. www.diabetes.org 1-800-DIABETES ADA Diabetes Care Tasks at School: What School Personnel Need to Know: www.diabetes.org/schooltraining www.diabetes.org/schooltraining Training modules to be used by health care professionals to train school nurses and other school personnel in diabetes care tasks. RESOURCES YOU CAN USE

33. www.diabetes.org 1-800-DIABETES ADA Education discrimination packets and individual help at 1-800-DIABETES for your patients ADA Discrimination Web Page: www.diabetes.org/discrimination click on school www.diabetes.org/discrimination Your School & Your Rights Overview of how to protect students with diabetes against discrimination by schools and day care centers.Your School & Your Rights Education Discrimination Materials Collection of school advocacy materials to assist families in securing appropriate diabetes care at school.Education Discrimination Materials School Legislative Efforts State school diabetes care laws to protect students with diabetes.School Legislative Efforts School Discrimination Resources Organizations and agencies that can provide assistance to families in securing appropriate school diabetes care. RESOURCES YOU CAN USE

34. www.diabetes.org 1-800-DIABETES Scientific Support Darby, Wendy, CRNP, PhD: The Experiences of School Nurses Caring for Students Receiving Continuous Subcutaneous Insulin Therapy: Journal of School Nursing: Vol. 22, Issue 6, Pages 336- 344. School nurse fear of pumping can be overcome with education, resources, and hands-on experience.

35. www.diabetes.org 1-800-DIABETES Sci-Support – Acute Complications Arleta Rewer, MD, et al (Barbara Davis Ctr): Predictors of Complications of Children withType 1 Diabetes: JAMA, Vol. 287, No. 19, 5/15/02. Ketoacidosis – 8 per 100 Severe hypoglycemia – 19 per 100

36. www.diabetes.org 1-800-DIABETES More Scientific Support Helms, MA, Clarke WL.: Safe at School: A Virginia Experience: Diabetes Care, March 10, 2007 (Epub). Safe care can be delivered by trained medical and non-medical personnel.

37. www.diabetes.org 1-800-DIABETES Use ADAs, pump companys, and other resources to negotiate with school administrators NEGOTIATE Use knowledge of students rights, materials, and DMMP, IHP, and 504 as negotiating tools Coalitions i.e. PTA, AADE, AAP Collaboration to develop materials and guidelines with other organizations

38. 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.

39. 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.

40. 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 within 180 days of alleged discrimination to initiate process OCR will investigate Settlement agreement – Commitment to Resolve Henderson, NC CTR required school to train personnel on pump

41. 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.

42. 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.

43. www.diabetes.org 1-800-DIABETES State Laws California Colorado (BON regulatory change) Connecticut Hawaii Kentucky Massachusetts Montana Nebraska Nevada (BON regulatory change) North Carolina Oregon South Carolina Tennessee Texas Utah Virginia Washington West Virginia Wisconsin

44. www.diabetes.org 1-800-DIABETES SCHOOL DIABETES LEGISLATION PENDING IN: Massachusetts New Jersey Advocate for children with diabetes at local, state and national levels. Sign up at the ADA Action Center: www.diabetes.org/advocacy www.diabetes.org/advocacy Send an email to Crystal Jackson at cjackson@diabetes.org cjackson@diabetes.org Illinois Indiana Pennsylvania Alabama Oklahoma Tennessee Rhode Island

45. www.diabetes.org 1-800-DIABETES CALIFORNIA Law passed in 2003 Trained volunteers may administer glucagon Student self-care anywhere, anytime permitted Development of glucagon training guidelines by CADPCP

46. www.diabetes.org 1-800-DIABETES CALIFORNIA RESOURCES California Department of Social Services Policy Bulletin for glucagon administration in child care setting http://www.diabetes.org/uedocuments/cacbulletinglucagon.pdf Glucagon Training Standards for School Personnel: Providing Emergency Medical Assistance to Pupils with Diabetes http://web.diabetes.org/Advocacy/school/glucagon.pdf

47. www.diabetes.org 1-800-DIABETES SAS Campaign WE NEED YOU! Impact local policy Help other parents Create awareness in your community Register to become a SAS advocate at http://advocacy.diabetes.orghttp://advocacy.diabetes.org

48. 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 Dana Diabecare USA 1-866-326-2832 www.theinsulinpump.com Roche – Disetronic/Accu-chek Spirit 1-800-280-7801 www.disetronic-usa.com Cozmo – Smiths Medical MD 1-800-826-9703 www.cozmore.com Nipro Diabetes Systems - Amigo 1-888-651-PUMP www.niprodiabetes.com

49. www.diabetes.org 1-800-DIABETES ADA Youth Initiatives Safe at School Campaign National Youth Advocate Camp Family Resource Network (SD mtg on 4/21) WIZDOM SWFD

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