PUMPING INSULIN AT SCHOOL

1. 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. ADA MISSION TO PREVENT AND CURE DIABETES AND TO IMPROVE THE LIVES OF ALL PEOPLE AFFECTED BY DIABETES

3. WHO IS DISCRIMINATED AGAINST BECAUSE OF DIABETES? 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 Bailey Boxall Jim Radermacher and family

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

5. SAFE AT SCHOOL CAMPAIGN PRINCIPLES All school staff members need to have a basic knowledge of diabetes and know who to contact for help. 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. Students should be permitted to provide self-care whenever they are at school or school-related activities.

6. SAFE AT SCHOOL PRINCIPLES ENDORSED BY: American Academy of PediatricsAmerican Association of Clinical EndocrinologistsAmerican Association of Diabetes EducatorsAmerican Diabetes AssociationAmerican Dietetic AssociationChildren With DiabetesDisability Rights Education and Defense FundJuvenile Diabetes Research FoundationLawson Wilkins Pediatric Endocrine SocietyPediatric Endocrinology Nursing Society

7. 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. TEAM APPROACH TO ACHIEVE • Parent • Student • Student’s health care provider • School nurse as facilitator and coordinator of care • School administrator • Teachers • Other school personnel

9. 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. What’s 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. 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. 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. Substantially Limits … • Unable to perform (at all) • Significantly restricts ability to perform

14. Major Life Activities • Caring for one’s self • Performing manual tasks • Eating • Walking • Breathing • Learning • Working • Speaking

15. Evaluation Required Schools must conduct an evaluation if suspected in need of special education or related services or if requested by parent.

16. 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. What is a Section 504 Plan 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.

18. 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. 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.

20. 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. 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. 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. 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. 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. 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. Common School DiabetesCare 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. 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. EDUCATE SCHOOL PERSONNEL • Diabetes Basics What Is Diabetes • Skill instruction for diabetes care tasks • School district policy, federal and state laws

29. 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

31. RESOURCES YOU CAN USE • NDEP “Helping the Student with Diabetes Succeed: A Guide for School Personnel”:www.diabetes.org/discrimination • click on “school”, click on “NDEP’s: 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.

32. RESOURCES YOU CAN USE ADA Diabetes Care Tasks at School: What School Personnel Need to Know: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.

33. RESOURCES YOU CAN USE • 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” • Your School & Your RightsOverview of how to protect students with diabetes against discrimination by schools and day care centers. • Education Discrimination MaterialsCollection of school advocacy materials to assist families in securing appropriate diabetes care at school. • School Legislative EffortsState school diabetes care laws to protect students with diabetes. • School Discrimination Resources Organizations and agencies that can provide assistance to families in securing appropriate school diabetes care.

34. 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. 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. 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. NEGOTIATE • Use ADA’s, pump company’s, and other resources to negotiate with school administrators • Use knowledge of student’s rights, materials, and DMMP, IHP, and 504 as negotiating tools • Collaboration to develop materials and guidelines with other organizations • Coalitions i.e. PTA, AADE, AAP

38. 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.

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

45. CALIFORNIA • Law passed in 2003 • Trained volunteers may administer glucagon • Student self-care anywhere, anytime permitted • Development of glucagon training guidelines by CADPCP

46. 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. 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.org

48. 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. ADA Youth Initiatives • Safe at School Campaign • National Youth Advocate • Camp • Family Resource Network (SD mtg on 4/21) • WIZDOM • SWFD

50. Safety + Access = School Success