1. Keeping Kids with Diabetes Safe at School Keeping Kids with Diabetes Safe at School Crystal Jackson, Associate Director, Legal Advocacy American Diabetes Association November 2011 – Seattle, WA

2. ADA Mission To prevent and cure diabetes and improve the lives of all people affected by diabetes. We deliver mission through: – Research – Information & Support – Advocacy & Public Awareness

3. ADA Youth Initiatives Safe at School Campaign National Youth Advocate Camp Everyday Wisdom kit for newly diagnosed

4. Session Key Points Safe at School Campaign School diabetes care challenges Federal and state laws Development of 504 and strategies to overcome challenges Resources

5. 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. Transition to independence.

6. Safe at School Campaign All school staff members need to have a basic knowledge of diabetes and know who to contact for help. Students should be permitted to provide self-care whenever they are at school or school-related activities. The 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.

7. 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 Pediatric Endocrine Society Pediatric Endocrinology Nursing Society Endocrine Society Safe at School Principles Endorsed by:

8. Who Is Discriminated Against Because of Diabetes? Wilson Celeste Barslou Connor Devin Jackson

9. Failure to have trained staff to assist students with diabetes. Schools refusal to administer insulin. Schools refusal to administer glucagon. No coverage during field trips and extracurricular activities. Schools refusal to permit blood glucose checks outside of the health clinic or office. Sending child to diabetes school. Schools refusal to allow a student to attend the school at all. Challenges Facing Students with Diabetes

10. Americans with Disabilities Act Section 504 of the Rehabilitation Act of 1973 Individuals with Disabilities in Education Act State laws Laws to Help Achieve School Diabetes Care Goals Section 504

11. ADA and 504 - Civil Rights Laws Prohibit discrimination on the basis of disability. Also prohibit retaliation for asserting the right not to be discriminated against. NOT limited to disabilities that affect learning/academic progress.

12. Americans with Disabilities Act (ADA) Covered schools: public, private, schools and day care centers – Not covered: religious institutions (unless they receive federal funds) Requirements – Schools must: make reasonable changes in practices and policies to: – avoid discrimination – afford equal opportunity, unless doing so imposes an undue burden.

13. Section 504 Covered schools: All public schools and private schools that receive federal financial assistance. Requirements – 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 equal opportunity to participate in nonacademic and extracurricular activities.

14. Substantial Limitation of Major Life Activities ( ADA & 504) Endocrine function Caring for ones self Performing manual tasks Eating Walking Breathing Learning Working Speaking NEED NOT BE LEARNING!

15. 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.

16. Establishment of Eligibility Must do more than simply state child has diabetes Note from clinician stating that your child has a disability because he is substantially limited in endocrine function Note can also explain other major life activities that are limited when your child is experiencing hypo- or hyper-glycemia

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

18. 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

19. Individuals with Disabilities Education Act (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.

20. Coverage Under IDEA? Another disability – other than diabetes - that limits learning/academic progress Frequent swings in blood glucose adversely impact learning

21. Review: Comparing the Laws Section 504: public and private school receiving federal funds; 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.

22. State Laws and Regulations State and local laws and regulations (i.e. Board of Nursing regs) 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. Consider BON action (NV, CO, UT)

23. Washington State Passed in 2005 Schools must develop self-care and access policies Parent Designated Adult Training by hcp as per parent School district must designate hcp to coordinate care Immunity for school district, employee, PDA

24. Oregon Permits glucagon administration by trained non-medical personnel Establishes training protocol and components Immunity for schools and trained personnel

25. CA Laws School diabetes care law passed in 2005 Lawsuit settlement agreement in K.C. et al. v. Jack OConnell, et al. Case currently before the CA Supreme Court Nurse Practice Act does not prohibit delegation of tasks that do not require significant scientific and technical knowledge. Education Code allows unlicensed personnel to assist students by administering medication or helping them to do so

26. School Diabetes Care Laws Arizona Arkansas California Connecticut Florida Hawaii Illinois Indiana Kentucky South Carolina Tennessee Texas Utah Virginia Washington West Virginia Wisconsin Massachusetts Montana Nebraska New Jersey North Carolina Oklahoma Oregon Rhode Island Board of Nursing Action: Nevada, Colorado, Utah

27. Other Considerations

28. School Menu Refer to USDA Guidance Schools must make food substitutions or modifications for students with disabilities Address menu and carb counts in your child 504 Plan or IEP Work with your school nurse and a dietician to calculate carb counts if not already provided

29. College Boards PSAT, SAT, AP Tests Complete Student Eligibility Form Must provide documentation which should include 504 plan Typical accommodations for students with diabetes include frequent breaks, longer breaks, access to supplies and snacks

30. Post-Secondary Rights Compliance with Section 504 and ADA FAPE not required No identification requirement Must provide academic adjustments so that it does not discriminate because of students diabetes Documentation required – high school 504 plan is not enough

31. Diabetes Medical Management Plan (DMMP) Individual Health Plan (IHP) Section 504 Plan (504) Individualized Education Program (IEP) Written Plans DMMP IHP 504 IEP

32. Diabetes Medical Management Plan Document developed and signed by your childs health care provider. This can also be a health care plan, diabetes care plan or physicians orders 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. DMMP

33. 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

34. 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

35. 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

36. Individualized Health Care Plan Developed by the school nurse in collaboration with hcp and parent/guardian Based on the DMMP Incorporates an assessment of the school environment and the student Used to outline the diabetes management strategies and personnel needed IHP

37. 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.

38. 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.

39. 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.)

40. School Plans for Diabetes Management PlanWhat it coversWho writes it DMMP Doctors Orders – details all aspects of routine and emergency diabetes care. Health care team. 504 Plan IEP Team Education plans - details both health care and educated related aids, services, accommodations, and special education services the student may need. 504 team IEP team IHP School nursing care plan - specifies how diabetes care as prescribed in the DMMP will be delivered in the school School nurse Quick Reference Resource/Tool for school staff - how to recognize and treat hypo or hyperglycemia School nurse

41. Back-To-School Strategies Approach in spirit of cooperation and work with the school team. Provide supplies, snacks, quick-acting form of glucose. Encourage your child to wear a medical ID jewelry.

42. ADA Legal Advocacy Strategies Meeting challenges 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.

43. Education Resources American Diabetes Association Position Statement: Care of Children with Diabetes in the School and Day Care Setting ADA School Discrimination Packet Training set for school personnel 1-800-DIABETES www.diabetes.org/safeatschool

44. Educate and Negotiate Resources Diabetes Care Tasks at School: What School Personnel Need to Know: www.diabetes.org/schooltraining ADA training modules and video to be used by health care professionals to train school personnel n diabetes care tasks.

45. A Program for School Nurses presented by the National Association of School Nurses www.nasn.org Goal: To provide the school nurse with the knowledge, skills & resources to facilitate safe and effective diabetes management at school Helping Administer to the Needs of the Student with Diabetes in School

46. National Diabetes Education Program www.YourDiabetesInfo.org 1-888-693-NDEP A joint program of NIH and CDC An Updated Edition of NDEPs Comprehensive School Guide produced by the NDEP, a federally sponsored partnership of the NIDDK of the NIH and the DDT of the CDC, and more than 200 partner organizations.

47. Negotiation Strategies Make requests and note objections in writing – Email works! Obtain expert opinion letter from your childs health care provider. Gather resources to support your position. Remember compromise. Push for your ideal situation, but focus on the absolute necessities and consider compromising on the non-necessities.

48. When education and negotiation fail… Preliminary step: School district due process or grievance proceedings File complaint with U.S. Department of Education, Office of Civil Rights; Department of Justice; or state department of education File lawsuit in state or federal court Litigate

49. School diabetes care laws, regulations, or policies enacted in 28 states. Legislate Legislate if educate, negotiate, and litigate are not successful. Consider changing state law or policies if current laws and policies do not provide students with diabetes the protection they need

50. Become a Diabetes Advocate Sign up at the ADA Action Center http://advocacy.diabetes.org Receive updates on advocacy issues in the U.S. Congress, your state legislature, and the ADAs Safe at School campaign