Jim McGowan, Midwest State Advocacy Director American Diabetes Association

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1 Jim McGowan, Midwest State Advocacy Director American Diabetes Association Women in Government Midwestern Regional Conference Des Moines, IA July 20, 2012

2 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 2

3 Diabetes Today >13,000 children diagnosed with type 1 each year Estimated 75% of newly diagnosed cases occur in individuals < 18 years old Dramatic increase in type 2 due to prevalence of childhood overweight and inactivity 3 Improvements in technology and knowledge have enabled better care, but have increased management demands

4 Safe at School Campaign: Our Goals 1. Children with diabetes are medically safe at school. 2. Children with diabetes have the same access to educational opportunities as do other children. 3. Provide support for transition to independence.

5 Is a Full Time School Nurse the way to reach our goals? ADA supports goal of full time nurses. However: Most schools do not have a full-time school nurse. Even a full-time school nurse is not at all places at all times. The needs of students with diabetes must be met. 5 ADA supports a safe model that utilizes trained school personnel in the absence of a school nurse.

6 Who s keeping them safe at school? Parents can t be there all the time And neither can a school nurse. 6

7 Safe at School Campaign Principles All school staff members need to have a basic knowledge of diabetes and know who to contact for help. 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. Students should be permitted to provide self-care whenever they are at school or school-related activities. 7

8 Who Is Discriminated Against Because of Diabetes? 8

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

10 The Solution 10

11 Based on Comprehensive School Guide produced by the National Diabetes Education Program, a federally sponsored partnership of the NIDDK of the NIH and the DDT of the CDC, and more than 200 partner organizations. 11

12 Safe at School Principles Endorsed by: 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 The Pediatric Endocrine Society Pediatric Endocrinology Nursing Society The Endocrine Society 12

13 Working through disagreement: Our Legal Advocacy Strategies EDUCATE. Negotiate. Litigate. Legislate. Educate school personnel about diabetes and legal obligations. Negotiate using resources such as NDEP school guide, ADA resources, and medical device trainers. Litigate if necessary OCR, due process, state court, federal court. Legislate if all else fails and clear legal barriers exist. 13

14 Educate Our Primary Strategy: Families Schools Health Care Professionals Attorneys Resources: Diabetes Request for School Discrimination Packet Request to Speak with Legal Advocate ADA Position Statement NDEP school guide Printed materials Parent Advocacy Workshops Multimedia Training Materials for School Staff Trainings for attorneys, health care professionals, and other volunteers Attorney Materials Bank

15 Solutions for Schools Diabetes Care Tasks at School: What School Personnel Need to Know FREE ADA training modules and video to be used by health care professionals to train school personnel in diabetes care tasks. 15

16 Laws to Help Achieve School Diabetes Care Goals Americans with Disabilities Act Section 504 of the Rehabilitation Act of 1973 Individuals with Disabilities in Education Act State laws 16

17 Federal Laws Protecting Students with Diabetes Section 504: Public and private school receiving federal funds. 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.

18 Federal law requires schools to: Identify children with disabilities such as diabetes. 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 services they need in order to access equal opportunity to participate in academic and nonacademic events and extracurricular activities. 18

19 State Laws and Regulations 19 State and local laws and regulations (i.e. Board of Nursing regulations) 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. School diabetes care legislation passed in states with legal barriers to implementing federal law. Board of Nursing regulatory reform

20 Elements of a model bill Allow school districts to train school staff volunteers Allow trained school staff volunteers to provide care when the school nurse isn t available Require stakeholders and state agencies to develop training guidelines Allow capable students to self-manage Require the development of written care plans Prohibit diabetes schools Provide immunity for school districts and school 20

21 What Does Your State Law Say? Is delegation of diabetes care tasks by the school nurse permitted, prohibited, or unclear? Is there a statute that addresses medication administration in the schools? Is there a Good Samaritan law? What is your state s nurse to student ratio? What state specific resources are available? 21

22 Win-Win Solution Having appropriate legal protections ensures: A safe and healthy school environment Optimizes the student s potential to achieve academic success Full participation in all school activities. Federal law + state law = SAFETY, GOOD HEALTH, AND ACADEMIC SUCCESS! 22