SAFE AT SCHOOL: HOW POLICY CHANGE ENHANCES THE MEDICAL SAFETY AND ACCESS TO EQUAL OPPORTUNITY IN EDUCATION Crystal C. Jackson, Associate Director Legal Advocacy, ADA CDC Diabetes Translation Conference 2008 Orlando, FL
TO PREVENT AND CURE DIABETES
AND TO IMPROVE THE LIVES OF ALL
PEOPLE AFFECTED BY DIABETES
School & Diabetes
Diabetes care is 24/7
Child with diabetes cannot take a break
Smooth transition from home to school
Access to equipment, medication, and assistance is essential
Development of written care plans
Why is care at school important?
To prevent short-term complications such as hypoglycemia
To prevent or delay long-term complications such as heart and kidney disease and blindness
To ensure that child has the best possible opportunity achieve academic success and safely participate and benefit from all school activities
Goals of School Diabetes Care
A medically safe environment for students with diabetes.
Equal access to educational opportunities and school-related activities.
Enable academic achievement and enhance quality of life.
Section 504 of the Rehabilitation Act of 1973 (Section 504)
Americans with Disabilities Act (ADA)
Individuals with Disabilities Education Act (IDEA)
State law and regulations
Common Barriers to Care Despite Legal Protections
Failure to have trained staff to assist students
School’s lack of knowledge about diabetes
Refusal to administer insulin and glucagon
Lack of coverage during field trips and extracurricular activities
Refusal to allow self-management where the student is
Refusing to enroll child or sending child to “diabetes school”
Blood glucose testing
In the clinic
In the classroom
Supervision: nurse vs. student vs. school personnel
In the clinic
In the classroom
School nurse not available at all places at all times.
Reality is that most schools do not have a full-time school nurse.
Even a full-time school nurse does not solve the whole problem.
ADA supports a safe model that utilizes trained school personnel in the absence of a school nurse.
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 wherever 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.
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:
SAS AND ADA APPROACH
Educate school personnel about diabetes and legal obligations.
Negotiate using resources such as NDEP guide, Florida guidelines.
Litigate if necessary – OCR, due process, courts
Legislate if all else fails and clear legal barriers exist.
SAFE AT SCHOOL EFFORTS RESULTING IN POLICY CHANGE
School diabetes care legislation passed in 17 states.
U.S. Department of Justice settlement with two major day care providers.
U.S. Department of Education agreements resulting in improved standards of care for students with diabetes.
Lawsuit settlement with California Department of Education (federal law vs. state law)
School diabetes care laws enacted in 18 states
School diabetes care law legislation active in 5 states
LEGISLATE Consider changing state law or policies if current laws and policies do not provide students with diabetes the protection they need
Board of Nursing Action: Nevada Colorado SCHOOL DIABETES CARE LAWS Hawaii Montana Washington Oregon California Oklahoma South Carolina Tennessee Texas Nebraska Utah Indiana
School Diabetes Legislation Pending in: Massachusetts New Jersey Rhode Island “ Advocate for children with diabetes at local, state and national levels.” Sign up at the ADA Action Center: www.diabetes.org/advocacy Pennsylvania Illinois
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.
CDE Lawsuit Settlement
California Department of Education Legal Advisory
Permits non-medical school employees to administer insulin when a nurse is not available
California school districts must meet requirements of federal law – even if nurse is not available
Prohibits sending students to a particular school as a condition of receiving medication and care
But not all policy change involves a fight…..
Examples of Collaboration Resulting in Policy Change