By Paula Eckard, RN, PhD, and & Sharon Pearce, RN, MSN, CRNA
Hard Work Pays off in New Legislation for Diabetic Schoolchildren in NC
Nine-year-old Jason is not allowed to go on field trips or participate in physical education at school. Erica, 11, spends an hour each day in the health room, missing valuable instruction time. William, a high school student, worries he will get arrested because of the supplies he carries in his book bag. And Emily, 8, lies unconscious on the playground while her classmates go back inside after recess. Her teacher is unaware that she is missing or that anything is wrong.
These children, like 17 million other Americans, have diabetes. Unfortunately, children who have diabetes, especially Type 1, have difficulty taking care of their diabetes at school. Studies have shown that school personnel have an inadequate understanding of diabetes.1 As a result, children often suffer embarrassment, neglect, and discrimination because their teachers do not understand that diabetes management requires vigilance 24 hours a day, seven days a week.
One elementary school student describes his experience in class: “I felt very weak and couldn’t concentrate. I told my teacher I needed to check my blood sugar. She panicked and had a fuss and it embarrassed me. That’s what I go through every day.†Another student tells how her needs were ignored: “I was taking a test [and] I told my teacher that I was shaking. I asked her if I could check my blood sugar. She said no. So I got very sick and had to go home.†And another child describes the rejection she has felt at school: “I have had a teacher that hated me because of my diabetes.â€2
Children with diabetes must be given better support at school and more flexibility in managing their disease. Several states have passed legislation to provide a comprehensive, up-to-date approach that supports current medical standards in diabetes care. Such legislation gives children more complete management of their disease. Virginia, Washington, Indiana, and Florida have enacted legislation or statutes. North Carolina joined the ranks by passing legislation in August 2002. Similar bills are pending in Oklahoma, Minnesota, South Carolina, and Massachusetts.
Nurses can play an advocacy role to lobby for bills that will help children manage their diabetes at school more effectively. Their training, professional experience, and commitment to the well-being of children and families empower them to assume this role. We know nurses can bring about legislative change because we did it in North Carolina. As mothers of children with diabetes and as nurses, we began a successful journey to get Senate Bill 911, The Care for School Children with Diabetes Act, passed and signed into law.
Finding Allies
First, we had to get a bill sponsor. Sharon Pearce, RN, MSN, CRNA, spoke with state Sen. Patrick Ballantine (R-New Hanover) about the compelling stories parents had shared with her regarding the problems their diabetic children were having in school. She also told him about her daughter’s experiences at school, including the two episodes of hypoglycemia that led to respiratory arrest and required CPR on both occasions. Ballantine saw the urgency of the problem and joined the cause. He agreed to investigate further and sponsor legislation that would help the estimated 6,000 diabetic children in North Carolina.
Unfortunately, there were anecdotal stories but no data to substantiate the problems. An open letter was distributed that asked for accounts of difficulties that children faced in caring for their diabetes at school. The state chapters of the American Diabetes Association (ADA), the Juvenile Diabetes Research Foundation (JDRF), and chapters of the American Association of Diabetes Educators (AADE) were encouraged to circulate the letter. The letter was posted on websites, placed in endocrinologists’ offices, and given out to members of the diabetic community. More than 200 responses poured into Ballantine’s office.
To get the bill-drafting process started, the ADA provided a model legislative bill. Ballantine realized many different parties would have to be involved in the implementation of such legislation, so he formed an advisory committee of 24 people to hammer out the bill he would introduce. The committee included representatives from the state board of nursing, the Department of Public Instruction, the Diabetes Advisory Council of North Carolina, school nurses, diabetes educators, endocrinologists, lobbyists, and parents of diabetic children.
At gatherings in the diabetic community, Pearce or Ballantine would share information about the pending introduction of the bill and gather more personal stories. At one function, Pearce met another nurse who had a diabetic child, Paula Eckard, RN, PhD. Together they organized parents, wrote and distributed information, and pushed the legislation through the North Carolina General Assembly.
Introducing the Bill
The Care for School Children With Diabetes Act was introduced in the general assembly in June. Ballantine recruited a democratic House sponsor to ensure the bill would have bipartisan support. Cosponsors from both houses and parties also signed onto the bill. After the bill’s introduction, we began to develop lobbying plans and documents. Time was not on our side because the general assembly was well into its short session.
As our lobbying plans emerged and word about the legislation spread, Tamara Burns, a mother of a 4-year-old diabetic, joined our efforts. She organized and expanded our database so we could broadcast information to parents and advocates online. We could reach 2,000 homes in minutes and inform others about the bill’s progress and enlist their help on short notice. This enabled us to recruit people to testify at committee hearings and visit key legislators at critical junctures along the way. The database also enabled us to put out action alerts to ask parents to contact legislators when needed.
Lobby Day
Because policymakers, like most of the public, are largely unaware of the effects of diabetes, we worked to increase awareness. On June 26, shortly after the bill’s introduction, we held a “Lobby Day†for the bill. More than 300 North Carolina parents, children, and other diabetes advocates came to the state capital to show support for the bill. The Charlotte JDRF Chapter even chartered a bus to bring families to Raleigh. On Lobby Day, children and their parents made personal visits to their legislators in hopes the legislators would not be able to tell the children “no.â€
Involving community groups and corporate sponsors was equally important in ensuring the success of the bill. Eli Lilly provided an educational grant for printing brochures. State ADA chapters staffed tables on Lobby Day in the legislative building to provide diabetes information and display the assorted paraphernalia required for diabetes care. Insulin pump manufacturers also set up displays, as did ADA and JDRF chapters. Novartis Pharmaceuticals and Coca-Cola provided refreshments for legislators and Lobby Day participants. Kroger Pharmacy of Raleigh performed more than 100 blood sugar checks for lawmakers and their staff to screen for diabetes and to help legislators understand how children must take care of their diabetes.
After its introduction, the bill was referred to the House Education Committee and then the House Health Committee. We desperately needed successful passage out of these committees so we sent out word through our database asking parents for help. They went to work again, urging committee members to support the bill and to give it a favorable report. Parents also brought their children to committee meetings and testified about the urgent need for the bill. Both the Education and Health committees passed the bill unanimously and sent it to the House for a vote.
Quick Victory
We realized we had cleared important hurdles, but we still faced the biggest tests of all. The bill had to pass the House and then the Senate. Given our previous successes in the committees, we were cautiously optimistic. However, we had also learned politics is a complicated arena, where allegiances can shift and votes evaporate quickly.
We needed 57 votes, a simply majority, for the bill to pass. Several hours into the session, the House speaker finally called for the vote. Lights flashed on the electronic “scoreboard†to register the vote of each legislator. We anxiously waited for 57 votes to appear. When the lights stopped flashing and the last vote registered, we saw that our bill had passed 111 to 0. The bill received unanimous concurrence in the Senate the next day. On September 5, less than three months after its introduction, The Care for School Children with Diabetes Act was signed into law.
Under the new law, the NC Board of Education must adopt uniform guidelines for the development and implementation of individual care plans for the care of diabetic school children. The guidelines must meet or exceed the guidelines for diabetes care at school recommended by the American Diabetes Association. The ADA guidelines recommend, in part, that3 —
* An individualized diabetes care plan be developed by the parent/guardian, the child’s diabetes care team, and the school
* School personnel be trained in the treatment of diabetes and hypoglycemia
* Children have immediate access to diabetes supplies at all times, including glucagon
* Children be allowed to monitor their blood sugar anywhere in school or during any school activity
* Children be allowed to eat a snack anywhere, including the classroom and school bus, to prevent or treat hypoglycemia
* Children be allowed to use the restroom and have access to fluids as necessary
Just the Beginning
When we first started on the road to the bill, experienced lobbyists and lawmakers told us couldn’t be done. However, we were not easily dissuaded. We were fully prepared to return to Raleigh to keep up the pressure until we got the protection children with diabetes needed at school.
Fortunately, our efforts paid off quickly, but our real work is just beginning. We need to inform parents, children, healthcare providers, and educators across the state about the new law and the rights that children with diabetes now have in North Carolina schools.
The more sobering task, however, involves the 45 other states that have no laws to help children take care of their diabetes at school. We urge nurses in these states to get involved and to push for educational and legislative reform. We cannot forget that for children with diabetes, life is difficult already. But diabetes care at school doesn’t need to be.
Paula Eckard, RN, PhD, is a certified childbirth educator and the author of Body and Voice: Maternal Experience in Toni Morrison, Bobbie Ann Mason, and Lee Smith. She is the director of the American Studies Program at the University of North Carolina at Charlotte. Sharon Pearce, RN, MSN, CRNA, is president of the North Carolina Association of Nurse Anesthetists. She served on the board of directors of the Juvenile Diabetes Research Foundation and started and chaired a Walk to Cure Diabetes in High Point, NC, for four years.