In 2014, the Kentucky Legislature passed legislation and the Kentucky Board of Nursing promulgated regulations that allowed for unlicensed school personnel to be trained to assist in the care of children with type 1 diabetes mellitus—formerly called juvenile diabetes—in the absence of a school nurse. The new law confronts a growing problem in Kentucky: Kentucky’s children have less access to care for their medical conditions at school as funding for school health services dwindles and the number of students with special health needs continues to increase. This new law fills the gap for diabetic students, keeps them in school free of discrimination for their disease, and gives them consistent access to health services.
Child Advocacy Today, the medical-legal partnership between Kentucky Children’s Hospital and the Access to Justice Foundation, became involved in the effort to make this change for Kentucky’s diabetic school children and partnered with a coalition of advocacy organizations and other stakeholders to find a solution. Child Advocacy Today offers civil legal aid services—including direct representation, education, and systemic advocacy—to the University of Kentucky’s pediatrics patients.
Here we share a story of diabetes school-health advocacy, but more importantly, we tell Teresa’s story.
Teresa was 7 when she was diagnosed with type 1 diabetes.
A happy, active child, she is one of eight children, with two devoted parents and a lot of love and support from her family and her community. Even so, the diagnosis was life-changing for the young girl living in rural eastern Kentucky in a small Appalachian mountain town. She could no longer live without medication and constant monitoring of her diet and her condition. When she left Kentucky Children’s Hospital in January 2012, she and her parents were new to managing her disease. They knew significant lifestyle changes would be necessary to keep Teresa healthy, but the news they received upon returning home was shocking: Teresa would not be allowed to return to school.
Teresa’s school, McDowell Elementary, part of the Floyd County School District, did not have a school nurse. A small school in a small town, it could not provide nursing services to its students. Teresa’s parents were informed that she would need to transfer out of her “neighborhood” school to another school that had a nurse. The nearest school with a nurse was 30 minutes away.
A transfer was not possible for Teresa for many reasons. Although the school would provide busing, the travel burden on the family was unmanageable. Teresa often needed to leave school early or arrive late due to her diabetes, but the family's vehicle was unreliable, and having young children at home precluded extensive travel to and from a distant school. Further, the family did not want Teresa to change schools. They liked the school and felt confident it gave their children the best education. They had other children in the school and older children who had attended the school, and going to the school meant being part of the McDowell community. Most importantly for Teresa, leaving her school meant that her disease was not just something she needed to manage. It meant that her disease was something that excluded her from her normal life.
When she returned home from the hospital, she did not immediately return to school; Teresa was placed on homebound and received only two hours of instruction per week. She quickly fell behind her peers. Her doctor at the pediatric endocrinology department at Kentucky Children’s Hospital referred her parents to the attorneys at Child Advocacy Today to find a way to help Teresa get back to school.
The short-term solution for Teresa was for her mother to travel to the school, which is less than a mile from their home, to give Teresa her insulin during the day. When the family’s vehicle would not start, her mother would simply walk the distance. Teresa was able to return to her neighborhood school, but having her mother come to school was not a sustainable long-term solution or even the safest option. The arrangement was difficult for the family, but Teresa’s mother intended to continue to go to the school to care for Teresa until Teresa could self-manage.
A Widespread Problem
Teresa was not the only referral Child Advocacy Today received from Kentucky Children’s Hospital’s pediatric endocrinology providers on the exact same problem: the absence of a school nurse prevented children with diabetes from receiving access to an education and enjoying the same opportunities and services as their classmates. Most of these referrals had been resolved quickly, but Teresa’s case illuminated an underlying complication—an advisory opinion from the Kentucky Board of Nursing was being used to deny students diabetic care in schools.
Kentucky has a mandate for school health services. The law requires that school health services be provided for any student who needs them and that they be administered by either a licensed medical professional or a school employee who is delegated tasks by a licensed medical professional. This state law, coupled with federal laws that prohibit discrimination against students with disabilities and ensure that every child has the right to a “free and appropriate education,” should keep students in school with their health care needs readily met.
However, the requirement to provide school health services is an unfunded mandate. The state and federal government generally do not fund these services; therefore, individual school systems must provide them. Some schools in Kentucky manage quite well with a combination of adequate resources (local tax revenue and grants) and favorable geography, but others cannot. Nurses can travel between schools in urban areas, such as Lexington and Louisville, and cover all the schools in the county. But the rolling mountains of Kentucky’s coal country easily turn a 5-mile distance into a 30-minute commute.
Some counties, such as Franklin County (where Frankfort, the capital, is located), have well-funded and well-managed local health departments that supply nursing staff for school-based health services, and Franklin County has been able to offer nursing services in every school. Other counties, however, cannot afford nurses for schools, and a few counties do not have school nurses at all. The school-nurse shortage poses a problem for more students than just those with insulin-dependent type 1 diabetes. School nurses are often the first source of contact for families in their health management, and they are critical to improving public health through the education and care they give school children. While Medicaid can reimburse the services of health department nurses, school nurses are often not permitted to bill for reimbursement by Medicaid. A report by the Kentucky Legislative Research Commission in 2010 concluded that state laws, regulations, and policies must be clarified to close the gap in managing students’ chronic health conditions.
Unlicensed school personnel are normally able to administer medicine under Kentucky law. But a 2006 Kentucky Board of Nursing advisory opinion stated that nurses should never delegate the administration of medications via injectable route. As a result, the Kentucky Board of Nursing and the Kentucky Department of Education told unlicensed school personnel that they were not permitted to assist students who were insulin-dependent. Unlicensed school personnel could not count carbs, calculate insulin doses, or administer insulin to the students. The advisory opinion posed a serious problem for diabetic children and their caregivers.
At least one Kentucky school district had been sued in federal court for refusing to provide diabetes management at children’s neighborhood schools. Children were being transferred to other schools or forced to stay home when a school nurse was not present. For Teresa, however, the answer seemed simple. Her school was willing to allow “para-educators” or “teachers’ aides” to be trained to manage her diabetes. The barrier, however, was the assertion that it was not permitted under Kentucky law. Regardless of what the law actually allowed, the 2006 advisory opinion from the Kentucky Board of Nursing had become de facto law.
Either the Kentucky Board of Nursing needed to carve out an exception to its advisory opinion for diabetic care, or the Kentucky legislature needed to pass a law expressly allowing unlicensed school personnel to give diabetic care. What happened was a compromise that incorporated both.
Crafting a Solution
While talking about the problem among colleagues, we discovered individuals from a variety of professions and organizations who wanted to fix the problem. We formed a coalition and met to discuss the best course of action. We began with a taskforce at the Kentucky Board of Nursing to evaluate whether it should amend its advisory opinion to make an exception for diabetes care.
The American Diabetes Association had promoted the “Safe at School” campaign in several states and had succeeded in resolving these access issues through a variety of regulatory and legislative solutions. The American Diabetes Association’s advocate traveled to Kentucky on multiple occasions to testify at public hearings and to work with our coalition to craft a solution. Working with Kentucky Protection & Advocacy, Kentucky Voices for Health, and other interested organizations, we testified and worked extensively with the coalition to raise support for a solution and advocate for our pediatric endocrinology patients. Many other individuals and agencies passionately testified in support of changing the advisory opinion.
Although the effort to change the Kentucky Board of Nursing’s advisory opinion was ultimately unsuccessful, it was a good first step in laying the groundwork for solving this problem in Kentucky. From there, with the input of health care and education advocates, Kentucky State Representative Robert R. Damron (D-Fayette, Jessamine) and Kentucky State Senator Julie Denton (R-Louisville) introduced House Bill 98 to allow unlicensed school personnel to be trained to care for diabetic school children. Advocates continued to reach out to lawmakers and policymakers to support the initiative. University of Kentucky pediatrics residents, attending the annual Children’s Advocacy Day at the Capitol, spoke with many lawmakers on the topic of diabetes management in schools. The legislation passed on February 21, 2014, and was signed into law by Governor Steve Beshear on March 5, 2014. It amends Kentucky Revised Statute 158.838.
Prior to the implementation of the law on July 15, 2014, and the corresponding new nursing regulations concerning delegation, the Kentucky Board of Nursing led the development of a training program for unlicensed school personnel to manage diabetes care. Members of the University of Kentucky Department of Pediatrics assisted with the curriculum and guidelines for the diabetes training modules, as did many other respected medical professionals throughout the commonwealth.
The Kentucky Board of Nursing in July 2014 revised its advisory opinion concerning the role of nurses in the supervision and delegation of nursing tasks to unlicensed personnel. The Board removed the statement that nurses should not delegate medication administration via injectable route, concluding a two-and-a-half-year effort to permit schools to train laypersons to care for diabetic children in the absence of a school nurse.
Lessons Learned in Systemic Advocacy
This effort to improve school access to insulin for diabetic children had its share of setbacks, but several factors contributed to its ultimate success. First, the issue already had passionate supporters, and Teresa’s story helped others to understand the impact of school health services on a child with a medical condition. Legal advocates are often trained to speak about data and numbers, but a compelling story can give those facts meaning and draw supporters to the cause.
Second, the coalition advocated a feasible solution. Training unlicensed personnel is recommended by national experts, is low cost, has been successfully implemented in other states, and is easy for policy makers to understand. All policy issues do not have straightforward solutions, but when they do, advocating on them is easier.
Third, the right people were involved in the effort. The coalition working on this problem was multidisciplinary, pragmatic, dedicated, and small enough to make decisions quickly. It contained a large national organization, the American Diabetes Association, with access to resources. However, the campaign started as a grassroots effort in Kentucky. That the strategies and solutions were developed by local experts was important. The local experts included a lobbyist who advocates for children’s health issues, Bob Babbage of Babbage Cofounder, and a University of Kentucky Diabetes Nurse Practitioner, Leslie Scott.
The Difference a New Law Makes
Teresa is now in third grade. She has lived with diabetes for almost three years. In that time, she has learned mostly to self-manage, but she still needs supervision. She had a health scare just before school started that reminded her that she needs the adults around her to help her manage her diabetes, because mistakes can be dangerous.
Her school has given her not only an education, but also support in managing her disease. Three of McDowell’s employees were trained under the new program as soon as the training modules became available. Someone is always there to help Teresa, whether in counting her carbs or programming her insulin pump. And Teresa’s parents now feel confident that the school is caring for her needs, giving them much-needed relief. Sitting around the table for Teresa’s 504 meeting before school began this year was much different than in past years. Now difficult problems have easy solutions, and school personnel are knowledgeable and confident about providing Teresa’s diabetes care.
The community of McDowell has been incredibly supportive of Teresa and her family. The McDowell Pharmacy has sponsored Team Teresa at the JDRF’s Walk to Cure Diabetes and has given her family education and support. Several McDowell Elementary staff came to walk with Teresa in the September 2014 JDRF Walk to Cure Diabetes. As Teresa regains her confidence in herself, she learns that diabetes does not have to define her life and that her future is not held hostage by her disease.