|
© 2006 Teresa Ollila Photography |
The Problem A diagnosis of Type 1 diabetes is devastating for a child and for the child's family. It is also one of the mostly costly chronic diseases, both in terms of health care costs and in terms of the unrelenting mindfulness it requires to manage it everyday. The burden of this disease is further exacerbated when uncooperative school policies force parents and other family members to be at school throughout the day to test children's blood glucose levels and administer insulin. Despite federal law, many school policies are still based on fear and misinformation, leaving a disquieting number of families alone in their struggle to make school environments safer and healthier. The stories are alarming. READ MORE >>> The federal laws that protect children with diabetes and other disabilities are, for all practical purposes, toothless without something more than aggrieved parents to enforce them. That's why families in Illinois will continue to face resistance---or worse---when it's time for their children to go to school without THE CARE OF STUDENTS WITH DIABETES ACT (HB146) >>>. The aim of HB146 is to ensure that children with diabetes are safe and healthy at school and that they have access to the same educational opportunities as other children. The bill clarifies federal protections and standardizes a baseline protocol for caring for students with diabetes. Inequitable Solutions Without this legislation, parents have no local authority to turn to. They can appeal to school principals or local school boards but if these entities authored the misguided policies in the first place, parents are unlikely to prevail. Parents only recourse then is to file a complaint with the U.S. Department of Justice, the U.S. Department of Education's Office of Civil Rights, or file a federal lawsuit. Parents can also complain to the Illinois State Board of Education but a recent study shows that without a lawyer, it's highly improbable that parents will find relief there either. (1) The result of these complaints---no matter the outcome---is discrimination. Why? Because protections afforded by federal law become available only to those children whose parents are resourceful or wealthy enough to argue and sustain their case, sometimes over a period of years. READ MORE >>> Parents who care for children with chronic disease already perform the heroic every day. They shouldn't have to add a federal case to their to-do list just so their kids can be as safe at school. But they do. One mother in Illinois campaigned a two-year complaint against her child's school through the Office of Civil Rights. Rather than train its staff, the school opted instead to call 911 every time the child needed help with routine diabetes care. Another mom had to build a team of legal and medical experts to fight a school district that suddenly decided to implement a "No Needles, No Blood" policy, a complete reversal of the school's previous policy. A high-school student, prohibited from carrying the equipment and medication she needed to self-manage her diabetes, became hypoglycemic. Rather than allow the student to treat the low blood sugar, all requests for help and access to means of treatment were denied. The hypoglycemia worsened to the point that the child's life was endangered. Reasonable attempts by the girl's family to resolve the policy conflict ended in the school retaliating to such an extreme degree that the case is now before a federal judge. Other families keep their children on less intensive insulin therapies that do not require a lunchtime injection just to avoid the possibility of losing the goodwill they currently enjoy at their child's school. What Next? At first glance, a nurse in every school is the ideal solution---and not just for students with diabetes, but for all students who must manage chronic illness every day. Unfortunately, even if we had the budget and the political will to enact a staffing mandate, it has no hope of solving the problem. No one, not even a school nurse, can be available at all times. There will be days when the school nurse will be sick. There will be moments when the nurse will be called to two, maybe three places at once. There will be field trips, after school events, and extra-curricular activities where the school nurse won't be available. School by school, district by district, families face a patchwork of health policies. Some schools don't have a nurse yet still manage to care for students with diabetes in a responsible way. Other schools have a nurse on staff yet stumble when it comes to routine and emergency diabetes care. This patchwork of school policies illustrates the need for three simple things: (1) uniform policy, (2) relevant training, and (3) backup personnel. With training, any willing and responsible adult will do. Yes. Anyone willing to learn can be trained to care for a student with diabetes. To argue otherwise is to say that administrators, teachers and others are uniformly incapable or uncaring; to argue otherwise is to step backwards in time and re-embrace a discarded model of health maintenance that no physician, nurse or educator who specializes in care and treatment of diabetes endorses. Chronic, life-threatening conditions such as asthma, diabetes, food allergies and seizures don't afflict children according to who their principal is or what school or legislative district they live in. It shouldn't matter where a child lives or whether their district is wealthy enough to afford a school nurse: all children deserve equal access to school and no student should have to jeopardize their health or compromise their rights for want of the simple provisions afforded by HB146. Notes: (1) Access and Equity in the Due Process System: Attorney Representation and Hearing Outcomes in Illinois, 1997-2002, Melanie Archer, Ph.D., December 2002. READ IT HERE >>> Sign on as a supporter of HB146. SIGN ON >>> |
