For nearly two decades, New York families of children with diabetes were often met with resistance when attempting to advise their child’s school nurse about insulin dose adjustments during the school day. But in May, the New York State Department of Education issued revised “Guidelines for Medication Management” which now state that information from parents must be taken into account when making these insulin dose determinations.
“Parents of children with diabetes have a right to play a role in the treatment of their children while at school,” said Joon H. Kim, Acting United States Attorney for the Southern District of New York, whose office investigated charges against the State Department of Education, which prompted the new changes to its policy on diabetes in schools. “This will help students with diabetes receive during school, the same adjustments to their medication that they receive outside of school, as their doctors direct.”
The changes will greatly impact families and children with type 1 diabetes (T1D).
“This is a solid victory for parents, guardians and students,” said Berrie Center pediatric endocrinologist Rachelle Gandica MD, whose consultation along with Co-Director Robin Goland, MD, was instrumental in helping to amend the existing law. Added Dr. Goland, the J. Merrill Eastman Professor of Clinical Diabetes at Columbia University Medical Center, “I am extremely proud that the Berrie Center is able to help modify policy that can directly benefit people with T1D and their families all over the state.”
Much of this victory is due to the hard work and persistence of parents such as Elaine and Joel Miskolcze, whose 8-year-old son William has T1D and is a patient of Dr. Gandica. When William entered kindergarten his parents expected he would be cared for with the same diligence and understanding as he received at home. However, the Miskolcze’s were dismayed to encounter multiple barriers and pushback. Perceived inadequate staffing at school led to Elaine taking a leave of absence from her job as a photographer so she could be present during the school day if William needed insulin dosing. The Miskolcze’s knew this wasn’t right and turned their frustration into action.
What followed was years of advocating on behalf of her son and others with T1D at the state level, and thousands of dollars in legal fees. “This has been a long process,” said Elaine. “We had to fight for everything, but we are hopeful for the future.”
The Guidelines still leave final decisions on dosage with the school nurse, but the role of parents to request adjustments during the school day has been strongly protected under the new law. In a statement drafted by the American Diabetes Association, the group said that it is “optimistic that the work of this US Attorney’s Office in resolving this issue will be of great influence and assistance to other states, school districts and advocates as they aim to improve care for students with diabetes.”
The New York State Department of Education has posted the new version of the Guidelines on its website. The amended version reflects all of the changes. Here is a link: http://www.p12.nysed.gov/sss/schoolhealth/schoolhealthservices/
Said Elaine, “We want to make sure other families know their rights and know that there have been changes so they don't have to go through what we went through.”