Caring for a child with type 1 diabetes is stressful under the best of conditions. The parents and caregivers must give insulin by injection to the child multiple times a day, for all meals and snacks, to correct a high blood sugar—so it is a 24/7 job to monitor and manage. Type 1 diabetes is a complex disease that affects the entire family and requires a great deal of education for everyone to be managed successfully. For parents, it often involves sleepless nights of watching over a child, especially when he or she is first diagnosed. It requires carbohydrate counting to calculate the correct pre-meal insulin dose; it requires math skills, a food scale and the ability to read nutritional information—all things you don’t even think about if you don’t have diabetes. It is, like any chronic illness, time consuming and expensive to treat (even with health insurance) and that’s just the beginning.
What about children with type 1 diabetes in families who are struggling to keep their children cared for? What about children with type 1 diabetes who are neglected?
In the City of New York, the Juvenile Rights Practice of the Legal Aid Society represents children whose families have been reported for suspected neglect. Last month, two Naomi Berrie Diabetes Center clinicians, pediatric endocrinologist Rachelle Gandica, MD, and social worker, Andrea Lopera, MSW, spoke about type 1 diabetes to the Juvenile Rights Practice in Brooklyn by invitation from a lawyer who is a patient at the Berrie Center. “We represent children with type 1 diabetes whose parents have been accused of neglect,” said Catherine Klein, a staff attorney for the Juvenile Rights Practice in Brooklyn. “We wanted to be in a better position to advocate for the children.”
Dr. Gandica and Andrea Lopera gave a comprehensive talk explaining the differences between type 1 and type 2 diabetes and discussed the treatment options, focusing on the very rigorous home-monitoring and home-care that is part of diabetes: glucose monitoring, insulin administration, insulin pens, insulin pumps, and glucose sensors. “There were a lot of widely opened eyes in the room. I don’t think people realized the intensity and complexity of caring for a child with type 1 diabetes,” said Dr. Gandica.
By the time a lawyer at the Juvenile Rights Practice represents a child with type 1 diabetes, someone has already reported that they suspect the child is being neglected. Sometimes the signs are obvious. “A child who has had multiple hospitalizations for diabetic ketoacidosis—that should never happen,” said Dr. Gandica. Other signs of medical neglect might be lack of ability to consistently follow up with scheduled medical appointments, or not treating high or low blood sugars appropriately. Chronically high glucose readings—or few or no readings at all—might also be a sign of neglect.
“Managing type 1 diabetes in a child can at times seem overwhelming for the most highly functional and well supported parents,” said Dr. Gandica, adding that the neglect is fortunately very uncommon and rarely seen among the patients at the Berrie Center. “The children who do the best with type 1 diabetes are the ones with a very strong family support system,” said Dr. Gandica, “Which is why, at the Berrie Center, we incorporate the family into the program.”
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