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According to the National Diabetes Education program, diabetes is one of the most common chronic diseases in school-aged children and affects about 200,000 young people in the United States alone. The American Diabetes Association states that one in 400 to 500 children and adolescents under 20 years of age have type 1 diabetes.
Last September, at the start of the school year, my 11-year-old nephew was diagnosed with type 1 diabetes. He attends a small, private school and the teachers weren't prepared to treat or assist a child with diabetes. My sister makes daily trips to the school to give him his insulin injection at mealtime. The little guy is slowly adjusting and is now able to test his own blood sugars.
Recently, my sister wrote down instructions for treating low blood sugar and put the instructions in his backpack. The instructions were for him. One morning he felt symptoms for low blood sugar and went to his teacher to ask for his blood glucose testing kit. She wouldn't give him the kit, and he became understandably upset. My sister was called and informed that the head of the school board told the teacher not to give him the kit until they studied the legalities. This board member then called and asked his parents to keep him home until they figured out all those legalities. This was upsetting to say the least! And I'm sure this family is not alone.
So, what are your child's rights at school? I did a search and found a few excellent websites that can be used as a resource for parents of children with diabetes.
Next week, I'll discuss specific guidelines to help education personnel work with children with diabetes. For those of you who have children with type 1 diabetes in school, what have you learned along the way?
Have a great week!
Sara J. Carlson, R.N., C.D.E.
Peggy Moreland, R.N., C.D.E.
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Unfortunately what I've learned is that my granddaughter spends hours each week in the nurses office rather than her classroom. In my mind this is not equal access to education.
My child was diagnosed with Type 1 Diabetes three years ago when she just turned seven. Then school nurse in our public school was split among three different building and was not always in my daughters building. They were very uneducated or unwilling to do the necessary and appropriate medical care. The principal stated that he would perform the care when the nurse was not there! Can you imagine! Well, let me tell you - Being blindsided by diabetes - We did not know what the laws were. Even if this was legal - the principal was not performing medical care for diabetes. I told him - Do you want me to do your principal job? He said absolutely not - well your not doing medical care. I hired a school law attorney and brought in the state dept of education and the dept of health and school safety.
The laws in our state mandate that diabetes care be performed and assessed by either a LPN or an RN. No health room clerks or administration. That very same day the state came on site of the district, I received a message that a full time nurse will be available in the bldg. every day for her care. The district was told to comply or funding would be withheld! ALso, they would be opening themselves up for a "can of worms" lawsuit.
I was on a mission and I was angry. I really did not care whether what they were offering was legal or not - They were going to care for my daughter on my terms - nothing less.
I can not urge enough.know your rights, get a 504 speakup
Lisa: we recommend that you go to the Juvenile Diabetes Research Foundation (JDRF) for recommendations. Here is the link: http://www.jdrf.org/index.cfm?page_id=100673 They have an online diabetes support team that provides support and practical suggestions to families affected by diabetes.
My daughter who is 7 was diagnosed with type 1 diabetes almost 2 months ago and it has been a struggle with the school. There are budget cuts so at first the nurse was there only once a week. I was told I needed to come give her the insulin. They told me at first that it was against the law for anyone but the nurse or myself to give her her insulin,but then I was told a relative could do it if I trained her myself. Problem solved right? Wrong. We went to an education class on a friday where they changed her correction dosage from 1 unit every 50 over to just a half. New orders where sent to the school. Thinking the nurse knew what she was doing I forgot to call and tell her of the change. She called monday afternoon with my daughters sugar levels and told me per the new orders my daughter was given half a unit. I thought ok she must be just telling me the correction instead of the full dosage. next day the nurse called and said my daughter was given one unit and hung up the phone. I called her back right away and asked again about her numbers. Come to find out she had mis read the orders and was not dosing her right. I called the principal and was told no one was perfect! I was furious and don't know what to do now and need some advice.
In New Jersey where I work as a school nurse there are excellent guidelines in place for working with children with diabetes in schools. Perhaps this school can check its state's statues in that regard and model a program accordingly. Also the National School Nurses' Association has a great program as well, along with the US Department of Health and Human Services (Helping the Student with Diabetes Succeed - A Guide for School Personnel( the guide is free!)
Last year was our daughter's first year with type 1 at school and it was excellent. This year she advanced to a new school with a new teacher who is a minor nightmare. Luckily the nurse is wonderful and is helping to correct the problem with the teacher.
I would like to dispel the assertion that children will, not may, face challenges dealing with type 1 diabetes at school. My 8-year son was diagnosed just 6 months ago, and our PUBLIC school has been outstanding. Meetings were initiated by the school nurse and district nurse, along with his teacher. Action plans and supplies were reviewed. Every day, EVERY day, the school nurse emails me my son's noon glucose number and assures that he has consumed the correct number of carbs at lunch. Your nephew's situation is unacceptible! Downloadable resources for schools are availabe through JDRF. He could also see if a combination of short and long term insulin might work for him. My son's morning dose takes him through to dinner time so no insulin needs to be injected during the school day. I'm sorry for your nephew's experience, but know that schools are also able to provide excellent care.
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