@Terry4 - I am glad you asked these questions. Yes, my experience is aligned with this article and yes, it is as bad as the article portrays.
I know of many, many families who work with amazing school nurses and administration and these students are kept safe by caring people who understand and own the specific and detailed care plan of a student with type 1 diabetes. However, for as many of these success stories, I hear of as many stories of people getting resistance, being told school personnel cannot fulfill their medical requirements, and other, more egregious forms of discrimination.
Over the ten school years with which we have coordinated care at school, I could categorize our experiences in three groups: 1) amazing, knowledgable care, 2) outdated, inadequate and ineffective care, and 3) outright incompetence combined with hostility and blatant discrimination.
Caleb started at a preschool which was part of a parochial school which was assigned a public school district nurse. The nurse was not responsible for the preschool, however, Caleb’s diabetes was cared for as if she was. This care was more traditional - requiring him to leave the classroom for any care needs - but it was attentive and adequate.
In kindergarten I was greeted with a school nurse who literally looked up to the sky, slumped her shoulders and sighed saying, “I thought I was getting rid of that this year,” when I told her my son with diabetes was enrolled in her school. She begrudgingly agreed to Caleb’s care plan, but her execution demonstrated a lack of understanding of how to care for a student who uses an insulin pump. Her knowledge was outdated and Caleb was put at risk. He was denied a school snack that all other students were allowed rather than given a bolus for it. He was nearly put on a school bus with a blood sugar of 54 and insulin on board. These are just a couple of examples. After months of trying to educate, this nurse retired in the middle of a meeting with myself and administration. In this scenario, we did have the support of administration; we had difficulty with training.
We were then blessed with an amazing nurse who embraced Caleb’s care needs and met them. She worked with us to implement a plan over the course of three years that allowed for Caleb’s increasing autonomy in care. She found opportunities and made suggestions to help him help himself. She went to Caleb’s classroom when he needed assistance so he would not miss instruction by going to the health office repeatedly throughout the day. I’m happy to say there are many other stories like this one, and this one should indeed be the norm.
When Caleb left that school, we were presented with a new administration and nurse who were immediately on the defensive. Although initially agreeing to all requested accommodations, the stipulations of Caleb’s 504 plan were not followed. Caleb was left to care for himself and the nurse served as an information gatherer only. This resulted in emergency intervention on my part several times. I attempted to work with and educate the school nurse. I was hung up on, ignored and told I was overprotective and unreasonable. I was met with increasing levels of hostility as I tried to work with the principal, the school psychologist, the nursing director and the assistant superintendent. I naively believed during this period that this was all a misunderstanding and continued to hold out my hand to try and work with people to help them understand Caleb’s specific needs. When I was presented with a letter by the superintendent stating that a full review of Caleb’s care was complete and found to be appropriate and I was determined to be overreactive and abusive to the staff, I retained legal counsel. It was expensive, time-consuming and emotionally draining. All this time, I did not travel more than 15 minutes from my home and ensured that I always had cell service. Caleb was allowed the ability to call me from his classroom and his care was 100% given by me through that communication. We had no support from the people assigned to care for him. Although his teacher was very supportive of us and understood and was compassionate about the difficulties we were experiencing, she was not qualified nor responsible for his medical care.
With legal counsel, we were finally given some attention. We filed a claim with the Office of Civil Rights and the nurse was removed from Caleb’s school for her refusal to care for him. This was after seven months - most of the school year. This was an agonizing hell that I wish no one ever had to endure. Unfortunately, this is only an example of what people go through, and there are stories that are worse.
We are still presented with situations for field trips and after school activities where we receive a hint of push back regarding providing care for Caleb. The initial reaction is something like, “well we’ve never done that before.” However, since having retained counsel, we have never been denied proper care for Caleb. At his current age, our requirements are fairly minimal. For example, for after school activities, we just need to know that there is someone who is qualified in glucagon training available for him should he need it. He otherwise has access to me if he needs help with a dosing decision.
I find that people more often than not do not know their rights. 504 plans are discouraged - “it’s not necessary.” Parents don’t know better, and they believe they aren’t necessary and their children are left unprotected.
This article brings much needed attention to this real issue of discrimination. Families need to know their rights and understand what they can do to ensure they are met. Often the discrimination does not come from ill intentions, but a lack of understanding. It can be hard to get people to change their way of thinking. But to keep our kids safe, we as parents need to advocate and educate for our children’s needs, no matter how challenging that may be.
The American Diabetes Association’s Safe at School Campaign is the place to start for people who need help.
