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On Being a Diabetes Advocate

By Karen Hargrave-Nykaza

Having a child with diabetes is full of challenges. In addition to the numerous roles you have taken on to keep your child physically safe, you have probably taken on a role that is equally important, not only to your child, but to all children with diabetes. That role is that of being an advocate. I take this role very seriously. I have felt a responsibility since Joel was diagnosed to be very vocal about his rights and our role in improving the school environment, as well as life in general for children with diabetes. Not everyone would take on such an active role, but this should be every parent’s choice, not a duty that they feel they have to live up to.

Many people and many schools have no experience with diabetes. If they haven’t been educated about diabetes and you want your child treated in a certain way, it may be up to you to educate them. I want my child to be treated like every other child, with the exception of the additional safety measures needed to keep him safe. This is something that many people, schools, or other organizations are not comfortable with. They may think it is you asking for the best of both worlds. I was once told by someone in the special education department for our school district that I was asking for the school to both treat Joel like every other kid AND take special precautions for his medical needs, suggesting that I couldn’t have it both ways. I suggested to him that he had just defined special education, and this was in fact the department of the school district that he worked for. I told him that it was his job to provide my child with an education in the least restrictive environment possible. That was my son’s right by law, and I was prepared to fight for it, even though I shouldn’t have to.

The topic for this column wasn’t chosen at random. Today just happens to be the first school field trip that my son has been able to go on without either my husband or myself accompanying him in the 3 ½ years since he was diagnosed with diabetes. Even though it is against the law to do so, our school district requires that one of us goes on every field trip. The law states that the district must send a nurse on the field trips, but they claim they don’t have the budget to provide it. We have battled back and forth with the superintendent, the principal(s), and even the school nurse over the unlawfulness of this policy, yet the policy stands. A couple of years ago, we got our local Joslin Center involved in the battle, and even went so far as consulting an attorney. The advocate at the Joslin Center got only as far as dealing with the school principal, and despite her quoting the law and making a very persuasive argument, she didn’t have much success. The attorney we talked to felt that we didn’t have a case, and suggested that we drop it. All of this felt like a very long series of failures, without a single person getting the point; it wasn’t that we wouldn’t or couldn’t go on the field trips, but that we shouldn’t have to. Joel is getting older, and wouldn’t necessarily always want us to go on the field trips. The first glimpse of real progress came this year, when both Joel’s classroom teacher and principal agreed to be trained to use glucagon (a related battle we had been losing within Joel’s school for 3 ½ years). This led to Joel’s teacher taking responsibility for him on the field trip, and my husband and I not going along. Finally, some independence for Joel and freedom for us! But even more importantly, it is hopefully a step for all children with diabetes in our school district.

Some people might read this and think that this sounds like such a small thing. I wish that that were true. If only administrators and officials would see what is best for the child in terms of keeping some degree of normalcy for them, maybe this would be a small thing. But these days, it is all about covering their own butts and avoiding lawsuits. During the same heated discussion with that person in the special education department that I referred to earlier, I suggested that if it were his child, I was sure that he would want him both safe AND treated like every other child. The two should not be mutually exclusive, and Joel’s 504 plan* spells out that they are not. And the truth is that by 2nd grade, most kids prefer to go on field trips and outings with just their peers.

My hope is that by each parent fighting for their own child’s rights to be treated like every other child, maybe field trips and birthday treats for children with diabetes WILL one day be considered very small things, not battles that the children or their parents have to fight.


* The 504 Plan in the school setting falls under section 504 of the Rehabilitation Act of 1973. Another important law that pertains to children with diabetes is the Americans with Disabilities Act of 1990. These types of laws state that all children are entitled to an education in the least restrictive environment possible. A 504 plan is something that you draft with the special education department and school officials in order to outline that certain things need to be in place for your child. Once it is approved by all parties and put into place, if the school fails to uphold conditions outlined in the 504 plan, the school’s federal funding can be in jeopardy. There are detailed examples of 504 plans on www.childrenwithdiabetes.com

Disclaimer
dLife's Daily Living columnists are not all medical experts, but everyday people living with diabetes and sharing their personal experiences. While their method of diabetes management may work for them, everyone is different. Please consult with your diabetes care team to find out what will work best for you.