I was invited, as a parent of a T1 child in Maryland public schools, to attend a Stakeholder’s meeting to discuss school management of diabetes. I was really excited to go, anxious to hear what issues they were tackling, and eager to share my thoughts and concerns as I had heard them through the DOC (Diabetes Online Community). The meeting was jointly convened by the Maryland Department of Health and Mental Hygiene (DHMH), the Maryland State Department of Education (MSDE), and the Children’s National Health System.
**Let me clarify that I do not represent these organizations, I am not speaking on their behalf, and I did obtain permission to write this post from the officials spearheading this initiative. I am simply a T1 parent volunteer with a stake in the goals set forth by the meeting, and my goal in sharing this is to reach parents in other states who are struggling with diabetes management in school. As I mentioned in a previous post, there is a breathtaking gap in Type 1 management in schools across the US. The information contained here I hope will serve as inspiration for parents in asking their own schools and states to step up to provide the best possible care and safety for Type 1 students – parents can and should demand legislation and more state involvement where it is lacking. **
The agenda was comprised of perspectives from the diabetes care provider, the State Board of Nursing, School Health Services, and the Parent/Family, to include management challenges, needs, and opportunities in the school setting. After introductions, we broke out into workgroups made up of members from the various stakeholder groups represented that day, each to discuss a different focus area. Obviously I don’t need to tell you that there were a number of Very Important People in attendance that day.
The topics on task for the day included communications between Providers, Schools, and Parents regarding medication orders, the School Health Services Form for Diabetes Management, the implementation of 504 plans and IHPs, issues related to the training of school nurses and other staff, the training and oversight of unlicensed persons, challenges regarding care on field trips and other school-sponsored activities, promotion and support for self-management and essentially what that looks like at each school level. Each workgroup was given a specific focus area to discuss, with very focus-specific questions. The workgroups – again, each comprised of diabetes care providers, school nurses, representatives from the State Board of Nursing, Parents/Caregivers, and government representatives – were tasked to come up with recommendations for these issues.
These focus areas can serve as a foundation for parents nationwide to open dialogue if and where it is needed:
The School Health Services Form for Diabetes Management – how orders are written and transmitted, whether it is standard or individualized, best ways to transmit orders, whether a new order is necessary for every change in insulin dose, and ways to improve the form.
Communications between providers and schools – including provider accessibility to schools, the parents’ role regarding medication orders, and strategies to improve communication between all parties.
Training of school nurses and other school staff – including unlicensed persons who may be needed to fulfill diabetes needs of students (carb counting, calculating boluses, managing care on field trips, and strengthening policies for self-management), with recommendations on how state and local programs can enhance this training to unlicensed persons. Here too, the focus is on the child’s safety in the school setting, and what happens when a school nurse is unavailable.
Communication with and oversight of unlicensed persons providing diabetes care, strategies to address barriers for how and what school nurses delegate, and how communication is achieved when nurses aren’t on location. In addition, how schools promote self-care at the age-appropriate level, what care and management looks like in elementary, middle, and high school settings, how this determines the location of diabetic supplies, and effective collaboration with parents and providers on these issues.
Educational supports regarding 504 plans, Individualized Health Plans (IHP), how much and what type of information is needed on those forms, accommodations regarding standardized tests, challenges with regard to implementation that students and parents encounter, how these challenges were addressed, and what communication regarding education supports has been effective between the school nurse and other personnel.
Diabetes Management Challenges as relates to diabetes care on field trips and school-sponsored activities, what parents’ concerns are regarding safety in the school setting, how these concerns were addressed, what expectations parents have of school personnel, as well as what additional training/education might be needed to support students and parents.
The end result of this Stakeholder’s Meeting, as well as ongoing committee meetings (on which I continue to participate) is to have a new and updated Management of Students with Diabetes Mellitus in Schools, a Maryland State School Health Services Guideline to be completed and in effect for the 2016-2017 school year. I am not at liberty to discuss the specific outcomes and recommendations stemming from these meetings at this time, though I hope to share the final product once it is officially implemented. But I have learned so much.
Being the “parent” often means feeling like we’re being judged on everything from helicoptering to being the demanding or hysterical parent to being judged on our child’s management. That’s not to say that schools make us feel that way, though I’ve heard many a parent tell some tales that would curl your hair… I have been gloriously blessed with a fantastic school nurse who needs absolutely no supervision from me. Type 1 parents don’t sleep very much. We are frustrated and angered by the blurred distinction between Type 1 and Type 2, the lack of understanding from our friends and even from family of how scary this disease is, and how it is life-threatening on a daily basis. That may sound overdramatic, but the fact is, and remains, that our children are alive only through our tireless diligence and a drug that can also kill them. It’s no small wonder that any of us can function while our children are away from our care.
That being said, I have also now heard perspectives from schools and providers. I met people that genuinely care about the safety, well-being, and education of students with diabetes. Someone said she had actively pursued a pharmaceutical company to market a half-dose of glucagon for children under 6 years of age to make it easier for licensed personnel to administer the correct dose if necessary. Someone commented that in an emergency situation where glucagon is warranted, there is no such thing as overdosing. I’m not the only parent who would agree that it’s not worth arguing details when it comes to glucagon, because not giving it is not an option. I have heard that some parents haven’t even provided glucagon to the school, and the reason is affordability – because some insurance companies are not covering it. The cost of glucagon out of pocket is over $100 per kit, and I know we have at least 4 – one at school, one in my purse, and at least one each at my house and her dad’s.
There was mention of having education and training for all school personnel with regard to glucagon – that in many schools they are already trained in the use of EpiPens, so why not glucagon as well? Shouldn’t everyone know how and when to use it, just like the EpiPen? Should schools require it, or request volunteers to learn how to administer it? When we were still in Pennsylvania, our school nurse had a fit over anyone but her using the glucagon kit. Her concern was liability, and she may have been right, but it was always my feeling that I don’t give a rat’s ass WHO gives my kid glucagon, so long as somebody DOES. I would never sue somebody for attempting to save my child’s life. Alas, there probably is someone who would and therein lies the problem the “officials” face.
Also among the conversations I heard was of one kid whose parents didn’t want to manage his diabetes at all, and his A1c was 17. Imagine that the person who knew this information had to decide what to do with it. It’s certainly a different perspective, something I urge all parents to consider when they’re feeling sensitive about how they’re treated by school personnel. Unfortunately there are children out there with diabetes who do not get proper care, either due to lack of parent education about Type 1 diabetes or accessibility to health care, or both. Consider how school nurses and other personnel who DO understand diabetes handle situations like these. What is their responsibility to this?
What’s really exciting and coinciding with the Stakeholder’s initiative is Maryland Senator Ronald Young’s Senate Bill 71, Public and Nonpublic Schools - Student Diabetes Management Program, which will require “the State Department of Education and the Department of Health and Mental Hygiene, in consultation with certain other organizations” to provide for all of the aforementioned focus areas (I’m really overgeneralizing here). Senator Young is very passionate about diabetes management and safety in schools. He expressed his concerns over the gaps in diabetes care in some counties (sidebar: Maryland public schools are organized by county, ie: Cecil County Public Schools, Baltimore County Public Schools, etc.) with regard to safety both in the school setting and on school buses, as well as field trips, after-school care such as extracurricular activities, and the absence of diabetes care providers in some schools.
There are far too many points to mention for the purpose of this post; however, it will provide for training guidelines for staff and employee volunteers to become trained diabetes care providers, although not to be “construed as… practical nursing or registered nursing” (the liability side of training diabetes care providers). The bill will provide for a Diabetes Medical Management Plan (DMMP) meeting for the student and all individuals charged with care. It will establish, among other points, where and how the student will manage diabetes tasks, as well as allowing the student to carry supplies and “possess a cellular phone to ask for assistance when necessary.”
While my workgroup focused on policy related to unlicensed personnel providing diabetes care to students, one nurse asked me my feelings on my child’s safety on field trips, either in a self-care situation or with an unlicensed person managing her diabetes. I expressed serious reservations about someone making decisions about her care without communication with me, and especially because in some locations cell phone service is compromised. Senator Young was in my workgroup, so he heard my concerns. Still, his efforts with the above bill have merit in the general sense, where some parents have few options due to work constraints.
There is so much more and in the interest of time and space, I will wrap this up. I don’t pretend to know what kinds of legislation have been enacted in any other states, but I strongly urge you to have a look at this bill. Senator Young expects to have it enacted by July 1, 2016, and I hope by that date to have more to share.