http://type2diabetestreatment.net/diabetes-mellitus/still-fighting-for-diabetes-school-safety/
The school year"s coming to a close for most in the U.S., but that doesn"t mean the battles for safety in school settings are over.
We"ve seen recent headlines about diabetes parents" heated conflicts with public and private schools across the country, from Utah to North Carolina to New Mexico, Utah and beyond. One story that emerged was a lawsuit stemming from a T1D child expelled from private school because of diabetes, while grapple over access to educational field trips, extracurricular activities, and school nurse supervision during class hours.
Utah D-Mom Bridget Llewellyn has been struggling for the past year with an uncooperative school district that she feels is putting her 6-year-old T1D daughter Chloe at risk. Bridget actually had a lot of praise for her district and got news coverage along with her school back in October 2014, for being one of the first #WeAreNotWaiting families using the Nightscout CGM in the Cloud system for data-sharing during school.
Now, Bridget is battling her daughter"s school district and taking that fight up the ranks. Today, she shares her story here...
A Guest Post by D-Mom Bridget Llewellyn
I have been reading the ‘Mine for years, and it was the first online source of realistic and helpful info on D-management I found. It is a gem that I share when I am asked about D-management or meet someone with a new diagnosis. I would like to shed some light on the struggle to keep kids safe at school by sharing my experiences with the ‘Mine community.
First, a little introduction:
My husband Erik was diagnosed at age 22 more than two decades ago, and he’s used a Dexcom CGM going back to the SevenPlus. After I wore Erik’s G4 CGM for a week, I agreed to order one for our little T1 Chloe, who is currently 6 and was diagnosed fours years ago when she was 2.
Chloe got her first CGM at 3 years old, and the CGM was an incredible improvement to D-life. We were one of the first 300 families in the country to start using Nightscout/CGM in the Cloud technology back in 2014, and I thought I"d gone to D-mom heaven! I could finally see Chloe’s numbers while she was in preschool!! I could also see that the possibilities for greater independence are amazing.
But it hasn’t been all smooth sailing over the past year while Chloe’s away at school, and life has been a rollercoaster for this T1 spouse and parent.
Some of the bumps our family’s experienced leave bruises on a mom’s heart. The twists just make you angry. Don’t be discouraged, there were plenty of amazing highs along the way also.
My fearless, front-toothless almost-first grader lost both her front teeth on the same night in Maui last month. Thanks to a “local legend” and her parents’ lack of change, Chloe made a mint from the Maui tooth fairy! She snorkeled with turtles and ate a whole fried shrimp head. But I digress, so back to the rollercoaster…
A Horrific School Experience
Chloe attends Parley"s Park Elementary School (PPES) in Park City, Utah. We are incredibly lucky that the school front office staff, school nurse, teachers, and principal are all wonderful and supportive. Unfortunately, the Park City School District (PCSD) administrators have direct control over nursing services and ultimately, 504 Plans (that set requirement"s for your child"s care).
In my daughter’s case, the PCSD superintendent and associate superintendent willfully and intentionally violated her rights and endanger her by not providing access to insulin throughout the school day (unless administered by a parent), not providing a trained backup for the nurse, not providing access to insulin so she can participate in class parties where snacks are served, and by requiring parents to attend field trips or she will have to stay at school while her class goes on the field trip.
I initially contacted the Utah State Office Education, and worked with a woman there who gave me wonderful information about my options and resources; she’s able to contact local school districts to explain their legal obligation to keep children safe. All day. Every day. No exception.
Schools must provide access to insulin for dosing and corrections as ordered by your doctor. In Utah this means a nurse (or trained person with delegated authority to administer insulin) must be present. Nurses in Utah cannot be forced to delegate their licenses. Nurses in the Park City School District choose not to delegate. Generally, due to the impact of hyper and hypoglycemia on a T1D child’s ability to reliably function, this means they should be on premises At All Times. Children on insulin pumps especially need an authorized person on site in case of pump failure. Many districts in Utah would need to hire additional resources and train staff to keep our kids safe.
I filed complaints with the United States Department of Education Office for Civil Rights (OCR) against PCSD for discrimination, failure to implement her 504 Plan, and eventually retaliation when the associate superintendent had a field trip cancelled two hours before class departure because he did not want my voluntary attendance used against the district. I also filed formal complaints with the Park City School Board and the Utah Professional Practices Advisory Commission (UPPAC) of the Utah State Office of Education.
In January, school nurse hours were extended to 5 days a week and for the entire school day. However, when the school nurse was sick in February, the associate superintendent did nothing to staff a substitute nurse. Later that day, three nurses were sent to the school presumably to avoid another OCR claim. All three nurses watched my hypoglycemic kindergartner struggle through 5 test strips to test her own blood sugar without offering assistance even though her CGM was reading 66 (!)
I emailed the associate superintendent my concerns about my daughter’s 504 Plan being violated and safety jeopardized. His formal response, on District letterhead, was that the three nurses would not be asked to provide care for my daughter again. Three days later one of the same nurses was back in our school training to care for all three T1 students. Our school nurse was advised by the associate superintendent not to tell me.
My little one is, like most T1D children, quite a tough little cookie. The emotional price she paid for the incompetence and apathy of district leadership is unbelievable. Having my daughter finally break down sobbing that “she feels alone and different because of diabetes” is horrible. The poor thing asked me to “tell God that this challenge is too hard" and that she can’t do it anymore.
"It hurts, and makes me sad, and I just want to be a normal kid. I want to have a cupcake with the other kids during class and not take it home," she says. I get it. Diabetes is hard and physically painful enough. These kids don’t need to be singled out as though they have done something wrong.
Sadly, the local school district is not using the tools it has to keep kids safe. For no reason, the district has chosen to not to renew the annual contract of our amazing elementary school nurse, who has 9 years of experience in the ICU at our children’s hospital as well as ER nurse experience. She goes above and beyond her job description in the daily care for students, and often advocates for appropriate care and resources to meet their medical needs. This decision was against the will of the principal and a shock to the community, and the district hasn’t yet determined whether it will hire three more full-time nurses for the next year or not.
More D-Parents’ Stories Uncovered
My experiences this year were recently published in this Park Record newspaper article, as well as The Park Rag coverage that appeared on May 18 and with these official documents.
As a result of the initial investigative article, parents started reaching out to me and the newspaper to tell their own stories of trying to keep their children safe at school or get 504 services within PCSD.
One mother of a 6th grade child with T1 got an incoherent text from her son. She was frantic. She called and he did not answer. She pieced it together and it asked, “How did I end up on the floor?” She drove to the school where her son was found alone, on the floor, of an empty nurse’s office. Against his care plan, he had been sent to the nurse’s office alone when he said he did not feel well.
This story and others are featured in a follow-up May 24 story, Parents: Park City School District has history of poor diabetic care.
Parents should not have to work this hard to assure their children will be safe at school. However, there is a light at the end of the tunnel. As a result of this publicity, PCSD is submitting policy changes to OCR for approval that will ultimately protect current and future students throughout the district.
I’m happy about that, but wish that we didn’t have to fight this battle to begin with – especially now, as we are in our final week of school before summer vacation starts.
This isn’t a story that’s unique to our family or even in Utah, as there are many others in our D-community facing school-related problems -- legal challenges and administrative battles -- that can also spill over into summer season activities that kids like to be a part of in these few months before a new school year begins.
School Rules Still Apply in Summer
Chloe is registered for a few weeks-long summer programs through the Community Education, which is part of the school district.
Did you know that 504 Plans are legally still in effect for any after school program, club, activity, lesson, summer camps that is sponsored by your school district? Make sure your child is covered by a strong 504 Plan. A great template can be found here: American Diabetes Association Sample Section 504 Plan.
I do not want any parent to stop advocating for their child just because an administrator tells them that "it is not in the budget" or they "don"t have the staff."
Our children have Federally Protected Rights. Being safe at school is not negotiable.
Ideally, this can be accomplished by having open communication and willingness to work together between families and school/district staff.
Stand Up for Children at School
When this does not work, I would like more parents to know how to advocate for their children and know that there can be a positive outcome.
As with technology, sometimes we feel that for every one step forward, we take two steps back until we get the bugs worked out.
My key advice for other D-parents facing these obstacles: Take a breath, don’t yell, try again and document everything.
Advocacy can feel just as frustrating! The key piece is that the price of silence is far too expensive. Our children cannot afford it. It is our duty as parents, and I use the term globally, to speak up on behalf of all of our children who do not have a voice. Our children cannot advocate for themselves yet. But, they will see you do it. The will learn to stand up for themselves by watching.
We"re so sorry your family is dealing with these school issues, Bridget, but thank you for sharing your story and helping inspire other D-parents who may need to advocate for their own T1D kids!
Disclaimer
This content is created for Diabetes Mine, a consumer health blog focused on the diabetes community. The content is not medically reviewed and doesn"t adhere to Healthline"s editorial guidelines. For more information about Healthline"s partnership with Diabetes Mine, please click here.
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