Breaking Barriers: fighting for our daughter's disability rights in U.S. Schools

Coral, T1D since 03/16

Welcome to our guest blog, where we have the honor of featuring the insightful perspective of Shelsea Deng, a dedicated advocate for children with chronic conditions. In this compelling piece, Shelsea shares her journey advocating for her daughter, Coral, who was diagnosed with autoimmune Type 1 diabetes at a very young age. Through her experiences, Shelsea sheds light on the challenges faced by families dealing with chronic conditions in the education system.

Shelsea, Coral & Kaila

In your experience, how has stigma and discrimination affected your child's education and daily life?

My first-born daughter, Coral, was diagnosed with autoimmune Type 1 diabetes at 15 months old on March 11, 2016, back home in Oahu, HI. Type 1 diabetes is very rare among Asians and even rarer in Native Hawaiians (we are part of the "AANHPI" community and also part Native American). Consequently, I have often been confronted with a barrage of questions and misconceptions regarding her condition. Common inquiries include, "Did she eat too much sugar?" or "Did I breastfeed her long enough?" Others have speculated, "Did I eat too much sugar when I was pregnant with her?" or asked, "Can she eat that?" pointing to sweets. Additional misunderstandings include questions like, "Does it run in your family?" or "Will she outgrow it?" Some have even asked, "Did she get it from vaccines?" or suggested, "I heard cinnamon and exercise can reverse diabetes," and "Do you think vaccines caused it?" These misconceptions have been thoroughly debunked by numerous medical journals, including those on NIH.gov and The New England Journal of Medicine.

Since Coral began transitional kindergarten (TK) in the Los Angeles Unified School District (LAUSD) in 2019, her curious classmates and fellow school parents have often asked about her Dexcom G6 and Omnipod pod (classic Eros pods, DIY Looping), typically with good intentions. Inquiries like, "What’s that on her arm/leg?" were common, and many families were genuinely curious. For those interested in DIY Loop, more information can be found on Github.com.

Unfortunately, our experience has been markedly different at her current school, located in an upper-middle-class, predominantly white/Asian demographic. Coral returned to in-person learning in January 2021 at a new school chosen by the District Student Services Executive (DESS) instead of her originally assigned home school. DESS believed this school would be a better fit for her because "the health clerk is amazing and a mother of a T1d [adult son, diagnosed at six years old], and there are two other T1d students there." However, the reality has been far from the supportive environment we were promised. Instead, it has been a constant struggle, rife with misunderstanding and a lack of appropriate support.

What specific challenges have you faced in advocating for your child's needs within the school system?

In January 2021, the District failed to hire or properly train a designated adult or licensed nurse for Coral, despite her endocrinologist's School Orders clearly stating, "Child is hypo unaware [unable to detect or verbalize low symptoms] and requires a trained designated aide or licensed nurse." The health clerk, a mother of a T1d son whom the principal erroneously referred to as the “school nurse,” minimized and generalized Coral’s condition based on her own son’s and the other two T1d students' experiences, who "never had any problems with Dexcom" or "don’t have as many lows as Coral." She often boasted about her son's immediate acceptance of his diagnosis, disregarding the fact that Coral was diagnosed at 15 months old, much younger than her son’s age of diagnosis at six. Although the health clerk managed some of Coral’s hypoglycemic episodes effectively, she wasn’t permitted to leave the health office to monitor Coral when her blood glucose levels were dropping, as indicated by her CGM. Instead, she expected Coral to come to the health office for all treatments, demonstrating a lack of comprehensive understanding and capacity to manage Coral's condition.

We requested an Individualized Education Program (IEP) meeting within 30 days of the first day of school as required by California state law. The first "trained" 1:1 aide assigned to us also had T1d, which initially seemed advantageous but proved otherwise. This individual, still traumatized by her own severe hypoglycemic episodes, struggled to manage Coral’s condition. She often failed to prevent or timely treat hypoglycemia, leading to severe rebound hyperglycemia or "glucosters."

By March 2021, the school district finally replaced the 1:1 “adult” with a calm and patient RN. The sub-RN, per diem, who was training all previously designated personnel, also has T1D and uses the same devices as Coral. They were all a little resistant to follow my lead, likely because I’m not a nurse or they thought I was “expecting perfection,” but I’m not. These two lovely ladies eventually came around once they got to know Coral’s individual T1D and my highly effective “sugar surfing” methods with our preferred medical devices. Unfortunately, the district reassigned that 1:1 RN after all our training and progress to a middle school in the same district for 2nd grade. The District Executive Student Services (DESS) had to hire a new 1:1 nurse, and the sub-RN (per diem) had to train the third and fourth designated LVN, with my insistent help, of course.

In second grade, 2022, a new 1:1 LVN accidentally deactivated Coral’s Omnipod instead of adjusting the basal settings. She frequently called out sick, which compromised Coral’s care. Additionally, Coral faced bullying, such as a classmate scribbling on her Omnipod and a teacher who refused to address the issue due to her relationship with the child's parents.

In September 2022, Coral was spat on by a new classmate, an incident no one witnessed, leading to further distress. Despite multiple communications with the school and the boy's mother, no resolution was achieved, exacerbating Coral’s anxiety and discomfort at school.

In third grade, Coral’s behavior changed drastically due to the LVN’s failure to follow the endocrinologist's school orders and manage her T1d safely. Coral's increasing anxiety and frequent severe hypo and hyperglycemic episodes made it clear that the school environment was no longer safe for her. On April 24, 2024, I informed the school that Coral would be studying from home indefinitely due to these concerns.

Our Special Education Attorney managed to schedule an IEP meeting on May 3, 2024. Despite presenting factual events and CGM graphs to support our claims, the District and school staff remained in denial and unremorseful, continuing to fail to provide the necessary support for Coral’s health and safety. This ongoing struggle highlights the significant challenges we face in advocating for Coral’s needs within the school system.

Can you share any instances where you felt unsupported or marginalized by the educational institution or community?

In all the instances mentioned previously, we were not well-supported; in fact, we were constantly dismissed by the School/Principal/District. They repeatedly assured us that “they’re all here for Coral and our concerns are being addressed,” yet their actions often contradicted these statements. The gaslighting from the personnel mentioned above was and continues to be, overwhelming and disheartening.

What strategies have you found effective in addressing stigma and promoting inclusivity for your child?

Despite my efforts, nothing seems to effectively reach the majority of the faculty or some of the other parents at this particular school. This was not the case at our previous school, Short Avenue Elementary in the much larger Los Angeles Unified School District (LAUSD), the third-largest district in the U.S. Here are the steps I typically take at the start of each new school year:

- Send an introductory email to her new teacher and a separate email to classroom parents, once I’ve received the roster, with our “T1d Education” slides (Google Drive). These slides explain her diagnosis story, low and high blood glucose symptoms, the difference between Type 1 and Type 2 diabetes, and a brief description of her continuous glucose monitor (CGM) and pump.

- Include links in the email to resources for her CGM (currently the Freestyle Libre 3) and her Omnipod 5 insulin pump.

Despite these efforts, none of the parents or faculty ask me any questions, and most don’t even care to read the information. If they do read it, they don’t understand it and choose to remain ignorant of her autoimmune disease, as evidenced by the school's events or special occasions during holidays each year involving candy or other “sugary” treats.

How do you envision an ideal supportive environment for children with chronic conditions in schools?

School Districts should genuinely support families with any type of insulin-dependent diabetes by holding every faculty member, designated adult, and IEP/504 “team member” accountable for their roles and duties. They should particularly hold licensed vocational nurses (LVNs) and District registered nurses to the highest standards to ensure they fulfill their moral and ethical obligations to keep our children alive, healthy, and safe in school. This allows children to learn to the fullest of their cognitive abilities, as is their right. Districts should aim to implement the following measures, as either suggested by the American Diabetes Association or legally required by Section 504 of the Rehabilitation Act of 1973 and the Americans with Disabilities Act (ADA):

- Initiate and reach out to parents/caregivers of students with any chronic illness, mental health issues, or autoimmune diseases (including celiac, Hashimoto’s, rheumatoid arthritis, Type 1 diabetes, etc.) two weeks prior to the school year to hold an informal meeting with the School Principal, Health Clerk/Aide/Nurse (if available), and Teacher.

- In California and most of the U.S., parents/caregivers must be notified of an IEP team meeting early enough to ensure an opportunity for them to attend. EC 56302.1(e); EC56341.5(b).

- Parents/caregivers may request as many IEP meetings as they feel are necessary throughout the school year, per EC 56043(j). It is best to email this written request to the Principal, Teacher, and Student Services personnel during the first week of school. The meeting must be held within 30 days of receiving the written request. EC 56043(l).

- IEPs must be reviewed every year, EC 56043(d); EC 56343(d). Reviews can be more frequent if needed, per EC 56043(j). If a student is in residential placement, the IEP must be reviewed every six months. EC 56043(x).

By implementing these measures, schools can create a more inclusive and supportive environment for children with chronic conditions, ensuring their health, safety, and academic success.

What role do you think schools should play in educating students and staff about chronic conditions like diabetes?

School administrators, especially principals, have a federal obligation, at least in public schools like ours, to oversee the responsibilities of any designated adult and/or licensed nurse (typically hired by the District through a nursing agency due to nursing shortages across California and most of the U.S.). They should:

- Assist Student Services or special education staff and teachers with the scheduling of IEP meetings and/or any additional time in the classroom for parents/caregivers to speak about their young child’s autoimmune Type 1 diabetes (T1D) or chronic illness/mental health conditions if their child is comfortable with that.

  - Parents need to be mindful and have honest conversations with their children about speaking publicly regarding their medical conditions. I have always done this and will continue to do so.

  - Note: A principal or District Executive Student Services attendance is not required during meetings unless requested by the parents/caregivers. However, in our experience, they often insist on sharing their opinions or adding suggestions that make no medical sense for Coral in most of our meetings.

- Truly listen and respond with empathy to parent/caregiver concerns and requests. This prevents situations like ours, where it becomes unsafe for Coral to be in school due to the negligence of the 1:1 Licensed Vocational Nurse (LVN). Instead of covering up and lying to parents, incompetent, negligent, ableist, unremorseful nurses should be terminated regardless of their “contract.” Otherwise, the administration is complicit.

Teachers need to follow the student’s IEP/504 plans in their entirety with competency. Coral’s current IEP accommodations (currently requesting updates and additions for the next school year, 2024-2025) include:

- Repeat directions and check for understanding.

- Preferential seating to best place her in the classroom for easy exit and necessary space.

- Extra time to complete classwork and homework.

- Re-teaching of materials when she is out of the room for blood glucose monitoring.

- Allow Coral access to food/drink as needed for low blood glucose levels (BGs) in or directly outside of the classroom (many schools require students to go to the health office for low BG treatments or boluses).

- Allow Coral to move about freely in the classroom to see the material closer as needed for her myopia (adding astigmatism too).

- Remind Coral not to pick or irritate her sites (areas near her devices)—this was suggested by the District/School on their own.

Don'ts:

- Don’t distract or allow other students in the classroom to constantly distract or interrupt any designated nurse from keeping my child healthy and safe in school from the moment I drop her off at 8:30 AM PST until I pick her up.

- Don’t ask any 1:1 nurse to help other students with their classwork and then lie about it during a parent-teacher meeting (this happened multiple times, and Coral told me so). This is particularly upsetting when the nurse needs to be closely monitoring her BGs even after administering a hypo treatment.

  - To be clear, there’s a difference between introducing Coral’s 1:1 nurse to the classroom to explain her daily presence and allowing any students or parents to constantly interrupt the designated nurse with “friendly conversations” or multiple questions that anyone else can assist with. BOTTOM LINE: If you see her nurse checking between multiple mobile devices, logging her patient charts, or providing Coral with glucose tabs, Skittles, juice, water, etc., DO NOT DISTURB HER OR CORAL, please.

  - Any distractions can result in mistiming preventative hypoglycemia treatment as detailed in her endocrinologist’s school orders dated 3/5/2024, resulting in multiple severe hypo episodes. It’s important to understand that they probably think, “Oh, she’s still talking and seems to be walking fine,” but her IEP and school orders clearly state, “Student [or child] is unable to recognize/detect or verbalize signs and symptoms of low blood glucose…”

Do’s:

- Teachers should genuinely cooperate with parents and keep their best interests in mind for the health and safety of children with autoimmune T1D or chronic illnesses.

- Listen to parents/caregivers when they mention any instances of harassment or bullying (we know the difference) involving their child and do your best to help advocate for them.

- Carefully read and review our info-blog, T1D educational slideshows, and any additional resources we email you at your earliest convenience to further educate yourselves.

- Rid yourselves of any ableist attitudes—diabetes is a disability, and hypoglycemia or lack of insulin, which can lead to diabetic ketoacidosis (DKA), are indeed life-threatening medical emergencies. This is our reality 24/7/365, no exaggeration.

- Please take a moment to ask Coral how she really feels if you notice her putting her head down, being quieter than usual, or appearing “sleepy” or “irritable.” Feel free to ask the nurse if any hypo treatments were given. If no nurse is present for whatever reason, then check her mobile medical device, the Libre 3 app, for her BG. The low alert is set at 85 mg/dL. If no hypo treatment was given—a huge failure on the part of the School/Nurse/District—then administer 15g of fast-acting carbs, such as 1-2 glucose tabs or 2 oz of juice (about 12 sips). Familiarize yourselves with and follow the endocrinologist’s school orders and her IEP.

- Understand that even though we may show up half-smiling (forced smiles), we/she may be mentally burnt out (her physically, like with multiple hypo episodes overnight—out of our “control”) and not want to be in school or public. However, we push through our daily struggles to take on a new day like the warriors we are. That’s extremely hard to do in addition to caring for our younger daughter, our 2-year-old German Shepherd (training never ends), and other responsibilities, while also battling the healthcare system for insurance to cover some of the costs of her insulin and pump supplies every year or more frequently as needed.

If her School/District truly implemented all the above measures, we would be showering them with curated gifts on their birthdays, Christmas, and Teacher Appreciation Week, in addition to the donations we make annually. We show aloha to those who have it in their hearts too.

From your perspective, what improvements are needed in the education system to better support children with chronic conditions?

There are many federal and local educational codes, but schools often act oblivious/dumb and continue to walk a fine line between legal compliance and discrimination. Millions of families with chronic conditions lack the time, energy, money, and resources to hire special education attorneys and sue their school districts. We are too busy managing and trying to afford our child's chronic autoimmune Type 1 diabetes (T1D), insulin, and other lifelong diabetes supplies, as well as meeting basic needs like rent, mortgage, utilities, and taxes.

Have you encountered any positive experiences or initiatives in the USA that could serve as examples for other countries?

Coral’s previous school, Short Ave Elementary (Montessori) in LAUSD, had an amazingly supportive and empathetic principal, Student Services Specialist, TK, first-grade teachers, and teacher's aide. They handled all our initial concerns well. We only had an issue with the District RN when she removed Coral’s designated LVN due to her former endocrinologist's school orders being “unclear” (a violation of her disability rights). We hired Vanaman-German Law, and they resolved it quickly without having to pursue litigation. LAUSD has been sued countless times by many families, with or without chronic illnesses, whereas our current school district hasn’t been sued enough.

Many fellow T1D families either end up homeschooling their children with chronic medical conditions or send them to private schools if they have the resources. We need legislative changes and a non-profit, non-pharmaceutical, paid, designated “disability justice department” with a team of CDCES’s, licensed clinical social workers (LCSW), families like us, and select teachers (voted in by parents/caregivers annually) from all demographics and ethnicities who truly want to make a difference in this ableist society.

How do you think the global community can work together to create a more inclusive and supportive environment for children with chronic conditions?

I can't speak for the global community, particularly in light of the significant challenges we've faced, such as the pandemic, anti-mask movements, and divisive political climates. It's disheartening to witness some individuals, including those with diabetes, struggling to accept the realities of their conditions. Despite these hurdles, there's hope that by collectively overcoming these challenges and addressing societal barriers rooted in discrimination and racism, we can forge a more inclusive and supportive environment for children with chronic conditions. 

Education and raising awareness play pivotal roles in combating misinformation and fostering understanding. Through collaborative efforts across communities and healthcare systems, we can ensure that every child, regardless of their health status or background, receives the care and support they deserve. This involves not only providing medical care but also addressing broader societal issues to create a more inclusive world for all.

What message would you like to share with other families facing similar challenges around the world?

We must learn as much as we can as soon as we’re able - MAKE TIME, to learn the basics of our/child’s T1D and/or any type of chronic medical condition. We must keep learning so we’ll be able to better navigate and manage the many “fire-blazing curve balls” that T1D will constantly throw our way. Check out a list of resources and books we’ve read on the Quick Referrals page of our info-blog to get you started on self-education. This is the safest path rather than heavily or primarily relying on social media for quick answers. Note: I don’t ever give quick simple answers and have made our followers aware. Please be mindful of my and my family’s time. Knowledge truly is power.

We’re not able to advocate as fiercely for ourselves or our children if we’re constantly chasing BGs and wondering what the heck caused her to spike or drop so quickly (all within basic understanding of autoimmune T1D regarding BG fluctuations due to hormones, insulin sensitivity, carb ratios, various types of foods and carb absorptions, timing of pre-bolus to said carb absorptions, physical activities, and type(s) of insulin(s) using).

- Acknowledging, that the fewer resources one has, the more vigilant they have to be in caring for their health. Reach out to healthcare providers for at least 2-3 referrals for each type of specialist (e.g., endocrinologists, PCPs, dermatologists, psychologists or LCSWs, optometrists, podiatrists, gastroenterologists, etc.). Check with your insurance, if any, to see if these providers are within your network. Keep in mind, that it may not always be worth purchasing secondary insurance (U.S. residents) depending on your/your child’s individual needs, budget, or household size (siblings).

- If one has access to the internet then be sure to plan ahead before your clinical visit with a list of questions - Google “What to ask an endocrinologist [or any specialist] before and during my appointment?” If your healthcare provider uses MyChart like our care team, then you can message them through your patient portal ahead of your appointment to make the discussion go smoother the day of seeing as it’s highly likely his/her endo will be inundated with patients like ours (booked 6-8 months out, we visit her endo four times yearly).

- If you can find a genuinely supportive endo who will truly listen to all of your concerns living with or caring for someone with autoimmune T1D, to help you/us advocate, then that’s your best bet to request they write School Orders individualized for you/your child’s safety and best interests in mind.

- Ask to speak with a licensed clinical social worker and/or psychologist to discuss your child’s mental health - managing a chronic condition and enduring constant denial and/or resistance from any school/district will surely exacerbate any of our mental health remaining, especially with young children like ours.

- Have a warrior mindset - Sounds like, “I have and will always continue fighting for my children’s mental and physical safety in and out of school ‘til my last dying breath. They will know how to protect themselves before they’re in high school.” Other people’s opinions - school, district, non-medical personnel, or those who are not even certified diabetes educators, do NOT matter when it comes to the health and safety of my child with chronic autoimmune T1D.”

- Those in the U.S. should take the following steps to navigate the public school system with any type of diabetes at https://diabetes.org/advocacy/safe-at-school-state-laws/legal-protections. Contact a Safe at School advocate at AskADA@diabetes.org. Be prepared and budget to seek legal counsel if you’ve tried to cooperate with your child’s school and they still refuse to fulfill your requests pertaining to your child’s individual medical needs and deny them any of their disability rights to free and appropriate public education (FAPE) in the least restrictive learning environment (LRE) or fail to provide competent care in school. NOTE: I’m very well aware of ADA [and JDRF, Beyond Type 1] organizations accepting hundreds of thousands to millions of pharmaceutical donations. This reference to ADA is for informational purposes only.

Conclusion

In conclusion, Shelsea's story highlights the critical need for inclusivity and support for children with chronic conditions in schools. Her advocacy not only benefits her daughter but also serves as a beacon of hope and empowerment for families facing similar challenges worldwide. Let us heed Shelsea's call to action, advocating for policy changes and fostering a more supportive environment for all children with chronic conditions. To learn more about Shelsea's journey and her advocacy efforts, we encourage you to connect with her directly, via this link. Together, we can create a more inclusive and supportive world for every child, regardless of their health condition.