A group in Southern California is proposing to build a special elementary school exclusively for kids with type 1 diabetes. They claim it would be a nurturing environment that would cater specifically to the struggles and needs of insulin-dependent children. But is it a good idea, really?

The idea, proposed in a recent GoFundMe campaign, brings up a whole host of questions and issues, starting with: Would there be enough T1 kids in one area to warrant a school like this? And is it a positive thing to isolate them in this way?

We shopped the idea around the Diabetes Community and discovered it stirs up quite a bit of controversy and emotion.

 

Fundraising for a Diabetes-Only School

Created on Oct. 9, the GoFundMe campaign simply titled A School for Type One Diabetic Kids proposes the following:

Children with Type One Diabetes and their parents deserve to choose. Our goal is to raise enough Starter-Funds to develop, open, and run a K-5 non-profit school specifically for children with T1D. While many parents choose to enroll their students in a traditional setting, our school will offer parents an alternative option where their child can attend a school wherein curriculum and operations are governed by the needs of children with T1D...

 We aim to offer a space, free of charge, for students with T1D who would like to attend a school that integrates their struggles and needs into every component of the school day. Research shows that the amount of children being diagnosed with T1D is increasing, but currently, there is no organization available where children with T1D can learn in an environment that utilizes their disability as a source of strength and learning...

Our goal is grand but, with your help, reachable. We aim to open the school in 2019. Funds will be used to pay the salary of at least two teachers, one administrator, a campus aid/secretary, a space for learning, technology for learning, recreational area for exercise, learning materials, and operation bills.

As of Friday, Oct. 19, the campaign had raised $1,110 of its ambitious $200,000 goal. Now, there's a lot unknown. The campaign was posted by a woman named Wendolyn Nolan, who from online searches we gather is a longtime teacher in Los Angeles who appears to have a child or family member with T1D. We also gather from the GoFundMe site that the proposed school would be based in or near Lakewood, CA.

But when we reached out to Nolan via the crowdfunding page, she declined to talk with us directly, instead sending a one-sentence email response: "We seek support from organizations centered in the belief that personalized, differentiated education can engender positive change in the T1D community."

 

So Many Questions...

That lack of response certainly leaves a lot of open questions and concerns about this idea. For example:

  • Why not focus efforts on making sure T1D kids are well-supported in the schools they already attend?
  • Are there enough kids in that particular area in that particular area of Southern California who are eligible, and whose families would have an interest here? (If so, that begs the bigger question of why there's such a large cluster of T1D kids in one area to start with.)
  • Have the people proposing to found this new school reached out to the American Diabetes Association's Safe at School program for help or guidance?
  • Is $200,000 even enough to build and run a school of this nature?
  • And what about the advocacy push to assure that T1D kids don't feel weird or different? Directing them to a "special school" may smack of segregation, that could be a real negative.

Think for a moment about all the efforts through the decades focused on students with diabetes and D-management in schools, in both private and public settings. A huge theme has been empowering children with diabetes (CWDs) to take charge of their own health while in school -- from being able to treat Lows or carry meters and check glucose levels in class without disrupting education, to the ever-continuing battle of school nurse staffing and insulin/glucagon injections in school, to just being able to "fit in" with other kids despite anything diabetes throws their way. Countless lawsuits have been fought (and won!) on these fronts, and it's the whole basis for 504 Plans and Individualized Education Plans (IEPs) that are meant to provide necessary accommodations for children with diabetes to have the same chance to thrive in school as their non-diabetic peers.

On the one hand, one could see the idea of a new special school as a way to escape all of that -- everyone shares the same "disability," therefore everyone gets equal treatment. On the other hand, though, all of these efforts were made specifically so that kids with T1D would be able to integrate into a mainstream setting, which could serve them very well later in life. 

 

Querying Experts on Diabetes in School

We talked with D-Dad Jeff Hitchcock in Ohio, whose now-adult daughter Marissa was diagnosed at 24 months back in the early 90s. He founded the Children With Diabetes forum in the mid-90s that grew into a non-profit organization and leads the Friends For Life conferences around the world each year, and in the past two decades he's interacted with thousands upon thousands of families with type 1 kids.

"If this is the work of a parent who’s struggled with their child and public education, I personally think this is the wrong solution," he told DiabetesMine by phone. "A child with type 1, just like a child with any chronic illness, is different. But pulling them out and segregating them sends a message that they're somehow broken in a way that requires them to be isolated. I think that’s a horrible message. We want our children to grow up in the world, not a ghetto. My concern with something like this is it sends the exact wrong message."

In all the years since first founding the CWD forums online, Hitchcock doesn't recall ever seeing a proposal like this for a special diabetes school -- at least, not more than in jest or "what if" batter from community members. He does recall seeing the idea of group homeschooling in the past from fellow D-parents, but again he believes that's a different animal altogether.

Crystal Woodward, who leads the American Diabetes Association's Safe at School program and is one of the nation's leading experts on diabetes and education, is also not convinced of the value of this specialty school idea.

"As you know, our Safe at School campaign works hard and has made significant progress in the fight against discrimination of students with diabetes by schools," she says. "As underscored by ADA’s school position statement, requiring a student with diabetes to attend a different school from his or her assigned school is a discriminatory practice. A school established specifically for T1D students unnecessarily and improperly segregates students with diabetes from their peers. Diabetes services should be provided by the student’s assigned school."

We asked if ADA had any data on the educational or diabetes outcomes of students with diabetes, but they appeared to have no resources to share on that point.

 

"More Helpful for Younger Children"

One expert we queried made a strong argument that the age of the children is key. 

Shari Williams in Kansas is a longtime type 1 herself, diagnosed in 1978 while in the fourth grade, and professionally she trains early education childcare teachers. She sees both sides of this, recognizing that many educators aren't equipped to handle T1 children with diabetes in many environments; but she also notes that younger CWDs are different than older students.

"The younger the child, the more helpful this would be," she says. "I see a huge need for good, safe places for infants, toddlers, preschoolers, and K-3 aged children."

Williams agrees that mainstream integration is beneficial, but still thinks age is a determining factor.

"Some accommodation is helpful, but I worry that families today expect extreme levels of accommodation. It doesn’t seem to give the children adequate motivation to make an effort to fit themselves into the rest of society," she says.

But she adds: "I feel for the families that must put their children in early education programs in the United States who have health concerns. Young grade-school children who aren’t really old enough to advocate for their own important needs are at risk and some schools (individual nurses and teachers are the issue) are better than others. When kids are old enough to speak up to keep themselves out of danger, I feel like there is no need for extra layers of separation."

 

The Diabetes Community Responds

In watching online discussions about this over several days, a number of people brought up the idea of sending kids to diabetes summer camp, rather than a long-term school setting.

Wanting to hear more POVs, we posed a question about the idea on Facebook and received a plethora of responses. Here's a sampling:

  • "I think a school for K-5 kids with all medical issues would be cool, as a lot of them have a hard time getting care. Maybe even specialized daycare. My parents struggled to find daycare for me when we moved away from family."
  • "My thoughts: I wouldn’t want to keep my kid away from other students who have a working pancreas."
  • "This type of setting breeds entitlement to special treatment when it’s not warranted (ie: non medical emergencies/accommodations), anger towards being different once reaching middle school, and lack of social skills around the topic of chronic illness."
  • "Part of me thinks... nice thought but so many other questions going on in my head as to why this became a need. The other part is heartbroken at the thought, are there THAT many children in this one area K-5 with T1D and why?"
  • "The educational needs of kids with diabetes (are) exactly the same as for every other child. The medical needs are different. Raise money and help support legislation to get a school nurse in every school."
  • "I’m not a fan of this. I think there would be a stigma attached to this type of school. I’d rather see funds go towards equipping school systems with training and funding support for kids with T1 in a public school."
  • "The more I think about this, the more it bothers me. We, as parents work hard to ensure that our T1 kids are given the same rights as other kids, and work for them to have appropriate accommodations in schools. Why should they have to go a special school to get this? Diabetes is a chronic condition. It is not a disability that causes them to not be able to function in a standard classroom setting. I would rather see a charter school that specializes in arts or sciences THAT HAS AN EXPANDED NURSING STAFF that can treat kids with a rainbow conditions and needs."
  • "This is NOT the answer."
  • "Being T1 and working in special education, this is a terrible idea. Inclusion with typical peers is always the goal and there is no reason someone with T1 cannot be included in a typical public school setting. Yes you need to fight to get your kids medical needs met. It's only going to set an example to prepare them for life when they have to fight for accommodations at work or for insurance to cover their needs. This is an easy opt out for the parents that does nothing to teach the child how to navigate society and the challenges of having T1."
  • "$200,000 would not even begin to 'start up' a decent school anyway. I am suspicious of this. And no funding for a nurse at the school?? Whaaaatttt??? Nope."
  • "A T1 ghetto??? I saw schools like this when I was doing international work in Russia. It was no good for a host of reasons."
  • "Apartheid system. Very bad idea."

 

My Personal T1D School Experiences

Now, I realize up front that every child is different and Your Education Learning Style -- as well as diabetes -- may vary. I also understand that private schools, homeschooling and special needs schools exist for a reason and certainly have their place, as necessary. But a dedicated school just for T1D?

Expert and authoritative opinions on education aside, this is where I draw back on my own experiencing growing up with type 1. My D-diagnosis came just after my 5th birthday back in 1984, the spring just before starting school later that year. I was the only kid with T1D in my Southeast Michigan school district, and even though my own mom with T1D had gone through the same district a generation earlier, most of the folks around then were no longer teaching or on staff -- and it was a "new age," as far as newer medications and D-management, including the brand new glucose monitoring technology that was just making it outside of clinics!

Of course there were struggles. Quite a few of them. But my family and I taught the educators, my classmates and other parents how this whole diabetes thing worked. We brought things into class and talked with them. I learned a lot from those experiences, and even though they didn't involve modern tech like insulin pumps or CGMs, those lessons informed my life as a child, teenager and eventually into adulthood.

Being in school with peers that weren't T1D was huge, not only on the awareness aspect, but in teaching me that despite diabetes on board, I was still a kid first. Diabetes didn't define me, and even though it interfered frequently in my daily activities and caused issues everyone wished weren't necessary, it instilled a mindset that I am not just diabetes. That I can and should function in this world just like anyone else, and if I can manage I don't need to be treated differently than anyone else.

Those lessons mean a lot to me, especially now as I approach 40 and have gone through some version of adulting -- living in a dorm with people who aren't PWDs, dating and marriage to someone not pancreatically-challenged, later buying and selling houses, holding multiple jobs and career positions, and so on.

So for me, being cordoned off to a "special school" because I had diabetes would not have been a plus.

But hey, I'm no expert. I'm only one T1D guy with an opinion.

I wonder what you all think?