T1 Across the Pond: T1 Kids Barred from Schools


Many of us were diagnosed T1 when we were children or teenagers still in school, so we know all too well how difficult it can be to navigate the social minefield of managing diabetes in a school setting with other kids around. What T1 families should expect, though, is to have a strong support system in place from the educators and administrators where you attend school. But for years, children in England and Wales have been excluded from many school activities, field trips, and other aspects of routine school life because of a school system that isn’t fully prepared to handle children with long-term care needs, such as Type 1 diabetes.

In 2012, for example, a young boy in Northern Ireland was denied admission into his primary school because the school wasn’t set up to administer insulin shots and blood sugar checks during the school day. Luckily the boy was able to enroll in another local school where the administrators were willing to give him insulin shots and check his blood sugar on a voluntary basis, but the lack of support for young kids who need assistance with long-term care needs can be stressful for both kids and parents in the UK school system.

While these stories of exclusion focused a spotlight on a serious issue in the UK, a lack of formalized school education and training for children with T1 is an issue that extends far wider than in just the EU. For example, in November 2013 the Southern Poverty Law Center in the U.S. filed a complaint against a Florida county school district for not making accommodations for T1 children to attend pre-K programs. The suit alleges that only 16 percent of the county’s pre-K programs fully accommodate T1 students.

A 2012 report from the British Columbia Medical Journal noted that children ages 6 to 12 are the most at risk in their diabetes care at school because support at school is rare. Another article in the Diabetes Journal noted that even in the U.S., where provisions are set up in the Individuals with Disabilities Education Act to make sure children with diabetes get the care they need, many kids still are refused admission and don’t get the attention and help they need to administer insulin shots, check blood glucose, and eat snacks to help balance their blood sugar.

A few months ago, it was announced in the UK that the Children and Families Bill, which creates legislation around childcare, education, adoption and the family justice system, would be adding an amendment forcing all schools in England and Wales to make “suitable arrangements for supporting the wellbeing of pupils with long-term health needs.” (Though called a “bill” in the UK, it is actually legislation that will be enacted.)

This legislation was pushed largely by Diabetes UK, a strong advocate for the diabetes community and their families in the UK. The group is helping guide the policies and implementation plans for the schools. Diabetes UK has been campaigning for this change for a while and said that it will have a positive effect on nearly 1 million children with long-term health needs ranging from Type 1 diabetes to asthma to epilepsy, and help their families gain peace of mind while their child is at school.

The new school care guidelines will be issued sometime in 2014, though no solid date has been announced yet. Thanks to the collective efforts of everyone who advocates for children with T1, there are going to be more students in the UK and beyond who can look forward to a classroom environment that’s better equipped to cater to all children, regardless of healthcare issues or long-term care needs.

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John Sjolund is the co-founder and CEO of Timesulin, a European company that manufactures a timer-enabled replacement cap for insulin pens. He was diagnosed T1 at age 3.

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