Diabetes in school: a fundamental human right
In October 2023, I was lucky enough to be granted a scholarship to attend ISPAD 2023 (International Society for Paediatric and Adolescent Diabetes) as a #dedoc° voice. As someone who works professionally in the children’s rights sector, I was very interested in attending the ‘Diabetes in Schools’ session and hearing from the ‘ISPAD Diabetes in School Special Interest Group’. Hearing this talk helped outline the stark reality of type 1 diabetes (T1D) in schools, and it truly impressed in me the need for urgent action on this.
The stark reality of type 1 diabetes in schools
At ISPAD, Peter Goss (a paediatrician from Australia) shared a couple of cases where children have been let down so much by their schools in terms of care for their type 1 diabetes that they lost their lives. Two devastating case studies, two very preventable deaths in two very different parts of the world:
13-year-old German Emily Schierwagen who travelled to London on a school trip. Emily had been vomiting for 3 days as a result of unrecognised DKA and died. Emily’s teacher has now been charged with “negligent homicide”.
16-year-old Australian Lachlan Cook travelled to Vietnam on a school trip. Lachlan also died as a result of unrecognised DKA. His death was ruled by the coroner as “preventable”. A coronial inquest into Lachlan’s death stated: “The school wasted into a state of ignorance about many of the risks it was facing in relation to Lachlan”.
Ultimately, I am sharing these deaths not to fear monger, but to impress the severity that can come from type 1 diabetes if not managed, and so we can learn from Emily and Lachlan, ensuring this never happens again. Peter Goss said in his speech: “Schools have a custodial responsibility on and off campus”.
All children have a right to an education and living with type 1 diabetes must not interfere with this basic human right.
Children’s rights in diabetes
When a child lives with diabetes, there are many aspects of life that change, and that includes ensuring that their caretakers are equipped with the knowledge to adequately manage their diabetes. When you add in schooling, and the child’s right to an education, things start to get a lot more complex.
Artwork that symbolises the dependence that children have on the adults around them and the support they need — especially when the child lives with a chronic illness such as diabetes. Generated with Midjourney.
The child’s usual caretaker, the person who usually gets training on how to take care of their diabetes, cannot be with the child full-time (for most cases), and the responsibility of caretaking for the child’s diabetes then ultimately falls onto the school.
The trouble is that, currently, no country in the world has standardised education on how to care for diabetes in a school setting, which leaves the responsibility of training up individuals to care for children in the schools/local authorities in each country. This, of course, means that every single child going through a school system has a different experience of their right to an education, and actually means that children around the world can’t access education, and are out in danger in certain situations.
Children’s human rights are the basic, ground-level expectation that must be adhered to. In terms of international human rights law, the rights of children with disabilities (which includes type 1 diabetes) are specifically recognised in the United Nations Convention on the Rights of the Child (UNCRC) and the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD).
Students have several rights in school, and these include:
the right to attend school in a safe and supportive environment that enables best practice of management of T1D according to international legal practices,
to experience equal opportunity, obtain equal education and participate equally in activities with their peers, including all extra-curricular activities,
and to check and immediately manage out-of-target glucose levels at school in a respectful manner in a safe space and with the assistance of, and supervision by, an experienced adult if required.
Many teachers are supportive, but have no medical qualifications, training, or experience to fully ensure these rights are realised. Their contributions should be acknowledged and supported, and this blog isn’t about disregarding their efforts. It’s about stating that everyone needs to work together for the betterment of the future of children living with type 1 diabetes.
Access to education
Obviously it is important that every child receives an education. However for an individual living with type 1 diabetes, a good education is vital for the future, to ensure they have money to spend on the future, but also to ensure they can use specialised diabetes technology. There are wide disparities in school participation among children with diabetes worldwide, with schools refusing entry and no insulin to be given at school in less-resourced countries, and schools refusing school support and many schools not authorised to administer insulin in well-resourced countries. The common theme is that there is a reliance on goodwill, cooperation and dedication from school staff and medical teams, meaning that it is a lottery whether a child is receiving safe and quality care in school.
A student's classmates show support on World Diabetes Day by wearing blue and holding blue ribbons. Source: School Blue-nity by Colcalli, 14.11.2010. Public Domain.
In a research study published in The Lancet Diabetes Endocrinology Journal named ‘Schooling and Diabetes: not a level playing field’, there were a few quotes that stood out to me:
““All children and adolescents with diabetes have the right to equitable access to education and to feel safe and supported at school. Yet the recent US federal court ruling highlights that such a right is not a given and have to be fought for, even in a high-income country”.
“All stakeholders in school must step up and meet the challenges that diabetes represents in young people to ensure that students with diabetes get the best possible start in life and are not denied that passport to a better future”.
“Even high income countries must still fight for their right to education and right to be treated equitable in school, it is not a given”.”
In countries across the world, schooling and diabetes is not a level playing field. In a study conducted in England and Wales, it was found that children living with type 1 diabetes miss, on average, nine more days of schooling than the average student. We cannot let the time they are in school have less value than the average student as well.
ISPAD Recommendation for Diabetes in School 2022
Maintaining normal glycaemic (blood sugar) levels during school hours is important, and glycaemic targets during school hours should not differ from targets in any other setting.
Care of the students must be individualised.
All school personnel, including teachers, administrative staff, counsellors, sports staff, nursing staff and out of hours care staff must receive appropriate diabetes education.
Administration, or careful supervision, of insulin administration by: (1) Injections or (2) insulin pump, requires school personnel to be specifically trained and legally authorised with informed parental consent.
A box of insulin vials, which are used to manage diabetes. Source: Nine Bottles of Insulin on The Wall by Alan Levine, 8.10.2018. Public Domain.
In the end, diabetes is always there, 24 hours per day, 7 days a week, 12 months a year. Type 1 diabetes does not pause when a child is at school, and to ensure every child has adequate access to their education, more work needs to be done. I believe a start could be standardising the education schools receive on type 1 diabetes per country.
But we all need to work together — schools, teachers, governments, advocates, everyone — to ensure that the futures of children living with type 1 diabetes are preserved.
A small note: I am from Scotland, and the UNCRC (United Nation Convention for the Rights of the Child), has been integrated into Scots Law (and comes into effect July 2024). This means that professionals may now be prosecuted if they don’t uphold a child’s human rights, including their right to an education and their right to be treated equally. It is my hope that this law change might mean that more children living with diabetes in schools will get the support they deserve!
What is the situation like for children living with diabetes and attending school in your country? Let us know in the comments.
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