School Struggles: Advocating for your Child with T1D

As a parent of a child or teenager with Type 1 Diabetes (T1D), ensuring they receive the right support at school is crucial for their health, well-being and education. However, some schools may not fully understand the complexities of T1D or be willing to accommodate your child’s medical needs, leading to unnecessary stress for you and your child.

Working together with the school is key to creating a safe and positive learning environment. While some schools may need more education or encouragement, most want to do what’s best for their students. Approaching the situation with a collaborative mindset (they are an important part of the team helping to manage your child’s health)- providing information, offering training resources, and maintaining open communication- can help build a productive partnership.

However, if you find yourself in a situation where the school is not being supportive, there are steps you can take to work collaboratively while ensuring your child’s rights and well-being.

1. Know Your Child’s Rights in School

In the UK, children with T1D are legally entitled to support in school under:

England

• Equality Act 2010- Requires schools to make “reasonable adjustments” to ensure children with disabilities, including Type 1 Diabetes, are not disadvantaged or discriminated against.

• Children and Families Act 2014- Maintained schools, academies and free schools in England must support students with medical conditions through Individual Healthcare Plans (IHPs).

• Department for Education (DfE) Guidance (2015): “Supporting Pupils at School with Medical Conditions”- This guidance outlines school’s responsibilities in providing diabetes care.

Wales

• Equality Act 2010- Requires schools to make “reasonable adjustments” to ensure children with disabilities, including Type 1 Diabetes, are not disadvantaged or discriminated against.

• Additional Learning Needs and Education Tribunal (Wales) Act 2018- Provides support for children with additional learning needs, which can include medical conditions like T1D.

• Welsh Government Guidance: “Supporting Learners with Healthcare Needs” (2017)- Schools must have policies to support students with medical conditions.

Scotland

• Equality Act 2010- Requires schools to make “reasonable adjustments” to ensure children with disabilities, including Type 1 Diabetes, are not disadvantaged or discriminated against.

• Education (Additional Support for Learning)(Scotland) Act 2004- Recognises medical conditions like T1D as an additional support need, meaning schools must provide appropriate assistance.

• Scottish Government Guidance: “Supporting Children and Young People with Healthcare Needs in Schools” (2017)- Outlines how schools should support students with medical conditions

Northern Ireland

• Disability Discrimination Act 1995 (as amended by the Special Educational Needs and Disability (NI) Order 2005- SENDO)- Protects children with disabilities, including T1D, from discrimination in schools.

• Department of Education NI Guidance: “Supporting Pupils with Medication Needs” (2008)- Provides guidelines for schools on how to care for students with medical conditions.

Key Takeaway:

If the school is not providing adequate support, remind them of their legal duty to accommodate your child’s medical needs.

2. Develop an Individual Healthcare Plan (IHP)

An IHP is a document that outlines your child’s diabetes management at school. It should include:

• Blood glucose monitoring requirements

• Insulin administration details

• Meal and snack times

• Hypoglycemia and hyperglycemia management- if some of the exact symptoms your child feels during these episodes are not listed- have your Diabetes Care team add them. The more specific to your child the better.

• Emergency contact information

  The school nurse or SENCO (Special Educational Needs Coordinator) should work with you, your child and their diabetes team to create this plan.

  What to do if the School Refuses an IHP

  If the school is reluctant to implement an IHP, request a formal meeting with the headteacher, school nurse, and SENCO. If a member of your diabetic care team can be present, this also may be helpful. You may also escalate concerns to the local education authority (LEA) or academy trust.

  3. Communicate Effectively and Keep Records

• Request a meeting: Arrange a face-to-face discussion to explain your child’s needs.

• Put everything in writing: Follow-up meetings with an email summarising what was discussed

• Keep a diary: If issues arise, document (with dates) incidents where the school failed to support your child properly

A well-documented record can be invaluable when you need to escalate the matter.

4. Educate Staff and Find Allies

Many school staff may not fully understand T1D, or may feel overwhelmed, if new to T1D care. Offer to:

• Provide educational materials from Diabetes UK or Breakthrough T1D

• Invite a diabetes nurse specialist to train staff on hypo/hyper management

Find teachers or support staff who are empathetic and willing to advocate for your child’s needs.

5. Support Your Child’s Emotional Well-Being

School stress can have a significant impact on your child’s diabetes management. Encourage them to:

• Speak up about their needs- Role-playing conversations with teachers can help.

• Express their feelings- Reassure them that it’s okay to feel frustrated or upset.

• Connect with other young people with T1D-Organisations like Diabetes UK and Breakthrough T1D

6. Escalate the Issue if Necessary

If the school continues to be uncooperative, take further action:

• Write to the school governors- They oversee school policies and can intervene.

• Contact your local authority- If it’s a maintained school, they are responsible for enforcing medical support policies.

• Raise the issue with Ofsted- While Ofsted does not handle individual complaints, they assess how schools support children with medical conditions.

• Seek support from Diabetes UK- Their advocacy team can provide guidance and resources.

Final Thoughts

Thankfully, many children and teenagers with Type 1 Diabetes are in schools that are supportive, inclusive and proactive in meeting their medical needs. If you’re currently facing obstacles, don’t lose hope- advocacy, education and teamwork can lead to real progress. By working alongside teachers, school nurses and administrators you can help ensure that your child not only stays safe but also thrives academically, socially and emotionally.