CCS Disability Action Children Disabled Youth

Including children’s voices in disability support: call for feedback3 min read

25/10/19 3 min read

Including children’s voices in disability support: call for feedback3 min read

Reading Time: 3 minutes


Feeling ignored: personal experience

Disabled children and young people can often experience a lack of involvement in decisions that affect their lives. This can include education, family life, recreational activities such as play, and the wider health system.

When thinking back to my own experiences as a disabled child and then as a young person, I can identify numerous occasions where I felt inconsequential and ignored in situations that directly affected me.

On one such occasion, I vividly remember a specialist not engaging with me as a patient, rather talking to my parents as though I was absent. An already traumatic situation was made worse by a lack of communication from the specialist. I remember being cross as a six-year-old that the doctor didn’t talk to me. After all, it was me who was sick.

Over the years, there were many experiences like this one, each one adding another small layer of unnecessary trauma. Now as an adult who focuses on children’s rights, I look back upon my own experiences and think: ‘A lot of this could’ve been avoided if someone had just explained to me what was happening’. But this is so often the case.

Including children’s voices in disability support

Children and young people are often voiceless, with the professionals mostly engaging with their adult parents or caregivers. This is one of my motivating forces, having learnt and grown from my own experiences. I am very passionate about child focused and shared decision making.

Earlier this year, CCS Disability Action received funding from the IHC Foundation for a project focused on how to improve the experiences of the children and young people we support within the shared decision-making process. It hasn’t been an easy task, as working with disabled children and young people can present us with unique challenges. We must be flexible and creative with our approaches.

This resulting document aims to improve how our organisation works with disabled children and young people. Children and young people, regardless of disability, have specific rights, which include being involved in decisions that affect them, as well as having their views heard and taken seriously.

An opportunity to develop

Many of our staff have skills and strategies in place in their day to day work to ensure that the children and young people with disabilities that we support are involved in decisions regarding their care. But there is always room for improvement. Evidence shows that one of the biggest barriers for practitioners is a lack of guidance and support when it comes to working effectively with children and young people with disabilities.

This document aims to guide and strengthen our practice to ensure we are listening to the views of children and young people in our work.

There are some key ideas that we need to understand to ensure that we are working well with children and young people. These are:

  • The rights of disabled children and young people to be heard.
  • The fundamental concepts of shared decision making.
  • Barriers to shared decision making.
  • Strategies and tools for working with disabled children and young people.

Your voice matters

We are now at the consultation stage for the document we have developed, and would love to hear your thoughts and feedback. Although the resource is primarily aimed at those who work with disabled children and young people, we are keen to receive feedback from the wider disability community.

This document needs to reflect a wide range of perspectives to make sure that we can achieve our goal of improving the lives of the children and young people that we support!

Please take a moment to download the Shared decision making with disabled children and young people – draft consultation document, available on the CCS Disability Action website.

You can provide feedback by emailing phoebegrace.eden-mann@ccsDisabilityAction.org.nz.