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Project Reflections: Cath Bucolo on Participant Led Videos

Sometimes the outcomes of a project have impact far beyond what was planned or anticipated. The Participant Led Videos project that we rolled out earlier this year was one such case. Our Clinical Practice Lead, Cath Bucolo, shares her reflections:

I’ve been working in the fields of acquired brain injury, rehabilitation, disability and advocacy for more than 20 years. But, surprisingly, it’s only recently that I’ve come to fully appreciate the lack of opportunity people with disability have to work out what’s really important to them, to find their voice, and be really heard.

In my work at the Summer Foundation, I have a lot to do with supporting younger people with disability find more suitable housing than aged care. A significant part of this is around them having the right supports to be able to live in the community.

Recently, I was involved in a project to produce resources to help people with disability to make their own videos to tell their support workers what is important to them and how they wanted to be assisted.

Officially it was the Participant Led Video project, but it became more affectionately known as the ‘filming of the filming of the filming’ project. We produced written resources and how-to videos to guide people through meaningful goal setting, planning and making a video. The project also included filming the whole process – hence the tongue-in-cheek title!

It was in supporting six people with disability to make their own training videos that I was surprised, impressed and, to be honest, at times overwhelmed with emotion.

At the start of the project we asked each participant for a commitment to attend eight or nine sessions of 1-2 hours each over a period of four months. Incredibly, there were only two cancelled sessions out of the total of more than 40 sessions.

The project was evaluated by La Trobe University, who looked at the participants’ satisfaction, enjoyment and the usefulness of the videos, as well as that of their close others and the project staff.

The stand-out comment was “this is the best gift anyone has ever given me”, but resoundingly positive endorsements came from everyone involved.

The evaluation identified that people with disability strongly value someone supporting them to develop their own meaningful goals – but it seems that this is often not done.

It was a surprise to hear that people who had been in the disability and health systems for many years, who also had National Disability Insurance Scheme plans and supports and services around them, said that making their own training video was the first time in their lives they had felt genuinely heard.

This project changed us all for the better.  As experienced project leads, in our careers we have asked people to tell us their stories and we listened; we have asked people what was important to them and we based our rehabilitation on that.

But as I read the scripts for each video, what really came through was that the person’s own voice was directing their own support. I hadn’t realised how much people aren’t given the chance to do this.

This project confirmed for us that people with high and complex support needs can direct their own support; they have very strong and clear opinions about how that support should be delivered; they have the right to direct their own support; and they have the right to ‘voice’ those opinions in whatever way they can.

What became so clear was that all of us who are living with and working with people with disability need to uphold those rights.  Participant led videos do that.

We’ve put together a proposal for stage 2 of this great project. We want to run workshops nationally for allied health professionals and support coordinators, so that they can be skilled to support people to make their own videos and continue this important work.

The ‘filming of the filming of the filming project’ taught me many things. One of them was this: even in a field you have considerable experience in, you can be part of something that surprises you, and even overwhelms you with emotion, and yet it can turn out to be one of the most meaningful things you’ve been part of in your whole career.

You can see the resources here.

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