World Down Syndrome Day 2020 – Day 8
Meetings and accessibility
by Dr Ellen Skladzien
The Down Syndrome Advisory Network is a network of people with Down syndrome from across Australia who provide input into the work of Down Syndrome Australia. We had a vision of ensuring that people with Down syndrome guide the work we do and, in the three years since DSAN was established, it has had a huge impact. The DSAN provides advice on projects, events and, importantly, helped us develop our National Advocacy Platform. They have met with the Governor General, been involved in media interviews and helped raise awareness about Down syndrome.
As CEO, I feel incredibly privileged to have this group of leaders involved in our work. I expected that DSAN would help us better understand the lived experience of Down syndrome, but I was thrilled to see positive changes in unexpected ways too – one example being the way we provide information at our board and committee meetings. In the past, we used to provide the board with numerous Excel spreadsheets to present detailed reporting on financial accounts. Once DSAN Chair Michael Sullivan began to represent the DSAN at board meetings, we realised we needed to change this approach. By presenting our information in a variety of formats, our financial reports are much more informative and easier to understand. This has been beneficial to all the board members and has ensured our meetings are more accessible for everyone. Additionally, we will be holding a training session for the board on accessible board meetings at our next face-to-face meeting.
We have also made changes in other committee meetings, including in the work we are doing to get ready for the World Down Syndrome Congress in Brisbane 2022. We have found that self-advocates bring up ideas and questions which others might not have thought to ask. They also help us to change the pace which ensures that everyone around the table understands the issues we are discussing.
Our learning is ongoing, of course. Having Michael Sullivan as the DSAN representative at the Board meetings has changed the dynamics of our meetings and helped us to improve the clarity and focus of our work.
The DSAN have been an essential part of DSA’s work and I look forward to listening, learning and working alongside these leaders and advocates into the future.
In an article that appeared in Voice April 2019, Michael Sullivan said, ‘The DSAN is very important to the members as we have a chance to have our opinions heard and to have our say. Some of us experienced advocates get a chance to pass on some of our knowledge and some of the younger advocates get to learn more about being leaders.
One of the things I get to do as the Chair of the DSAN is to report to the DSA board about our work so far. When I am reporting to the board it’s actually me giving the opinions and ideas from the whole advisory network, that’s really important because that’s how we know that the organisation is representing people with Down syndrome, and not just their families.’