POLICY AND ADVOCACY

Down Syndrome New South Wales plays a key role in advocating for systemic change, for a brighter future for individuals with Down syndrome.

Down Syndrome NSW advocates through a variety of submissions, government relations and lobbying on key issues.

Advocacy is always the primary focus of all of our activity.  We constantly work at barriers and systems that get in the way.

Many of our team members have lived experience which enables us to advocate with knowledge and credibility.

Some of the ways we actively advocate include:

  • Self-advocacy Down Syndrome NSW Advisory Network.
  • Supported (individual) advocacy for a person with Down syndrome and/or the person who cares for them.
  • Systemic advocacy such as sitting on advisory groups, responding to issues papers and conducting campaigns.
  • Policy influence where activities may include writing submissions, lobbying, sitting on advisory groups and conducting campaigns.
  • Sector development such as writing submissions, sitting on advisory groups and responding to inquiries and issues papers.

Here you can find our policy, advocacy, and submissions on key policy consultations and issues affecting our members.

Submissions

NDIS Rules Public Consultation on New Framework Planning

DSNSW welcomes the opportunity to provide feedback on the proposed NDIS Framework (Planning) Rules. Our submission reflects the lived experience of people with Down syndrome and their families and carers.

We have structured this response to the NDIS Rules: Public consultation on the New Framework Planning generally using and building on the content and headings in the Discussion Paper.

DSNSW welcomes further discussion on the new framework planning and is happy toprovide more information and explanation as required.

Inquiry into Supported Decision Making

This submission is informed by interviews with people with Down syndrome, parents, siblings and experienced advocates. It reflects decades of lived experience, practical insight, and a deep understanding of how systems work, and fail, on the ground.

The findings are clear. Supported Decision-Making (SDM) is not yet embedded as standard practice across systems. There are strong examples of SDM working well, but they depend almost entirely on committed people and individual relationships, as well as trust and advocacy, rather than systemic design.

NDIS Amendment (Getting the NDIS Back on Track No. 1) Bill 2024

Down Syndrome NSW is pleased to provide input into the proposed NDIS Amendment Bill. 
Following on from our significant involvement in consultations, community catch ups and forums, this proposed NDIS Amendment Bill presents an opportunity to better align the principles, outcomes and mechanics of the NDIS with the original intent of the scheme and to better embed the human rights of people with disability. Codesigning a more inclusive, connected and sustainable  ecosystem for people with disability in Australia.

Strategic Plan 2024 - 2026

Having been founded over 40 years ago, Down Syndrome NSW is deeply proud of its strong history forged on the shoulders of giants, of trailblazers who refused to leave their children in hospitals and institutions and who saw a brighter future.

It is in this same vein that we codesigned our Strategic Plan, with our eyes firmly planted on the future, armed with our knowledge and learnings from the past. This marks a time when the reform rich environment in which we operate remains in flux, with the Disability Royal Commission and NDIS Review signalling significant changes ahead. We are confident our strategy enables us to be agile and impactful in all we do.

Our hope for a brighter future will be translated into a reality, courtesy of this strategy. Hopes are wonderful, realisation of that hope into reality is where the magic happens. The brighter future we hope for sees people with Down syndrome as active and valued contributors in their diverse and thriving communities. So too, it sees our organisation amplify its innovation and impact.
Most importantly, a brighter future sees the whole of community elevated by being authentically inclusive of people with Down syndrome.

I am proud to present to you our Strategic Plan 2024 - 2026.

This matters because our loved ones with Down syndrome matter.