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Christmas is a time to reflect on our blessings.  We are grateful for your support which has helped us make great progress in 2019.  We rely on community support as we recieve less government funding than in the past.  Please help us conitnue our valuable work in 2020.  Some of our goals include:

  • Holding three UP!Club camps
  • Health conference on metabolic health issues
  • Housing seminar - understanding and advocating for improved housing options

DONATE HERE. Thank you for your continued support.

estate planning

Down Syndrome NSW is hosting a special information session on Estate planning with a lawyer  on February 12th 2020 in Parramatta.  The time will be 6pm-8pm, venue location to be advised.   

This seminar will be presented by Jonathan Harris, from Harris Freidman Lawyers. Jonathan has been a Director of Autism Association since 1996, and has a son with Autism. The seminar will cover the following topics:

  • What is the difference between a Will and a Proper Estate Plan?
  • What is the difference between Testamentary Trusts and Special Disability Trusts?
  • How to deal with the future financial needs of my family member with special needs?
  • How much do these types of arrangements cost to set up?
  • What are Guardianship and Powers of Attorney?
  • Centrelink issues, including preserving Centrelink pensions and benefits
  • Using a ‘Memorandum of Wishes’ to achieve intended outcomes

Bookings essential.  Register online here. RSVP Thursday 6th February.

For more information phone: 9841 4444

Last month, we prepared a submission to the NSW Disability Advocacy Review.  This Review is being conducted by the NSW Ageing and Disability Commission to better understand the purpose of disability advocacy services across the state. The Review will make recommendations about how advocacy funding and services are delivered into the future.

The Review is important because when the NDIS was introduced, the NSW Government shifted much of its disability funding to support the roll out of the NDIS.  This meant significant diminishing of funds available for non-government organisations like Down Syndrome NSW.  The NSW Government has continued to fund 39 organisations for specific advocacy funding.  Unfortunately, Down Syndrome NSW receives no state government funding and yet we are the only state Association representing people with Down syndrome and their families. 

While Down Syndrome NSW is fully supportive of the reforms to disability services and how this has brought greater choice and control for people with disability, these funding changes have significantly impacted on the Association and our future sustainability.

In 2018, Down Syndrome transitioned to be both an advocacy information service and a provider of support services funded under the NDIS.  We are registered as an NDIS service provider to deliver UP!Club social groups under the Community Participation + Skills and Capacity Building provision, and for Behaviour Support Management for families. Currently revenue from NDIS service provision covers approximately 10% of our operating expenditure.  We have one grant from the federal government that will expire at the end of June 2020 that supports 50% of our operating expenditure. 

The need for advocacy support remains one of our founding imperatives and primary focuses for the needs of our members and the Down syndrome community. Every day, Down Syndrome NSW plays a navigation and advocacy role in supporting an individual with Down syndrome and their family to understand their options and know what services they may be able to access.

Down Syndrome NSW is strongly of the view we are an organisation that is equally deserving and highly in need of this advocacy funding, from the state government.  We hope this review will assist in ensuring organisations like Down Syndrome NSW are able to receive state government funding support.  We will keep you informed and if you’re interested in reading the full submission, please clock on the link below.

Down Syndrome NSW Submission to Ageing and Disability Commissioner.