Do you have a child who uses Key Word Sign and/or other forms of communication?

sibling KWS

The Australian Catholic University is undertaking a research project looking at siblings' stories of leaning and using Key Word Sign and other forms of communication.

Families are invited to participate in the research where the primary participant of the research will be a sibling (aged 5-18) of a child with complex communication needs.

The sibling participant will need to be able to participate in a conversation interview with the researcher in English, either independently or with support from a family member.

The study is due to commence in February 2020.

Read More if you would like to participate,

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For further information, contact the research team @ This email address is being protected from spambots. You need JavaScript enabled to view it. or This email address is being protected from spambots. You need JavaScript enabled to view it.


Down Syndrome NSW would like to thank our community alliances for their generous invitations to these special events.

Free tickets to Frozen 2
Presented by Community Mental Health Awareness
Date: Saturday 7th December
Venue: Hoyts Broadway, cnr Bay and Greek Sts Broadway
Time: 10.15am for a 10.30am start.

This email address is being protected from spambots. You need JavaScript enabled to view it.(one ticker per person required for entry)

Children's Christmas Magic Show
Presented by Lions Club of Parramatta
All the fun of a traditional magic show, for children with special needs and their families.
Date: Saturday 14th December
Venue: Quaycentre, Sydney Olympic Park Sports Centre, Homebush
Time: Three show: 12.30pm, 2.30pm and 4.30pm

This email address is being protected from spambots. You need JavaScript enabled to view it.(one ticker per person required for entry) and your preferred show time. RSVP by Monday 21st October.


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. 

Up Up Away Parramatta

Join Down Syndrome NSW for “Up,Up and Away”, a social group for kids aged 4-17 years with Down syndrome, and their siblings. Parents and carers get a chance to socialise too.

Our end-of-year celebration will be at Ollie Webb Reserve Playground

When: Saturday 30th November
Where: 16 Glebe St Parramatta
Time: 10am - 1pm.  A FREE sausage sizzle will be rpovided.  Bring other snacks for a picnic.
Cost: Free to attend
RSVP: Wednesday 27th Nov.
Register online here.  Please note, we only accept online registrations.  You must be a member of Down Syndrome NSW to attend. Membership is free and it's easy to join or renew.

What to bring: Active wear for kids and BYO food if any allergies.  Swimmers and towels for the water play area.
We kindly request that parents/carers assist with supervision of their own childrden at this event.

View our video

Produced with thanks by Mounties Group

Up Up Away youtube