In June 2024, we conducted our biannual members survey, reaching out to all members via email and our weekly newsletter. We have conducted biannual surveys with the same questions for the past 3 years in order to connect, listen, learn and ascertain trend data.

We're pleased to share the insights gathered from this effort. 

Our response profile included:

• 8%people with Down syndrome
• 87% parents and carers
• 5% grandparents and other

The survey highlighted several key areas where Down Syndrome NSW provides valuable support, including: 

• Policy 
• Research and Advocacy
• UP! Club 
• Information and Support 
• Education and Training 
• Health Issues 
• Communications 
• Events  

The average overall rating for the services and support received from Down Syndrome NSW remains consistent at 3.2/5, the same rating as in both July 2023 and November 2023. 

What Down Syndrome NSW Does Well 

Members cited the following areas as strengths and value to them in our work:

• proactive engagement with the broader community, government, NGOs, and international bodies has bolstered its advocacy efforts,
• robust and diverse partnerships, corporate connections and fostering connections with other organisations,
• a great source of professional, expert information, resources and international speakers,
• mainstream media presence and high standards of brand profile,
• raising the profile of Down Syndrome in the broader community, making the organisation great advocates for people with Down syndrome.
• communication has greatly improved, making members feel part of a community with well-timed, detailed updates that cover a lot of opportunities to engage. 
• programs like Up Club Camp, webinars, events, information and support have made support accessible, enhancing the lives of people with Down Syndrome. 
• emotional and information support for new parents.

What Down Syndrome NSW Could Do Better 

Members provided insightful feedback on how Down Syndrome NSW could improve - we need to hear this and we welcome it. These suggestions included:

• working more with all member in relation to education and position,
• engaging older carers,
• putting a greater focus on elderly people with Down syndrome,
• providing members with an understanding of the decision making and scope of the organisation.,
• wanting to see more learning sessions and capacity building for individuals and families,
• increased activities for toddlers and teens,
• more face-to-face events allowing the community to come together, in addition to activities run in their local area, including regional areas.
• partnering with advocacy organisations on aligned policy areas and positions where relevant.

Suggested Activities

Valuable suggestions were made by our members in relation to activities they would find valuable. This included ideas such as more social events, from movie nights and dating opportunities to museum visits, drama clubs, fitness classes and playgroups, as well as extended holidays and longer camps. Enhancing support for new families in regional areas through activities and hospital visits, as well as improving health clinics for older individuals with Down Syndrome. Providing more information and education on aging and support with the NDIS, including more complex information. 

Shifts In The Past Six Months

We like to ask how things are tracking since the last survey, so we can be responsive and on the pulse. 

"Obvious that there has been an increase in attention from government, NGOs and media to create partnerships and campaign to support. The advocacy role you're playing and then the filtering of relevant information has been tremendous. We have also seen an increased involvement at an international level e.g. the regular UN trips and activities."

How Members Get Information

Interestingly, an overwhelming number of members still get most of their information from us via email and our newsletter. Facebook is also a strong source of information, as is a our revamped wonderful website which we continue to grow. This information of how people like to get information is critical as we start to now look at our communications strategy and segmentation, so that we can better target our communications and information to the right audiences.

Thank You

In closing out the survey, there were some beautiful words expressed highlighting the wonderful work of the Down Syndrome NSW team, which has been very much appreciated by our whole team. We do work hard and we do value our members. We won't always get everything right nor meet everyone's needs, though we are committed to doing better. 

• "When we reconnected with DSNSW we found the team members to be very professional and helpful. It appears that the philosophy for the association was to ensure having the right personnel working there. This makes for an exceptional experience for the families."
• "My main comment is that DSNSW has done extremely well in keeping experiences with members in the forefront."
• "I admire all staff members for their passion and dedication."
• "Just a huge thank you for the incredible work you are doing. My daughter has from before her daughter was born been able to access so much helpful information. It’s been a great source of help. My granddaughter has definitely had a better life because of the progressive work done by DSNSW"

We appreciate the time and feedback from all who participated in the survey. Your input is invaluable in helping us continue to improve and support our community effectively. 

Where To From Here

We take your views seriously and appreciate the time taken to inform our future. All surveys are shared (without personal details) with our Senior Leadership Team, with our team and also with our Board. We discuss and build all feedback into our strategic planning. Some things we take immediate action on, others we integrate into our planning.

We are a small but mighty team of just 10 staff working mostly part time with limited government funding, hence our current strategy to diversify our revenue strategy so we can deliver upon all the great suggestions from our members. A key part of this has been our recent increased focus on communicating and promoting our impact and outcomes, as well as our activities because we truly do so much, seven days a week, with passion and with the best intentions for our members who are central to all we do. 

We are also deeply conscious of our need to be in the regions and we continue to seek funding for this through grants, fundraising and corporate support and we will be this year launching our regional parent support network, we are just finalising our long awaited grant (albeit a very small grant) that we just received for this.