Down Syndrome Victoria

My first involvement was that I found DSV online. They were local and their office was around the corner - I walked in off the street - and they greeted me and showed me around, and were generally very helpful. It's quite nerve wracking initially, so that was really important that that initial contact went well, and they couldn't have been better there, Sue came and spent some time with me, and showed me the library - they made me feel part of everything already! After my son was born, they sent me a parent pack, which had all the resources and information - the government resources that were available - and invited me to the parent night. It all made me feel like I wasn't alone, and socially it's great, we still have friends from that night and so do the kids. They also invited me to join the fortnightly support group MyTime - connecting me with the rest of the community. They also put on lots of events throughout the year. I think that when I was well supported, I also felt like I could support the other parents that were new. DSV are also a trusted resource for me - you can get so many opinions when you start searching the net - but since DSV are the peak body they have accurate and up-to-date information, which is great. If there were any drawbacks or things to improve on, it's only that DSV, like many other providers, have limited funding - so individual case management isn't an option. If anything I'd just like them to be more visible to help more people, they just need to get the message out!

I became involved 27 years ago when my daughter was born. We found out about Down Syndrome Victoria through a nurse just after my daughter was born about the DSV. Two days after we got in touch we got a pack of contact details and information sent from DSV. DSV to me are like a 'one stop shop' for support. Over the years we've had really good service from them, and developed a close relationship, especially when my daughter went to school. They provided people to come out to the school and assist in changing programs to meet her need. They've been great in the adult years as well - they help with general relationship issues, social issues and more. It is also really lovely having Club 21 - it's a regular event for people under 18 where they can meet and socialise - we've found that really great. DSV provide all different sorts of support. In terms of how they could improve - at the end of the day it all boils down to funding, in general. We know there's only so much funding; it's always the biggest challenge really. It would be nice to have staff there full time, just to be able to expand on the programs - though it is lovely to have the ones they have currently. I think DSV have really promoted public awareness in a really positive way, and their brand has improved so much over the years in terms of getting the word out there, though it would be great to add to the programs they already have. Overall though, 5 stars!