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Opening session Aine Healy
- 3. 1. Listen to people with intellectual disability
- 4. 2.Some people will not reach out to you Go to them!
- 5. 3.Share what you know…
- 6. 4.Go to the Doctor!
- 8. 6.It is good to have friends…
- 9. 7.Advocacy
- 11. 9.Support that REALLY works
- 12. We could go on and on and on…..
- 13. We are doing our bit too!
- 16. You don’t have to do it alone…
Editor's Notes
- Dear NDIS, And just like that you are two. It seemed only yesterday that you were a sparkle in the eye of so many – you were very very wanted! So much can happen in two years – and it has. You’ve grown to 8 trial sites and over 13000 people have had their plans approved. So for your birthday your CID wanted to pass on some wisdom. Not in a bossy kind of way, more like the cool aunty way – you know the one that seems wise beyond her nearly 60 years and that you will listen to because she is not your mother.? Thats who we want to be. That’s right old CID is nearly 60…We’ve had an interest in something like you for a looooong time. We’ve been watching you over the last few years and please bear with us as we share some of the tips and lessons we have learnt…along the way
- Dear NDIS, And just like that you are two. It seemed only yesterday that you were a sparkle in the eye of so many – you were very very wanted! So much can happen in two years – and it has. You’ve grown to 8 trial sites and over 13000 people have had their plans approved. So for your birthday your Aunty Advocacy and Uncle CID wanted to pass on some wisdom. Not in a bossy kind of way, more like the cool aunty way – you know the one that seems wise beyond her nearly 60 years. That’s right old CID is nearly 60…We’ve had an interest in something like you for a looooong time. We’ve been watching you over the last few years and please bear with us as we share some of the tips and lessons we have learnt…along the way
- We talked a lot about this last year – and an ID reference group has been set up It’s great that you have self advocates Michael Sullivan, Judy Huett and Sylvia Gant on this. We’ve always gotten terrific and honest advice from people with ID – even if it was telling us we weren’t doing the best job! There has been consultations too, plus involving people at the local level It would be good to see this input grow as you grow and what results because of it…
- There are some people seem to especially do it tough… Trouble with the law, drugs or alcohol Maybe their mental health is not so good either Or maybe they are parents with ID too…. You will need to go to them… Keen to know how tier 2 will work -
- Share what you know.. We know that people like to get good info – our relatives at ASK CID & IDEAS are ALWAYS saying this & they are right. We know that you’ve started up Disability Support Organisations. The Disability Loop has launched too. It will be great to build on this. People like to know what’s going on
- I know Uncle CID is always banging on about good health – but he is right. There must be a good health system and a good disability support system if people are to get and stay healthy - these systems must work together. You will need to make sure that all the states and territories play nicely. This goes for mental health too!
- Decisions, decisions, decisions… People will have a lot more choices and let’s encourage this and develop people’s skills But it’s not clear what’s in place when substitute decision making happens….
- We are pleased that you have asked us be on your advisory group on intellectual disability…alongside self advocates and others that know lots about ID. We know you’ve got groups for Early Intervention, Mental Health and others – working together is great – let’s do more of it.
- Advocacy People talk to us about this a lot… They want to have someone to stand beside them, explain the paper work, be in their corner, help them feel more safe, go with them to court or as one man told us recently “they do whatever it takes to help me to solve a problem”. Systemic advocacy – to look at improve the bigger picture is also important – people have said it is good I will get more support, but that doesn’t mean I will easily get a job or not et bullied when I go out. The advocacy review is on at the moment – so we know you are working on this.
- Improve your writing! There’s been lots of talk about making things easier to understand – the info and the processes – it really helps people to feel in charge. We know you’ve been working hard on this – great to see more easy read materials and pictures. People have told us they like you tube, videos and face to face info too. “It’s nice to have someone sit with you and go through stuff”.
- Support that REALLY works It must be that comprehensive, person centred, active support is the basis for meeting complex needs. Got to have skilled professionals that can work as a team This has been done differently by different states – so making sure there are no gap is a big thing.
- We could go on and on about other stuff too – housing, the forgotten national disability strategy, govt services closing, employment and on and on but we will leave that all for later.
- We must say since your last birthday we have been busy… There’s been trips to Canberra, Newcastle, Melbourne, Wagga Wagga, Perth and QLD to speak with others about what we do plus listening to many PWID about what they are or want to be doing. We are of course eagerly waiting to hear about where you will roll out next… please let us know soon. There’s been advisory groups, committee’s and many many meetings. We’ve made submissions on decision making, information, capacity building, abuse, safeguards and inclusion. We held a special roundtable on NDIA safeguards too – we think it will be very important while so much change is happening that the safeguards are robust or strong – but as people’s skills and confidence grows with a new system it can be tweaked. And we’ve even got tech savvy – we are on the facebook, the twitter and youtube! It has been good to connect with lots more people. Of course sometimes people have liked what we have to say – other times not. But you know us – we are not ones to shy away – we just figure we will try another way.
- It seems like you will have your work cut out for you over the next few years. We encourage you to be strong and true to your purpose. It won’t always be easy. And there is always someone who does not like what you are doing. It is hard to be strong and be flexible all at once - we know as we have have tried to do the same in our sixty years. We changed from being led by services and parents to being led by PWID – it took some getting used too – but it was– what’s that big word people are always using about you – TRANSFORMATIONAL.
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- Finally remember you don’t have to do it alone… Reach out you will find people are more than willing to work with you - Work with the great depth of knowledge there is about intellectual disability – our friends are your friends - tap into the established networks that have been doing this work for a long time…We are up for this challenge too !
- Anyway best wishes for a great 2nd birthday and we will enjoy the chance to chat much much more over the next 2 days. Best Wishes Aunty Advocacy & Uncle CID xx
- I’d like to note – that whilst the tone of my talk may be light hearted, please do not for a moment think that CID is nothing but serious about the work at hand to make the NDIS the dynamic reform it is meant to be. CID wants nothing less than a good life for all PWID. No doubt as the conference goes on over the next few days – there will be different opinions, ideas and thoughts on how this is done. We welcome this. There is much to be done and we must keep progressing. I feel very proud the NSW CID team – it has been a fabulous team that have worked tirelessly on this. Finally, thank you all for coming to the conference – you are all key to making not only this event but the ndis brilliant. Happy Birthday NDIS – here’s to your future good health!