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Down Syndrome NSW
Level 6/410 Church St, North Parramatta
9am-5pm Monday - Thursday
T: 9841 444

Wednesday, 4 May 2011

DS NSW e-Update, May 2011

Our CEO, Steve Clarke writes a message to members each month, keeping us up to date with current activities.  He's been particularly busy recently, with some major events and changes in the national arena, as well as local events, so we thought we'd share his thoughts more widely. 

CEO Steve Clarke's introductory letter circulated to email subscribers, 3rd May 2011:

Today I write to you from the National Disability and Carer Congress in Melbourne where the main theme is “Make Every Australian Count”

“Make Every Australian Count”  is the inspirational campaign (please sign up if you haven’t already) in support of the National Disability Insurance Scheme (NDIS) The NDIS has been proposed as a universal scheme, similar to Medicare that will cover all Australians today and those born tomorrow. It will transform the way services and support for people with disabilities are funded and delivered. It will ensure that people are not just better supported but have greater individual choice and control over how, when and what services they decide to use.

The Productivity Commission has been inquiring into an NDIS at the request of the Federal Government and earlier this year released a thoughtful and well argued report (you can see a summary here ). The draft report strongly recommends the introduction of an NDIS, at a cost of approx $6 Billion, not just because adequate support to lead a dignified and inclusive life (‘an ordinary life’) is a basic human right and core responsibility of government but also because it is actually a good investment to do so – an investment that will make society more productive, reduce inefficiencies and strengthen our communities – in short that will make the world a better place!

It has been hugely encouraging to hear enthusiastic support for an NDIS during the conference across the political spectrum from assistant treasurer Bill Shorten, Parliamentary Secretary for Disabilities Jan McLucas, opposition spokesman Mitch Fifield, the Greens, as well as from such luminaries as Australian of the Year Simon McKeon.

I shall carry this inspiration with me into the first meeting of Down Syndrome Australia tomorrow – a meeting more than 10 years in the making. Here, plans will be developed for our new formed national body – Down Syndrome Australia will continue as it did as a more informal network to advocate strongly for groundbreaking developments such as an NDIS. We will continue to exercise a strong voice in the implementation of new programs such as Better Start which from 1st July will provide individual funding for early intervention for all children with Down syndrome and a number of other congenital conditions  Down Syndrome Australia has a representative, Catherine McAlpine, on the Expert Reference Group for Better Start, and will be working hard to make sure that it is indeed a better start for families and not just another bureaucratic “challenge” for parents to overcome.

Talking about inspiration – tomorrow’s national gathering will cap off for me a couple of weeks of amazing events not least was meeting up with a crowd of over 100 at the remote outpost of Cameron Corner – where three states meet. This was the final destination of the Scrapheap Adventure Ride 2011 – a most remarkable event involving some most remarkable people which has so far raised close to $60,000 in support of Down Syndrome NSW.

My huge thanks to all riders, crew, supporters and sponsors and in particular to Perry Gilsenan, the ‘father of the Scrapheap’ for devising and putting together this event like no other. Please follow the links in the update to read all the reports.

Last but not least in the inspiration stakes, I was privileged to attend the formal launch of Up, Up, Toastmasters last weekend – a public speaking group for adults with Down syndrome. We already knew people with Down syndrome have a lot to say if given an opportunity and this group has given many a forum to have that say and to build their confidence and skills in doing so. To find out more about Up, Up, Toastmasters please drop me a line or contact Maria Short at Down Syndrome NSW.

You will find some of this and much more in this month’s e-Update

CEO, Down Syndrome NSW

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