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Lynne Foreman is a Geelong resident who has been one of the foremost campaigners for the NDIS in her area She is also someone who knows personally about what a difference this reform can make, having been on a waiting list for 9 years with only a modest amount of emergency support.
While visiting relatives in WA, over the last two weeks Lynne was willing to don the campaign t-shirt and talk about her experience as one of the first people in Australia to go through the DisabilityCare system and receive a support package, including a component which allowed her to access equipment and support during her holiday in WA. She is pictured above with members of the MS Outreach Society.
Lynne has Arthrogryposis (Arthrogryposis Multiplex Congenita) which is a muscle disorder that causes multiple joint contractures at birth. (A contracture is a limitation in the range of motion of a joint). This is how she describes it:
I was born with my legs crossed across my chest, deformed feet (my feet now are the size of a 3 year olds and I have no toes) stiff joints mainly from my hips down, on my hands I do have a few fingers which have no top joints. At the age of 49 they discovered my neck also has been fused in the 2 top vertebras from birth.
Lynne talked about her firsthand experience noting the immediate difference of DisabilityCare as a ‘one stop shop’ where she can get information any time she needs it as well as her main support package. She found the service timely and flexible, although some of the language in the documents was a little confusing. She particularly appreciatedfeatures such as the portal which enables her to keep track of what support she is entitled to and what she’s used and how that makes the care provider accountable.
Lynne kept a diary of her experience and you can read it here.
When you are 34 years old and fiercely independent the last option you want to be considering is life in a nursing home. But after an official letter today, WA campaigner Hayden Stevens is worried that prospect is looking more likely.
Today’s mail brought a letter from the WA Combined Application Process to which Hayden had applied for funding to assist him to continue living independently. With a degenerative condition Hayden’s needs have changed over the last few years and he is currently only able to afford a limited amount of nights with an overnight carer. Family and friends are currently bridging the gap, but that’s not sustainable, even in the short term.
This NDIS video from a Qld Sunshine Coast family zooms in on how NDIS will pay for things Australians take for granted – mobility, learning, independence and inclusion – with a clever twist on a well-known TV advertisement.
Throughout 2011 we created 10 videos that told our stories about why an NDIS is vital social reform for every Australian. We want to know your thoughts on which videos you think are the most effective? We want to know the stories you think we should focus on in 2012. Please leave your comments below:
More videos when you Continue reading »
Leonie: My two sons both come to Lifestart. Xavier is the oldest one – he’s nearly four now. He has an autism spectrum disorder, and his younger brother Zachary has a very rare genetic condition which leaves him with severe to profound disabilities.
Have you read the book When Horse Became Saw? It’s a very raw, real account of how autism changed the world of Kathy, Alex and Anthony (pictured above) and and how they have made their collective way into a very different life than the one they had planned. On so many pages, this story underlines the necessity for systemic change like the NDIS so that individuals and families are to not only survive but prosper. It’s something to which so many EAC supporters can relate.
Erin is violin and viola player. After an operation went wrong, she lost her hearing, and was later diagnosed with a neurological movement disorder called Dystonia. Erin hasn’t given up on her music even though she hasn’t always had the right hearing aids, or been able to hold her viola.
She continues to play the viola, and hopes the NDIS will mean she can have personalised support and a wheelchair, so she can fulfill her dream of teaching people with a disability the violin and viola, and forming her own ensemble.
My story – A journey of Music and Disability
My journey of Music and Disability started in 2006 when I became hearing impaired completely in the left ear and partially in the right ear,after an operation to put in tubes in my ears went wrong.
I have played violin since 1993 and viola since 1998 and I did not know how on earth I could continue playing these instruments with a hearing loss. I did keep it up but my intonation suffered greatly.
Jessica is 12 years old. She was born with the most severe form of cerebral palsy. She uses a wheelchair, cannot speak and needs round the clock care. And on top of everything else this family has to do, her mum Jane spends hours and hours filling out forms for respite care and support.
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Upcoming EventsUpcoming Events
- Several Federal Members of Parliament set to hold NDIS forums across Victoria, come and have your voice heard!
- Geelong is in for a double delight as two NDIS forums are held on February 8, 2013! Register today!
- Expert disability panel to discuss NDIS – Frankston – 5 December
- Upcoming NDIS forum in Benalla:15 November
- Rob Mitchell MP and Senator McLucas host NDIS forum in Seymour
- Chelsea, your Federal MP wants to hear your thoughts on the NDIS
- Senator Mclucas invites you to talk about the NDIS in Brand
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In the mediaIn the media
- Meanwhile in WA… 16 May, 2013
- PM on WA & the NDIS 28 March, 2013
- NDIS Legislation Eclipse 22 March, 2013
- Tweet NDIS Questions to the WA Leaders Debate Tonight 19 February, 2013
- Premier Barnett on the NDIS & COAG 5 December, 2012
- Excellence in Disability Reform -Samantha Jenkinson in her own words 29 November, 2012
- Asking our MPS to stand and deliver 26 November, 2012
- Media Release: CAMPAIGN REJECTS NDIS COST SCAREMONGERING 15 November, 2012