People with disabilities and their advocates gathered around Australia on Friday for a national day of action to tell the National Disability Insurance Scheme [NDIS] that every Australian counts and to make sure the NDIS is at the top of the agenda this federal election.
Speaking in front of a crowd in Littleton Gardens, Bega, advocate Chris Sparks said he wants everyone to know that the success or failure of the four-year-old NDIS affects you, even if you don’t currently have a disability.
“This is an insurance scheme and just like Medicare is there when you’re not sick, NDIS is there before you take a topple, have a stroke or are diagnosed with MS,” he told the crowd.
“There are between 10,000 and 12,000 new claims each year in Australia and someday, one of those claims will be made by your family or by you.”
Mr Sparks emphasized that the NDIS works for a majority of its clients but says, “when it does go wrong, it goes really, really wrong.”
A self-described optimist and a paraplegic in his 60’s, Mr Sparks says that his personal story doesn’t even touch on what happens to some people.
“My first plan with NDIS was pretty good. A cracker,” he says.
“But the second one is pretty poor, a ‘cut and paste’ job which doesn’t take into consideration key factors like the degradation of my shoulders from all the manual transfers I do. If my plan addressed that now with mechanical help, I can stay independent for much longer.”
Mr Sparks has been appealing his plan for six months to no avail.
Senior manager at The Disability Trust in Bega, Lynne Koerbin, has concerns that like Mr Sparks, some people with disabilities are not being heard or having their claims processed in a timely manner.
“One of the things we are asking for is that people making a claim with NDIS have more control over their own care plan,” she says.
“This is as simple as being able to proofread their own plans before they are approved and having support to understand what the plan means.”
Karen Sedatis and John Purser live in Bega and are the parents of Luc, who is 29 and is autistic.
This year, Luc’s plan with NDIS has about $20,000 less than in 2018 and no explanation was provided by NDIS for this shortfall.
Karen has appealed the plan and is very concerned about what will happen in the fourth quarter of 2019, when Luc runs out of money for the services he now uses and which, Karen says “keep him happy. And us happy.”
Karen’s first appeal was knocked back by NDIS with, she says “no satisfactory explanation.” She has now made a second appeal, which will go to a tribunal.
“It’s frustrating and takes a lot of time to deal with NDIS. It’s hard work and I’m an educated woman. Only the tough survive.”
Karen’s sentiment is one echoed by many of the speakers.
Paul Zeller, who is autistic, says that while it’s important to remember that we don’t hear much from the people who are happy with their plans, in his opinion, NDIS needs to acknowledge that people living with disabilities are the experts on their own lives.
Invitations to attend Friday’s day of action were sent to the candidates contesting Eden-Monaro, including Liberal Fiona Kotvojs, Labor’s Mike Kelly and The Greens’ Pat McGinlay but so close to the May 18 election, none of the candidates were able to attend, all on the campaign trail.
All sent words of support, however, Jo Riley-Fitzer spoke on behalf of Dr Kelly.
Ms Riley-Fitzer says that it is Labor’s intention to get NDIS back on track and protect it from cuts, while Liberal candidate Fiona Kotvojs wrote that her party’s focus would be on finding employment opportunities for people with autism.
Greens candidate Pat McGinlay’s letter emphasized removing the staffing cap currently affecting NDIS.
For more information about the ‘Make it Work’ campaign, visit the Every Australian Counts website.