New disability scheme offers choice and control
CARERS and people living with disability in Western and Far West NSW have begun participating in a round of government research to discuss the types of information they need about the National Disability Insurance Scheme (NDIS) roll out.
Run by Wheretoresearch, an independent social research agency, interviews were conducted face-to-face as well as by telephone and online, beginning this week.
Wheretoresearch confirmed another round of research is likely for those who have missed out but the response has been positive.
However, Cassie Gardner, who is Team Leader Ability Links Orana Far West and based in Dubbo, is concerned that the people who really should participate will not.
“Regional Australia doesn’t get enough of a chance to talk about how NDIS affects them, and when they do get the chance they don’t know what to say or what conversation to have,” Gardner told Weekender.
“Families don’t want to appear as if they don’t know anything. It’s happening in metro area and in the Hunter. I can understand their reticence. NDIS is new and everyone is new at it.
“I would say to carers and people with disability that anyone having any conversation is going to be helpful,” she said.
Given the demands placed on carers a new system to learn is not always preferred.
“It isn’t easy to change. You have families there who’ve been using an existing system who are tired anyway and you just don’t think you can do something different that looks really complicated.”
Choice and control are central to the scheme’s design defined by the NDIS Act 2013.
It is designed to “enable(s) people with a disability to exercise choice and control in the pursuit of their goals and the planning and delivery of their supports,” the act states.
According to the Independent Advisory Council End of Year Update 2015: Supporting an Ordinary Life for People with Disability the concept of choice and control has been largely absent from the paid support they receive and the introduction of the NDIS and this concept represents a large shift.
Gardner’s daughter Emily, 22, has Down Syndrome and right from her birth Gardner has sought and found an individualised funding system, similar to NDIS.
As a result she is confident the new scheme will work for many people.
“It started right back when was Em was born. We were uncertain what her future was. I had never known anyone with a disability before. We kept being shunted back into the disability system but we wanted to know what we could do to get her into the mainstream,” Gardner said.
“We wanted to do something else. We weren’t fitting in to that side of things so then when I heard about individualised funding we just ran with it.
“I’ve been learning about it for 20-odd years. It’s been available in the UK and Canada with varying degrees of success but its been there a long time.”
The Self Managed funding system is provided through the Supported Living Fund and means Gardner can employ an organisation to hold Emily’s funding so the Gardners can choose and employ their own workers.
“Almost two decades before the NDIS emerged allowing most people with disability the choice to determine their future, we made the choice to follow an individually funded program.”
As a result Emily works for Ishka, the Dubbo Visitor Information Centre, has volunteered for the Stampede Run, goes the gym and essentially leads a full life.
“The way NDIS is looking in other areas it’s working. The scheme can make a huge difference. It doesn’t mean people have to change too much but they just have more choice. They can opt to just do the add-ons.”
There is confusion around stories concerning accessibility to the NDIS, which appear to exclude some carers and people with disability.
“I guess what some people will say is that they’ve heard people with disability won’t be able to access NDIS. I would say to them, you don’t know until you’ve had a go.
“I was talking to a lady this morning whom I respect and she cares for three people, none of them who are her children, but she’s their full time carer, and she’s not well.
“She’s looking at the NDIS as the Holy Grail,” said Gardner. Join the NDIS conversation http://www.ndis.gov.au/ Twitter @NDIS Facebook: https://www.facebook. com/ndisaus
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