EAGLEHAWK mother Rebecca Quinn sees great potential in the National Disability Insurance Scheme.
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But she believes it has yet to be realised, and she's not alone in thinking so.
Grassroots campaign Every Australian Counts is in the midst of a series of forums seeking to understand the system's flaws and help develop solutions.
"It's people on the ground who know best what is and isn't working with the NDIS. They are also the ones who know best how to fix it," spokesperson Kirsten Deane said.
She said the NDIS had changed the lives of many people for the better.
"It has finally delivered the support they have needed to get out and do the things they want to do," Ms Deane said.
But there were some common threads to emerge from the almost 25 forums Every Australian Counts has so far staged.
"Too many people are missing out on the benefits the NDIS can deliver," Ms Deane said.
"The system is bureaucratic and too difficult for people and providers to navigate.
"People are waiting too long for support while others are missing out altogether and falling through the cracks. That has to change."
She said the system's flaws had to be fixed so people could finally get the support they so desperately needed.
"We all want it [the NDIS] to work," Ms Deane said.
Ms Quinn is mother to William, an 11-year-old boy with Down syndrome.
She also runs a carer support group for carers of children with disability or chronic illness under the age of 18, which meets weekly in Long Gully.
Initially, she said it seemed there wouldn't be enough members to sustain Bendigo My Time.
Now, she said they were looking at opening a second group.
People's experiences with the NDIS have become a talking point in the meetings.
"We've come a long way, and some people are doing really well on the NDIS and getting regular supports they've never had," Ms Quinn said.
She and her family weren't worse off for being in the NDIS.
"But it's so random, who gets what," she said.
"It depends on who your planner is, what you get. The difference in plans is extraordinary for people with similar issues and it just depends on who you talk to."
A lack of consistency was one of the biggest issues Ms Quinn had identified with the NDIS.
Other challenges, locally, included a lack of providers.
Ms Quinn said it took a long time when her son's first got an NDIS package in September 2017 to find providers for the sum he had been given.
Part of that was knowing where to look. But she said there was also a limited number of providers, particularly with pediatrics.
When the time came for their second plan, Ms Quinn said they had a better idea of what they wanted from their package.
But they had less of a budget for certain aspects of William's care such as speech therapy.
"I just thought we'd get some more therapy because we were doing so well with it," Ms Quinn said.
The family was also told funding for certain programs, such as a three-day social group run by a disability services provider during the school holidays, was a parental responsibility.
Ms Quinn said challenging 'reviewable decisions' could involve a lengthy wait and ultimately result in the matter being put to the Administrative Appeals Tribunal.
"The other big issue, since the NDIS has come in places like the Department of Health and Human Services that were giving out packages that supported things like sibling groups or carers support are all losing their funding," she said.
"Because NDIS is for the person with disability, there's no funding for families and supports, so we don't have the respite that we used to have.
"That's why I think a lot of parents are struggling."
The NDIS has affected the role of carers, many of whom have taken up responsibility for either helping a loved one manage their package or doing so for them.
"If we are not careful, we are going to end up with a dual-track system where people who have families, advocates and people in their corner helping them to navigate the system get better outcomes than those who don't," Ms Deane said.
"We are in danger of entrenching disadvantage rather than working to counter it."
The NDIS had been rolled out to 60,725 Victorians by the end of 2018.
Almost 12,100 of those participants - roughly 20 per cent - were receiving support for the first time.
A participant satisfaction survey revealed 77 per cent of respondents either considered the agency's planning process in the six months to the end of 2018 'good' or 'very good'.
More than 4860 children had accessed the early childhood early intervention approach, which is available for all children until their seventh birthday.
Federal Minister for Families and Social Services, Paul Fletcher described the NDIS in January as one of the most important social reforms in Australian history.
Three-quarters of respondents to a survey of NDIS participants aged 25 and over, cited at that time, said the NDIS had helped them exercise more choice and control.
The government expected participation in the NDIS to grow to 460,000 people, nationwide, by 2020.
It was supporting more than 250,000 people as of the start of this year, almost one in three of whom were receiving assistance for the first time.
NDIS support funding is expected to total $22 billion a year by 2020.
Have your say
Every Australian Counts will host a forum in Bendigo calling for urgent changes to the NDIS.
When: March 27, 10.30am - 12.30pm
Where: Long Gully Community Centre, 23-29 Havilah Road, Long Gully
Registrations: www.everyaustraliancounts.com.au/make-work-community-forums/
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