Like many three year olds, Canberra toddler Gabriela is growing up quickly. But her parents are worried she may be outgrowing the standing frame and walker she was measured for in January and July this year respectively.
Subscribe now for unlimited access.
$0/
(min cost $0)
or signup to continue reading
The family from Campbell is still waiting for the National Disability Insurance Agency to approve the supports for her that were recommended by a physiotherapist.
Getting approval wasn't straight forward, said Gabriela's mum Jesusa.
"They asked 'why does she need a standing frame?' And I said 'she's almost three and she can't stand by herself'.
Despite the physiotherapist writing another report confirming the equipment was needed, the family is still waiting to hear back.
Gabriela has a global developmental delay caused by a gene mutation, which affects her speech, fine motor skills and gross motor skills. She also has low muscle tone.
Jesusa and her husband were in Parliament House on Tuesday as part of events for International Day of People with a Disability, hoping that sharing their experience of dealing with the National Disability Insurance Scheme would help others and lead to improvements.
While they're grateful for the regular occupational therapy and speech therapy they have been able to access as part of the scheme, it hasn't always been easy and they've had to get the intervention of former MP for Canberra Gai Brodtmann and new Canberra MP Alicia Payne to make progress.
Jesusa said it was hard not hearing back or knowing if they had done enough, with no idea about what the processes or time-frames involved were.
"We provide everything we think they need, and then we don't hear about it for a while."
"I don't know how engaged they are with the community or with the people they approve funding for so they can actually see the good things that come out of it.
"Like Gabriela is able to have speech therapy, physio and OT sessions every fortnight or so, that's positive, but for her physical needs. Who knows, if she had her standing frame or walker early on, maybe she'd be stronger and walking right now, and in the long term it would be less strain on the system."
READ MORE:
Under the NDIS, participants develop a plan with a case worker, which then determines how much funding they receive. But the system has been plagued with issues, including the inability for people to see or alter a draft plan before it is submitted, and if someone wants to make a minor change to their plan, the whole thing must be reviewed.
Ms Payne was part of the bipartisan committee that recommended a suite of changes to the scheme's planning system, including calling for participants to be able to see their draft plans before they are approved, and that participants are all given the opportunity to meet face-to-face with an official to approve their plan before its approved.
"Urgent action must be taken to improve the operation of the NDIS, and in particular the planning process, to maximise choice and control for people with disability and ensure that NDIS participants are fully supported to achieve their goals," the report said.
The committee also called for additional skills development and training for all involved in the planning process, after hearing evidence that planners may not understand particular disabilities, the broader disability sector and lack skills and qualifications to help people with complex needs.
While acknowledging work for extra training was underway, the committee said "rigorous, comprehensive and ongoing training is essential for all persons involved in the planning process."
Committee chair and Liberal MP Kevin Andrews told Parliament the issues the committee had heard were concerning and troubling that they weren't new and had been raised before.
"The committee emphasises that the issues raised in this report are not intended as a criticism of individuals involved in the planning process, who are often doing a very good job under trying circumstances," he said.
Ms Payne said it was important to improve the planning process and allow people to see their plans before they are locked in.
"It is so important and so obvious that people should be able to see their draft plan before it's locked in. Currently the only way it can be changed is through a time-consuming review process," she said.