A genetic condition has left Lee Kitchingman in a wheelchair and his mother Kristina suffering mobility issues, but dealing with the NDIS is making their lives even more challenging than they already are.
Both have funding and plans through the NDIS that have been running for about two years, but it's been a constant fight to get what they need.
Having no continuity of care has resulted in Mr Kitchingman being admitted to hospital at least once a year, including for eight months last year. Until the NDIS began Mr Kitchingman had enjoyed continuity of care for about 30 years.
"Due to no continuity of care, they were not able to have the processes in place that kept him well in the first place. All those services have broken down.
"We had good funding in our first plan, which was fantastic, but no support or anybody to help implement it."
Because of a decision made, which was not checked with the family before being implemented, Lee lost his one-day-a-week job as an IT worker at a disability service.
There are a lot of strong people who are at breaking point.Kristina Kitchingman
And Ms Kitchingman will this week have an appointment to get orthotics, which she has been waiting two years for.
"I have been putting in for orthotics and specialist stuff for my legs - I fall over a lot - for two years. NDIS keeps losing paperwork, so I have to keep getting new reviews and occupational therapist reports for two years. It's finally been approved.
"They keep losing paperwork, which is a common complaint among people dealing with NDIS.
"You're constantly going back for review or quotes. Then they only allocate three months for quotes so if they don't look at your paperwork in that time, then you have to get another."
The Kitchingmans were among dozens of local people with a disability, families, carers and disability service providers who took part in the NDIS Make it Work forum held in Ballarat on Tuesday.
They outlined where the NDIS is falling down and the issues they face, and offered potential solutions that they know will work.
Ms Kitchingman said common complaints about the NDIS included poorly trained staff who had little understanding about disability, lost paperwork, bureaucratic processes, no continuity of care, funding issues, excuses and clients having little ability to review the decision before a plan was implemented.
"There are a lot of strong people here who are at breaking point," she said.
"For many people the NDIS has really changed their lives. It has finally delivered the support they have needed to get out and do the things they want to do," said Kirsten Deane from the Every Australian Counts campaign, who organised the forum.
"But too many people are missing out on the benefits the NDIS can deliver. 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."
"We all want it work. These problems have to be fixed so people can finally get the support they so desperately need.
Ms Dean called on federal MPs to advocate for their local community about what needs to be done to fix the NDIS.
"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," she said.
A National Disability Insurance Agency spokesperson said employees had skills and experience from the allied health, mental health and disability sector, and were a mix of Commonwealth and former state government employees, as well as private sector and not for profit staff.
"We conduct ongoing training for planners and partners in relation to areas of particular expertise, to ensure nationally consistent standards," the spokesperson said.
"After extensive consultation with participants, their families and carers about the NDIS experience, the NDIA developed the new NDIS Pathways program - which is currently being progressively rolled out across Australia.
"These pathway improvements include face-to-face planning meetings that deliver easier to understand, accessible plans, supported by a consistent, single point of contact. These improvements are designed so that participants better understand their plans before approval and can start accessing supports quickly and easily.
"The face-to-face planning approach provides more opportunities for participants to ask questions and understand how their plan has been developed so that any concerns can be addressed before plan approval."
From January 1, 2019, all eligible Victorians are able to access the NDIS. Before that more than 13,000 people with a disability in the Barwon, Central Highlands and Western District had access for up to two years.
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