Heartbreaking stories of hardship and red tape flowed at a National Disability Insurance Scheme (NDIS) forum in East Maitland on Thursday.
Parents, grandparents, carers and NDIS recipients unleashed a wide range of problems with the system that is supposed to provide adequate individual support.
They spoke about a range of issues including inconsistent support plans, requirements suddenly being changed, medical conditions (which were clearly a lifelong disability) listed as ineligible and cutbacks to benefits.
Some have been fighting the system for several years.
The one hour meeting left Shadow Minister for the National Disability Insurance Scheme (NDIS) Bill Shorten with a clear message - a lot more work needs to be done.
Hunter River Community School principal Tracey Rapson said families were in tears in her office "at least once a day" over planning issues within the system.
"I think one of the main things is that it's not reasonable to expect planners have an understanding of every disability," she said.
"What they do need to have an understanding of is the overwhelming all-consuming fight that our families are in to support their young people with additional needs.
"Having a planner talk to you around when do you think they might become a functional member of society or when do you think that their disability is going to improve is not only insulting but it takes the fight completely out of those families."
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It took grandfather Chris Walker more than 6 years to access the NDIS for his grandson Logan Weir.
Logan and his older brother Jordan are the only two people in the world who have 'X' linked chronic intestinal pseudo obstruction.
When Logan's plan finally came through last week it offered much more support than Jordan's arrangements, which began two years ago.
Mr Walker said Jordan actually needed more support than Logan because he was older.
"You submit 250 pages of medical reports but not all of that goes through to the planning meeting. You end up with a plan that doesn't fit the needs of the child," Mr Walker said.
"There is no balance in what goes through."
Paterson MP Meryl Swanson hosted Mr Shorten's visit and told the group
"This is a good system and we want to make it work," she said.
In regional Australia we do face extra challenges ... often we don't have the specialists in the area ... Getting into more medical professionals is easier for people in the city.
Mr Shorten is holding a series of NDIS feedback forums.
"NDIS doesn't need another review, things just have to get fixed," he said.
"We will work with the government but we won't wait for the government."