Dr Haines said her office is contacted on average eight times a week by people struggling to navigate NDIS and she wanted to include the voices of those who contacted her in their own words.

The submission shares the story of a a mother who was asked if her son, who has Down Syndrome, would "grow out of it" and a 39-year-old woman in a wheelchair with complex physical needs who was told the system wouldn't cover the cost of the incontinence pads she has to wear.

Dr Haines said for some, navigating NDIS can be distressing and frustrating, especially given the availability of services and group homes regionally.

She said there were a number of issues that regional Australians and Indi residents faced that were currently not being considered when a plan was created.

"For someone in a small town or who lives out of town... public transport isn't available, so to actually get to services transport costs need to be built into the plan that takes into account rurality," she said.

Molyullah mother Lee Harris cares for her son Taylor Harris-Gunn, 20, who has a significant intellectual disability, is on the autism spectrum, has limited speech and requires 24 hour supervision.

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Ms Harris said described the process of trying to get Taylor's NDIS plan correct as 'horrific'. She said in the first plan for Taylor, his name changed to Andrew midway through the document.

"It was the first thing I noticed, I was shattered," she said.

"I was really disappointed and slightly offended, the whole ideology behind NDIS is about individuals...

"When I saw his name was wrong I instantly realised my son was not being treated like an individual, if they can't even get his name right."

Many of the services Taylor uses, including the closest respite care, are in Wangaratta, 50 kilometres away, so his level two transport funding of less than $2500 gets used up very quickly.

Ms Harris said 14 months ago, in an attempt to get more transports costs funded for Taylor, she submitted a "review of a reviewable decision" to NDIA - but still waiting for a decision to be made.

She has been waiting for more than two years for her bathroom to be modified from a combined shower-over-bathtub to a walk in shower, so Taylor can shower independently.

"It's just a really slow, bureaucratic, time-wasting, money-wasting process," she said. "You're already flat out caring for a loved one with a disability let alone having to do copious amounts of paper work, it really is a bureaucratic nightmare. I'm fairly educated and informed and I really struggled with it, what about someone with a significant disability who has no support - how are they going to navigate it? It's really frightening."