People living with disability in country Australia are left housebound, isolated and lonely as they face long delays to see specialists and access the NDIS.
Those with impaired vision need an ophthalmologist's report to join the insurance scheme, but specialists are usually city-based and waiting lists may be up to one year long, a federal inquiry has been told.
"People are out in these communities without necessarily being able to talk to, meet with, and learn from peers," Vision 2020 policy adviser Jonathan Craig told a hearing in Canberra on Friday.
"The isolation and sense of loneliness they feel without ... getting access to all of these things can be profound."
A parliamentary committee is examining the experience of NDIS participants in regional and rural Australia, including the availability and accessibility of disability services.
Those living with poorly understood conditions like ME/CFS - known as chronic fatigue syndrome - are invisible in both the rural health system and the NDIS, Neurological Alliance Australia deputy chair Anne Wilson said.
People with the syndrome have limited energy reserves and can experience long bouts of malaise, which can be exacerbated by medical appointments and lengthy NDIS assessments, Ms Wilson said.
"Our people don't get to see a GP in their local regional and remote area who knows anything about ME/CFS, let alone have ... support to help them get their application in," Ms Wilson said.
"They are so stigmatised, they are so disbelieved that they actually aren't sick that it is almost a human rights issue and it needs to be recognised as such."
It can take years for people with neurological disorders to be assessed in regional areas, forcing some to uproot their lives and move closer to services in the cities.
"The isolation that these people experience as a result of having virtually lost their ability to live in society ... is no more so than (for those) living in a rural, regional and remote area of Australia," Ms Wilson said.
The hearing was also told NDIS providers may charge several participants for travel even if they're providing the same service to people in the same location.
"One of the concerns we've heard for years is the double, triple and quadruple-dipping on travel," senator Hollie Hughes said.
"We know this is an issue."
