There’s no denying the National Disability Insurance Scheme (NDIS) IS helping make life easier and better for people living with disabilities across Australia.
But there is also no denying there are clear holes in the Scheme from inconsistency and financial confusion through to lack of adequately trained staff and insufficient resources, products and services in areas outside major cities.
With almost 485,000 participants on the NDIS, and growing weekly, with an average budget of around $69,000, the Scheme is clearly working to make people’s lives better - with a selection of vital goods, services and support at their fingertips.
Naturally, NDIS participants in the cities or major towns will have better access to a wider range of these services, but what about those in rural, regional or remote areas of the nation?
How do people living with disabilities access vital support and services if there aren’t any or they are scarce?
A recent ABCNews report highlighted the dire problems of distance experienced by NDIS participants who live in rural and remote parts of Australia.
More than 1700 NDIS participants live in remote parts of the Northern Territory, but advocates say many like Paulette Bumarda struggle to access adequate support, forcing them to relocate to the city, the ABC reported.
Paulette didn't want to leave her remote community, but a lack of NDIS support services meant she had no choice.
Her story highlights the dire need for more services and more support for participants in the bush.
Paulette was forced to leave her community and family at her remote Northern Territory home and move to Darwin. While she is very homesick, Paulette agrees the move was essential for her health.
She has Machado-Joseph's disease, a rare neuro degenerative condition that occurs because of a fault in a chromosome that results in the production of an abnormal protein.
This protein causes nerve cells to die prematurely in a part of the brain called the cerebellum. This damage initially causes muscular weakness and progresses over time to a total lack of voluntary control and very significant permanent physical disability.
In Darwin, Paulette can access a range of supports under her NDIS plan that she simply could not in her home community because nothing was available there.
Her care plan includes specialist accommodation and multiple weekly physiotherapy sessions.
But she had to leave her home to access this help.
Paulette is not alone. There are people with disabilities throughout rural Australia that are either forced to leave their homes and move to major centres or cities to access vital NDIS services and support, or drive hundreds of kilometres regularly to do so.
Or they simply stay where they are and make do with little or no suitable support because they can’t access adequate care for their needs because there just are not enough providers.
There are just more than 9200 NDIS service providers across the nation, but Australia’s peak disability advocacy group says lack of suitable staff accommodation and inadequate pricing levels provide major hurdles in getting those providers to these remote locations.
Nadia Lindop, from National Disability Services (NDS) NT, told the ABC that even though there is a 25% loading on prices for remote services, it doesn’t really reflect the real cost of doing business in remote communities.
NDIS participant Jason Motbey shares a similar story. He also had to leave his rural community and move to Darwin to access support and services to help manage his spinal condition.
“The reality is, the more I stayed out there (at his home community) the more my health declined,” he said.
In response to the ABC’s inquiries, the National Disability Insurance Agency (NDIA), that oversees the Scheme, said it had tried to introduce measures to improve bush access by increasing pricing limits and loading and trials at locations across the NT were underway to address market gaps.
Meanwhile, advocacy groups like NDS are keen to see trial results.
Ms. Lindop particularly wants to know how the NDIA is measuring or determining success of the trials, which are expected to be completed “within months”.
Meanwhile, people just like Paulette and Jason are without family and community support.
“It was very hard for me to leave my family,” Paulette said.