Burarra woman Fiona Steele first noticed her 12-year-old son Josias Bonson was “walking funny” two years ago.
For three months, the family endured a stressful period while Josias struggled with clinical needs that were unable to be met. The time it took to get him into the National Disability Insurance Scheme (NDIS) left Steele feeling “angry and upset”.
Yet even now, Josias – who was diagnosed with a neurodegenerative condition – is only able to access allied health professionals once every six weeks.
Steele and her son live at Maningrida in the Arnhem Land region of the Northern Territory, where there is limited availability of in-home care supports for people with disability.
Many in regional Australia are still waiting for such inequalities to be addressed, although a key factor behind the disparity – geography – is yet to be investigated.
The most recent report quantifying inequalities for people living with disability was released this week by the University of Melbourne’s Centre of Research Excellence in Disability. The Disability and Wellbeing Monitoring Framework report indicates that future research may investigate inequalities between groups within the population of people with disability, including those living in rural locations.
Mary Mallett, the CEO of Disability Advocacy Network Australia, says that in addition to the difficulties faced by all people living with disability, there are extra barriers for people in regional areas, where many services are just not available or not available in sufficient quantity.
As a result, Mallett says it is common for families with a child with disability in regional areas to move to capital cities.
The Albanese government has acknowledged the greater difficulties faced by NDIS participants living outside cities, and fixing regional access is one of the six key measures outlined in Labor’s plan to restore the scheme.
Bill Shorten, the minister for the NDIS, told Guardian Australia that for the decade the Coalition ran the scheme, “regional and remote communities’ access to the scheme was neglected”.
“Labor has promised to introduce a senior officer to address NDIS issues in regional and remote Australia,” he said. “I will speak to experts around Australia as a matter of urgency.”
Labor recently flagged broad-ranging reform of the NDIS, a scheme it set up in 2013.
Even after Josias Bonson became a participant, delays with the processing of funding approvals by the NDIS have continued. He has been waiting four months for a special ramp for his wheelchair so he can access the door of the family home.
Without any carers in Maningrida, assistive technology helps take the burden off Steele and Josias’ brothers, who have to lift him out of the car, as well as out of bed and to go to the bathroom.
His needs are changing because he is still growing. Equipment such as his wheelchair requires upgrading.
Amy Southwood, the manager for allied health services at Northern Territory disability services organisation Carpentaria, shares some of Steele’s concerns about delays by the National Disability Insurance Agency (NDIA), which administers the NDIS, and says staff shortages in regional areas make things difficult.
She says that on-the-ground services at Maningrida are hardworking and fully supportive of their community members despite NDIA delays and funding cuts, but there are simply not enough allied health workers in the community to be able to provide more frequent support for Josias.
Southwood says there have been significant delays from the NDIA to approve Josias’ assistive technology, and whenever funding has run out, plan reviews from the agency can take three months, sometimes longer.
For Josias, such delays leave him housebound, unable to go to school or join his family in cultural activities like fishing or going out bush.
An NDIA spokesperson tells the Guardian that the organisation understands the challenges faced by participants in rural and remote areas in finding support providers and accessing a range of services, and is committed to working with communities and stakeholders to address market gaps.
“The NDIA will make contact with the family to advise of updates to the young man’s NDIS plan, to ensure he has the disability-related supports he needs and to make sure they have help with accessing appropriate services.”
The spokesperson says the NDIA also has a network of around 260 remote community connectors who support more than 300 remote communities to help local community members connect to the NDIS and their disability-related supports.
Dee-Anne Kapene, the CEO of north-west Tasmanian disability service provider Coastal Residential Service, says many of the issues facing people with a disability are generic nationwide, but are amplified in regional areas.
She says even in Hobart it is difficult to access good quality, allied health professionals such as occupational therapists (OT) and behaviour support practitioners, which means those in the city are less likely to help fill gaps in the regions.
“If you’ve got an OT or a behaviour support practitioner that can fill up their books with clients who are close to the capital city where they live … it’s the ones that are in the outer lying, regional areas, like where we are, that are going to be given that longer waiting period.”
According to Kapene, her clients are facing waiting lists of up to six months for allied health specialists.
She says the long wait times compromise participant safety and wellbeing, as occupational therapists are needed to sign off on necessary living assists, such as the installation of a safety rail.
Kapene and Southwood say the workforce shortages also bring knock-on effects for participants’ budgets.
Southwood says the NDIA is working on the premise that if funds aren’t used, they aren’t needed, even though the under-utilisation often comes down to a client not drawing down on the funds because they are unable to access a service.
Kapene says: “If, for example, we’re struggling to find a behaviour therapist or a psychosocial therapist … that money that goes in that plan isn’t used. So we’ve got to justify the use for it the next year to keep it.”
In 2021, Dr George Disney, a research fellow at the University of Melbourne, analysed data in Victoria which showed participants in regional and remote Victoria were getting smaller NDIS plans than their urban counterparts. Even with the smaller plans, they were less able to spend the smaller plans they were allocated.
According to Kapene, the problem of under-utilisation in regional areas extends beyond the lack of access to staff.
For those who can’t drive for reasons related to their disability, she says, there is not only a lack of public transport infrastructure in regional areas but also increasing reports of areas losing accessible taxis.
“It’s one thing for the government to give our clients and participants access to taxi vouchers and things like that – but if there’s no taxis, it’s not costing them a damn penny, is it?” she says.
The spokesperson for the NDIA says services and systems, such as transport, are the responsibility of state and territory government and the NDIA will continue to work collectively to improve access to community services.
Respite for carers can be included in an NDIS plan, but for Steele there are no opportunities to access respite in Maningrida, and the NDIA has cut the funding that allowed she and her son to access respite care in Darwin.
She says she asks herself: “How can I help myself to help him?”
Southwood says she has seen the NDIS give many participants a new lease on life, especially for those who saw the scheme introduced as adults.
It adds to the frustration, she says, knowing how well the scheme can work given the right circumstances.
“When the NDIS works, it’s amazing.”