Regional Australians with Disabilities Face NDIS Funding Shortfalls
Grace, a woman in her 60s living with legal blindness in regional Victoria, recently experienced a fall that highlighted the precariousness of her situation. As she stumbled, her hand struck a cupboard, tearing skin from the back of her hand. While someone with full vision might have managed such an injury independently, Grace’s visual impairment presented significant challenges.
Grace fell yesterday.
As she fell, she hit her hand on a cupboard and tore skin off the back of her hand.
Someone with sight could probably manage that kind of injury alone.
But Grace is legally blind.
Fortunately, a carer was en route to Grace’s home, located about a 30-minute drive from the nearest major centre. This meant assistance was only about 10 minutes away. However, Grace recounted a previous fall where she faced a potential three-hour wait for an ambulance. This starkly illustrates the risks faced by individuals in remote areas who rely on timely support services.
Grace’s current care arrangement sees carers visiting only three days a week, a schedule dictated by her National Disability Insurance Scheme (NDIS) funding. This falls short of the daily care recommended by her occupational therapist, impacting her ability to perform basic tasks like showering safely, which she can only manage thrice weekly.
The NDIS funding allocated to Grace is insufficient to meet her needs. A significant portion, approximately half, is consumed by additional costs associated with her rural location. This financial strain has left Grace feeling “fed up” and determined to advocate for change. She believes her situation is not unique and calls on the government to rectify the NDIS for all vulnerable individuals residing in remote areas.
A Life Altered by Vision Loss
Grace’s journey with vision loss began 34 years ago when she was diagnosed with retinitis pigmentosa, a group of inherited eye disorders that progressively impair retinal cells, leading to vision loss. The onset of the condition can vary from gradual to rapid. For Grace, it was a sudden and profound change.
“I had a four-month-and-four-day-old baby when I went blind. I had four other children,” Grace shared. Her two eldest children, teenagers at the time, stepped in to help their mother navigate this new reality. However, during school hours, Grace was left to care for her younger children while blind, a task she described as being managed “with great difficulty.” The loss of her sight meant the loss of her previous life. “I had a life, I had two friggen jobs, I had five kids, I had everything, now I’ve got nothing,” she lamented, the pain still evident.
Funding Concerns: “Not Value for Money”
Grace commenced receiving NDIS support in 2023. While her most recent NDIS plan saw a slight increase in funding, her care provider notes that escalating service costs mean the plan no longer covers what it once did.
Grace’s support coordinator, who remains anonymous at the request of the ABC, highlighted how living in a rural area significantly impacts the availability and cost of essential services. This is particularly true due to provider travel requirements.
“From an NDIS perspective, they’re not taking into consideration Grace’s remote location and the fact that providers travel to and from her home to provide care support,” the support coordinator explained. “Fifty per cent of Grace’s budget is chewed up [by] providers’ travel costs.”
Despite multiple attempts to secure an increase in Grace’s NDIS budget, including obtaining necessary health assessments from her medical team at the NDIS’s request, the funding remains inadequate. The cost of these additional assessments is also deducted from Grace’s allocated funding.
“We are always told that there’s not enough evidence supplied, [and] they need different reports. We go ahead and get those reports and there’s still not enough evidence,” the support coordinator stated. “They just say that they don’t think it’s value for money for Grace to have certain supports and they don’t believe it’s ‘reasonable and necessary’.” Such responses leave Grace feeling like a “scumbag.”
A Call for Regional Loading in NDIS Funding
Ben Foley, executive officer of the Regional Disability Advocacy Service, an organisation offering free and independent advocacy for people with disabilities, echoed these concerns. He stated that NDIS participants in regional and remote areas encounter “far greater” obstacles in accessing the services crucial for their quality of life.
Mr. Foley pointed out that the specialised medical assessments often required for NDIS plan approval or increases are not always accessible in rural and regional locations. This can necessitate travel to metropolitan centres, incurring significant additional costs for accommodation and transport, all of which are deducted from the participant’s plan.
“If that’s not being increased, their plan funding has been sufficiently reduced,” he noted. Mr. Foley argues that individuals with disabilities should not be forced to relocate from their homes and communities to access necessary care. He advocates for the NDIS to implement a “regional loading” for participants in these areas, providing increased funding to offset provider travel expenses.
“People choose to live where they live for a range of reasons, not just because of where providers are,” Mr. Foley emphasised. He warned that the unintended consequences of relocation, such as losing social connections and family ties, would have broader negative ramifications for individuals.
Government’s Position on Rural NDIS Support
A spokesperson for the National Disability Insurance Agency (NDIA), the body responsible for administering the NDIS, affirmed the agency’s commitment to ensuring participants receive necessary disability-related supports, irrespective of their location.
The NDIA noted that price limits for providers in remote locations are 40 per cent higher than standard rates, and 50 per cent higher in very remote areas. “The NDIS recognises the higher cost of providing services in rural and remote Australia,” the spokesperson stated.
The agency indicated that planners take into account the impact of higher prices and limited markets when determining overall funding amounts and assessing the reasonableness and necessity of additional funding for travel or access. While the NDIA considers all recommendations from health professionals, these recommendations must also align with the NDIS Act’s “reasonable and necessary” criteria.
Grace, however, remains focused on her core request: that people with disabilities in regional areas receive the support they are entitled to. “I want the system to be fair, to help the people that need it, and put the funding where it’s needed,” she said. “I don’t have a self-inflicted disease; I was given a punishment that I never asked for. It kills me, it absolutely kills me.”
