John Price and Kelly Oriel have been living together in their own home on the mid-north coast of New South Wales for 31 years. Oriel’s National Disability Insurance Scheme funding was recently reevaluated. As a result, the couple may have to live separately for the first time.
Oriel has motor neuron disease and has used a wheelchair for over 20 years. MND describes a category of diseases in which the nerve cells (neurons) that control muscles degenerate and die. Motor neuron disease subtypes include Amyotrophic Lateral Sclerosis (ALS), Progressive Muscular Atrophy (PMA), Progressive Bulbar Palsy (PBP), and Primary Lateral Sclerosis (PLS).
Without warning, Oriel’s funding arrangement was modified last year, resulting in her living in Specialist Disability Accommodation (SDA) with two other individuals without Price. The couple is appealing the decision in the Administrative Appeals Tribunal, and Oriel has remained at home with Price’s support.
The funding modification was based on an NDIS questionnaire obtained through a freedom of information request. The couple had never seen or filled out this questionnaire.
It was wrongly reported that they did not own their home, that it had not been adapted sufficiently to meet Oriel’s needs, and that she did not have a severe functional impairment.
Last month, the national cabinet revealed plans to limit the NDIS’s development, saving $57 billion over a decade by scrutinizing invoiced payments and services supplied by disability enterprises. The NDIS assists more than 573,000 people.
Funding amounts are regularly adjusted. According to the most recent NDIA quarterly report, plans for participants were more likely to increase than decrease. Between July and December 2022, 52% of participants received funding increases of more than 5%, while 19% had their plans reduced by more than 5%. This has raised questions about how plans are now funded and how reliant the scheme is on automated processes.
NDIS Minister Bill Shorten, in a National Press Club address last month, flagged his support for “ethical automation,” saying the public sector was not using data enough.
“There should be an ethical use of AI [artificial intelligence]. My view is it should be wherever possible open-sourced, so people can see what’s going on,” he said.
However, whereas robo-debt used an entirely automated system to target debt, the NDIA has confirmed that it uses data fed into its customer relationship management system to generate a typical support package, which is then manually adjusted by NDIS planners following conversations with the person with disabilities to form an individual package.
Australian law does not mandate that government public service algorithms be available to the general public. According to a study by the Australian Human Rights Commission in 2021, the government should establish a multidisciplinary task force on AI-informed decision-making. The government has yet to respond to the report.
Mark Toomey is among a group of disability advocates advocating for a Royal Commission to look into NDIS funding. Toomey’s son Geoff has experienced intellectual and physical disabilities following a brain hemorrhage. Toomey has fought for his son to receive more funding for years.
Unfortunately, Oriel has had issues with NDIS funding before. In 2017, she requested funding to fix her home’s wheelchair lift. The funding was delayed.
In 2020, the cable on the lift broke while Oriel was using it. Oriel broke multiple bones in her leg, pelvis, and ribs. Price fractured his ribs and vertebrae and sustained a large wound to his side.
Oriel spent nine months in the hospital. After that, she lived somewhere else until the lift was repaired. Tragically, she recently had a stroke which she believes was exacerbated by stress.
Lorraine Findlay, Human Rights Commissioner, says data is critical in determining funding and sustainability for the NDIS. However, she is unsure about using AI-produced algorithms to determine these figures. Findlay argues that AI “undermines” person-centered practices.
Disabled people deserve to live at home with their families. There should be enough funding so disabled Australians can thrive in their communities. Losing NDIS funding means that people face devastating consequences, and people’s lives are at stake.
Schultz, Amber. “‘Kelly Wants to Live at Home’: After 31 Years, This Couple Is Fighting Being Forced Apart.” The Sydney Morning Herald, Nine Entertainment Co., 14 May 2023, http://www.smh.com.au/national/kelly-wants-to-live-at-home-after-31-years-this-couple-is-fighting-being-forced-apart-20230426-p5d3ir.html.
“What Is ALS/MND?” International Alliance of ALS/MND Associations, http://www.als-mnd.org/what-is-alsmnd/.