Rebekha Sharkie (Mayo, Centre Alliance) Share this | Link to this | Hansard source

Among the principles which guide the NDIA in all their functions is the unequivocal statement that 'people with disability have the same right as other members of Australian society to respect for their worth and dignity and to live free from abuse, neglect and exploitation'.

Ms Ann Marie Smith died after being deposited in a cane chair in her living room, where she remained for well over a year. She sat in that chair for 24 hours a day, and it served as both her toilet and her bed. The South Australian community, if not the Australian community, is outraged—and rightly so. We are heartbroken, and we want to know why. Ann Marie Smith had been an NDIS participant since 2018. In April this year she died. But it was not her disability that ended her life; she died from severe septic shock, multiple organ failure, severe pressure sores, malnutrition and issues connected with her cerebral palsy. Ms Smith's death was not the inevitable consequence of her disability. Her death was entirely preventable. Her death shows that, when the work of a person with a disability is reduced to a dollar figure on a provider's balance sheet, to be reconciled by the regulator, the system fails.

The NDIS Quality Safeguards Commission has the regulatory and safeguarding oversight of all NDIS participants. The commission purports to work with NDIS participants, service providers and workers in the community, so participants can access services and supports that promote choice, control and dignity. Left to wither in her cane chair, Ms Smith was denied that choice; she was denied control; and she was denied the dignity that she rightly deserved.

There is a fundamental flaw in the legislative framework if the welfare of vulnerable and isolated participants is only questioned when a complaint is made. The Commission must adopt a proactive participant focused approach to its compliance activities, and we need to ensure that vulnerable participants are identified and assigned an advocate at the earliest possible opportunity. If that means additional funding for both individual and systemic advocacy organisations, then that is a small price for the government, for our community, to pay. Ms Smith would not have died if she had been assigned an advocate to fight for her rights.

How can it be that this did not raise any flags with anyone involved in the administration of her care? Reportedly, she received six hours of care every day from the same carer for a period of six years—the same carer for six years; nobody else! How could Integrity Care, the provider on record, believe that one carer would be capable of attending to all of Ms Smith's needs, 24 hours a day, 365 days a year for six years? Did anyone from the NDIA or the commission ever attend Ms Smith's home to check on her welfare during the last six years? What checks were done on the carer? My colleague in the other place, Senator Griff, has called for the production of documents that may answer these questions, and I look forward to the minister's response in due course.

I urge the government to also consider the experiences of those who sit outside of the NDIS. There are approximately 4.3 million people in Australia living with a disability but only around 450,000 people will access the NDIS. Last year the Productivity Commission conducted a review of the National Disability Agreement, 2010 to 2020, a document that frames the shared responsibilities for state and federal governments in this sector. The commission found the NDIA no longer served its purpose, with little progress towards performance targets and a new agreement was needed to promote cooperation, accountability and to clarify the roles and responsibilities of state and federal governments when it comes to disability services. The National Disability Agreement is due to expire this year. Ann Marie Smith should be front of mind when the government begins work on the next 10-year plan for disability services in Australia.

Ann Marie, I am so so sorry that you were let down like this. We cannot allow this to happen again.