The plight of older Australians with motor neurone disease (MND) is a stark reminder of the challenges faced by those with severe disabilities in the aged care system. Glenn Rowan, diagnosed with MND at 71, faces a grim reality: either he bleeds his savings to fund his 24/7 care or he considers premature euthanasia. This situation highlights the systemic issues within the aged care system, which is ill-equipped to handle severe disabilities like MND.
Rowan's experience is not unique. Many Australians diagnosed with MND after turning 65 are ineligible for the National Disability Insurance Scheme (NDIS) and are instead supported through the aged care system. This system, designed for aging, offers a fraction of the funding needed for severe disabilities. The highest Support at Home package at Level 8 provides up to $78,200, a far cry from the $300,000 or more available to those on the NDIS.
The recent death of AFL star Neale Daniher, who fought MND until his passing at 65, brought national attention to this issue. The government's response, however, has been slow. While they announced urgent priority access to funding under the Support at Home program for people over 65 diagnosed with MND, it falls short. The automated assessment tool, designed to determine funding levels, often categorizes people with MND at lower levels, providing insufficient support.
The lack of price caps regulating the cost of at-home care services further exacerbates the problem. MND Australia's chief executive, Clare Sullivan, warns of the financial strain on families, stating that the funding support is often insufficient. Independent Senator David Pocock agrees, emphasizing the injustice of leaving those with debilitating diseases to financial ruin.
The median age for MND symptoms is 64, with half of patients qualifying for the NDIS and the other half not. This disparity in funding becomes even more stark when individuals turn 65. Professor Dominic Rowe highlights the inadequacy of the aged care system, which is designed for Alzheimer's patients and cannot accommodate severe physical disabilities like MND.
The government's response, while acknowledging the distinction between the NDIS and the Support at Home program, fails to address the core issue. Rowan's request for voluntary assisted dying has been accepted, but the underlying problem persists. The aged care system's inability to provide adequate support for those with MND raises questions about the cost-effectiveness of current policies and the need for a more comprehensive approach to disability care.
