The proposed overhaul of the National Disability Insurance Scheme (NDIS) has sparked concern among advocates and families, who fear that the changes could push exhausted families further into crisis and increase their interactions with child protection services. The Albanese government's plan to make the $50 billion NDIS more sustainable by removing or preventing around 300,000 people from accessing the scheme over the next four years has raised red flags. This move could save over $38 billion, but at what cost?
One of the most controversial changes is the definition of 'substantial care and support' for children with disabilities. The bill states that parents are responsible for providing this care, which includes supervision, personal care, behavioral support, and other assistance that a parent of a similar-aged child would reasonably be expected to provide. This shift could put an immense burden on families, especially those with children who require around-the-clock care, like Deanne Burrows' son Brodie, who has complex conditions including intellectual disability and autism.
Ms. Burrows, a Victorian mother, feels like a walking, talking therapist as she has to train support staff and provide care for her son. She worries that the new changes could strip away the help she needs, leaving her and other families at risk of burnout and increased vulnerability. This is a valid concern, as the explanatory notes accompanying the bill state that families and informal supports should not be expected to deliver care if it risks an injury occurring. However, the reality for many families is that they are already at breaking point, and the new changes could push them over the edge.
The proposed overhaul also includes handing the NDIS minister sweeping new powers and enabling automated decision-making. This has raised concerns among participants like Luke Nelson, who lives with cerebral palsy. He fears that the cuts to social and community participation budgets and capacity-building supports could prevent him from living an ordinary life and deprive people of their human rights. The Grattan Institute estimates that a third of the government's projected savings will come from these cuts, which could have a significant impact on participants' lives.
The Senate inquiry has received over 4,000 written submissions and is holding public hearings. However, the government wants the changes passed as soon as possible, facing opposition from the Coalition and Greens. The Coalition's Melissa McIntosh argues that the government needs to provide more detail, while the Greens' Jordon Steele-John calls for the bill to be withdrawn. The inquiry will report by June 16, but the future of the NDIS and the lives of its participants hang in the balance.
In my opinion, the proposed changes to the NDIS are a step in the wrong direction. While sustainability is important, the government must consider the human cost of these cuts. The NDIS was designed to support people with disabilities to live ordinary lives, and these changes could undermine that goal. The government should pause and engage in meaningful co-design with the disability community to ensure that the scheme remains accessible and supportive for all participants.
