Palliative Care Australia says the scheme is failing people living with disabilities linked to life-threatening conditions.
On the eve of the deadline for the independent review panel investigating the NDIS to provide its report to the federal government, Palliative Care Australia has taken aim at the scheme over claims of a breakdown between the scheme and Aussies needing at-home palliative care services.
PCA chief executive officer Camilla Rowland said people living with disabilities linked to life-limiting conditions were experiencing reduced access to services that help them stay at home and remain independent.
She was responding to a weekend ABC report which highlighted the “breakdown in how palliative care services and the NDIS are integrated, which means vulnerable people are going without critical services”.
“In some cases, these are the kinds of services that can keep people out of hospital and allow people to remain in their own home, with loved ones, for as long as possible,” she said.
“Services like personal care, food and diet, respite, transport, domestic assistance, and social supports.”
Ms Rowland said that in recent months many Australians with life-limiting illnesses, carers, support workers, advocates and health providers had shared stories of their challenges with the NDIS, which appeared to reflect a growing problem.
Issues raised include:
- Widespread confusion about which services and systems are responsible for the provision of disability and other supports for people with life-limiting conditions;
- Limited options for people under 65 years of age diagnosed with life-limiting conditions who need support with daily living and other essential services, but who cannot access these from the NDIS or any other system;
- Inconsistencies in how the NDIS makes decisions about who can access the scheme, where the NDIS believes someone has 12 months or less to live;
- Inconsistencies in what services NDIS participants with a life-limiting illness can purchase with NDIS funds, once the NDIS becomes aware their life expectancy is limited.
“PCA is aware that many people with disabilities continue to face significant barriers to their right to funded support as their conditions progress,” said Ms Rowland.
PCA has already made several recommendations to the Independent NDIS Review, chaired by Professor Bruce Bonyhady AM and Lisa Paul AO PSM. According to the review’s terms of reference, “A final report is to be provided by the Independent Review Panel to Disability Reform Ministers by October 2023”.
So far there have been no announcements from NDIS Minister Bill Shorten about the review’s findings and recommendations, and no timeline has been provided about how long it will take once the report is tabled in Parliament for it to be publicly released.
“PCA is encouraging the independent review panel to explore opportunities to work with all parts of government to ensure that people with life-limiting conditions get the kinds of supports they need in the last chapter of life,” said Ms Rowland.
“PCA has provided detailed advice to government around addressing these challenges as quickly as possible, while also considering long-term solutions arising from the Independent NDIS Review panel.”
