Palliative Care Australia (PCA) has warned that proposed amendments to the National Disability Insurance Scheme (NDIS) Act risk leaving people with life-limiting illness without access to essential care and support.
In a submission to the Senate Committee Inquiry into the amendments to the NDIS legislation, PCA raised serious concerns that the Bill, as currently drafted, presents an unacceptable risk to the safe and dignified care of people whose support needs arise from a life-limiting condition.
PCA said the legislation acknowledges that people may face barriers to appropriate treatment because of where they live or because they cannot afford direct or out-of-pocket healthcare costs. However, the Bill also states that it is not the role of the NDIS to fill gaps in affordable and accessible health services.
PCA National Policy Director Josh Fear said this creates a dangerous gap for vulnerable Australians.
“Under this approach, people with life-limiting or terminal illness could find themselves locked out of both systems,” Mr Fear said.
“The Bill effectively accepts that some people may be unable to access appropriate healthcare because of cost or geography, while also excluding them from accessing functional supports through the NDIS.
“That is not an adequate safeguard for people with complex and highly vulnerable care needs.”
Mr Fear said the proposed changes fail to recognise the reality faced by many Australians living with serious illness, particularly in rural, regional and remote communities where access to specialist health and palliative care services is already limited.
“People approaching the end of life should not be left navigating gaps between systems while trying to manage serious illness, disability and distress,” Mr Fear said.
“We are calling on the Senate Committee and the Australian Government to ensure the legislation protects equitable access to both healthcare and disability supports for people with life-limiting conditions.”
PCA’s submission urges the Committee to consider safeguards to ensure people with permanent and significant disabilities arising from a terminal diagnosis are not left without essential supports.
PCA’s submission raises concerns regarding:
· Unreasonably precluding entry to the NDIS for people with life-limiting conditions who are undergoing treatment, or struggling to access treatment.
· Reducing the already-constrained capacity of the NDIS to respond flexibly and swiftly to fluctuating functional capacity and to rapid functional decline.
· Delayed decision-making timeframes that are unsuitable for people with short-life expectancies, including a proposed 90-day timeframe for decisions about unscheduled plan reassessments.
· Decreased NDIS capacity to intervene early to meet the functional support needs of people with progressive terminal conditions before they reach crisis point.
· Further fragmenting the care and supports offered to people with life-limiting conditions by the health system, the NDIS and other service systems.
PCA’s submission also encourages the Senate Committee to consider options to ensure the functional support needs of people under 65 with life-limiting conditions are prioritised in the disability reform process, with the aim of resolving the current service gap for those not eligible for NDIS supports.
Palliative Care Australia is the national peak body for palliative care.