00:00 Anne-Marie Carmody has brain cancer.
00:08 She acquired a brain injury from surgery and chemotherapy.
00:12 Sometimes I think people are supportive of me being here anyway, so I'm just a burden.
00:18 Son Sam Carmody has put his life on hold to care for her.
00:23 Constant fatigue.
00:24 I've been doing it since November last year.
00:29 Anne-Marie's application to the NDIS for things like a support worker, a physio and adjustable
00:35 bed was rejected.
00:38 The nurse of 40 years was told her needs were best met by the palliative care system, which
00:44 is funded by the states.
00:45 I just have to continue to rely on my family and friends.
00:54 On the other side of the country, Rebecca Harvey spent months trying to access the NDIS
01:00 to bring her husband Glen Downs home.
01:03 The father and oncology nurse needs a carer and equipment to be discharged.
01:09 His application for support was rejected because he was deemed palliative.
01:14 It's really hard on our son.
01:15 I want Glen to come home so that he can spend time in a home environment with our child.
01:21 Five months later, the NDIS agrees it got it wrong and has apologised.
01:26 Rebecca will get funding to bring Glen home, but she's angry about the time he's lost.
01:32 The long and the short of it is he needs support and we shouldn't have to run around trying
01:37 to find where to get that support.
01:40 We're hearing that there's a wave of people coming forward in the last few months who
01:44 are experiencing increased barriers to getting into the NDIS.
01:50 But disability support services aren't readily available outside the NDIS.
01:56 Before the NDIS existed, there was a range of programs that were funded by state governments
02:01 and the federal government to provide this kind of support.
02:04 But the money for all those programs was swallowed up by the NDIS.
02:09 The Queensland Health Minister says that state has seen a change in NDIS decision making,
02:14 which has left many people, their families and carers without the necessary support.
02:21 The Tasmanian Health Department says it's aware of instances where terminally ill patients
02:26 are being advised by the NDIS they should seek palliative care.
02:31 The NDIS Act itself actually states that people will be supported for their lifetime.
02:37 Their own organisational guidelines state that it doesn't matter how you come to your
02:42 disability, whether you're born with it, whether you acquire it or whether it's from
02:45 a health condition.
02:46 We'll make sure they put the application in again.
02:49 Academic Cathy Boatian says the rules around how the state systems and NDIS services intersect
02:55 are unclear.
02:57 Very much open to interpretation unfortunately.
03:01 It would be really great if we could have some sort of framework and clarity.
03:05 The NDIA insists there has been no change to decision making for people dealing with
03:10 life limiting illnesses.
03:12 It says the NDIS was designed to complement, not replace mainstream services and that palliative
03:19 care is the responsibility of state and territory health systems.
03:24 The NDIA also told the ABC it is concerned by distressing gaps emerging in support for
03:30 those deemed palliative.
03:32 It's also seeing an increase in numbers of people applying to the NDIS whose primary
03:37 need is palliative support and the number of people accessing the scheme with terminal
03:42 illness as their primary disability has doubled in recent months.
03:47 We don't have time on our side when people have life limiting conditions so we really
03:51 need to be able to support people functionally in their home and if it's not the NDIS then
03:57 we need to find something that sits in that gap.
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