00:00It's a bond forged by unspeakable grief.
00:11When she was 18, Christina Parkos's life changed completely after a traumatic brain
00:17injury.
00:18This quilt she made as a teen is a canvas of her old life.
00:26The now 30-year-old is non-verbal and relies on subtle movements to communicate.
00:31The quilt has triggered joyful memories of her youth.
00:37But revisiting her journey over the last 12 years has brought up the pain she still carries.
00:42Do you want the girls to put you in the car?
00:45For five years, Helen Parkos shouldered the load of Christina's care.
00:49It was emotionally draining but it was also physically very difficult.
00:56The family look after Christina with the help of two full-time carers and a team of specialists,
01:02thanks to the NDIS.
01:05The support has helped her eat, drink, stand and wean off antidepressants.
01:10She came on in leaps and bounds.
01:16Last year, Helen received a letter advising Christina's carer support would be cut in
01:21half.
01:22It modified the bathroom.
01:23Helen was able to thwart it but she found herself lost in the system.
01:28People said you can appeal but we didn't know who to appeal to.
01:32We were dealing with people down south on the phone that didn't even know Christina.
01:38Managing life with a disability against the stress of funding is being felt across the
01:42Northern Territory.
01:45Across the northern tropical waters to the remote Tiwi Islands, the juggle is intense.
01:52It's just past 7am in Worimiyunga and local support worker Wayne Palakwi is doing his
01:58round.
02:02He's taking Edmund Johnson to the community's NDIS hub.
02:06Run by Catholic Care NT, the centre offers a space where participants can connect.
02:12This helped Edmund with his mental health.
02:14I was at home and stay in the house, room, I block the window, make it dark in the room.
02:29Even when they're a bit stressed and we take them out out bush or country and go out the
02:37other side of Melbourne and other communities, Pearlie and Millie and see other families.
02:44The hub is the only one of its kind operating in the NT's remote Aboriginal communities.
02:50Without us here, they're supported by fly in fly out providers, they're not getting
02:56that day to day.
02:57It's in remote parts of the country like here on the Tiwi Islands that the NDIS faces its
03:03greatest challenge.
03:04Up against distance and extra costs many service providers are running into massive losses.
03:11Competition between providers is also rife with concerns some are taking advantage of
03:16the community's most vulnerable people.
03:20A parliamentary committee overseeing the NDIS that visited Darwin in April heard examples
03:25of bribery and rorting by unscrupulous providers.
03:29It can go from money that gets paid on going if you sign up to them.
03:36It can also be times that it's cigarettes or a mobile phone or $50 at sign up.
03:45Across all its NDIS services, Catholic Care racked up a loss of almost half a million
03:50dollars last year and the future of the hub is rocky.
03:54Unless we've got other funding it's practically impossible.
04:00It's a mind game felt back in Darwin where Helen's running out of steam to keep up the
04:05fight.
04:06She's worried about Christina's future.
04:08I'm still very mindful that that could just cease, be cut at any given time and then what?
04:16And then what?
04:18And then what happens if we're not around?
04:21A sentiment felt across the jurisdiction buckling under a growing need.
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