The National Disability Insurance Scheme is making headlines again as contentious legislation paving the way for a major overhaul of the NDIS passes parliament. The government plans to change the way the program is run to curb ballooning costs, but the proposal is causing some alarm in the community, particularly in regional and remote areas.
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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.