NDIS Children: The areas where one in 10 tweens are on the NDIS
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The trend underscores the equity issues at stake as the federal and state governments seek to move children off the scheme and onto an as-yet undesigned 'foundational supports' system in the long term, with the NDIS serving as a lifeline in areas without other services.
NDIS participation rates in lower socio-economic regional areas are as much as double those in wealthy city areas.
In NSW, North Sydney has one of the lowest participation rates for children, with 3.5 per cent of both nine to 14-year-olds and under-eights, whereas on the NSW Mid North Coast, those rates are 10.1 per cent for older children and 9.7 per cent for younger children.
In Melbourne's inner east, 4.6 per cent of under-eights and 4.8 per cent of older children are on the scheme. This is a far lower participation rate than at Loddon, near Bendigo, where 8.7 per cent of young children and 10.5 per cent of older children are participants.
The highest participation rates in March 2025 were in northern Adelaide and South Australia's Barossa Valley, where more than 11 per cent of 9 to 14-year-old children are NDIS participants, as are more than 8 per cent of children under nine years old.
But even in inner-city areas, where families have more access to services, children's participation rates increased in the two years to March 2025.
The exception is in the Northern Territory – a sign of continued challenges in accessing the NDIS in more remote areas.
Laverty, who is now chief executive of disability service Aruma, said the higher uptake among regional families was no surprise as they can struggle to get help for learning delays at school, or access services such as speech therapy in the private system. Once eligible, children can linger on waitlists for months.
'Aruma has waiting lists of families seeking support that miss out because of allied health shortages in country Australia,' Laverty said, noting this was exacerbated by the lack of state and territory services outside the NDIS.
Laverty said wait times meant the window for early intervention could often close before a child got the help they needed.
'That delay is resulting in children missing out on the intervention that may prevent them ever needing an NDIS package in the long term,' he said.
While the 2023 independent NDIS review recommended children younger than nine enter the scheme under early intervention pathways, to reduce the need for supports over their lifetime, a NDIA spokesperson said most children entered the scheme under developmental delay provisions.
'Over half of the children with developmental delay continue in the scheme after being diagnosed with autism spectrum disorder,' they said.
In December, the federal government announced $4.5 million over two years for the NDIA to design and consult on an early intervention pathway to better support children younger than nine with developmental delay or disability.
with Millie Muroi
Cut through the noise of federal politics with news, views and expert analysis from Jacqueline Maley. Subscribers can sign up to our weekly Inside Politics newsletter here.
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ABC News
4 days ago
- ABC News
While 9yo Zarli took her first steps at therapy her NDIS funding was cut
Rinnie Skopp watched on in awe as her daughter Zarli, aged nine, took her first steps earlier this year at a specialist children's therapy service in Brisbane. Each wobbly step felt momentous for Ms Skopp, but her jubilation was cut short. After arriving back at home in Calliope in central Queensland, she learned her daughter's funding for the service had been cut by the National Disability Insurance Agency (NDIA). "It's disheartening because Zarli's goals are going to be slowly reached if we don't give her as much as possible now." Zarli was born with CHOPS syndrome, a rare genetic disease which affects multiple parts of the body and can delay skills like walking. Ms Skopp said Zarli took her first steps at Brisbane's NAPA Centre in April this year during a three-week-long therapy block which focused on building her core strength. Ms Skopp said her daughter's physiotherapy, occupational therapy and speech pathology funding under the NDIS had almost halved from $59,782 to $30,366 since her plan was reviewed in April. Her total NDIS plan of $194,000 per year was reduced to $179,000, and included 233 hours of allied health and behaviour supports annually. The NDIA, which operates the NDIS, said its top priority was ensuring participants could access the disability support they needed. "As a child's needs change, plans will change — especially as children start to access other community supports such as early childhood education or school." It said funding was provided based on individual needs rather than funding providers or programs. A review of Zarli's funding was requested by her family, and is in progress. NAPA (Neurological and Physical Abilitation) Centres help families with complex disabilities access multidisciplinary care. Australian director of client services Louise Conn said she believed it was one of the few clinics in the country which had experience working with a child with CHOPS syndrome. She was devastated to learn Zarli's funding had been cut. Ms Conn said she would like the NDIS to look closer at internal cost savings rather than savings from developing children. "We do have deep concerns that the cuts that they are making seem to not be very well focused," she said. "Nine-year-old children who are learning to walk are becoming the victims of a very, very, strange big budget shift." Ms Conn said the centres had noticed — irrespective of diagnosis, age or location — funding was being significantly cut across the board. "Allied health professionals provide a lot of complex reports … and these seem to be getting ignored more and more, and the recommendations ignored, which is really, deeply concerning," Ms Conn said. Ms Skopp said it was the second time her daughter's NAPA Centre funding had been cut. "It's stressful, especially when you feel like you're providing all the evidence they require," she said. Ms Skopp said her daughter had regressed since taking her first steps, but was confidently using her walker. She said Zarli was at an exciting, sponge-like stage of life. "She has become very playful, the eye contact and the communication. "She's just succeeding in so much and this is really where we need to throw as much as we can at her."
The Advertiser
4 days ago
- The Advertiser
Donna and her daughter are homeless, sharing a bed in a bus without power
Marcia Goody has a lot of empathy, her mum says, but is not being shown the same in return. Donna Wall has been her 33-year-old daughter's full-time carer for the past 12 months, and since March, the pair have been homeless, but it's not for lack of trying. Ms Wall from Penguin in north-west Tasmania said she had applied for about 100 rentals, is on the waitlist for social housing, has engaged with Housing Connect, and has exhausted all other appropriate avenues. "We did not realise how difficult it would be to get another house," she said of the decision to move out of her previous home, which was no longer suitable. "Probably in hindsight, I don't know if we would have ended the lease, knowing what I know now." Since then, the dermal therapist has moved between caravan parks, a bed and breakfast, short-term accommodation organised by a church, and has house-sat for friends. For the past month, she and her daughter have been based on the grounds of a church, living in a bus with limited access to facilities, and currently without power. Ms Wall said their situation was made all the more complicated by her daughter's complex health needs and hospital admissions. Ms Goody, an NDIS participant, has been diagnosed with depression, dissociative identity disorder, post-traumatic stress disorder, endometriosis, and type 2 diabetes. Growing up, Ms Wall said her daughter craved stability, and moving house or school did not have a good impact on her, which remains the case today. "It's hard because it's more to do with my daughter and her needs above what I'm going through," she said. "After all the trauma that she's been through... and the fact it's been such a long time that we've had to wait... it's pretty abysmal basically." Up until last month, Ms Wall relied on public transport to get to and from work and to attend house inspections, which she said was "a nightmare". When they purchased a car, Ms Goody decided to sleep in it for about a week before the cold became too much and she moved into the bus with her mum, where they share a bed each night. Although unable to comment on specific applications, Homes Tasmania CEO Eleri Morgan-Thomas said there were many Tasmanians turning to social housing. "Homes Tasmania is committed to prioritising housing fairly, ensuring that people in greatest need receive housing offers first," she said. Ms Wall disagreed and said she believed her daughter's complex mental health needs should make them a priority. Without appropriate housing, Ms Wall was told by a social worker that the likelihood of her daughter's physical and mental health declining was high. "We need something now, not a month... we've waited long enough," she said. Stable housing would also put Ms Wall "back on track" and allow the dermal therapist to return to work and complete her associate degree in health and wellness, which she is undertaking part-time. In response to questions, Housing Minister Felix Ellis said the government was "working tirelessly" to address the needs of the thousands of people on the housing register. Ms Wall said she had contacted Mr Ellis three times and was told each time that her letter was forwarded to Homes Tasmania. "Our hearts go out to Ms Wall and her daughter, Ms Goody, and to all Tasmanians experiencing homelessness," Mr Ellis said. Ms Wall said she blamed the housing crisis on the government's "mismanagement". "I would also say to the government, stop using vulnerable people's suffering as a political talking point," she said. "They need to actually come and meet with the people, walk a day in our shoes, for goodness' sake." If you or someone you know has been affected by this story, please contact: Marcia Goody has a lot of empathy, her mum says, but is not being shown the same in return. Donna Wall has been her 33-year-old daughter's full-time carer for the past 12 months, and since March, the pair have been homeless, but it's not for lack of trying. Ms Wall from Penguin in north-west Tasmania said she had applied for about 100 rentals, is on the waitlist for social housing, has engaged with Housing Connect, and has exhausted all other appropriate avenues. "We did not realise how difficult it would be to get another house," she said of the decision to move out of her previous home, which was no longer suitable. "Probably in hindsight, I don't know if we would have ended the lease, knowing what I know now." Since then, the dermal therapist has moved between caravan parks, a bed and breakfast, short-term accommodation organised by a church, and has house-sat for friends. For the past month, she and her daughter have been based on the grounds of a church, living in a bus with limited access to facilities, and currently without power. Ms Wall said their situation was made all the more complicated by her daughter's complex health needs and hospital admissions. Ms Goody, an NDIS participant, has been diagnosed with depression, dissociative identity disorder, post-traumatic stress disorder, endometriosis, and type 2 diabetes. Growing up, Ms Wall said her daughter craved stability, and moving house or school did not have a good impact on her, which remains the case today. "It's hard because it's more to do with my daughter and her needs above what I'm going through," she said. "After all the trauma that she's been through... and the fact it's been such a long time that we've had to wait... it's pretty abysmal basically." Up until last month, Ms Wall relied on public transport to get to and from work and to attend house inspections, which she said was "a nightmare". When they purchased a car, Ms Goody decided to sleep in it for about a week before the cold became too much and she moved into the bus with her mum, where they share a bed each night. Although unable to comment on specific applications, Homes Tasmania CEO Eleri Morgan-Thomas said there were many Tasmanians turning to social housing. "Homes Tasmania is committed to prioritising housing fairly, ensuring that people in greatest need receive housing offers first," she said. Ms Wall disagreed and said she believed her daughter's complex mental health needs should make them a priority. Without appropriate housing, Ms Wall was told by a social worker that the likelihood of her daughter's physical and mental health declining was high. "We need something now, not a month... we've waited long enough," she said. Stable housing would also put Ms Wall "back on track" and allow the dermal therapist to return to work and complete her associate degree in health and wellness, which she is undertaking part-time. In response to questions, Housing Minister Felix Ellis said the government was "working tirelessly" to address the needs of the thousands of people on the housing register. Ms Wall said she had contacted Mr Ellis three times and was told each time that her letter was forwarded to Homes Tasmania. "Our hearts go out to Ms Wall and her daughter, Ms Goody, and to all Tasmanians experiencing homelessness," Mr Ellis said. Ms Wall said she blamed the housing crisis on the government's "mismanagement". "I would also say to the government, stop using vulnerable people's suffering as a political talking point," she said. "They need to actually come and meet with the people, walk a day in our shoes, for goodness' sake." If you or someone you know has been affected by this story, please contact: Marcia Goody has a lot of empathy, her mum says, but is not being shown the same in return. Donna Wall has been her 33-year-old daughter's full-time carer for the past 12 months, and since March, the pair have been homeless, but it's not for lack of trying. Ms Wall from Penguin in north-west Tasmania said she had applied for about 100 rentals, is on the waitlist for social housing, has engaged with Housing Connect, and has exhausted all other appropriate avenues. "We did not realise how difficult it would be to get another house," she said of the decision to move out of her previous home, which was no longer suitable. "Probably in hindsight, I don't know if we would have ended the lease, knowing what I know now." Since then, the dermal therapist has moved between caravan parks, a bed and breakfast, short-term accommodation organised by a church, and has house-sat for friends. For the past month, she and her daughter have been based on the grounds of a church, living in a bus with limited access to facilities, and currently without power. Ms Wall said their situation was made all the more complicated by her daughter's complex health needs and hospital admissions. Ms Goody, an NDIS participant, has been diagnosed with depression, dissociative identity disorder, post-traumatic stress disorder, endometriosis, and type 2 diabetes. Growing up, Ms Wall said her daughter craved stability, and moving house or school did not have a good impact on her, which remains the case today. "It's hard because it's more to do with my daughter and her needs above what I'm going through," she said. "After all the trauma that she's been through... and the fact it's been such a long time that we've had to wait... it's pretty abysmal basically." Up until last month, Ms Wall relied on public transport to get to and from work and to attend house inspections, which she said was "a nightmare". When they purchased a car, Ms Goody decided to sleep in it for about a week before the cold became too much and she moved into the bus with her mum, where they share a bed each night. Although unable to comment on specific applications, Homes Tasmania CEO Eleri Morgan-Thomas said there were many Tasmanians turning to social housing. "Homes Tasmania is committed to prioritising housing fairly, ensuring that people in greatest need receive housing offers first," she said. Ms Wall disagreed and said she believed her daughter's complex mental health needs should make them a priority. Without appropriate housing, Ms Wall was told by a social worker that the likelihood of her daughter's physical and mental health declining was high. "We need something now, not a month... we've waited long enough," she said. Stable housing would also put Ms Wall "back on track" and allow the dermal therapist to return to work and complete her associate degree in health and wellness, which she is undertaking part-time. In response to questions, Housing Minister Felix Ellis said the government was "working tirelessly" to address the needs of the thousands of people on the housing register. Ms Wall said she had contacted Mr Ellis three times and was told each time that her letter was forwarded to Homes Tasmania. "Our hearts go out to Ms Wall and her daughter, Ms Goody, and to all Tasmanians experiencing homelessness," Mr Ellis said. Ms Wall said she blamed the housing crisis on the government's "mismanagement". "I would also say to the government, stop using vulnerable people's suffering as a political talking point," she said. "They need to actually come and meet with the people, walk a day in our shoes, for goodness' sake." If you or someone you know has been affected by this story, please contact: Marcia Goody has a lot of empathy, her mum says, but is not being shown the same in return. Donna Wall has been her 33-year-old daughter's full-time carer for the past 12 months, and since March, the pair have been homeless, but it's not for lack of trying. Ms Wall from Penguin in north-west Tasmania said she had applied for about 100 rentals, is on the waitlist for social housing, has engaged with Housing Connect, and has exhausted all other appropriate avenues. "We did not realise how difficult it would be to get another house," she said of the decision to move out of her previous home, which was no longer suitable. "Probably in hindsight, I don't know if we would have ended the lease, knowing what I know now." Since then, the dermal therapist has moved between caravan parks, a bed and breakfast, short-term accommodation organised by a church, and has house-sat for friends. For the past month, she and her daughter have been based on the grounds of a church, living in a bus with limited access to facilities, and currently without power. Ms Wall said their situation was made all the more complicated by her daughter's complex health needs and hospital admissions. Ms Goody, an NDIS participant, has been diagnosed with depression, dissociative identity disorder, post-traumatic stress disorder, endometriosis, and type 2 diabetes. Growing up, Ms Wall said her daughter craved stability, and moving house or school did not have a good impact on her, which remains the case today. "It's hard because it's more to do with my daughter and her needs above what I'm going through," she said. "After all the trauma that she's been through... and the fact it's been such a long time that we've had to wait... it's pretty abysmal basically." Up until last month, Ms Wall relied on public transport to get to and from work and to attend house inspections, which she said was "a nightmare". When they purchased a car, Ms Goody decided to sleep in it for about a week before the cold became too much and she moved into the bus with her mum, where they share a bed each night. Although unable to comment on specific applications, Homes Tasmania CEO Eleri Morgan-Thomas said there were many Tasmanians turning to social housing. "Homes Tasmania is committed to prioritising housing fairly, ensuring that people in greatest need receive housing offers first," she said. Ms Wall disagreed and said she believed her daughter's complex mental health needs should make them a priority. Without appropriate housing, Ms Wall was told by a social worker that the likelihood of her daughter's physical and mental health declining was high. "We need something now, not a month... we've waited long enough," she said. Stable housing would also put Ms Wall "back on track" and allow the dermal therapist to return to work and complete her associate degree in health and wellness, which she is undertaking part-time. In response to questions, Housing Minister Felix Ellis said the government was "working tirelessly" to address the needs of the thousands of people on the housing register. Ms Wall said she had contacted Mr Ellis three times and was told each time that her letter was forwarded to Homes Tasmania. "Our hearts go out to Ms Wall and her daughter, Ms Goody, and to all Tasmanians experiencing homelessness," Mr Ellis said. Ms Wall said she blamed the housing crisis on the government's "mismanagement". "I would also say to the government, stop using vulnerable people's suffering as a political talking point," she said. "They need to actually come and meet with the people, walk a day in our shoes, for goodness' sake." If you or someone you know has been affected by this story, please contact:
The Advertiser
26-07-2025
- The Advertiser
'They would withdraw care': cracks in NDIS costing Hunter families thousands
IT'S the system meant to offer them a safety net, but a funding crackdown is leaving some National Disability Insurance Scheme participants falling through the cracks. NDIS participants are being put at risk with lengthy delays and questionable decisions endangering the lives of those left without funded support and nowhere to go. Hospitals have become a last resort while families and service providers are being stranded with hefty bills into the tens of thousands of dollars. Industry insiders say that a broad-brush approach to a system-wide crackdown on NDIS spending is robbing those who genuinely rely on it. In two separate cases reported to the Newcastle Herald, people living with quadraplegia have had to rely on the goodwill of service providers for hands-on, life-sustaining care. Those service providers, and the families of those individuals, are paying out-of-pocket to ensure those supports remain in place. So far they have been unable to recover those costs due to what they describe as a combination of bureaucratic red tape, a lack of training and oversight, and the unavailability of NDIS staff with the experience, knowledge, or authority to address or escalate issues in a timely way. In the case of 52-year-old Jamie Phillips of Bolton Point, heavily reliant on his partner as well as funded supports, his NDIS journey has been difficult form the start. Karen Johnson, 58, works full-time as well as being Mr Phillips' full-time carer seven nights per week, starting at 4.30pm each day when she gets home from work. Night time care involves hoisting Mr Phillips out of bed and into a chair, onto a commode, in and out of the shower, into fresh clothes and hoisting him back onto the bed. He requires special boots, a CPAP machine, medications at 8pm and 11pm, and a catheter. She is preparing to purchase a $10,000 bed to enable her to sleep in the same room. "For three years he's been living in our loungeroom, he gets dressed there, he gets wheeled through the house naked to get showered, and wheeled back to go to bed," she said. Mr Phillips became a quadraplegic in 2022 after a botched medical procedure almost took his life, she said. He became an NDIS participant in December the same year. "Every plan we've had, we've had an issue with," Ms Johnson said. "It was underfunded or incorrectly funded, then last year his funding fell short. We had two agencies involved, both of them kept working for us without getting paid up until one who we paid because they said if we didn't pay they would withdraw their care." That was a bill for $21,000. The second company, which continued to provide services, has never been paid, she said, to the tune of about $15,000. "They just didn't get their money," Ms Johnson said. "This year Jamie got compensation for medical malpractice, so when we got the compensation, we had to pay back $1.9 million back to NDIS because that's the money they paid for him in the two years prior," she said. According to the civil court, compensation is calculated on the assumption that a quadraplegic has a life expectancy of eight years post-injury, but according to the NDIS it's about 22 years, Ms Johnson said. "So they took the $1.9 million and his funding will be cut down by around about $100,000 per year while he's alive, and so while we we're talking to them about that, that lady said she wasn't involved in the section where we could get our money back, and we've just never heard anything more about it." Mr Phillips has also lost out on occupational therapy due to NDIS-related cuts to allied health services impacting in-home care, Ms Johnson said. Jonathan Castellan, also a quadraplegic, was wheeled into the NDIS office at Charlestown earlier this month by support workers desperate to help him get the funding he needed. Already thousands of dollars out-of-pocket, it has been the dedication of those support workers that has kept Mr Castellan alive. "They didn't seem to understand how he couldn't spend a few days at home by himself," his sister, who did not wish to be named, told the Herald. Mr Castellan, 63, lives with quadraplegia following a spinal cord injury, as well as autism and dysphasia. He is catheterised and requires 24-hour care, but his sister said that due to an escalation in his care needs after a hospital stay, which meant he needed more support overnight, he ran out of funding. While the likelihood that he would run out of funding on that basis had been raised with the NDIS beforehand, delays meant his carers had no choice but to work without pay, she said. "You cannot ring the NDIS and speak to anyone who can actually do anything," an associated carer said. "They can't even escalate it and say to someone that we've got this major problem here - even if it was to release funding so we could continue caring for him until they can sort it out. "They don't read the reports. They will spend more money fighting the wheelchair than it would cost to buy the wheelchair." In both cases, family members and care teams considered hospitalisation as an option, but already hospitals are struggling with aged care and NDIS bedblock, and have pushed back. A spokesperson for the National Disability Insurance Agency (NDIA), which governs the scheme, said the safety and welfare of NDIS participants was its "top priority". "While providers should be spending within a participant's funded support levels, the agency can prioritise requests for further funding, when there is a risk to a participant through a change in their circumstances," the spokesperson said. "In these cases, the NDIA will work closely with participants and review supporting evidence to ensure participant safety." It is understood the NDIA disputes the sequence of events as relayed by family members and support workers, and said that the required level of supporting evidence had not been submitted. Further, while the agency can prioritise requests for increased supports when there is a risk to a participant through a change in their circumstances, early exhaustion of plan funding does not automatically initiate a plan review or the approval of a new NDIS plan. The Herald has reported rising levels of aged care and NDIS bedblock, which has increased by more than 40 per cent across Hunter hospitals since March, further exacerbating the issue as hospitals battle to find enough beds and staff to man them. IT'S the system meant to offer them a safety net, but a funding crackdown is leaving some National Disability Insurance Scheme participants falling through the cracks. NDIS participants are being put at risk with lengthy delays and questionable decisions endangering the lives of those left without funded support and nowhere to go. Hospitals have become a last resort while families and service providers are being stranded with hefty bills into the tens of thousands of dollars. Industry insiders say that a broad-brush approach to a system-wide crackdown on NDIS spending is robbing those who genuinely rely on it. In two separate cases reported to the Newcastle Herald, people living with quadraplegia have had to rely on the goodwill of service providers for hands-on, life-sustaining care. Those service providers, and the families of those individuals, are paying out-of-pocket to ensure those supports remain in place. So far they have been unable to recover those costs due to what they describe as a combination of bureaucratic red tape, a lack of training and oversight, and the unavailability of NDIS staff with the experience, knowledge, or authority to address or escalate issues in a timely way. In the case of 52-year-old Jamie Phillips of Bolton Point, heavily reliant on his partner as well as funded supports, his NDIS journey has been difficult form the start. Karen Johnson, 58, works full-time as well as being Mr Phillips' full-time carer seven nights per week, starting at 4.30pm each day when she gets home from work. Night time care involves hoisting Mr Phillips out of bed and into a chair, onto a commode, in and out of the shower, into fresh clothes and hoisting him back onto the bed. He requires special boots, a CPAP machine, medications at 8pm and 11pm, and a catheter. She is preparing to purchase a $10,000 bed to enable her to sleep in the same room. "For three years he's been living in our loungeroom, he gets dressed there, he gets wheeled through the house naked to get showered, and wheeled back to go to bed," she said. Mr Phillips became a quadraplegic in 2022 after a botched medical procedure almost took his life, she said. He became an NDIS participant in December the same year. "Every plan we've had, we've had an issue with," Ms Johnson said. "It was underfunded or incorrectly funded, then last year his funding fell short. We had two agencies involved, both of them kept working for us without getting paid up until one who we paid because they said if we didn't pay they would withdraw their care." That was a bill for $21,000. The second company, which continued to provide services, has never been paid, she said, to the tune of about $15,000. "They just didn't get their money," Ms Johnson said. "This year Jamie got compensation for medical malpractice, so when we got the compensation, we had to pay back $1.9 million back to NDIS because that's the money they paid for him in the two years prior," she said. According to the civil court, compensation is calculated on the assumption that a quadraplegic has a life expectancy of eight years post-injury, but according to the NDIS it's about 22 years, Ms Johnson said. "So they took the $1.9 million and his funding will be cut down by around about $100,000 per year while he's alive, and so while we we're talking to them about that, that lady said she wasn't involved in the section where we could get our money back, and we've just never heard anything more about it." Mr Phillips has also lost out on occupational therapy due to NDIS-related cuts to allied health services impacting in-home care, Ms Johnson said. Jonathan Castellan, also a quadraplegic, was wheeled into the NDIS office at Charlestown earlier this month by support workers desperate to help him get the funding he needed. Already thousands of dollars out-of-pocket, it has been the dedication of those support workers that has kept Mr Castellan alive. "They didn't seem to understand how he couldn't spend a few days at home by himself," his sister, who did not wish to be named, told the Herald. Mr Castellan, 63, lives with quadraplegia following a spinal cord injury, as well as autism and dysphasia. He is catheterised and requires 24-hour care, but his sister said that due to an escalation in his care needs after a hospital stay, which meant he needed more support overnight, he ran out of funding. While the likelihood that he would run out of funding on that basis had been raised with the NDIS beforehand, delays meant his carers had no choice but to work without pay, she said. "You cannot ring the NDIS and speak to anyone who can actually do anything," an associated carer said. "They can't even escalate it and say to someone that we've got this major problem here - even if it was to release funding so we could continue caring for him until they can sort it out. "They don't read the reports. They will spend more money fighting the wheelchair than it would cost to buy the wheelchair." In both cases, family members and care teams considered hospitalisation as an option, but already hospitals are struggling with aged care and NDIS bedblock, and have pushed back. A spokesperson for the National Disability Insurance Agency (NDIA), which governs the scheme, said the safety and welfare of NDIS participants was its "top priority". "While providers should be spending within a participant's funded support levels, the agency can prioritise requests for further funding, when there is a risk to a participant through a change in their circumstances," the spokesperson said. "In these cases, the NDIA will work closely with participants and review supporting evidence to ensure participant safety." It is understood the NDIA disputes the sequence of events as relayed by family members and support workers, and said that the required level of supporting evidence had not been submitted. Further, while the agency can prioritise requests for increased supports when there is a risk to a participant through a change in their circumstances, early exhaustion of plan funding does not automatically initiate a plan review or the approval of a new NDIS plan. The Herald has reported rising levels of aged care and NDIS bedblock, which has increased by more than 40 per cent across Hunter hospitals since March, further exacerbating the issue as hospitals battle to find enough beds and staff to man them. IT'S the system meant to offer them a safety net, but a funding crackdown is leaving some National Disability Insurance Scheme participants falling through the cracks. NDIS participants are being put at risk with lengthy delays and questionable decisions endangering the lives of those left without funded support and nowhere to go. Hospitals have become a last resort while families and service providers are being stranded with hefty bills into the tens of thousands of dollars. Industry insiders say that a broad-brush approach to a system-wide crackdown on NDIS spending is robbing those who genuinely rely on it. In two separate cases reported to the Newcastle Herald, people living with quadraplegia have had to rely on the goodwill of service providers for hands-on, life-sustaining care. Those service providers, and the families of those individuals, are paying out-of-pocket to ensure those supports remain in place. So far they have been unable to recover those costs due to what they describe as a combination of bureaucratic red tape, a lack of training and oversight, and the unavailability of NDIS staff with the experience, knowledge, or authority to address or escalate issues in a timely way. In the case of 52-year-old Jamie Phillips of Bolton Point, heavily reliant on his partner as well as funded supports, his NDIS journey has been difficult form the start. Karen Johnson, 58, works full-time as well as being Mr Phillips' full-time carer seven nights per week, starting at 4.30pm each day when she gets home from work. Night time care involves hoisting Mr Phillips out of bed and into a chair, onto a commode, in and out of the shower, into fresh clothes and hoisting him back onto the bed. He requires special boots, a CPAP machine, medications at 8pm and 11pm, and a catheter. She is preparing to purchase a $10,000 bed to enable her to sleep in the same room. "For three years he's been living in our loungeroom, he gets dressed there, he gets wheeled through the house naked to get showered, and wheeled back to go to bed," she said. Mr Phillips became a quadraplegic in 2022 after a botched medical procedure almost took his life, she said. He became an NDIS participant in December the same year. "Every plan we've had, we've had an issue with," Ms Johnson said. "It was underfunded or incorrectly funded, then last year his funding fell short. We had two agencies involved, both of them kept working for us without getting paid up until one who we paid because they said if we didn't pay they would withdraw their care." That was a bill for $21,000. The second company, which continued to provide services, has never been paid, she said, to the tune of about $15,000. "They just didn't get their money," Ms Johnson said. "This year Jamie got compensation for medical malpractice, so when we got the compensation, we had to pay back $1.9 million back to NDIS because that's the money they paid for him in the two years prior," she said. According to the civil court, compensation is calculated on the assumption that a quadraplegic has a life expectancy of eight years post-injury, but according to the NDIS it's about 22 years, Ms Johnson said. "So they took the $1.9 million and his funding will be cut down by around about $100,000 per year while he's alive, and so while we we're talking to them about that, that lady said she wasn't involved in the section where we could get our money back, and we've just never heard anything more about it." Mr Phillips has also lost out on occupational therapy due to NDIS-related cuts to allied health services impacting in-home care, Ms Johnson said. Jonathan Castellan, also a quadraplegic, was wheeled into the NDIS office at Charlestown earlier this month by support workers desperate to help him get the funding he needed. Already thousands of dollars out-of-pocket, it has been the dedication of those support workers that has kept Mr Castellan alive. "They didn't seem to understand how he couldn't spend a few days at home by himself," his sister, who did not wish to be named, told the Herald. Mr Castellan, 63, lives with quadraplegia following a spinal cord injury, as well as autism and dysphasia. He is catheterised and requires 24-hour care, but his sister said that due to an escalation in his care needs after a hospital stay, which meant he needed more support overnight, he ran out of funding. While the likelihood that he would run out of funding on that basis had been raised with the NDIS beforehand, delays meant his carers had no choice but to work without pay, she said. "You cannot ring the NDIS and speak to anyone who can actually do anything," an associated carer said. "They can't even escalate it and say to someone that we've got this major problem here - even if it was to release funding so we could continue caring for him until they can sort it out. "They don't read the reports. They will spend more money fighting the wheelchair than it would cost to buy the wheelchair." In both cases, family members and care teams considered hospitalisation as an option, but already hospitals are struggling with aged care and NDIS bedblock, and have pushed back. A spokesperson for the National Disability Insurance Agency (NDIA), which governs the scheme, said the safety and welfare of NDIS participants was its "top priority". "While providers should be spending within a participant's funded support levels, the agency can prioritise requests for further funding, when there is a risk to a participant through a change in their circumstances," the spokesperson said. "In these cases, the NDIA will work closely with participants and review supporting evidence to ensure participant safety." It is understood the NDIA disputes the sequence of events as relayed by family members and support workers, and said that the required level of supporting evidence had not been submitted. Further, while the agency can prioritise requests for increased supports when there is a risk to a participant through a change in their circumstances, early exhaustion of plan funding does not automatically initiate a plan review or the approval of a new NDIS plan. The Herald has reported rising levels of aged care and NDIS bedblock, which has increased by more than 40 per cent across Hunter hospitals since March, further exacerbating the issue as hospitals battle to find enough beds and staff to man them. IT'S the system meant to offer them a safety net, but a funding crackdown is leaving some National Disability Insurance Scheme participants falling through the cracks. NDIS participants are being put at risk with lengthy delays and questionable decisions endangering the lives of those left without funded support and nowhere to go. Hospitals have become a last resort while families and service providers are being stranded with hefty bills into the tens of thousands of dollars. Industry insiders say that a broad-brush approach to a system-wide crackdown on NDIS spending is robbing those who genuinely rely on it. In two separate cases reported to the Newcastle Herald, people living with quadraplegia have had to rely on the goodwill of service providers for hands-on, life-sustaining care. Those service providers, and the families of those individuals, are paying out-of-pocket to ensure those supports remain in place. So far they have been unable to recover those costs due to what they describe as a combination of bureaucratic red tape, a lack of training and oversight, and the unavailability of NDIS staff with the experience, knowledge, or authority to address or escalate issues in a timely way. In the case of 52-year-old Jamie Phillips of Bolton Point, heavily reliant on his partner as well as funded supports, his NDIS journey has been difficult form the start. Karen Johnson, 58, works full-time as well as being Mr Phillips' full-time carer seven nights per week, starting at 4.30pm each day when she gets home from work. Night time care involves hoisting Mr Phillips out of bed and into a chair, onto a commode, in and out of the shower, into fresh clothes and hoisting him back onto the bed. He requires special boots, a CPAP machine, medications at 8pm and 11pm, and a catheter. She is preparing to purchase a $10,000 bed to enable her to sleep in the same room. "For three years he's been living in our loungeroom, he gets dressed there, he gets wheeled through the house naked to get showered, and wheeled back to go to bed," she said. Mr Phillips became a quadraplegic in 2022 after a botched medical procedure almost took his life, she said. He became an NDIS participant in December the same year. "Every plan we've had, we've had an issue with," Ms Johnson said. "It was underfunded or incorrectly funded, then last year his funding fell short. We had two agencies involved, both of them kept working for us without getting paid up until one who we paid because they said if we didn't pay they would withdraw their care." That was a bill for $21,000. The second company, which continued to provide services, has never been paid, she said, to the tune of about $15,000. "They just didn't get their money," Ms Johnson said. "This year Jamie got compensation for medical malpractice, so when we got the compensation, we had to pay back $1.9 million back to NDIS because that's the money they paid for him in the two years prior," she said. According to the civil court, compensation is calculated on the assumption that a quadraplegic has a life expectancy of eight years post-injury, but according to the NDIS it's about 22 years, Ms Johnson said. "So they took the $1.9 million and his funding will be cut down by around about $100,000 per year while he's alive, and so while we we're talking to them about that, that lady said she wasn't involved in the section where we could get our money back, and we've just never heard anything more about it." Mr Phillips has also lost out on occupational therapy due to NDIS-related cuts to allied health services impacting in-home care, Ms Johnson said. Jonathan Castellan, also a quadraplegic, was wheeled into the NDIS office at Charlestown earlier this month by support workers desperate to help him get the funding he needed. Already thousands of dollars out-of-pocket, it has been the dedication of those support workers that has kept Mr Castellan alive. "They didn't seem to understand how he couldn't spend a few days at home by himself," his sister, who did not wish to be named, told the Herald. Mr Castellan, 63, lives with quadraplegia following a spinal cord injury, as well as autism and dysphasia. He is catheterised and requires 24-hour care, but his sister said that due to an escalation in his care needs after a hospital stay, which meant he needed more support overnight, he ran out of funding. While the likelihood that he would run out of funding on that basis had been raised with the NDIS beforehand, delays meant his carers had no choice but to work without pay, she said. "You cannot ring the NDIS and speak to anyone who can actually do anything," an associated carer said. "They can't even escalate it and say to someone that we've got this major problem here - even if it was to release funding so we could continue caring for him until they can sort it out. "They don't read the reports. They will spend more money fighting the wheelchair than it would cost to buy the wheelchair." In both cases, family members and care teams considered hospitalisation as an option, but already hospitals are struggling with aged care and NDIS bedblock, and have pushed back. A spokesperson for the National Disability Insurance Agency (NDIA), which governs the scheme, said the safety and welfare of NDIS participants was its "top priority". "While providers should be spending within a participant's funded support levels, the agency can prioritise requests for further funding, when there is a risk to a participant through a change in their circumstances," the spokesperson said. "In these cases, the NDIA will work closely with participants and review supporting evidence to ensure participant safety." It is understood the NDIA disputes the sequence of events as relayed by family members and support workers, and said that the required level of supporting evidence had not been submitted. Further, while the agency can prioritise requests for increased supports when there is a risk to a participant through a change in their circumstances, early exhaustion of plan funding does not automatically initiate a plan review or the approval of a new NDIS plan. The Herald has reported rising levels of aged care and NDIS bedblock, which has increased by more than 40 per cent across Hunter hospitals since March, further exacerbating the issue as hospitals battle to find enough beds and staff to man them.
