'They would withdraw care': cracks in NDIS costing Hunter families thousands

The Advertiser

5 days ago

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.