'They give me goosebumps': simple joys, special moments for dying kids
There's pain, suffering and emotion, but there's people who can help.
Madelon Scully, a paediatric palliative care occupational therapist with Hunter New England Health, said "no parent wants to see their child referred to end-of-life care".
"Our role is to support any child or young person with a life-limiting illness," Ms Scully said.
Ms Scully spoke to the Newcastle Herald to mark National Palliative Care Week, which helps break the taboo of discussing death.
"We find moments to bring joy. It's phenomenal to help those patients and families alleviate suffering and do what we can to fulfil their wishes and goals," she said.
There are many poignant moments.
"There are certainly things that give me goosebumps," Ms Scully said.
"It is a special thing. Often kids at the end of life will see a dog or pet that died. Or they'll talk about a grandparent who died.
"There are those intangible things that happen but are hard to measure."
Simple joys and helping children live their best lives were important.
"We have little babies who get pleasure from having a bath and soaking in warm water," she said.
"For some kids, it's getting to school to see their friends. For others, it's being able to go outside."
The service helps children ease pain and suffering.
"Our medical and nursing team is great at symptom management. Kids might have pain or breathlessness.
"It could be fear and anxiety. We manage that.
"There are lots of non-pharmacological ways to relieve symptoms. Our music therapist does amazing symptom management."
Some children are fed through tubes in their tummies.
"They aren't able to eat and taste things. Often we will talk to families about risk versus benefit.
"For some kids, having a little taste of something gives them pleasure, even if they're not swallowing."
Some kids are fatigued.
"They only have so much energy. I chat to them about how they want to spend their energy. Do they want to have a shower or do something fun?"
Humour plays a big part.
"People often say it must be so depressing, but we have so much laughter.
"Some of our kids love to play jokes and have fun and be silly. We've had dance-offs and the worst possible singing you could imagine.
"There's a lot of banter and happiness that goes on."
Paediatric palliative care can be long term.
"We can have relationships with families for many years. In paediatrics, there are a lot of kids with genetic and neurological disorders. We get oncology referrals as well.
"We work as a team - medical, nursing, allied health, OT [occupational therapy], social work and music therapy."
When little ones die, families can see their bodies at John Hunter Hospital's mortuary.
"The mortuary corridor was old and dingy. Paint was falling off the walls. It was awful," Ms Scully said.
The Minns government is boosting paediatric palliative care funding to about $80 million over four years.
"Some of this funding has gone to improve the mortuary area for families," Ms Scully said.
"A more calming and supportive space for families is important to us."
When little ones die, it's a devastating time for families.
There's pain, suffering and emotion, but there's people who can help.
Madelon Scully, a paediatric palliative care occupational therapist with Hunter New England Health, said "no parent wants to see their child referred to end-of-life care".
"Our role is to support any child or young person with a life-limiting illness," Ms Scully said.
Ms Scully spoke to the Newcastle Herald to mark National Palliative Care Week, which helps break the taboo of discussing death.
"We find moments to bring joy. It's phenomenal to help those patients and families alleviate suffering and do what we can to fulfil their wishes and goals," she said.
There are many poignant moments.
"There are certainly things that give me goosebumps," Ms Scully said.
"It is a special thing. Often kids at the end of life will see a dog or pet that died. Or they'll talk about a grandparent who died.
"There are those intangible things that happen but are hard to measure."
Simple joys and helping children live their best lives were important.
"We have little babies who get pleasure from having a bath and soaking in warm water," she said.
"For some kids, it's getting to school to see their friends. For others, it's being able to go outside."
The service helps children ease pain and suffering.
"Our medical and nursing team is great at symptom management. Kids might have pain or breathlessness.
"It could be fear and anxiety. We manage that.
"There are lots of non-pharmacological ways to relieve symptoms. Our music therapist does amazing symptom management."
Some children are fed through tubes in their tummies.
"They aren't able to eat and taste things. Often we will talk to families about risk versus benefit.
"For some kids, having a little taste of something gives them pleasure, even if they're not swallowing."
Some kids are fatigued.
"They only have so much energy. I chat to them about how they want to spend their energy. Do they want to have a shower or do something fun?"
Humour plays a big part.
"People often say it must be so depressing, but we have so much laughter.
"Some of our kids love to play jokes and have fun and be silly. We've had dance-offs and the worst possible singing you could imagine.
"There's a lot of banter and happiness that goes on."
Paediatric palliative care can be long term.
"We can have relationships with families for many years. In paediatrics, there are a lot of kids with genetic and neurological disorders. We get oncology referrals as well.
"We work as a team - medical, nursing, allied health, OT [occupational therapy], social work and music therapy."
When little ones die, families can see their bodies at John Hunter Hospital's mortuary.
"The mortuary corridor was old and dingy. Paint was falling off the walls. It was awful," Ms Scully said.
The Minns government is boosting paediatric palliative care funding to about $80 million over four years.
"Some of this funding has gone to improve the mortuary area for families," Ms Scully said.
"A more calming and supportive space for families is important to us."
When little ones die, it's a devastating time for families.
There's pain, suffering and emotion, but there's people who can help.
Madelon Scully, a paediatric palliative care occupational therapist with Hunter New England Health, said "no parent wants to see their child referred to end-of-life care".
"Our role is to support any child or young person with a life-limiting illness," Ms Scully said.
Ms Scully spoke to the Newcastle Herald to mark National Palliative Care Week, which helps break the taboo of discussing death.
"We find moments to bring joy. It's phenomenal to help those patients and families alleviate suffering and do what we can to fulfil their wishes and goals," she said.
There are many poignant moments.
"There are certainly things that give me goosebumps," Ms Scully said.
"It is a special thing. Often kids at the end of life will see a dog or pet that died. Or they'll talk about a grandparent who died.
"There are those intangible things that happen but are hard to measure."
Simple joys and helping children live their best lives were important.
"We have little babies who get pleasure from having a bath and soaking in warm water," she said.
"For some kids, it's getting to school to see their friends. For others, it's being able to go outside."
The service helps children ease pain and suffering.
"Our medical and nursing team is great at symptom management. Kids might have pain or breathlessness.
"It could be fear and anxiety. We manage that.
"There are lots of non-pharmacological ways to relieve symptoms. Our music therapist does amazing symptom management."
Some children are fed through tubes in their tummies.
"They aren't able to eat and taste things. Often we will talk to families about risk versus benefit.
"For some kids, having a little taste of something gives them pleasure, even if they're not swallowing."
Some kids are fatigued.
"They only have so much energy. I chat to them about how they want to spend their energy. Do they want to have a shower or do something fun?"
Humour plays a big part.
"People often say it must be so depressing, but we have so much laughter.
"Some of our kids love to play jokes and have fun and be silly. We've had dance-offs and the worst possible singing you could imagine.
"There's a lot of banter and happiness that goes on."
Paediatric palliative care can be long term.
"We can have relationships with families for many years. In paediatrics, there are a lot of kids with genetic and neurological disorders. We get oncology referrals as well.
"We work as a team - medical, nursing, allied health, OT [occupational therapy], social work and music therapy."
When little ones die, families can see their bodies at John Hunter Hospital's mortuary.
"The mortuary corridor was old and dingy. Paint was falling off the walls. It was awful," Ms Scully said.
The Minns government is boosting paediatric palliative care funding to about $80 million over four years.
"Some of this funding has gone to improve the mortuary area for families," Ms Scully said.
"A more calming and supportive space for families is important to us."
When little ones die, it's a devastating time for families.
There's pain, suffering and emotion, but there's people who can help.
Madelon Scully, a paediatric palliative care occupational therapist with Hunter New England Health, said "no parent wants to see their child referred to end-of-life care".
"Our role is to support any child or young person with a life-limiting illness," Ms Scully said.
Ms Scully spoke to the Newcastle Herald to mark National Palliative Care Week, which helps break the taboo of discussing death.
"We find moments to bring joy. It's phenomenal to help those patients and families alleviate suffering and do what we can to fulfil their wishes and goals," she said.
There are many poignant moments.
"There are certainly things that give me goosebumps," Ms Scully said.
"It is a special thing. Often kids at the end of life will see a dog or pet that died. Or they'll talk about a grandparent who died.
"There are those intangible things that happen but are hard to measure."
Simple joys and helping children live their best lives were important.
"We have little babies who get pleasure from having a bath and soaking in warm water," she said.
"For some kids, it's getting to school to see their friends. For others, it's being able to go outside."
The service helps children ease pain and suffering.
"Our medical and nursing team is great at symptom management. Kids might have pain or breathlessness.
"It could be fear and anxiety. We manage that.
"There are lots of non-pharmacological ways to relieve symptoms. Our music therapist does amazing symptom management."
Some children are fed through tubes in their tummies.
"They aren't able to eat and taste things. Often we will talk to families about risk versus benefit.
"For some kids, having a little taste of something gives them pleasure, even if they're not swallowing."
Some kids are fatigued.
"They only have so much energy. I chat to them about how they want to spend their energy. Do they want to have a shower or do something fun?"
Humour plays a big part.
"People often say it must be so depressing, but we have so much laughter.
"Some of our kids love to play jokes and have fun and be silly. We've had dance-offs and the worst possible singing you could imagine.
"There's a lot of banter and happiness that goes on."
Paediatric palliative care can be long term.
"We can have relationships with families for many years. In paediatrics, there are a lot of kids with genetic and neurological disorders. We get oncology referrals as well.
"We work as a team - medical, nursing, allied health, OT [occupational therapy], social work and music therapy."
When little ones die, families can see their bodies at John Hunter Hospital's mortuary.
"The mortuary corridor was old and dingy. Paint was falling off the walls. It was awful," Ms Scully said.
The Minns government is boosting paediatric palliative care funding to about $80 million over four years.
"Some of this funding has gone to improve the mortuary area for families," Ms Scully said.
"A more calming and supportive space for families is important to us."
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The Advertiser
29-07-2025
- The Advertiser
John Hunter only admitting patients with 'threat of limb or life loss'
Surgeons at John Hunter Hospital have been told to admit patients only with "threat of limb or life loss" amid an extreme bed shortage. Hospital management sent surgeons a message on Monday afternoon that said "John Hunter Hospital is going into the evening with minus 37 beds". The message, titled "extreme bed compromise", said "we are on life and limb". "This means any acceptance of patients into John Hunter Hospital must be via surgeons (not registrars) and must be for patients who have threat of limb loss or life loss," it said. "Please continue to ... identify all patients who can be discharged home or to HITH [Hospital in the Home]." This followed patients waiting up to four hours when arriving by ambulance to John Hunter at the weekend. The waits coincided with high presentations and admissions to hospitals across the state for influenza-like illness. "It's been pretty bad in the last 28 to 48 hours," said Brendan McIlveen, a Newcastle-based paramedic. Mr McIlveen, the Australian Paramedics Association NSW secretary, said "this is probably the worst it's been in a long while". More than 10 ambulances were seen lined up at the John Hunter on Sunday. One hospital staffer told the Newcastle Herald there were "40 patients in overflow". "The cardiac catheterisation laboratory and endoscopy recovery have been used for overflow patients. "Patients are waiting excessively because we don't have anywhere to see them. We have no movement of patients. "Staff feel overwhelmed and fearful that something will go wrong. They get scared that someone will die." The staffer said the hospital executive "refused to call a code yellow" on Sunday. "This would mean they recognise we have an internal emergency." In this scenario, moves could be made to ease pressure on the hospital. A Hunter New England Health spokesperson said on Monday: "John Hunter Hospital is currently experiencing a higher-than-usual volume of patients, including a significant number of seriously unwell patients". "In response to demand and to alleviate pressure in the ED, we are activating surge areas to temporarily increase our capacity as required. "During periods of high activity, we monitor inter-hospital transfer requests and prioritise the most unwell patients." Mr McIlveen said the patients brought to the hospital by ambulance on Sunday were "genuine cases". "It's not as though they could see a GP or be referred to an urgent care centre," he said. "It's flu season, so there were a number of unwell people on Sunday." He added that "trauma happens during weekend sports". "John Hunter does take all the trauma. It flows well, considering the number of ambulances and patients presenting in the waiting room as well," Mr McIlveen said. "It does show how well the nurses and doctors do to see as many patients as they do. They were doing everything they possibly could." But as the workload increases, so do delays at the hospital. "This does put a burden on the response available for the community," Mr McIlveen said. "The warmer weather will probably start again soon so that will hopefully settle all the respiratory cases down a bit." The latest NSW Respiratory Surveillance Report showed "influenza activity is still at a high level", but cases among children had fallen during the school holidays. "COVID is at a moderate level of activity and decreasing. RSV [respiratory syncytial virus] activity is decreasing and at a moderate level," the report said. ED presentations and admissions for bronchiolitis in young children were high, particularly in those aged less than one, but they were decreasing. While another month of winter lies ahead, the Bureau of Meteorology has forecast warmer than average days and nights in south-eastern Australia from August to October. The bureau said there was an "increased chance of unusually high overnight temperatures". Surgeons at John Hunter Hospital have been told to admit patients only with "threat of limb or life loss" amid an extreme bed shortage. Hospital management sent surgeons a message on Monday afternoon that said "John Hunter Hospital is going into the evening with minus 37 beds". The message, titled "extreme bed compromise", said "we are on life and limb". "This means any acceptance of patients into John Hunter Hospital must be via surgeons (not registrars) and must be for patients who have threat of limb loss or life loss," it said. "Please continue to ... identify all patients who can be discharged home or to HITH [Hospital in the Home]." This followed patients waiting up to four hours when arriving by ambulance to John Hunter at the weekend. The waits coincided with high presentations and admissions to hospitals across the state for influenza-like illness. "It's been pretty bad in the last 28 to 48 hours," said Brendan McIlveen, a Newcastle-based paramedic. Mr McIlveen, the Australian Paramedics Association NSW secretary, said "this is probably the worst it's been in a long while". More than 10 ambulances were seen lined up at the John Hunter on Sunday. One hospital staffer told the Newcastle Herald there were "40 patients in overflow". "The cardiac catheterisation laboratory and endoscopy recovery have been used for overflow patients. "Patients are waiting excessively because we don't have anywhere to see them. We have no movement of patients. "Staff feel overwhelmed and fearful that something will go wrong. They get scared that someone will die." The staffer said the hospital executive "refused to call a code yellow" on Sunday. "This would mean they recognise we have an internal emergency." In this scenario, moves could be made to ease pressure on the hospital. A Hunter New England Health spokesperson said on Monday: "John Hunter Hospital is currently experiencing a higher-than-usual volume of patients, including a significant number of seriously unwell patients". "In response to demand and to alleviate pressure in the ED, we are activating surge areas to temporarily increase our capacity as required. "During periods of high activity, we monitor inter-hospital transfer requests and prioritise the most unwell patients." Mr McIlveen said the patients brought to the hospital by ambulance on Sunday were "genuine cases". "It's not as though they could see a GP or be referred to an urgent care centre," he said. "It's flu season, so there were a number of unwell people on Sunday." He added that "trauma happens during weekend sports". "John Hunter does take all the trauma. It flows well, considering the number of ambulances and patients presenting in the waiting room as well," Mr McIlveen said. "It does show how well the nurses and doctors do to see as many patients as they do. They were doing everything they possibly could." But as the workload increases, so do delays at the hospital. "This does put a burden on the response available for the community," Mr McIlveen said. "The warmer weather will probably start again soon so that will hopefully settle all the respiratory cases down a bit." The latest NSW Respiratory Surveillance Report showed "influenza activity is still at a high level", but cases among children had fallen during the school holidays. "COVID is at a moderate level of activity and decreasing. RSV [respiratory syncytial virus] activity is decreasing and at a moderate level," the report said. ED presentations and admissions for bronchiolitis in young children were high, particularly in those aged less than one, but they were decreasing. While another month of winter lies ahead, the Bureau of Meteorology has forecast warmer than average days and nights in south-eastern Australia from August to October. The bureau said there was an "increased chance of unusually high overnight temperatures". Surgeons at John Hunter Hospital have been told to admit patients only with "threat of limb or life loss" amid an extreme bed shortage. Hospital management sent surgeons a message on Monday afternoon that said "John Hunter Hospital is going into the evening with minus 37 beds". The message, titled "extreme bed compromise", said "we are on life and limb". "This means any acceptance of patients into John Hunter Hospital must be via surgeons (not registrars) and must be for patients who have threat of limb loss or life loss," it said. "Please continue to ... identify all patients who can be discharged home or to HITH [Hospital in the Home]." This followed patients waiting up to four hours when arriving by ambulance to John Hunter at the weekend. The waits coincided with high presentations and admissions to hospitals across the state for influenza-like illness. "It's been pretty bad in the last 28 to 48 hours," said Brendan McIlveen, a Newcastle-based paramedic. Mr McIlveen, the Australian Paramedics Association NSW secretary, said "this is probably the worst it's been in a long while". More than 10 ambulances were seen lined up at the John Hunter on Sunday. One hospital staffer told the Newcastle Herald there were "40 patients in overflow". "The cardiac catheterisation laboratory and endoscopy recovery have been used for overflow patients. "Patients are waiting excessively because we don't have anywhere to see them. We have no movement of patients. "Staff feel overwhelmed and fearful that something will go wrong. They get scared that someone will die." The staffer said the hospital executive "refused to call a code yellow" on Sunday. "This would mean they recognise we have an internal emergency." In this scenario, moves could be made to ease pressure on the hospital. A Hunter New England Health spokesperson said on Monday: "John Hunter Hospital is currently experiencing a higher-than-usual volume of patients, including a significant number of seriously unwell patients". "In response to demand and to alleviate pressure in the ED, we are activating surge areas to temporarily increase our capacity as required. "During periods of high activity, we monitor inter-hospital transfer requests and prioritise the most unwell patients." Mr McIlveen said the patients brought to the hospital by ambulance on Sunday were "genuine cases". "It's not as though they could see a GP or be referred to an urgent care centre," he said. "It's flu season, so there were a number of unwell people on Sunday." He added that "trauma happens during weekend sports". "John Hunter does take all the trauma. It flows well, considering the number of ambulances and patients presenting in the waiting room as well," Mr McIlveen said. "It does show how well the nurses and doctors do to see as many patients as they do. They were doing everything they possibly could." But as the workload increases, so do delays at the hospital. "This does put a burden on the response available for the community," Mr McIlveen said. "The warmer weather will probably start again soon so that will hopefully settle all the respiratory cases down a bit." The latest NSW Respiratory Surveillance Report showed "influenza activity is still at a high level", but cases among children had fallen during the school holidays. "COVID is at a moderate level of activity and decreasing. RSV [respiratory syncytial virus] activity is decreasing and at a moderate level," the report said. ED presentations and admissions for bronchiolitis in young children were high, particularly in those aged less than one, but they were decreasing. While another month of winter lies ahead, the Bureau of Meteorology has forecast warmer than average days and nights in south-eastern Australia from August to October. The bureau said there was an "increased chance of unusually high overnight temperatures". Surgeons at John Hunter Hospital have been told to admit patients only with "threat of limb or life loss" amid an extreme bed shortage. Hospital management sent surgeons a message on Monday afternoon that said "John Hunter Hospital is going into the evening with minus 37 beds". The message, titled "extreme bed compromise", said "we are on life and limb". "This means any acceptance of patients into John Hunter Hospital must be via surgeons (not registrars) and must be for patients who have threat of limb loss or life loss," it said. "Please continue to ... identify all patients who can be discharged home or to HITH [Hospital in the Home]." This followed patients waiting up to four hours when arriving by ambulance to John Hunter at the weekend. The waits coincided with high presentations and admissions to hospitals across the state for influenza-like illness. "It's been pretty bad in the last 28 to 48 hours," said Brendan McIlveen, a Newcastle-based paramedic. Mr McIlveen, the Australian Paramedics Association NSW secretary, said "this is probably the worst it's been in a long while". More than 10 ambulances were seen lined up at the John Hunter on Sunday. One hospital staffer told the Newcastle Herald there were "40 patients in overflow". "The cardiac catheterisation laboratory and endoscopy recovery have been used for overflow patients. "Patients are waiting excessively because we don't have anywhere to see them. We have no movement of patients. "Staff feel overwhelmed and fearful that something will go wrong. They get scared that someone will die." The staffer said the hospital executive "refused to call a code yellow" on Sunday. "This would mean they recognise we have an internal emergency." In this scenario, moves could be made to ease pressure on the hospital. A Hunter New England Health spokesperson said on Monday: "John Hunter Hospital is currently experiencing a higher-than-usual volume of patients, including a significant number of seriously unwell patients". "In response to demand and to alleviate pressure in the ED, we are activating surge areas to temporarily increase our capacity as required. "During periods of high activity, we monitor inter-hospital transfer requests and prioritise the most unwell patients." Mr McIlveen said the patients brought to the hospital by ambulance on Sunday were "genuine cases". "It's not as though they could see a GP or be referred to an urgent care centre," he said. "It's flu season, so there were a number of unwell people on Sunday." He added that "trauma happens during weekend sports". "John Hunter does take all the trauma. It flows well, considering the number of ambulances and patients presenting in the waiting room as well," Mr McIlveen said. "It does show how well the nurses and doctors do to see as many patients as they do. They were doing everything they possibly could." But as the workload increases, so do delays at the hospital. "This does put a burden on the response available for the community," Mr McIlveen said. "The warmer weather will probably start again soon so that will hopefully settle all the respiratory cases down a bit." The latest NSW Respiratory Surveillance Report showed "influenza activity is still at a high level", but cases among children had fallen during the school holidays. "COVID is at a moderate level of activity and decreasing. RSV [respiratory syncytial virus] activity is decreasing and at a moderate level," the report said. ED presentations and admissions for bronchiolitis in young children were high, particularly in those aged less than one, but they were decreasing. While another month of winter lies ahead, the Bureau of Meteorology has forecast warmer than average days and nights in south-eastern Australia from August to October. The bureau said there was an "increased chance of unusually high overnight temperatures".
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.
The Advertiser
23-07-2025
- The Advertiser
'Essentially shut': health authorities deny child mental health service in crisis
More than 300 Aboriginal children and young people are missing out on mental health care in the Hunter, insiders say, but Hunter New England Health denies the specialist clinic's "effective closure". The youngsters, aged three to 18, experience conditions like psychosis, personality disorders and extreme anxiety, along with self harm and suicidal thoughts. They had been treated at an Aboriginal-specific service at James Fletcher Hospital. The service, named Wiyiliin Ta, was now "essentially shut", a senior health professional said. Insiders said most of its 10 staff had left after a dispute with Hunter New England Health management over the running of the service. "On paper, Wiyiliin Ta appears to exist. But it's not providing direct clinical care. "This is the effective closure of a CAMHS [Child and Adolescent Mental Health Service] site." Dr Anand Swamy, Hunter New England Health's executive director, denied this. "The Wiyiliin Ta mental health service continues to deliver specialised, culturally safe mental health care for Aboriginal children and adolescents," Dr Swamy said. Hunter New England Health advertised a job last month for a "senior Aboriginal mental health clinician" at Wiyiliin Ta. The advertisement said the role would be part of "a specialised Aboriginal mental health service". "We are actively recruiting to vacancies within the Wiyiliin Ta mental health service," Dr Swamy said. "We are moving to a shared leadership model between Aboriginal Mental Health and the Child and Adolescence Mental Health Service." Wiyiliin Ta began operating in 1997. "It was the only Aboriginal-specific service in NSW for many years," an insider said. It had been based at Tara Lodge at James Fletcher Hospital for about a decade, but is no longer there. The site had an Aboriginal flag and art, bush tucker garden, smoking ceremonies and an outdoor space. "There was always a guarantee that an Aboriginal person would be involved in the treatment," an insider said. "It was integrated into the Aboriginal community as a safe entry point. Now there is no safe entry point." Dr Swamy said Wiyiliin Ta had been co-located with the Aboriginal Mental Health Service, "based primarily at Calvary Mater Newcastle". This was done to "further enhance cultural safety and support". "This move has fostered a more connected and supportive environment for our dedicated team members," Dr Swamy said. The insiders said most of the 300 children that had been treated at Wiyiliin Ta would not use "mainstream mental health services". "There's still a lot of fear for Aboriginal people linked to the history of racism and removal of children," one insider said. "We're seeing a return to an antiquated model when it comes to Aboriginal access to specialist care. "Yet there's been ongoing findings from coroners and government inquiries that Aboriginal people need specific services to meet their cultural needs." Suicide rates among Indigenous people aged up to 24 are more than three times as high as non-Indigenous Australians. Key causes of psychological distress for Aboriginal people are racism and intergenerational trauma. Wiyiliin Ta provided a "connection to culture" that helped protect young people facing complex mental health difficulties. It also helped those involved in the criminal justice system. The insiders said the health service had not informed the Aboriginal community or consulted them about the situation at Wiyiliin Ta. Dr Swamy said: "We continue to work with our Aboriginal partner agencies and the community". More than 300 Aboriginal children and young people are missing out on mental health care in the Hunter, insiders say, but Hunter New England Health denies the specialist clinic's "effective closure". The youngsters, aged three to 18, experience conditions like psychosis, personality disorders and extreme anxiety, along with self harm and suicidal thoughts. They had been treated at an Aboriginal-specific service at James Fletcher Hospital. The service, named Wiyiliin Ta, was now "essentially shut", a senior health professional said. Insiders said most of its 10 staff had left after a dispute with Hunter New England Health management over the running of the service. "On paper, Wiyiliin Ta appears to exist. But it's not providing direct clinical care. "This is the effective closure of a CAMHS [Child and Adolescent Mental Health Service] site." Dr Anand Swamy, Hunter New England Health's executive director, denied this. "The Wiyiliin Ta mental health service continues to deliver specialised, culturally safe mental health care for Aboriginal children and adolescents," Dr Swamy said. Hunter New England Health advertised a job last month for a "senior Aboriginal mental health clinician" at Wiyiliin Ta. The advertisement said the role would be part of "a specialised Aboriginal mental health service". "We are actively recruiting to vacancies within the Wiyiliin Ta mental health service," Dr Swamy said. "We are moving to a shared leadership model between Aboriginal Mental Health and the Child and Adolescence Mental Health Service." Wiyiliin Ta began operating in 1997. "It was the only Aboriginal-specific service in NSW for many years," an insider said. It had been based at Tara Lodge at James Fletcher Hospital for about a decade, but is no longer there. The site had an Aboriginal flag and art, bush tucker garden, smoking ceremonies and an outdoor space. "There was always a guarantee that an Aboriginal person would be involved in the treatment," an insider said. "It was integrated into the Aboriginal community as a safe entry point. Now there is no safe entry point." Dr Swamy said Wiyiliin Ta had been co-located with the Aboriginal Mental Health Service, "based primarily at Calvary Mater Newcastle". This was done to "further enhance cultural safety and support". "This move has fostered a more connected and supportive environment for our dedicated team members," Dr Swamy said. The insiders said most of the 300 children that had been treated at Wiyiliin Ta would not use "mainstream mental health services". "There's still a lot of fear for Aboriginal people linked to the history of racism and removal of children," one insider said. "We're seeing a return to an antiquated model when it comes to Aboriginal access to specialist care. "Yet there's been ongoing findings from coroners and government inquiries that Aboriginal people need specific services to meet their cultural needs." Suicide rates among Indigenous people aged up to 24 are more than three times as high as non-Indigenous Australians. Key causes of psychological distress for Aboriginal people are racism and intergenerational trauma. Wiyiliin Ta provided a "connection to culture" that helped protect young people facing complex mental health difficulties. It also helped those involved in the criminal justice system. The insiders said the health service had not informed the Aboriginal community or consulted them about the situation at Wiyiliin Ta. Dr Swamy said: "We continue to work with our Aboriginal partner agencies and the community". More than 300 Aboriginal children and young people are missing out on mental health care in the Hunter, insiders say, but Hunter New England Health denies the specialist clinic's "effective closure". The youngsters, aged three to 18, experience conditions like psychosis, personality disorders and extreme anxiety, along with self harm and suicidal thoughts. They had been treated at an Aboriginal-specific service at James Fletcher Hospital. The service, named Wiyiliin Ta, was now "essentially shut", a senior health professional said. Insiders said most of its 10 staff had left after a dispute with Hunter New England Health management over the running of the service. "On paper, Wiyiliin Ta appears to exist. But it's not providing direct clinical care. "This is the effective closure of a CAMHS [Child and Adolescent Mental Health Service] site." Dr Anand Swamy, Hunter New England Health's executive director, denied this. "The Wiyiliin Ta mental health service continues to deliver specialised, culturally safe mental health care for Aboriginal children and adolescents," Dr Swamy said. Hunter New England Health advertised a job last month for a "senior Aboriginal mental health clinician" at Wiyiliin Ta. The advertisement said the role would be part of "a specialised Aboriginal mental health service". "We are actively recruiting to vacancies within the Wiyiliin Ta mental health service," Dr Swamy said. "We are moving to a shared leadership model between Aboriginal Mental Health and the Child and Adolescence Mental Health Service." Wiyiliin Ta began operating in 1997. "It was the only Aboriginal-specific service in NSW for many years," an insider said. It had been based at Tara Lodge at James Fletcher Hospital for about a decade, but is no longer there. The site had an Aboriginal flag and art, bush tucker garden, smoking ceremonies and an outdoor space. "There was always a guarantee that an Aboriginal person would be involved in the treatment," an insider said. "It was integrated into the Aboriginal community as a safe entry point. Now there is no safe entry point." Dr Swamy said Wiyiliin Ta had been co-located with the Aboriginal Mental Health Service, "based primarily at Calvary Mater Newcastle". This was done to "further enhance cultural safety and support". "This move has fostered a more connected and supportive environment for our dedicated team members," Dr Swamy said. The insiders said most of the 300 children that had been treated at Wiyiliin Ta would not use "mainstream mental health services". "There's still a lot of fear for Aboriginal people linked to the history of racism and removal of children," one insider said. "We're seeing a return to an antiquated model when it comes to Aboriginal access to specialist care. "Yet there's been ongoing findings from coroners and government inquiries that Aboriginal people need specific services to meet their cultural needs." Suicide rates among Indigenous people aged up to 24 are more than three times as high as non-Indigenous Australians. Key causes of psychological distress for Aboriginal people are racism and intergenerational trauma. Wiyiliin Ta provided a "connection to culture" that helped protect young people facing complex mental health difficulties. It also helped those involved in the criminal justice system. The insiders said the health service had not informed the Aboriginal community or consulted them about the situation at Wiyiliin Ta. Dr Swamy said: "We continue to work with our Aboriginal partner agencies and the community". More than 300 Aboriginal children and young people are missing out on mental health care in the Hunter, insiders say, but Hunter New England Health denies the specialist clinic's "effective closure". The youngsters, aged three to 18, experience conditions like psychosis, personality disorders and extreme anxiety, along with self harm and suicidal thoughts. They had been treated at an Aboriginal-specific service at James Fletcher Hospital. The service, named Wiyiliin Ta, was now "essentially shut", a senior health professional said. Insiders said most of its 10 staff had left after a dispute with Hunter New England Health management over the running of the service. "On paper, Wiyiliin Ta appears to exist. But it's not providing direct clinical care. "This is the effective closure of a CAMHS [Child and Adolescent Mental Health Service] site." Dr Anand Swamy, Hunter New England Health's executive director, denied this. "The Wiyiliin Ta mental health service continues to deliver specialised, culturally safe mental health care for Aboriginal children and adolescents," Dr Swamy said. Hunter New England Health advertised a job last month for a "senior Aboriginal mental health clinician" at Wiyiliin Ta. The advertisement said the role would be part of "a specialised Aboriginal mental health service". "We are actively recruiting to vacancies within the Wiyiliin Ta mental health service," Dr Swamy said. "We are moving to a shared leadership model between Aboriginal Mental Health and the Child and Adolescence Mental Health Service." Wiyiliin Ta began operating in 1997. "It was the only Aboriginal-specific service in NSW for many years," an insider said. It had been based at Tara Lodge at James Fletcher Hospital for about a decade, but is no longer there. The site had an Aboriginal flag and art, bush tucker garden, smoking ceremonies and an outdoor space. "There was always a guarantee that an Aboriginal person would be involved in the treatment," an insider said. "It was integrated into the Aboriginal community as a safe entry point. Now there is no safe entry point." Dr Swamy said Wiyiliin Ta had been co-located with the Aboriginal Mental Health Service, "based primarily at Calvary Mater Newcastle". This was done to "further enhance cultural safety and support". "This move has fostered a more connected and supportive environment for our dedicated team members," Dr Swamy said. The insiders said most of the 300 children that had been treated at Wiyiliin Ta would not use "mainstream mental health services". "There's still a lot of fear for Aboriginal people linked to the history of racism and removal of children," one insider said. "We're seeing a return to an antiquated model when it comes to Aboriginal access to specialist care. "Yet there's been ongoing findings from coroners and government inquiries that Aboriginal people need specific services to meet their cultural needs." Suicide rates among Indigenous people aged up to 24 are more than three times as high as non-Indigenous Australians. Key causes of psychological distress for Aboriginal people are racism and intergenerational trauma. Wiyiliin Ta provided a "connection to culture" that helped protect young people facing complex mental health difficulties. It also helped those involved in the criminal justice system. The insiders said the health service had not informed the Aboriginal community or consulted them about the situation at Wiyiliin Ta. Dr Swamy said: "We continue to work with our Aboriginal partner agencies and the community".
