'She was a normal, healthy kid': Alara's 'heartbreaking' battle with rare disease
Alara Kelly, age five, loves blowing bubbles and watching Bluey and Peppa Pig, according to Kerri, as well as spending time with her mother and older sister.
"She's always happy, always smiling," Kerri said.
"It's impossible to get the smile off her face."
Alara, from Marulan in the NSW southern highlands, was diagnosed with Batten Disease in 2024 - an extremely rare neurodegenerative disorder with no known cure.
The fatal disease primarily affects the nervous system, resulting in progressive cognitive decline, seizures, and loss of physical function over time.
The expected lifespan for Alara's strain of the disease is between 10 and 16 years.
Alara's mother, Haylei Taylor, says watching the progression in her daughter has been heartbreaking.
"She was a normal, healthy kid before, developing like other kids," Haylei said.
"But as the disease has advanced, she's stopped and gone back the other way."
A year after the diagnosis, Alara is non-verbal, incontinent, and wheelchair-bound, and must consume food through a nasogastric tube to her stomach.
She is unable to play, read, write, or bear her own weight.
The speed of the disease's progression has been a shock to her family, but Alara is unaware of her condition due to the cognitive effects - her mind is now similar to that of an 18-month-old, according to her mother.
"That's the only good thing about it - she has no clue that it's happening," Haylei said.
"But when family comes and sees her, there's such a huge difference from one visit to the next."
Haylei says Alara's 12-year-old sister, Mackenzie, has found the process especially difficult.
Alongside her partner, Justin Sams, Haylei has done everything to ensure Alara is as comfortable as possible, with the support of Kerri and Alara's father Darcy Kelly.
Already they have secured a wheelchair and specialised car seat from the NDIS, but other essential equipment, like a shower commode, neck support, hoist, and wheeled walker, has all been loaned from the community, or need to be hired through the NDIS.
A fundraiser event, called Alara's Batten Ball, will be held at the Veolia Arena on Saturday, August 23 to help raise money for vital medical treatments and support, as well as spread awareness of the disease and Alara's story.
The ball will include a silent auction, raffle prizes, and live music from local musician Jamie Agius.
Haylei says the support of family, friends, colleagues, and the broader community has been overwhelming so far.
The fundraiser was initially intended to raise money for a bigger car to fit Alara's wheelchair, but the generous donation of a Kia Carnival from the MacDougall Foundation and Sleapy's Foundation has allowed the family to focus on securing other crucial equipment.
Haylei says the act of generosity came as an enormous shock.
"I honestly can't thank them enough," she said.
The Crescent School, where Alara is enrolled, has also been "amazing" in providing the necessary support, according to both Haylei and Kerri.
Haylei also pays tribute to her partner Justin, who has been by her side throughout the difficult journey.
"None of this would've been possible without him," she said.
Batten Disease is caused by a genetic mutation that allows cellular waste to build up in the brain. There are 13 known strains of the disorder, all with varying symptoms.
Alara's strain, called CLN6, is exceedingly rare - she is one of only two people who have been diagnosed in Australia, and only around 125 cases have been recorded worldwide.
In 2018, a revolutionary enzyme-replacement treatment for another more common strain - CLN2 - was approved in Australia, which slows the progression of the disease.
While no effective treatment for CLN6 has yet been found in Australia, Haylei and Kerri are hopeful that research for a cure continues.
But for now, the family is doing what they can to enjoy their time with Alara while giving her the support she needs.
The Taylors make regular trips from Marulan to Sydney for specialist care and to Goulburn Base Hospital whenever Alara accidentally pulls her nasogastric tube out - a common occurrence, according to her grandmother.
Kerri says the thought of losing her granddaughter is devastating.
"It's really hard to see her and know we might not have her around soon," she said
"But while she's here, we'll do what we can to make her comfortable."
Alara's Batten Ball fundraiser will begin at 5pm on Saturday, August 23 at Veolia Arena.
If you would like to donate to help support Alara and her family, please find the online GoFundMe page 'Alara's Batten Battle.'
Kerri Taylor smiles when she talks of her granddaughter, Alara.
Alara Kelly, age five, loves blowing bubbles and watching Bluey and Peppa Pig, according to Kerri, as well as spending time with her mother and older sister.
"She's always happy, always smiling," Kerri said.
"It's impossible to get the smile off her face."
Alara, from Marulan in the NSW southern highlands, was diagnosed with Batten Disease in 2024 - an extremely rare neurodegenerative disorder with no known cure.
The fatal disease primarily affects the nervous system, resulting in progressive cognitive decline, seizures, and loss of physical function over time.
The expected lifespan for Alara's strain of the disease is between 10 and 16 years.
Alara's mother, Haylei Taylor, says watching the progression in her daughter has been heartbreaking.
"She was a normal, healthy kid before, developing like other kids," Haylei said.
"But as the disease has advanced, she's stopped and gone back the other way."
A year after the diagnosis, Alara is non-verbal, incontinent, and wheelchair-bound, and must consume food through a nasogastric tube to her stomach.
She is unable to play, read, write, or bear her own weight.
The speed of the disease's progression has been a shock to her family, but Alara is unaware of her condition due to the cognitive effects - her mind is now similar to that of an 18-month-old, according to her mother.
"That's the only good thing about it - she has no clue that it's happening," Haylei said.
"But when family comes and sees her, there's such a huge difference from one visit to the next."
Haylei says Alara's 12-year-old sister, Mackenzie, has found the process especially difficult.
Alongside her partner, Justin Sams, Haylei has done everything to ensure Alara is as comfortable as possible, with the support of Kerri and Alara's father Darcy Kelly.
Already they have secured a wheelchair and specialised car seat from the NDIS, but other essential equipment, like a shower commode, neck support, hoist, and wheeled walker, has all been loaned from the community, or need to be hired through the NDIS.
A fundraiser event, called Alara's Batten Ball, will be held at the Veolia Arena on Saturday, August 23 to help raise money for vital medical treatments and support, as well as spread awareness of the disease and Alara's story.
The ball will include a silent auction, raffle prizes, and live music from local musician Jamie Agius.
Haylei says the support of family, friends, colleagues, and the broader community has been overwhelming so far.
The fundraiser was initially intended to raise money for a bigger car to fit Alara's wheelchair, but the generous donation of a Kia Carnival from the MacDougall Foundation and Sleapy's Foundation has allowed the family to focus on securing other crucial equipment.
Haylei says the act of generosity came as an enormous shock.
"I honestly can't thank them enough," she said.
The Crescent School, where Alara is enrolled, has also been "amazing" in providing the necessary support, according to both Haylei and Kerri.
Haylei also pays tribute to her partner Justin, who has been by her side throughout the difficult journey.
"None of this would've been possible without him," she said.
Batten Disease is caused by a genetic mutation that allows cellular waste to build up in the brain. There are 13 known strains of the disorder, all with varying symptoms.
Alara's strain, called CLN6, is exceedingly rare - she is one of only two people who have been diagnosed in Australia, and only around 125 cases have been recorded worldwide.
In 2018, a revolutionary enzyme-replacement treatment for another more common strain - CLN2 - was approved in Australia, which slows the progression of the disease.
While no effective treatment for CLN6 has yet been found in Australia, Haylei and Kerri are hopeful that research for a cure continues.
But for now, the family is doing what they can to enjoy their time with Alara while giving her the support she needs.
The Taylors make regular trips from Marulan to Sydney for specialist care and to Goulburn Base Hospital whenever Alara accidentally pulls her nasogastric tube out - a common occurrence, according to her grandmother.
Kerri says the thought of losing her granddaughter is devastating.
"It's really hard to see her and know we might not have her around soon," she said
"But while she's here, we'll do what we can to make her comfortable."
Alara's Batten Ball fundraiser will begin at 5pm on Saturday, August 23 at Veolia Arena.
If you would like to donate to help support Alara and her family, please find the online GoFundMe page 'Alara's Batten Battle.'
Kerri Taylor smiles when she talks of her granddaughter, Alara.
Alara Kelly, age five, loves blowing bubbles and watching Bluey and Peppa Pig, according to Kerri, as well as spending time with her mother and older sister.
"She's always happy, always smiling," Kerri said.
"It's impossible to get the smile off her face."
Alara, from Marulan in the NSW southern highlands, was diagnosed with Batten Disease in 2024 - an extremely rare neurodegenerative disorder with no known cure.
The fatal disease primarily affects the nervous system, resulting in progressive cognitive decline, seizures, and loss of physical function over time.
The expected lifespan for Alara's strain of the disease is between 10 and 16 years.
Alara's mother, Haylei Taylor, says watching the progression in her daughter has been heartbreaking.
"She was a normal, healthy kid before, developing like other kids," Haylei said.
"But as the disease has advanced, she's stopped and gone back the other way."
A year after the diagnosis, Alara is non-verbal, incontinent, and wheelchair-bound, and must consume food through a nasogastric tube to her stomach.
She is unable to play, read, write, or bear her own weight.
The speed of the disease's progression has been a shock to her family, but Alara is unaware of her condition due to the cognitive effects - her mind is now similar to that of an 18-month-old, according to her mother.
"That's the only good thing about it - she has no clue that it's happening," Haylei said.
"But when family comes and sees her, there's such a huge difference from one visit to the next."
Haylei says Alara's 12-year-old sister, Mackenzie, has found the process especially difficult.
Alongside her partner, Justin Sams, Haylei has done everything to ensure Alara is as comfortable as possible, with the support of Kerri and Alara's father Darcy Kelly.
Already they have secured a wheelchair and specialised car seat from the NDIS, but other essential equipment, like a shower commode, neck support, hoist, and wheeled walker, has all been loaned from the community, or need to be hired through the NDIS.
A fundraiser event, called Alara's Batten Ball, will be held at the Veolia Arena on Saturday, August 23 to help raise money for vital medical treatments and support, as well as spread awareness of the disease and Alara's story.
The ball will include a silent auction, raffle prizes, and live music from local musician Jamie Agius.
Haylei says the support of family, friends, colleagues, and the broader community has been overwhelming so far.
The fundraiser was initially intended to raise money for a bigger car to fit Alara's wheelchair, but the generous donation of a Kia Carnival from the MacDougall Foundation and Sleapy's Foundation has allowed the family to focus on securing other crucial equipment.
Haylei says the act of generosity came as an enormous shock.
"I honestly can't thank them enough," she said.
The Crescent School, where Alara is enrolled, has also been "amazing" in providing the necessary support, according to both Haylei and Kerri.
Haylei also pays tribute to her partner Justin, who has been by her side throughout the difficult journey.
"None of this would've been possible without him," she said.
Batten Disease is caused by a genetic mutation that allows cellular waste to build up in the brain. There are 13 known strains of the disorder, all with varying symptoms.
Alara's strain, called CLN6, is exceedingly rare - she is one of only two people who have been diagnosed in Australia, and only around 125 cases have been recorded worldwide.
In 2018, a revolutionary enzyme-replacement treatment for another more common strain - CLN2 - was approved in Australia, which slows the progression of the disease.
While no effective treatment for CLN6 has yet been found in Australia, Haylei and Kerri are hopeful that research for a cure continues.
But for now, the family is doing what they can to enjoy their time with Alara while giving her the support she needs.
The Taylors make regular trips from Marulan to Sydney for specialist care and to Goulburn Base Hospital whenever Alara accidentally pulls her nasogastric tube out - a common occurrence, according to her grandmother.
Kerri says the thought of losing her granddaughter is devastating.
"It's really hard to see her and know we might not have her around soon," she said
"But while she's here, we'll do what we can to make her comfortable."
Alara's Batten Ball fundraiser will begin at 5pm on Saturday, August 23 at Veolia Arena.
If you would like to donate to help support Alara and her family, please find the online GoFundMe page 'Alara's Batten Battle.'
Kerri Taylor smiles when she talks of her granddaughter, Alara.
Alara Kelly, age five, loves blowing bubbles and watching Bluey and Peppa Pig, according to Kerri, as well as spending time with her mother and older sister.
"She's always happy, always smiling," Kerri said.
"It's impossible to get the smile off her face."
Alara, from Marulan in the NSW southern highlands, was diagnosed with Batten Disease in 2024 - an extremely rare neurodegenerative disorder with no known cure.
The fatal disease primarily affects the nervous system, resulting in progressive cognitive decline, seizures, and loss of physical function over time.
The expected lifespan for Alara's strain of the disease is between 10 and 16 years.
Alara's mother, Haylei Taylor, says watching the progression in her daughter has been heartbreaking.
"She was a normal, healthy kid before, developing like other kids," Haylei said.
"But as the disease has advanced, she's stopped and gone back the other way."
A year after the diagnosis, Alara is non-verbal, incontinent, and wheelchair-bound, and must consume food through a nasogastric tube to her stomach.
She is unable to play, read, write, or bear her own weight.
The speed of the disease's progression has been a shock to her family, but Alara is unaware of her condition due to the cognitive effects - her mind is now similar to that of an 18-month-old, according to her mother.
"That's the only good thing about it - she has no clue that it's happening," Haylei said.
"But when family comes and sees her, there's such a huge difference from one visit to the next."
Haylei says Alara's 12-year-old sister, Mackenzie, has found the process especially difficult.
Alongside her partner, Justin Sams, Haylei has done everything to ensure Alara is as comfortable as possible, with the support of Kerri and Alara's father Darcy Kelly.
Already they have secured a wheelchair and specialised car seat from the NDIS, but other essential equipment, like a shower commode, neck support, hoist, and wheeled walker, has all been loaned from the community, or need to be hired through the NDIS.
A fundraiser event, called Alara's Batten Ball, will be held at the Veolia Arena on Saturday, August 23 to help raise money for vital medical treatments and support, as well as spread awareness of the disease and Alara's story.
The ball will include a silent auction, raffle prizes, and live music from local musician Jamie Agius.
Haylei says the support of family, friends, colleagues, and the broader community has been overwhelming so far.
The fundraiser was initially intended to raise money for a bigger car to fit Alara's wheelchair, but the generous donation of a Kia Carnival from the MacDougall Foundation and Sleapy's Foundation has allowed the family to focus on securing other crucial equipment.
Haylei says the act of generosity came as an enormous shock.
"I honestly can't thank them enough," she said.
The Crescent School, where Alara is enrolled, has also been "amazing" in providing the necessary support, according to both Haylei and Kerri.
Haylei also pays tribute to her partner Justin, who has been by her side throughout the difficult journey.
"None of this would've been possible without him," she said.
Batten Disease is caused by a genetic mutation that allows cellular waste to build up in the brain. There are 13 known strains of the disorder, all with varying symptoms.
Alara's strain, called CLN6, is exceedingly rare - she is one of only two people who have been diagnosed in Australia, and only around 125 cases have been recorded worldwide.
In 2018, a revolutionary enzyme-replacement treatment for another more common strain - CLN2 - was approved in Australia, which slows the progression of the disease.
While no effective treatment for CLN6 has yet been found in Australia, Haylei and Kerri are hopeful that research for a cure continues.
But for now, the family is doing what they can to enjoy their time with Alara while giving her the support she needs.
The Taylors make regular trips from Marulan to Sydney for specialist care and to Goulburn Base Hospital whenever Alara accidentally pulls her nasogastric tube out - a common occurrence, according to her grandmother.
Kerri says the thought of losing her granddaughter is devastating.
"It's really hard to see her and know we might not have her around soon," she said
"But while she's here, we'll do what we can to make her comfortable."
Alara's Batten Ball fundraiser will begin at 5pm on Saturday, August 23 at Veolia Arena.
If you would like to donate to help support Alara and her family, please find the online GoFundMe page 'Alara's Batten Battle.'
Hashtags
Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles
The Advertiser
3 days ago
- The Advertiser
Donna and her daughter are homeless, sharing a bed in a bus without power
Marcia Goody has a lot of empathy, her mum says, but is not being shown the same in return. Donna Wall has been her 33-year-old daughter's full-time carer for the past 12 months, and since March, the pair have been homeless, but it's not for lack of trying. Ms Wall from Penguin in north-west Tasmania said she had applied for about 100 rentals, is on the waitlist for social housing, has engaged with Housing Connect, and has exhausted all other appropriate avenues. "We did not realise how difficult it would be to get another house," she said of the decision to move out of her previous home, which was no longer suitable. "Probably in hindsight, I don't know if we would have ended the lease, knowing what I know now." Since then, the dermal therapist has moved between caravan parks, a bed and breakfast, short-term accommodation organised by a church, and has house-sat for friends. For the past month, she and her daughter have been based on the grounds of a church, living in a bus with limited access to facilities, and currently without power. Ms Wall said their situation was made all the more complicated by her daughter's complex health needs and hospital admissions. Ms Goody, an NDIS participant, has been diagnosed with depression, dissociative identity disorder, post-traumatic stress disorder, endometriosis, and type 2 diabetes. Growing up, Ms Wall said her daughter craved stability, and moving house or school did not have a good impact on her, which remains the case today. "It's hard because it's more to do with my daughter and her needs above what I'm going through," she said. "After all the trauma that she's been through... and the fact it's been such a long time that we've had to wait... it's pretty abysmal basically." Up until last month, Ms Wall relied on public transport to get to and from work and to attend house inspections, which she said was "a nightmare". When they purchased a car, Ms Goody decided to sleep in it for about a week before the cold became too much and she moved into the bus with her mum, where they share a bed each night. Although unable to comment on specific applications, Homes Tasmania CEO Eleri Morgan-Thomas said there were many Tasmanians turning to social housing. "Homes Tasmania is committed to prioritising housing fairly, ensuring that people in greatest need receive housing offers first," she said. Ms Wall disagreed and said she believed her daughter's complex mental health needs should make them a priority. Without appropriate housing, Ms Wall was told by a social worker that the likelihood of her daughter's physical and mental health declining was high. "We need something now, not a month... we've waited long enough," she said. Stable housing would also put Ms Wall "back on track" and allow the dermal therapist to return to work and complete her associate degree in health and wellness, which she is undertaking part-time. In response to questions, Housing Minister Felix Ellis said the government was "working tirelessly" to address the needs of the thousands of people on the housing register. Ms Wall said she had contacted Mr Ellis three times and was told each time that her letter was forwarded to Homes Tasmania. "Our hearts go out to Ms Wall and her daughter, Ms Goody, and to all Tasmanians experiencing homelessness," Mr Ellis said. Ms Wall said she blamed the housing crisis on the government's "mismanagement". "I would also say to the government, stop using vulnerable people's suffering as a political talking point," she said. "They need to actually come and meet with the people, walk a day in our shoes, for goodness' sake." If you or someone you know has been affected by this story, please contact: Marcia Goody has a lot of empathy, her mum says, but is not being shown the same in return. Donna Wall has been her 33-year-old daughter's full-time carer for the past 12 months, and since March, the pair have been homeless, but it's not for lack of trying. Ms Wall from Penguin in north-west Tasmania said she had applied for about 100 rentals, is on the waitlist for social housing, has engaged with Housing Connect, and has exhausted all other appropriate avenues. "We did not realise how difficult it would be to get another house," she said of the decision to move out of her previous home, which was no longer suitable. "Probably in hindsight, I don't know if we would have ended the lease, knowing what I know now." Since then, the dermal therapist has moved between caravan parks, a bed and breakfast, short-term accommodation organised by a church, and has house-sat for friends. For the past month, she and her daughter have been based on the grounds of a church, living in a bus with limited access to facilities, and currently without power. Ms Wall said their situation was made all the more complicated by her daughter's complex health needs and hospital admissions. Ms Goody, an NDIS participant, has been diagnosed with depression, dissociative identity disorder, post-traumatic stress disorder, endometriosis, and type 2 diabetes. Growing up, Ms Wall said her daughter craved stability, and moving house or school did not have a good impact on her, which remains the case today. "It's hard because it's more to do with my daughter and her needs above what I'm going through," she said. "After all the trauma that she's been through... and the fact it's been such a long time that we've had to wait... it's pretty abysmal basically." Up until last month, Ms Wall relied on public transport to get to and from work and to attend house inspections, which she said was "a nightmare". When they purchased a car, Ms Goody decided to sleep in it for about a week before the cold became too much and she moved into the bus with her mum, where they share a bed each night. Although unable to comment on specific applications, Homes Tasmania CEO Eleri Morgan-Thomas said there were many Tasmanians turning to social housing. "Homes Tasmania is committed to prioritising housing fairly, ensuring that people in greatest need receive housing offers first," she said. Ms Wall disagreed and said she believed her daughter's complex mental health needs should make them a priority. Without appropriate housing, Ms Wall was told by a social worker that the likelihood of her daughter's physical and mental health declining was high. "We need something now, not a month... we've waited long enough," she said. Stable housing would also put Ms Wall "back on track" and allow the dermal therapist to return to work and complete her associate degree in health and wellness, which she is undertaking part-time. In response to questions, Housing Minister Felix Ellis said the government was "working tirelessly" to address the needs of the thousands of people on the housing register. Ms Wall said she had contacted Mr Ellis three times and was told each time that her letter was forwarded to Homes Tasmania. "Our hearts go out to Ms Wall and her daughter, Ms Goody, and to all Tasmanians experiencing homelessness," Mr Ellis said. Ms Wall said she blamed the housing crisis on the government's "mismanagement". "I would also say to the government, stop using vulnerable people's suffering as a political talking point," she said. "They need to actually come and meet with the people, walk a day in our shoes, for goodness' sake." If you or someone you know has been affected by this story, please contact: Marcia Goody has a lot of empathy, her mum says, but is not being shown the same in return. Donna Wall has been her 33-year-old daughter's full-time carer for the past 12 months, and since March, the pair have been homeless, but it's not for lack of trying. Ms Wall from Penguin in north-west Tasmania said she had applied for about 100 rentals, is on the waitlist for social housing, has engaged with Housing Connect, and has exhausted all other appropriate avenues. "We did not realise how difficult it would be to get another house," she said of the decision to move out of her previous home, which was no longer suitable. "Probably in hindsight, I don't know if we would have ended the lease, knowing what I know now." Since then, the dermal therapist has moved between caravan parks, a bed and breakfast, short-term accommodation organised by a church, and has house-sat for friends. For the past month, she and her daughter have been based on the grounds of a church, living in a bus with limited access to facilities, and currently without power. Ms Wall said their situation was made all the more complicated by her daughter's complex health needs and hospital admissions. Ms Goody, an NDIS participant, has been diagnosed with depression, dissociative identity disorder, post-traumatic stress disorder, endometriosis, and type 2 diabetes. Growing up, Ms Wall said her daughter craved stability, and moving house or school did not have a good impact on her, which remains the case today. "It's hard because it's more to do with my daughter and her needs above what I'm going through," she said. "After all the trauma that she's been through... and the fact it's been such a long time that we've had to wait... it's pretty abysmal basically." Up until last month, Ms Wall relied on public transport to get to and from work and to attend house inspections, which she said was "a nightmare". When they purchased a car, Ms Goody decided to sleep in it for about a week before the cold became too much and she moved into the bus with her mum, where they share a bed each night. Although unable to comment on specific applications, Homes Tasmania CEO Eleri Morgan-Thomas said there were many Tasmanians turning to social housing. "Homes Tasmania is committed to prioritising housing fairly, ensuring that people in greatest need receive housing offers first," she said. Ms Wall disagreed and said she believed her daughter's complex mental health needs should make them a priority. Without appropriate housing, Ms Wall was told by a social worker that the likelihood of her daughter's physical and mental health declining was high. "We need something now, not a month... we've waited long enough," she said. Stable housing would also put Ms Wall "back on track" and allow the dermal therapist to return to work and complete her associate degree in health and wellness, which she is undertaking part-time. In response to questions, Housing Minister Felix Ellis said the government was "working tirelessly" to address the needs of the thousands of people on the housing register. Ms Wall said she had contacted Mr Ellis three times and was told each time that her letter was forwarded to Homes Tasmania. "Our hearts go out to Ms Wall and her daughter, Ms Goody, and to all Tasmanians experiencing homelessness," Mr Ellis said. Ms Wall said she blamed the housing crisis on the government's "mismanagement". "I would also say to the government, stop using vulnerable people's suffering as a political talking point," she said. "They need to actually come and meet with the people, walk a day in our shoes, for goodness' sake." If you or someone you know has been affected by this story, please contact: Marcia Goody has a lot of empathy, her mum says, but is not being shown the same in return. Donna Wall has been her 33-year-old daughter's full-time carer for the past 12 months, and since March, the pair have been homeless, but it's not for lack of trying. Ms Wall from Penguin in north-west Tasmania said she had applied for about 100 rentals, is on the waitlist for social housing, has engaged with Housing Connect, and has exhausted all other appropriate avenues. "We did not realise how difficult it would be to get another house," she said of the decision to move out of her previous home, which was no longer suitable. "Probably in hindsight, I don't know if we would have ended the lease, knowing what I know now." Since then, the dermal therapist has moved between caravan parks, a bed and breakfast, short-term accommodation organised by a church, and has house-sat for friends. For the past month, she and her daughter have been based on the grounds of a church, living in a bus with limited access to facilities, and currently without power. Ms Wall said their situation was made all the more complicated by her daughter's complex health needs and hospital admissions. Ms Goody, an NDIS participant, has been diagnosed with depression, dissociative identity disorder, post-traumatic stress disorder, endometriosis, and type 2 diabetes. Growing up, Ms Wall said her daughter craved stability, and moving house or school did not have a good impact on her, which remains the case today. "It's hard because it's more to do with my daughter and her needs above what I'm going through," she said. "After all the trauma that she's been through... and the fact it's been such a long time that we've had to wait... it's pretty abysmal basically." Up until last month, Ms Wall relied on public transport to get to and from work and to attend house inspections, which she said was "a nightmare". When they purchased a car, Ms Goody decided to sleep in it for about a week before the cold became too much and she moved into the bus with her mum, where they share a bed each night. Although unable to comment on specific applications, Homes Tasmania CEO Eleri Morgan-Thomas said there were many Tasmanians turning to social housing. "Homes Tasmania is committed to prioritising housing fairly, ensuring that people in greatest need receive housing offers first," she said. Ms Wall disagreed and said she believed her daughter's complex mental health needs should make them a priority. Without appropriate housing, Ms Wall was told by a social worker that the likelihood of her daughter's physical and mental health declining was high. "We need something now, not a month... we've waited long enough," she said. Stable housing would also put Ms Wall "back on track" and allow the dermal therapist to return to work and complete her associate degree in health and wellness, which she is undertaking part-time. In response to questions, Housing Minister Felix Ellis said the government was "working tirelessly" to address the needs of the thousands of people on the housing register. Ms Wall said she had contacted Mr Ellis three times and was told each time that her letter was forwarded to Homes Tasmania. "Our hearts go out to Ms Wall and her daughter, Ms Goody, and to all Tasmanians experiencing homelessness," Mr Ellis said. Ms Wall said she blamed the housing crisis on the government's "mismanagement". "I would also say to the government, stop using vulnerable people's suffering as a political talking point," she said. "They need to actually come and meet with the people, walk a day in our shoes, for goodness' sake." If you or someone you know has been affected by this story, please contact:
The Advertiser
26-07-2025
- The Advertiser
'They would withdraw care': cracks in NDIS costing Hunter families thousands
IT'S the system meant to offer them a safety net, but a funding crackdown is leaving some National Disability Insurance Scheme participants falling through the cracks. NDIS participants are being put at risk with lengthy delays and questionable decisions endangering the lives of those left without funded support and nowhere to go. Hospitals have become a last resort while families and service providers are being stranded with hefty bills into the tens of thousands of dollars. Industry insiders say that a broad-brush approach to a system-wide crackdown on NDIS spending is robbing those who genuinely rely on it. In two separate cases reported to the Newcastle Herald, people living with quadraplegia have had to rely on the goodwill of service providers for hands-on, life-sustaining care. Those service providers, and the families of those individuals, are paying out-of-pocket to ensure those supports remain in place. So far they have been unable to recover those costs due to what they describe as a combination of bureaucratic red tape, a lack of training and oversight, and the unavailability of NDIS staff with the experience, knowledge, or authority to address or escalate issues in a timely way. In the case of 52-year-old Jamie Phillips of Bolton Point, heavily reliant on his partner as well as funded supports, his NDIS journey has been difficult form the start. Karen Johnson, 58, works full-time as well as being Mr Phillips' full-time carer seven nights per week, starting at 4.30pm each day when she gets home from work. Night time care involves hoisting Mr Phillips out of bed and into a chair, onto a commode, in and out of the shower, into fresh clothes and hoisting him back onto the bed. He requires special boots, a CPAP machine, medications at 8pm and 11pm, and a catheter. She is preparing to purchase a $10,000 bed to enable her to sleep in the same room. "For three years he's been living in our loungeroom, he gets dressed there, he gets wheeled through the house naked to get showered, and wheeled back to go to bed," she said. Mr Phillips became a quadraplegic in 2022 after a botched medical procedure almost took his life, she said. He became an NDIS participant in December the same year. "Every plan we've had, we've had an issue with," Ms Johnson said. "It was underfunded or incorrectly funded, then last year his funding fell short. We had two agencies involved, both of them kept working for us without getting paid up until one who we paid because they said if we didn't pay they would withdraw their care." That was a bill for $21,000. The second company, which continued to provide services, has never been paid, she said, to the tune of about $15,000. "They just didn't get their money," Ms Johnson said. "This year Jamie got compensation for medical malpractice, so when we got the compensation, we had to pay back $1.9 million back to NDIS because that's the money they paid for him in the two years prior," she said. According to the civil court, compensation is calculated on the assumption that a quadraplegic has a life expectancy of eight years post-injury, but according to the NDIS it's about 22 years, Ms Johnson said. "So they took the $1.9 million and his funding will be cut down by around about $100,000 per year while he's alive, and so while we we're talking to them about that, that lady said she wasn't involved in the section where we could get our money back, and we've just never heard anything more about it." Mr Phillips has also lost out on occupational therapy due to NDIS-related cuts to allied health services impacting in-home care, Ms Johnson said. Jonathan Castellan, also a quadraplegic, was wheeled into the NDIS office at Charlestown earlier this month by support workers desperate to help him get the funding he needed. Already thousands of dollars out-of-pocket, it has been the dedication of those support workers that has kept Mr Castellan alive. "They didn't seem to understand how he couldn't spend a few days at home by himself," his sister, who did not wish to be named, told the Herald. Mr Castellan, 63, lives with quadraplegia following a spinal cord injury, as well as autism and dysphasia. He is catheterised and requires 24-hour care, but his sister said that due to an escalation in his care needs after a hospital stay, which meant he needed more support overnight, he ran out of funding. While the likelihood that he would run out of funding on that basis had been raised with the NDIS beforehand, delays meant his carers had no choice but to work without pay, she said. "You cannot ring the NDIS and speak to anyone who can actually do anything," an associated carer said. "They can't even escalate it and say to someone that we've got this major problem here - even if it was to release funding so we could continue caring for him until they can sort it out. "They don't read the reports. They will spend more money fighting the wheelchair than it would cost to buy the wheelchair." In both cases, family members and care teams considered hospitalisation as an option, but already hospitals are struggling with aged care and NDIS bedblock, and have pushed back. A spokesperson for the National Disability Insurance Agency (NDIA), which governs the scheme, said the safety and welfare of NDIS participants was its "top priority". "While providers should be spending within a participant's funded support levels, the agency can prioritise requests for further funding, when there is a risk to a participant through a change in their circumstances," the spokesperson said. "In these cases, the NDIA will work closely with participants and review supporting evidence to ensure participant safety." It is understood the NDIA disputes the sequence of events as relayed by family members and support workers, and said that the required level of supporting evidence had not been submitted. Further, while the agency can prioritise requests for increased supports when there is a risk to a participant through a change in their circumstances, early exhaustion of plan funding does not automatically initiate a plan review or the approval of a new NDIS plan. The Herald has reported rising levels of aged care and NDIS bedblock, which has increased by more than 40 per cent across Hunter hospitals since March, further exacerbating the issue as hospitals battle to find enough beds and staff to man them. IT'S the system meant to offer them a safety net, but a funding crackdown is leaving some National Disability Insurance Scheme participants falling through the cracks. NDIS participants are being put at risk with lengthy delays and questionable decisions endangering the lives of those left without funded support and nowhere to go. Hospitals have become a last resort while families and service providers are being stranded with hefty bills into the tens of thousands of dollars. Industry insiders say that a broad-brush approach to a system-wide crackdown on NDIS spending is robbing those who genuinely rely on it. In two separate cases reported to the Newcastle Herald, people living with quadraplegia have had to rely on the goodwill of service providers for hands-on, life-sustaining care. Those service providers, and the families of those individuals, are paying out-of-pocket to ensure those supports remain in place. So far they have been unable to recover those costs due to what they describe as a combination of bureaucratic red tape, a lack of training and oversight, and the unavailability of NDIS staff with the experience, knowledge, or authority to address or escalate issues in a timely way. In the case of 52-year-old Jamie Phillips of Bolton Point, heavily reliant on his partner as well as funded supports, his NDIS journey has been difficult form the start. Karen Johnson, 58, works full-time as well as being Mr Phillips' full-time carer seven nights per week, starting at 4.30pm each day when she gets home from work. Night time care involves hoisting Mr Phillips out of bed and into a chair, onto a commode, in and out of the shower, into fresh clothes and hoisting him back onto the bed. He requires special boots, a CPAP machine, medications at 8pm and 11pm, and a catheter. She is preparing to purchase a $10,000 bed to enable her to sleep in the same room. "For three years he's been living in our loungeroom, he gets dressed there, he gets wheeled through the house naked to get showered, and wheeled back to go to bed," she said. Mr Phillips became a quadraplegic in 2022 after a botched medical procedure almost took his life, she said. He became an NDIS participant in December the same year. "Every plan we've had, we've had an issue with," Ms Johnson said. "It was underfunded or incorrectly funded, then last year his funding fell short. We had two agencies involved, both of them kept working for us without getting paid up until one who we paid because they said if we didn't pay they would withdraw their care." That was a bill for $21,000. The second company, which continued to provide services, has never been paid, she said, to the tune of about $15,000. "They just didn't get their money," Ms Johnson said. "This year Jamie got compensation for medical malpractice, so when we got the compensation, we had to pay back $1.9 million back to NDIS because that's the money they paid for him in the two years prior," she said. According to the civil court, compensation is calculated on the assumption that a quadraplegic has a life expectancy of eight years post-injury, but according to the NDIS it's about 22 years, Ms Johnson said. "So they took the $1.9 million and his funding will be cut down by around about $100,000 per year while he's alive, and so while we we're talking to them about that, that lady said she wasn't involved in the section where we could get our money back, and we've just never heard anything more about it." Mr Phillips has also lost out on occupational therapy due to NDIS-related cuts to allied health services impacting in-home care, Ms Johnson said. Jonathan Castellan, also a quadraplegic, was wheeled into the NDIS office at Charlestown earlier this month by support workers desperate to help him get the funding he needed. Already thousands of dollars out-of-pocket, it has been the dedication of those support workers that has kept Mr Castellan alive. "They didn't seem to understand how he couldn't spend a few days at home by himself," his sister, who did not wish to be named, told the Herald. Mr Castellan, 63, lives with quadraplegia following a spinal cord injury, as well as autism and dysphasia. He is catheterised and requires 24-hour care, but his sister said that due to an escalation in his care needs after a hospital stay, which meant he needed more support overnight, he ran out of funding. While the likelihood that he would run out of funding on that basis had been raised with the NDIS beforehand, delays meant his carers had no choice but to work without pay, she said. "You cannot ring the NDIS and speak to anyone who can actually do anything," an associated carer said. "They can't even escalate it and say to someone that we've got this major problem here - even if it was to release funding so we could continue caring for him until they can sort it out. "They don't read the reports. They will spend more money fighting the wheelchair than it would cost to buy the wheelchair." In both cases, family members and care teams considered hospitalisation as an option, but already hospitals are struggling with aged care and NDIS bedblock, and have pushed back. A spokesperson for the National Disability Insurance Agency (NDIA), which governs the scheme, said the safety and welfare of NDIS participants was its "top priority". "While providers should be spending within a participant's funded support levels, the agency can prioritise requests for further funding, when there is a risk to a participant through a change in their circumstances," the spokesperson said. "In these cases, the NDIA will work closely with participants and review supporting evidence to ensure participant safety." It is understood the NDIA disputes the sequence of events as relayed by family members and support workers, and said that the required level of supporting evidence had not been submitted. Further, while the agency can prioritise requests for increased supports when there is a risk to a participant through a change in their circumstances, early exhaustion of plan funding does not automatically initiate a plan review or the approval of a new NDIS plan. The Herald has reported rising levels of aged care and NDIS bedblock, which has increased by more than 40 per cent across Hunter hospitals since March, further exacerbating the issue as hospitals battle to find enough beds and staff to man them. IT'S the system meant to offer them a safety net, but a funding crackdown is leaving some National Disability Insurance Scheme participants falling through the cracks. NDIS participants are being put at risk with lengthy delays and questionable decisions endangering the lives of those left without funded support and nowhere to go. Hospitals have become a last resort while families and service providers are being stranded with hefty bills into the tens of thousands of dollars. Industry insiders say that a broad-brush approach to a system-wide crackdown on NDIS spending is robbing those who genuinely rely on it. In two separate cases reported to the Newcastle Herald, people living with quadraplegia have had to rely on the goodwill of service providers for hands-on, life-sustaining care. Those service providers, and the families of those individuals, are paying out-of-pocket to ensure those supports remain in place. So far they have been unable to recover those costs due to what they describe as a combination of bureaucratic red tape, a lack of training and oversight, and the unavailability of NDIS staff with the experience, knowledge, or authority to address or escalate issues in a timely way. In the case of 52-year-old Jamie Phillips of Bolton Point, heavily reliant on his partner as well as funded supports, his NDIS journey has been difficult form the start. Karen Johnson, 58, works full-time as well as being Mr Phillips' full-time carer seven nights per week, starting at 4.30pm each day when she gets home from work. Night time care involves hoisting Mr Phillips out of bed and into a chair, onto a commode, in and out of the shower, into fresh clothes and hoisting him back onto the bed. He requires special boots, a CPAP machine, medications at 8pm and 11pm, and a catheter. She is preparing to purchase a $10,000 bed to enable her to sleep in the same room. "For three years he's been living in our loungeroom, he gets dressed there, he gets wheeled through the house naked to get showered, and wheeled back to go to bed," she said. Mr Phillips became a quadraplegic in 2022 after a botched medical procedure almost took his life, she said. He became an NDIS participant in December the same year. "Every plan we've had, we've had an issue with," Ms Johnson said. "It was underfunded or incorrectly funded, then last year his funding fell short. We had two agencies involved, both of them kept working for us without getting paid up until one who we paid because they said if we didn't pay they would withdraw their care." That was a bill for $21,000. The second company, which continued to provide services, has never been paid, she said, to the tune of about $15,000. "They just didn't get their money," Ms Johnson said. "This year Jamie got compensation for medical malpractice, so when we got the compensation, we had to pay back $1.9 million back to NDIS because that's the money they paid for him in the two years prior," she said. According to the civil court, compensation is calculated on the assumption that a quadraplegic has a life expectancy of eight years post-injury, but according to the NDIS it's about 22 years, Ms Johnson said. "So they took the $1.9 million and his funding will be cut down by around about $100,000 per year while he's alive, and so while we we're talking to them about that, that lady said she wasn't involved in the section where we could get our money back, and we've just never heard anything more about it." Mr Phillips has also lost out on occupational therapy due to NDIS-related cuts to allied health services impacting in-home care, Ms Johnson said. Jonathan Castellan, also a quadraplegic, was wheeled into the NDIS office at Charlestown earlier this month by support workers desperate to help him get the funding he needed. Already thousands of dollars out-of-pocket, it has been the dedication of those support workers that has kept Mr Castellan alive. "They didn't seem to understand how he couldn't spend a few days at home by himself," his sister, who did not wish to be named, told the Herald. Mr Castellan, 63, lives with quadraplegia following a spinal cord injury, as well as autism and dysphasia. He is catheterised and requires 24-hour care, but his sister said that due to an escalation in his care needs after a hospital stay, which meant he needed more support overnight, he ran out of funding. While the likelihood that he would run out of funding on that basis had been raised with the NDIS beforehand, delays meant his carers had no choice but to work without pay, she said. "You cannot ring the NDIS and speak to anyone who can actually do anything," an associated carer said. "They can't even escalate it and say to someone that we've got this major problem here - even if it was to release funding so we could continue caring for him until they can sort it out. "They don't read the reports. They will spend more money fighting the wheelchair than it would cost to buy the wheelchair." In both cases, family members and care teams considered hospitalisation as an option, but already hospitals are struggling with aged care and NDIS bedblock, and have pushed back. A spokesperson for the National Disability Insurance Agency (NDIA), which governs the scheme, said the safety and welfare of NDIS participants was its "top priority". "While providers should be spending within a participant's funded support levels, the agency can prioritise requests for further funding, when there is a risk to a participant through a change in their circumstances," the spokesperson said. "In these cases, the NDIA will work closely with participants and review supporting evidence to ensure participant safety." It is understood the NDIA disputes the sequence of events as relayed by family members and support workers, and said that the required level of supporting evidence had not been submitted. Further, while the agency can prioritise requests for increased supports when there is a risk to a participant through a change in their circumstances, early exhaustion of plan funding does not automatically initiate a plan review or the approval of a new NDIS plan. The Herald has reported rising levels of aged care and NDIS bedblock, which has increased by more than 40 per cent across Hunter hospitals since March, further exacerbating the issue as hospitals battle to find enough beds and staff to man them. IT'S the system meant to offer them a safety net, but a funding crackdown is leaving some National Disability Insurance Scheme participants falling through the cracks. NDIS participants are being put at risk with lengthy delays and questionable decisions endangering the lives of those left without funded support and nowhere to go. Hospitals have become a last resort while families and service providers are being stranded with hefty bills into the tens of thousands of dollars. Industry insiders say that a broad-brush approach to a system-wide crackdown on NDIS spending is robbing those who genuinely rely on it. In two separate cases reported to the Newcastle Herald, people living with quadraplegia have had to rely on the goodwill of service providers for hands-on, life-sustaining care. Those service providers, and the families of those individuals, are paying out-of-pocket to ensure those supports remain in place. So far they have been unable to recover those costs due to what they describe as a combination of bureaucratic red tape, a lack of training and oversight, and the unavailability of NDIS staff with the experience, knowledge, or authority to address or escalate issues in a timely way. In the case of 52-year-old Jamie Phillips of Bolton Point, heavily reliant on his partner as well as funded supports, his NDIS journey has been difficult form the start. Karen Johnson, 58, works full-time as well as being Mr Phillips' full-time carer seven nights per week, starting at 4.30pm each day when she gets home from work. Night time care involves hoisting Mr Phillips out of bed and into a chair, onto a commode, in and out of the shower, into fresh clothes and hoisting him back onto the bed. He requires special boots, a CPAP machine, medications at 8pm and 11pm, and a catheter. She is preparing to purchase a $10,000 bed to enable her to sleep in the same room. "For three years he's been living in our loungeroom, he gets dressed there, he gets wheeled through the house naked to get showered, and wheeled back to go to bed," she said. Mr Phillips became a quadraplegic in 2022 after a botched medical procedure almost took his life, she said. He became an NDIS participant in December the same year. "Every plan we've had, we've had an issue with," Ms Johnson said. "It was underfunded or incorrectly funded, then last year his funding fell short. We had two agencies involved, both of them kept working for us without getting paid up until one who we paid because they said if we didn't pay they would withdraw their care." That was a bill for $21,000. The second company, which continued to provide services, has never been paid, she said, to the tune of about $15,000. "They just didn't get their money," Ms Johnson said. "This year Jamie got compensation for medical malpractice, so when we got the compensation, we had to pay back $1.9 million back to NDIS because that's the money they paid for him in the two years prior," she said. According to the civil court, compensation is calculated on the assumption that a quadraplegic has a life expectancy of eight years post-injury, but according to the NDIS it's about 22 years, Ms Johnson said. "So they took the $1.9 million and his funding will be cut down by around about $100,000 per year while he's alive, and so while we we're talking to them about that, that lady said she wasn't involved in the section where we could get our money back, and we've just never heard anything more about it." Mr Phillips has also lost out on occupational therapy due to NDIS-related cuts to allied health services impacting in-home care, Ms Johnson said. Jonathan Castellan, also a quadraplegic, was wheeled into the NDIS office at Charlestown earlier this month by support workers desperate to help him get the funding he needed. Already thousands of dollars out-of-pocket, it has been the dedication of those support workers that has kept Mr Castellan alive. "They didn't seem to understand how he couldn't spend a few days at home by himself," his sister, who did not wish to be named, told the Herald. Mr Castellan, 63, lives with quadraplegia following a spinal cord injury, as well as autism and dysphasia. He is catheterised and requires 24-hour care, but his sister said that due to an escalation in his care needs after a hospital stay, which meant he needed more support overnight, he ran out of funding. While the likelihood that he would run out of funding on that basis had been raised with the NDIS beforehand, delays meant his carers had no choice but to work without pay, she said. "You cannot ring the NDIS and speak to anyone who can actually do anything," an associated carer said. "They can't even escalate it and say to someone that we've got this major problem here - even if it was to release funding so we could continue caring for him until they can sort it out. "They don't read the reports. They will spend more money fighting the wheelchair than it would cost to buy the wheelchair." In both cases, family members and care teams considered hospitalisation as an option, but already hospitals are struggling with aged care and NDIS bedblock, and have pushed back. A spokesperson for the National Disability Insurance Agency (NDIA), which governs the scheme, said the safety and welfare of NDIS participants was its "top priority". "While providers should be spending within a participant's funded support levels, the agency can prioritise requests for further funding, when there is a risk to a participant through a change in their circumstances," the spokesperson said. "In these cases, the NDIA will work closely with participants and review supporting evidence to ensure participant safety." It is understood the NDIA disputes the sequence of events as relayed by family members and support workers, and said that the required level of supporting evidence had not been submitted. Further, while the agency can prioritise requests for increased supports when there is a risk to a participant through a change in their circumstances, early exhaustion of plan funding does not automatically initiate a plan review or the approval of a new NDIS plan. The Herald has reported rising levels of aged care and NDIS bedblock, which has increased by more than 40 per cent across Hunter hospitals since March, further exacerbating the issue as hospitals battle to find enough beds and staff to man them.
ABC News
25-07-2025
- ABC News
SA disability employment provider Bedford hopes for government funding lifeline
Disability employment provider Bedford is hoping the federal government will throw it a financial lifeline to avoid the company entering voluntary administration. But Minister for Health, Ageing and Disability Mark Butler has warned the government does not usually put taxpayer money into a "failing organisation". In a statement on Thursday, Bedford said it would enter voluntary administration on Sunday, July 27 after an "exhaustive negotiation process with the state and federal governments, banking and commercial partners NAB". This morning on ABC Radio Adelaide, the organisation's chair Janet Miller said Bedford still hoped to avoid closure, and blamed the NDIS for its current position. ""We're hoping that we don't go into voluntary administration but if we do, what happens on Monday is out of our control, that would be up to the administrator," she said. "The model has evolved. It's very difficult to make the NDIS model work, it's not sustainable." Ms Miller said the organisation believed its strategy was "still sound" and that it had "a good balance sheet". She said the state government had already put money on the table and that the federal government was still considering it. "Our plea to stop us going into voluntary administration this week, we just need a commitment for that money to be available," she said. But Mr Butler told ABC News Breakfast, while talks were continuing, he believed the organisation's financial situation was dire. "We have been talking to them. It's not usual for the Federal Government to give money to an organisation that is failing financially before it goes into administration," he said. He reiterated those comments later on ABC Radio Adelaide. "I'm not clear that there wouldn't be the need for more money beyond the several weeks that that might give to them," he said. On Thursday, a federal government spokesperson said Bedford had received tens of millions of dollars in funding in the past 15 months alone. "The Australian government has been supporting the South Australian government's discussions with Bedford in recent weeks," the spokesperson said. According to its website, Bedford is the second-largest employer of people with disabilities in the nation, and has 22 sites across Adelaide and regional South Australia. The employment provider was established in April 1945 and has this year been celebrating its 80th anniversary. Employee Kym told ABC Radio Adelaide he had worked with the organisation for 11 years. "We were told that they're going to have a meeting with the president on Sunday and everyone would be notified what would happen," he said. "[We] could be closing down if we don't get the money to help us out." He said he felt "little bit sad" upon hearing the news but was trying to support his co-workers yesterday. Mr Butler said he felt for the employees. "I desperately want a future for Bedford," he said. "We understand very acutely the unique nature of this organisation, it's not just some other business that's got itself into difficulty. Premier Peter Malinauskas said his thoughts were primarily with the workers at Bedford, and the state government's offer for funding was still in place. "The question is the money that we do put on the table, does that best address those workers' future through the administration process or staving off administration and seeing a rebound plan initiated under Bedford's current economic arrangements," he said. "They are the deliberations that we've been working on frankly since May, June. We continue those discussions today." He said the state government's financial support would be conditional, but would not provide details on those conditions. "Not for one second do I think we should question the intent of the people that work there, including at the most senior levels of Bedford, the board, the CEO and the senior management, these are good people who want to do a good thing for the people they employed and the services they provide," he said.
