Family fears there will be deaths as NDIS changes hit close to home

Shane Danes is a "social butterfly", a die-hard Parramatta Eels fan and loves classic Aussie rock.The 64-year-old also lives with an acquired brain injury and spinal cord injury from a car crash 44 years ago and a fall in 2022."Shane is a bit of a local celebrity," said his support provider Michelle Doughty.He also needs round-the-clock care at his home in the rural Queensland town of Goondiwindi, which is why Ms Doughty was so worried when the National Disability Insurance Scheme (NDIS) began to reduce his budget.Mr Danes's funding through the scheme declined in October 2025 and again in April 2026 when his family attempted to get funding back to previous levels.It meant his elderly parents, Toni and Merven Danes, both 90, had to support him for two hours each evening.Shane Danes's support provider, Michelle Doughty, says they have had to reduce the social outings he enjoys. (Supplied: Michelle Doughty )But they said he was left alone for an hour between 6am and 7am each day, when the family felt it was safest, because of the shortfall in funding.Ms Doughty said she was so worried that on the third day of the new arrangement she came into work early on April 21 and found Mr Danes vomiting, which she feared could have been fatal had she not been with him."Shane would have aspirated, and the outcome wouldn't have been what it was," she said."Now, if we'd done that to an animal, we would be in trouble, but yet people expect us to do that to a human," she said.Ms Doughty said because of this incident, her company decided to charge the NDIS less so they could spend more hours with him and barely broke even providing his care."I'm doing what I know is right for my beliefs," she said.While the change to Mr Danes's care was made before reforms to the NDIS were legislated in August, his family, who all devote time to looking after him, said they are worried about his future.Family stretchedShane Dane's sister, Tracy Sullivan, 62, has cared for him for decades, along with their mother, and is desperate to keep him out of aged care.She said the work includes hoisting, transfers, bowel and bladder management, personal care, meals, managing medication, and bed sore prevention.Ms Sullivan said she supports her brother while managing paid work and caring for her grandchildren because of a lack of child care in the rural town."I love and enjoy being with him," she said."[But] it's been a bit of a hard slog."Advocates stretchedIndependent disability advocate Alyce Nelligan said Mr Danes's story was not unusual.More than $2.8 billion was cut from NDIS participant plans between July 2024 and March 2026.Alyce Nelligan says other families have experienced similar problems. (ABC Southern Qld: David Chen)Ms Nelligan said some providers were picking up the slack after having to choose between their wages and keeping their clients alive."Nobody should be put in that position," Ms Nelligan said.A National Disability Insurance Agency (NDIA) spokesperson said the safety and care of participants was its priority, and it carefully considers all information when deciding what funding and supports a participant should receive.Family supportWhen the NDIS was rolled out a decade ago, Mr Danes's family were relieved he could finally have the life he deserved.His local doctor, Goondiwindi GP Sarah Gleeson, said he thrived under his previous care arrangement."If someone could be the poster boy for NDIS, it would be Shane," Dr Gleeson said.Shane Dane's family have been doing their best to fill the gaps in his care, but say they cannot keep this up. (ABC Southern Qld: Elly Bradfield )She said since the changes there had been situations where he has been unable to have his catheter or stoma changed, which also impacted his quality of life."It impacts his dignity, and it impacts the small moments of independence that he can have," she said.