“No one thought to check,” she said. “My brother was very isolated and alone.”
When she flew to Sydney after David’s death, Ms Longfellow said she had found his fridge empty.
David had been receiving weekly visits from a registered nurse who administered injections to treat his schizophrenia, and also had an NDIS-funded cleaner and gardener, but these visits stopped when his funding was cut off.
“The NDIS is a very fragmented manner of service delivery,” Ms Longfellow said.
For those who lacked someone to advocate on their behalf, she said, it was too difficult to navigate the system.
Living interstate with a daughter who also had significant disabilities, Ms Longfellow said she was not able to “be there to see what’s going on”.
She contacted NDIS minister Stuart Robert after David’s death to ask for case managers to be introduced to the NDIS, but he wrote back saying the government had no plans to do so.
Ms Longfellow wants a coronial inquest into her brother’s death, the cause of which remains undetermined, and a national inquiry to examine all similar deaths. She does not know if David took his own life, died from complications of his diabetes, or another cause.
The NSW Coroner is reviewing the matter and is yet to decide whether to order an inquest.
Ms Longfellow decided to speak out about her brother’s death after another NDIS participant, Adelaide woman Ann-Marie Smith, died from causes including severe septic shock, multi-organ failure, malnutrition and cerebral palsy complications after allegedly being left in a cane chair for a year. That matter is the subject of a manslaughter investigation.
“Behind that is a system that allowed that to happen,” she said.
Labor’s NDIS spokesman Bill Shorten called for an independent inquiry into both deaths and “genuine reform” to prevent system failures resulting in neglect and harm to NDIS recipients.
“Australians pay their taxes so that when they are vulnerable they are not left to die in squalor,” Mr Shorten said.
He saw while the NDIS was “a vital national service”, the Coalition government had “slashed and mismanaged [it] to such an extent that people are now dying of neglect in their homes” and that 1200 Australians with a disability had died while waiting to be funded by the scheme.
NDIS Minister Stuart Robert said that while “any death is a tragedy” it was “disappointing Bill Shorten chooses to use the tragic deaths of people with disability to make cheap political points.”
A spokeswoman for the NDIS said in a statement that it was “irresponsible to link this tragic death to the NDIS without any basis to do so”.
“Irrespective of eligibility for the NDIS, people with disability, like all Australians continue to receive critical and life-saving health care through the health system,” the statement said.
The NDIS Quality and Safeguards Commission said it had investigated Mr Harris’s death and found there had been “no breaches of the Code of Conduct by the provider”.
Dana is health and industrial relations reporter for The Sydney Morning Herald and The Age.