The family of a disabled man who died after spending more than four months in hospital waiting for accommodation have described the National Disability Insurance Scheme and aged care system in Australia as “broken”.
Key points:
The family of a disabled man who died waiting for accommodation are fighting for change
Advocates say there are more than 1,000 NDIS participants “stuck” in hospital.
The NDIS Minister says the government has taken “immediate action” to understand the situation
Mitchell Pearce, 52, died on Saturday in hospice care, little more than a day after NDIS Minister Bill Shorten ordered the agency to find him appropriate accommodation as a “matter of urgency.”
His sister Justine Richmond said her brother died peacefully surrounded by people who loved him.
Mr Pearce had been in Busselton Hospital since March 29.
His family said Mr Pearce, who was disabled since suffering brain tumors as a child, had lost the will to live in hospital, and refused to eat or drink.
Vow to keep fighting
While it was too late for her brother, Mrs Richmond urged people to keep speaking up for change.
Mr Pearce’s sister Mrs Richmond, left, and mother Judith Pearce want people to speak up and bring about structural change to the NDIS.(ABC South West: Georgia Loney)
She said since the family’s story came out on Friday she had been inundated with people wanting to share their experiences.
The family of a disabled man who has spent more than four months in a Western Australian hospital waiting for supported housing has described navigating the National Disability Insurance Scheme as “heartbreaking”.
Key points:
Mitchell Pearce has been in hospital for more than 100 days
Disability advocates say too many NDIS patients are “stuck” in hospital
The NDIA says it is challenging to find suitable accommodation in rural and regional areas
Mitchell Pearce, 52, has been at the Busselton Health Campus since March 29.
His sister said he had lost the will to live — a decline she said was potentially hastened by months in hospital.
Disability advocates claim more than 1,000 NDIS patients are effectively stuck in hospital because of delays in finding funding or suitable accommodation, and due to difficulties in navigating the system.
NDIS Minister Bill Shorten said yesterday he had asked the National Disability Insurance Agency to find Mr Pearce suitable accommodation “as a matter of urgency”.
Judith Pearce said her much-loved son, who is disabled after battling brain tumors as a child, had been admitted to hospital after a series of falls that meant he could no longer live at home.
Judith Pearce says dealing with the NDIS has been heartbreaking.(ABC South West: Georgia Loney)
While Mr Pearce was eligible for NDIS funding, the only suitable accommodation offered was in Perth or Bunbury — far away from his support network.
She said she couldn’t fault the care given in hospital, but said her son had become non-responsive and was refusing to eat or drink.
“He was quite buoyant and quite happy at the situation when he first went in,” she said.
“But I think being there for so long in this situation he has got really depressed and got down.
“Now it’s really just too late, I think for Mitchell.”
Mitchell Pearce’s family says he has deteriorated since being admitted to hospital four months ago.(Supplied)
Mrs Pearce described the situation with the NDIS as heartbreaking.
“I think they have just let us go for far too long,” she said.
“I thought if perhaps we’d been there at maybe a month that something would have been resolved.”
She said the length of the stay had been devastating.
“All through all Mitchell’s illnesses, we’ve always had something to fight for. But this time, we haven’t,” she said.
‘Inhumane, inflexible’ system
Mr Peace’s sister Justine Richmond said the NDIS system was so inflexible it was inhumane.
She said her brother could not be assessed for going into a local nursing home without being “released” from the NDIS, as he was too young.
Justine Richmond and Judith Pearce say navigating the NDIS has been stressful.(ABC South West: Georgia Loney)
“Right back in April, when we first started having meetings about trying to find residential care for Mitchell, they acknowledged that we could go through this lengthy process, and that aged care might be the only outcome,” she said.
“But we still had to go through the process, even though this was a person who was stuck in hospital for months and months now.”
She said the NDIS needed to be able to deal more quickly with individual circumstances.
“It’s a very regimented situation… so if something doesn’t exactly fit their criteria, it doesn’t happen,” she said.
Not a unique situation
Persons with Disabilities Australia president Sam Connor said it was unacceptable disabled people were facing such long delays to be discharged from hospital because of systemic issues with the National Disability Insurance Scheme.
