Family fights removal of NDIS funding for 24-hour registered nurse in Melbourne disability facility
Nearly 18 years ago, doctors told Robyn Brewin that her son James would probably only live another three to five years after he suffered a catastrophic brain injury during an unprovoked assault while he was out celebrating his 20th birthday.
But James Macready-Bryan has defied those medical odds, living in a special accommodation for young people with acquired brain injuries in Melbourne, where a registered nurse is always present.
His family is now facing another battle, with the National Disability Insurance Scheme (NDIS) removing funding for the 24/7 registered nurse who cares for him and the other residents at the 10-bed home in Alphington.
“James needs care for every aspect of his life. He can’t speak, he needs to be fed through a tube into his stomach. He has a urinary catheter, he has severe spasticity,” Ms Brewin told ABC Radio Melbourne Mornings.
“He can’t really move himself, he needs two people to assist him with all his personal care. Put him into the wheelchair, all of that sort of thing, repositioning him, [he has] extreme needs.”
The NDIS wants to replace the registered nurse with a delegated model of care where support workers are trained by a nurse, as part of a broader policy of moving away from group block funding agreements.
“The reason he is in this home is because of the nursing, otherwise he would not be there,” Ms Brewin said.
“It just beggars belief really, that the government is mandating registered nurses in aged care and now they’re taking it away from severely disabled people in group homes.”
Fears home could close
The Austin Street home is run by Villa Maria Catholic Homes. A registered nurse is always there and works with other staff to look after 10 young people.
The home and Ms Brewin are fighting the changes in the Administrative Appeals Tribunal after its efforts to convince the National Disability Insurance Agency (NDIA) — including a meeting with chief executive Rebecca Falkingham — that the changes were damaging, failed.
“I’m very worried it will close because there are too many people there to be looked after by even well-trained support workers,” Ms Brewin said.
“These people have a very slim margin of health; they can go from being quite well to being incredibly sick.
“They all have cognitive impairment, they can’t tell anyone when they’re not feeling well, when they’re getting a urinary tract infection or aspiration pneumonia or pressure sores or anything else — they need the nurse there 24/7.”
In a determination letter, the NDIS said its care packages needed “to represent value for money in that the costs of the support are reasonable relative to both the benefits achieved and the cost of alternate support when compared to the benefits to be achieved.
“I am not satisfied the requested support meets this criteria.”
An NDIA spokesperson said Austin Street was one of several specialist disability accommodation providers where 24/7 nursing care was being removed.
“Unlike previous state and territory block funding arrangements, the National Disability Insurance Scheme (NDIS) is built on individualised choice and control and was not designed to operate 24/7 nursing models,” they said.
“Throughout this period, we have considered the impact and ongoing care needs of participants at every stage, while supporting providers in a coordinated approach to prepare them for this planned transition.”
It argues that Mr Macready-Bryan’s daily care can be provided by a trained supporter worker.
Villa Maria Catholic Homes CEO Sonya Smart said the removal of round-the-clock nursing care could be catastrophic for residents.
“This is a dangerous decision,” she said.
“If the model is introduced, Austin Street will be forced to close, as the risk to life is too great.
“We can only assume this change is a cost-cutting exercise by the NDIA as it has no benefit and is indeed absolutely detrimental to the residents’ serious health needs.”
If Austin Street does close, Ms Brewin said her son would need to move to an Aged Care home.
Limited homes for young people
The options for a new home for Mr Macready-Bryan in the aftermath of the assault were limited, with the most realistic option being for him to live in an Aged Care home.
“When I started to look at some I was horrified,” Ms Brewin said.
But there were already efforts underway to find alternative homes for young people with serious brain injuries.
Austin Street was opened in 2010 as part of the state government’s Younger People in Residential Aged Care initiative, known as “My future, my choice”. It also had backing from the federal Labor government including then-parliamentary secretary Bill Shorten.
Following the assault, Mr Macready-Bryan’s friends and family rallied together setting up a foundation as well as an awareness campaign against one-punch attacks called Step Back Think.
Ms Brewin’s local MP, Monique Ryan, has lobbied NDIS minister Bill Shorten to save the nursing care, raising concerns that the impact would have a detrimental impact on residents, their families and staff.
“It’s a classic state versus federal cost-shifting problem where there’s an argument about who should pay for the cost of the care,” she said.
“I don’t think the NDIS can make any reasonable case that the best thing for James would be not to keep him at Austin Street.”
Minister for the NDIS Bill Shorten is on leave and his office directed questions to the NDIS.
SOURCE: ABCNEWS