Aged care facilities say they're under pressure with the workload and cost of taking in young disabled Kiwis, who have nowhere else to turn.
More than 800 disabled New Zealanders aged under 65 live in rest homes.
Advocates have told 1News it's because there're very few accommodation options for those with more complex care needs, culminating in a housing crisis for the disabled community, who also struggle to find homes that are physically accessible.
Maygrove Care, north of Auckland, is one of around 170 providers registered as having young residents with disabilities.
Manager Gail Bradley said: "At the moment we've got two, and over the years we've had about eight coming and going."
"We've had somebody who was about 50 and they stayed with us here for about eight years," she said.
While the hospital-level facility is open to taking in young disabled people, she finds it sad to see them in a space that's not tailored to their generation, with music and activities that interest them.
"If somebody has a need they should be able to come into a place like this because there's nowhere else for them to be cared for," Bradley said.
"[But] I just think that as a health sector we could do a lot better by these younger people.
"It's really difficult for them to be in an old place... you wouldn't be comfortable because it's not your demographic."
The Government's disability support services funds placements in aged care facilities when community group homes can't provide the level of support required, or when there're no other options close to family.
The Ministry of Social Development has told 1News it's not the first option that's explored for young disabled people.
'Difficult for us to care for these residents'
The social challenges aren't the only concern from rest homes when it comes to housing disabled people.
Aged care facilities also find residents with disabilities to require more work, and therefore, they're more costly.
"The workload is definitely higher than the elderly because they have more comorbidities and they will also be more dependent on you," Bradley explained.
"Because we are hospital-level care, the funding will be for two person assist for a resident whereas as I said, some of these people could be four people assist."
"It is quite difficult for us to care for these residents."
Bradley said some facilities may not take them in due to the level of funding and concerns staff might not cope with the work, adding that it's "a lot of pressure".
Aged Care Association chief executive Tracey Martin said it "can be really, really high clinical needs, constant 24/7 supervision".
Association members threatened to withdraw the service last year, as they were getting less funding for disabled residents than elderly residents.
"Because of the funding freeze... they started to decline to take young people with disabilities from hospital services or from the community because they didn't have the capacity to financially take that loss," Martin explained.
In July the funding was increased, which means more facilities are once again open to offering the service.
But Martin said they're still losing out.
"The amount of money that is being paid to aged residential care is not enough to cover the cost of the provision of the care that the citizen has been assessed as needing."
Call to change the funding model
The Aged Care Association is working with the Government to change the funding model completely, Martin said.
Martin said four Government-funded reports have been released saying the amount Te Whatu Ora pays for hospital-level care is "not adequate", adding: "Everybody's still underfunded."
"We would like to shift to an evidence-based funding model similar to the Australians have implemented," she said.
"That would give you that greater graduation of a person who comes into residential care, whether they be a young person with disability or a senior, that they are assessed as needing say a one-person lift or a two-person lift all the way through to a very high needs young person with disability and/or a bariatric patient which can take up to a six people to an eight-people lift.
"There are clinical costs that need to be measured appropriately and funded appropriately for the level of care and so that goes for young people with disabilities or older citizens."
She says they've having active conversations and getting close to creating more nuanced categories of care, but arguments on funding them appropriately would need to follow.
Health NZ told 1News it's working on an aged care funding and service models review, with the first phase already completed and the second underway.
"We are currently developing a proposed new approach to identify people’s needs along with the resources required to meet them," it said in a statement.
"Sector-wide consultation on a draft of this model is due to take place in the coming months to ensure comprehensive feedback is gathered before finalising the proposed approach."
The Social Development Ministry is also considering the appropriate model of care for disabled people under 65.
It's extended its contracts with providers until August next year to give it time to explore and make decisions.
"This work is a priority for DSS, and we’ll continue to work closely with the Aged Care Association and aged care providers to progress it," said Anne Shaw, Disability Support Services' associate deputy chief executive.
According to data obtained through the Official Information Act, the Government spent close to $76 million to house disabled people in rest homes in the 2023/24 financial year.
The total amount spent on all kinds of residential care, including rest homes and group homes, topped $1 billion.
Purpose-built facilities
The aged care sector would like to see more facilities set up that can take in young disabled people and still give them the level of care they would receive at rest homes.
"In the view of our association, young people with disabilities don't really want to go into aged residential care facilities," Martin said.
"They weren't designed for young people with disabilities. They're there because they need the high level of clinical care our facilities have that they can be given.
"The future should look like specifically set up residential care facilities. We're not returning to institutionalisation just to be clear, but specific residential care facilities that cater specifically for young people with disabilities with those high clinical needs so that they can be with their peers, so that they can be well supported from a clinical perspective, but actually the holistic world that they live in is much more designed for a person of their age demographic."
Bradley agreed: "They have different needs, they have different wants, they have different likes and dislikes."
Her hospital-level facility has a waitlist of older people keen to live there, including "people sitting in hospitals in beds that should be used for somebody else".
"Therefore, it would actually be good if the [young disabled] population actually went into more purpose[-built] facilities."
She suggested there should be a higher staff to resident ratio too.
Martin said, "We don't have to talk about large facilities that need 100 or whatever individuals to make it work."
She accepted it might not be possible to have a solution in every town.
"But in a geographical area, say are we putting a one-hour drive sort of parameter around it, why aren't we talking about that?
"We won't be the only country in the world that has actually had this challenge and worked out a solution."
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