Advocates say New Zealand’s disabled housing crisis is worsening, with too few accommodation options available for people with high needs—and the issue continues to go unaddressed.
They say it means disabled New Zealanders requiring more complex care, like 21-year-old Mitchell Cawdron, were being forced to consider living in rest homes.
"He requires full support to dress, to bathe, to eat. He'll never drive, never work. He doesn't communicate so we're the only ones that really understand him and he also has erratic sleep," said mum Cherie Cawdron.
The young Aucklander has always lived at home but his family's decided that can't last forever.
"While we love him immensely, I just don't feel like I can live caring for him like this as I get any older now. I think we've done a huge job for 21 years doing support," Cawdron told 1News.
She worked in the disability sector and understood the options well, but said finding a solution for Mitchell had still been challenging.
"We've got all the way down the track working with a particular provider that does residential care, and then after many meetings they advised us that because of his high health needs they would not accept him, so we've gone through a huge emotional 'we're gonna do this' and then found that the system didn't actually fit what we were looking for."
Cawdron said another complicating factor was "offenders and people exiting Oranga Tamariki actually have right of way over people who can still potentially live with their family".
In a recent blog post she wrote: "Families supporting adults with complex needs are barely likely to gain entry unless a crisis occurs – a crisis such as harm to the disabled person or parent, injury or death of a carer. It is that dire."
"Our family while not ‘having this crisis’ yet, are excluded by many providers of residential care because of the intensity of needs and inadequate funding support."
Choice in Community Living was another option Cawdron explored for Mitchell.
The government-backed initiative, launched over a decade ago, allowed disabled New Zealanders to rent or buy their own home while continuing to receive support, but access remained limited, with the programme only available in select regions.
Cawdron said: "The government has never invested enough in it to actually bring it to its full potential."
Even then, she said she was told Choice in Community living wouldn't work for her son either.
"We basically couldn't get enough funding for him to have one-on-one care because the care package he has relies on us doing all of the backup hours if a support worker's sick or if we need extra help."
Sending Mitchell to a rest home was one of the last remaining options, but Cherie was adamant that "does not appeal" to them.
"If he was to go into age residential care would be possibly to live with 70, 80 year olds... people that may have dementia, people that are in a different life stage to him."
She said, despite his disabilities and health needs, "he's still a young guy and wants to go out".
'I shouldn't have to be worrying'
The Cawdrons were not alone in their struggle with caregivers across the country worrying about where their loved ones will live and receive care in the future.
Disability Connect chief executive Mike Potter agreed that government policy leading to prioritisation of certain disabled people over others was putting pressure on the system.
"We know that the beds are available and the frustrating part is they're being kept for people who are in hospitals or who are coming out of corrections or coming out of transitional housing and there are people with the need to move into these houses and they simply can't take them up," Potter said.
"The options for people who have a significant disability, an intellectual disability in particular, are very few. They're reliant on what might be provided by the government in terms of residential care housing."
One Taranaki father, who's son was still in his early teens, told 1News he was already investigating future options.
"Zak's 13, I shouldn't have to be worrying about what he's doing to leave school, let alone when I retire. But then there's also this, whether you call it a pipeline of people behind us," said Craig Nielson.
He has teamed up with two other dads to research and make plans for a group home that would meet some of the need in their region.
"There are [already] some residential care homes, but it's trying to figure out what those are and who's eligible for them, and there was massive waiting lists," Nielson said.
"Some of our people need a lot of support to get through their day to day life, so it's having the right people around so that they're safe first of all, but they have an enjoyable life."
They have been blown away by the local feedback they've received.
"We've done a survey out to our sector and we've had over 200 respondents, with more than 50% being family/whānau, so there's a real high level of concern, but we don't know what the level of need is, but we know that need exists if that makes sense and it's slowly becoming more and more evident."
The group of dads wanted the accommodation to offer a spectrum of care, and for it to help prevent young people from moving into aged care facilities.
"The care provided within a residential retirement facility... is absolutely perfect, however, for a young person leaving school or moving into the big wide world, they don't live in a retirement village, they live with their peers," Nielson said.
"And I think that's what we'd love to be able to offer. The need is really similar, the setting is really similar, but the delivery is actually very different."
He said he believed they were three years away from making their facility in Taranaki a reality.
MSD addresses limited housing options
The Ministry of Social Development oversees Disability Support Services, which funds accommodation options like group residential care homes.
"Our role is to fund organisations which deliver Community Residential Support Services, and where appropriate Aged Residential Care, for disabled people who have been assessed as requiring these services," said Disability Support Services associate deputy chief executive Anne Shaw.
She said the agency was currently undertaking a procurement process, and talking with several providers about offering Community Residential Care.
Asked about the policy leading to certain disabled people, such as those from Oranga Tamariki, being prioritised over others, she said: "Needs and Assessment Service Coordination services prioritise support based on need, including for people who have no other housing options available."
On the Choice in Community Living programme, Shaw said it has expanded beyond its original Auckland and Waikato pilot and is now available in Southland, Wellington, and the Hutt Valley.
"We’re currently focused on strengthening the existing system."
MSD said 819 disabled New Zealanders under the age 65 were currenin aged care.
Shaw pointed out that Aged Residential Care is not the first option that's explored for young disabled people, and that the majority of disabled people in rest homes are over 55.
The lack of options for those with high care needs is just one of many issues the disabled community have in the housing sector.
1News has also looked at the difficulties faced by disabled people who can live independently, with only 2% of homes in New Zealand believed to be accessible.
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