“Where we live is a huge part of who we are” – CCS Disability Action calls for urgent action on housing crisis for disabled people
This Monday on TVNZ Breakfast, CCS Disability Action Northern Region General Manager Bettina Syme spoke about the deepening housing crisis facing disabled people in Aotearoa.
The interview followed a One News investigation that revealed more than 800 disabled people under the age of 65 are currently living in aged care facilities – including a 21-year-old who was forced to consider a rest home due to the absence of suitable alternatives.
“We are in a worsening crisis,” Bettina said. “Disabled people do not have real choice and real control over where they live and how they live. Like anyone else, disabled people want to be able to choose where they live, who supports them, and to be involved in their communities.”
The system is failing – not the people
Bettina pointed out that ensuring disabled people can take time and planning, but the real issue is not the people – it’s the system’s inability to respond with flexibility, dignity, and equity.
“It takes a long time to get a needs assessment in the first place. It takes a long time to try and find alternative community living arrangements that will work. There's a lot of planning that goes into that,” she says.
The current system offers limited options. Residential care, while the right choice for some, is under pressure. In 2023–24, a government freeze on new residential placements left people stuck in hospitals or in unsafe, unsuitable homes. Although the freeze has since been lifted, funding constraints remain, and no scalable alternatives have been introduced.
Meanwhile, Choice in Community Living (CiCL) – a proven model that enables disabled people to live in their own homes with tailored support – is only available in five regions: Auckland, Waikato, Hutt Valley, Otago, and Southland. CCS Disability Action is proud to be one of a small number of providers offering this model.
“To deliver the Enabling Good Lives principles, we want to begin early. We know disabled young people are growing, they're maturing and they're going to want to move into a home in the community of their choice. That's a normal ordinary life outcome as people move through their life.”
She calls for a system that looks beyond the costs of a place to stay and instead considers people’s dignity and aspirations.
“We’ve seen people thrive when they’re supported to live in the community,” Bettina said. “But if you live outside those regions, that option simply doesn’t exist.”
A vision grounded in rights and equity
CCS Disability Action does not provide residential care, but instead focuses on wraparound support that enables people to live in age- and stage-appropriate housing. This approach is grounded in the Enabling Good Lives principles, which promote self-determination, ordinary life outcomes, and access to mainstream opportunities.
“Where we live is a huge part of who we are and how we engage with our communities,” Bettina said. “We need a system that reflects that – one that offers real choice, not just a bed.”
She shared the story of a young woman who had been living in an inaccessible home and experiencing extended hospital stays. With support from CCS Disability Action, she was eventually able to move into a Kāinga Ora home that met her needs.
“She had her two cats which she was delighted with. She could move around her home, live independently, make her meals when she wanted to and have guests when she wanted to, and support comes in as it works for her – and she just was happy. That’s what we all need.”
A call to action
The stories shared on TVNZ and One News are deeply concerning – but they are not isolated. They reflect a system that urgently needs reform, investment, and a shift in mindset.
Read the One News article: Family of 21yo disabled Aucklander told to consider rest home care
Follow up: Social, financial challenges of having young disabled people in rest homes