Imagine living in a share house with four people you don’t know or don’t like. You’d pack your bags, hop online and find a new place to live, right? For people with the highest level of needs living in supportive disability accommodation, the answer isn’t that easy. But one day, it could be, thanks to research by industrial designer Dr Phillippa Carnemolla.
“I'm never shocked by people's capacity, but I have been shocked by how people have been held back.”
Dr Phillippa Carnemolla has always had a “deep interest in design and human rights”. For the past 25 years, she’s worked as an industrial designer, jewellery designer, researcher, lecturer and an expert in design and compliance for litigated and non-litigated matters.
She’s also acted in advisory roles for and sat on the board of organisations like Achieve Australia, the City of Sydney Inclusion (Disability) Advisory Panel, Centre for Universal Design Australia and the Community Consultative Committee for Centennial Parklands.
And, as of November last year, she’s taken on the role of Postdoctoral Research Fellow in the Built Environment, Informatics and Innovation Research Centre based in UTS’s Faculty of Design, Architecture and Building.
It’s a perfect fit for Carnemolla, who, as a child dreamed of being a doctor and as a uni student (she studied industrial design at UTS from 1991 to 1995 and completed a Master of Design at UTS in 2003) wanted to design furniture in Milan.
“I was good at maths, I was good at science and I liked the idea of being a doctor; of the healing, of being able to help, and understanding the human body,” recalls Carnemolla. “But I was also very creative, so industrial design won me over. Now, here I am, not having searched for it, but I've somehow found a way of coming back to what I was searching for in a health-based career.”
Today, Carnemolla is helping people through good design. Her work has seen her investigate how home modifications and the built environment can positively impact the quality of life for older people and people living with a disability. In fact, one of the first papers she wrote was cited in a Productivity Commission report on ageing and health.
Currently, Carnemolla says, “One of the projects I’m working on is with a disability organisation providing supported accommodation for people at the highest level of need; people who require assistance to be available 24-hours a day.
“We're starting to do some research around the wellbeing and quality of life differences between living in a group home with a support person sleeping overnight, and living in mixed-tenure individualised apartments with additional technology and 24-hour support through a hub.”
It’s a revolutionary approach that could well change the way support is provided in Australia. Community-based options for people requiring higher levels of support remain limited. And for older people living in the community, the onus for care often falls on family.
“I want it to be much easier for people to have houses that they can live their entire lives in with autonomy and mobility and freedom.”
The 2015 Australian Bureau of Statistics Survey of Disability, Ageing and Carers reveals there are 2.7 million unpaid carers in Australia and 96 per cent of those are the primary carer for a family member.
It’s something Carnemolla has experienced first-hand, caring for family who live with a disability and supporting close friends and family to live, and thrive, at home through declining cognitive and physical health. Carnemolla says the impact of improved at-home care can be staggering.
“The design of the built environment is critical because it means the difference between getting out of the house or going to the toilet independently or getting up the stairs.
“My PhD was able to show that improving people's home environments not only impacted the amount of care received in the home – it almost halved the amount of care – but it changed relationships.
“Being able to be autonomous while also reliant on care is a critical, but delicate balance,” she adds.
“Interestingly, absolute independence isn’t always the answer, but the nature of care definitely impacts our sense of dignity and power. In some cases in my research, a small $40 handrail in the bathroom made as much impact on a person’s life and care needs as a larger modification, like a lift.”
For Carnemolla, listening to her clients is key. “I think that's really important,” she affirms. “That's what makes us human – being able to help and support each other in times of need.
“I want it to be much easier for people to have houses that they can live their entire lives in with autonomy and mobility and freedom. I want that to be valued and understood.”
And that’s why, Carnemolla says, good design needs to be inclusive. “Inclusive design is design that enables people to have that quality of life that we're talking about – so to participate, to be as independent as possible, to be autonomous and to live in the world without having to ask permission.
“It’s not just me making decisions about what's best for people. It's about how we include people in the research and design process so that they’re a participant in that decision making and that what we get in the end works for as many people as possible.
“Built environments have tended to be considered as permanent and fixed. However, conceptualising and designing built environments as evolving and multi-layered, physical and digital spaces opens up so many new possibilities for accessibility, both in public space and private housing.
“It’s an exciting time to be considering the scope of disruptive technologies in the built environment and ways of supporting more vulnerable people in our community, including people living with dementia, to participate safely and with dignity and confidence.
“Although standards are there to provide part of the answer, they rarely present the full extent of what's possible.” Carnemolla hopes to uncover what is.