Along with 12 other young people, Kirrily Hayward is living in a Victorian aged care facility due to a lack of supported accommodation for young people with high care needs in her region. She tells Linda Belardi she hopes the NDIS will support her to be able to live independently again.
At 26, Kirrily Hayward is a passionate disability rights advocate, self-confessed gym tragic and social work graduate and former student politician from Deakin University. She’s also the youngest resident in an aged care facility in Geelong, in southwest Victoria, living with residents 40 years her senior requiring complex dementia and palliative care.
Born with spina bifida, a birth defect affecting more than 5,000 Australians which left her unable to use her legs, Hayward was living independently until her hospitalisation 18 months ago because of a recurring pressure sore on her leg.
After her recovery time worsened and a small tract of infection developed within the bone, she was moved from transition care into a Geelong nursing home. “At the time I was told this was the only option, as all others had been exhausted,” she says.
Hayward is one of 600 people under the age of 50 living in aged care facilities across Australia. She says there are far too few options for supported accommodation within her region for young people with high care needs.
Every year, an additional 70 young people enter aged care facilities in Victoria.
While Hayward has high praise for the nursing staff, she says living in an aged care facility has had a significant emotional toll.
“I am a fairly strong-willed and determined individual, but when witnessing events such as a passing, this drove me into depression,” she says.
“It has tested the outer armour. There have been a few times when it has completely destroyed me. Those times are the most isolating, despite having the support around me.”
She also describes the loneliness of living within the walls of an institution and says her friends are often reluctant to visit her because of the intimidating environment. “My room doesn’t look like a typical 26 year old’s. It’s clinical, like a hospital.”
While she has developed a close rapport with the majority of staff, she says there are the rare few who forget she is a 26-year-old who is cognisant of her surroundings. “And the few who treat you like you have an intellectual disability, or like a child. I combat that with wit and intelligence.”
Hayward says it is often the small actions that are the most significant. “Things like knocking on my bedroom door before coming in and respecting my privacy when I need it. The slamming of doors is another. ‘Please don’t treat my room – my private space – like a prison’.”
She says activities within the facility are geared towards the older residents but she attends the gym – her “sanctuary” – religiously, socialises with friends and indulges her passion for music to help cope with the isolation.
As a Summer Foundation ambassador, Hayward also tells her story in the hope of creating long-term change. “It’s time that organisations within Geelong, including the major health providers, combine to work towards addressing the dire issue of young people in aged care.
“There are far too many, and with Geelong being the second largest city in Victoria, excuses are no longer valid.”
She says her work with the Summer Foundation has helped put aspects of her experience into perspective, to connect with other ambassadors, and through speechwriting, offer a kind of unexpected therapy.
A year entering aged care, Hayward says she is completing most of her activities of daily living independently but requires ongoing nursing assistance, particularly with wound care.
Hayward is currently receiving assessment as part of the launch site of the National Disability Insurance Scheme (NDIS) and hopes within six months to move into shared supported accommodation as an initial step towards her ultimate goal of once again living independently.
“I am hoping that my NDIS package will help me move into transitional accommodation, facilitating more freedom to be my independent, free-spirited self, whilst receiving the extra health support I need.
“I hope that the funding and supports I receive will also help me achieve increased social and physical engagement within my community including study, work and recreation.”
However, to help realise her goal of moving out of aged care, she says there ultimately needs to be an investment in alternative and innovative housing models for young people with a disability.