Home' Australian Ageing Agenda : AAA May-Jun 2014 Contents 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
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 an ambassador for advocacy group Summer Foundation,
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."
A year after 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. n
An ambassador for change
Along with 12 other young people, Kirrily Hayward is
living in a Victorian nursing home 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.
60 | MAY-- JUNE 2014 | AAA
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