With 20 percent of Australia’s population living with a disability, the responsibility of care often lies with their loved ones, sometimes from a young age, but not all are aware of the supports available to them.
This is the reality for one young carer, Alice Powell. Powell’s father, Grant, suffers from a degenerative neurological disease called Hereditary Spastic Paraplegia, which causes weakness and stiffening in his lower limbs.
Alice Powell’s father was diagnosed before she was born, and she watched his illness slowly develop, making him less mobile and independent.
“When I was in my early teens, I would get his walking stick for him and that was all the assistance he really needed. In the last 10 years, I’ve had to help a lot more as he’s slowed down,” she told upstart.
“My capacity as a carer has increased significantly.”
Despite being described as “fiercely independent”, Grant Powell’s decreased mobility means he needs a walking frame. And as he lives alone, he requires special installations throughout his house and the car to make day-to-day functioning possible.
Due to the stiffening in Grant’s lower limbs, he is unable to drive a car with standard foot pedals. Instead, additional hand controls have been installed, so he can drive safely and retain some of his independence.
While Alice Powell is grateful that her dad can still complete some day-to-day tasks with the assistance of modified railing like showering, she said that one of the hardest parts about caring for a loved one is the “burden of worry”. She admits it has sometimes been a challenge to her mental health, but she called herself “lucky” for not knowing any better.
“This has always been my norm,” she said.
While there are services out there, like Young Carers Network, which links young carers with other support services, people don’t always know they exist. Powell feels that the focus should be on the person living with the disability, however, their family members also need recognition and support.
“No one ever mentioned any support service to me, not even any of his healthcare providers,” she said.
Cathy Thompson, a research fellow at the University of New South Wales, conducted research into the issues affecting young carers, and believes that while there are support services in place, there are barriers to accessing it.
“It’s about recognising that each person in that care relationship have different needs and how can the service system support that family, rather than focusing on just one person,” she said.
Recent reforms by the Victorian Government adopted a more individualised approach to disability services funding. According to Thompson, this allows the person living with the disability greater control over their funds and services but focuses less on the carer.
While she believes resources should not be taken from the services offered to the individual living with the disability, it is important that this approach is not to the detriment of the carer. This could help young carers, like Powell, fulfill their caring duties while maintaining their own life.
According to the Australian Government Department of Social Services (DSS), there are many more young people making these sacrifices, considering that only one in 10 identify themselves as a carer.
However, the DSS states that this figure is likely a gross underestimate due to the number of young people who may not be aware they are classified as carers. Thompson agrees that one of the barriers preventing young carers from accessing support services, is that they are unaware that their caring duties go beyond what the average person does to support their parents.
“Once you’re linked into services, that then opens the doors to other supports that are available,” she said.
“It’s finding those entry points to services that are often quite difficult, and that starts with recognising that you are a carer.”
For Powell, this recognition came only with time.
“I look back as a kid and I was always helping in some way, but I probably only really recognised myself as a carer in the last few years,” she said.
Given the progressive nature of Grant’s illness, Powell is under no illusion that her capacity as a carer will only increase.
“There is the burden of responsibility that I will have to deal with his care,” she said.
However, Powell now knows that there is support out there for her as a carer, and she encourages others in a similar position not to be afraid to reach out for help.
“Trust your instincts, your family is your family, but talk to someone.”
Article: Madeline Donis is a second-year Media and Communications (Journalism) student at La Trobe University. You can follow her on Twitter @MadelineDonis1
Photo: old-and-young-hands By PaigeHamlin1 available HERE