Our ‘hidden’ carers

Gippsland has been reminded of its “grossly inadequate” carer support system, with indications many as half of the region’s elderly and disabled carers are completely isolated from services and support networks.

Ongoing efforts to locate and connect with hundreds of “hidden carers” across the region by local carer support services have revealed the extent of the problem, with children as young as nine years old discovered caring for their single parents unassisted.

Gippsland Carers Association president Jean Topps said while the families of people with disabilities were “currently let down extremely” by lack of government funding, the plight of carers completely isolated from even the most basic advice was concerning.

“There are hundreds of hundreds of carers out there who have no links to anyone, who are suffering from a whole range of issues behind closed doors, who have no where to turn,” Ms Topps said, citing Australian Bureau of Statistics figures which have revealed a vast number of hidden carers in the region.

“We’ve had carers come into our Morwell office asking ‘who you are’; these people didn’t even know they could get respite in-home support; the information of what’s available out there is just non-existent.”

Latrobe Community Health Service executive director assessment aged and disability services Chris Trotman said young carers aged between 13 and 19 years were among the most “hidden” as they were not even picked up by ABS statistics, citing instances of carers in the nine to 12 year-old age bracket.

“It’s a difficult thing for so many young people because they don’t want to self identify as carers and admit that their parents are ill,” Ms Trotman said.

“A lot of these conditions generate gradually; generally it can start with kids helping to get the dinner on once a week, but then that grows to doing dinner all the time, and then all the (household chores), and before they know it, their parent becomes bed-bound.”

Ms Trotman spoke of a recent example in which a nine year-old carer who was found caring for her single parent mother who was slowly debilitating with multiple sclerosis.

“We try and get in touch with these young carers largely through school and mental health networks, but is problematic trying to find them when the kids don’t actually think of themselves as carers,” she said.

“There’s some embarrassment about not even having friends and family for support; it really can be a sad thing for many of these kids, who spend a lot of their time as young carers and miss out on childhood experiences.”

Ms Topps said while the Federal Government’s National Disability Insurance Scheme, which through billions of dollars of funding is looking to revamp the grossly under-resourced sector, had potential to address serious issues, it could be some time before any changes were seen locally on the ground.

The GCA, a volunteer-based organisation, is currently seeking funding to recruit a project manager to locate and educate the entire Gippsland carer community about the limited available services, such as respite care service and group homes.

Despite considering herself relatively connected to support information, Morwell carer Gizella Terranova, whose 19 year-old autistic son Nicholas requires constant care, said she found it frustrating accessing available services.

“When you go through a crisis with your child, you don’t have the energy to go out and chase up services; my son started a day placement only this year, and we only found out last week about a planned activity group, and that was through word of mouth,” Ms Terranova said.

She said while Nicholas was involved with funded respite services, camps and friendship groups in his teenage years, since turning 18 he had been unable to attend, and she was now looking to secure permanent supported residential accommodation.

However in a system under widespread demand, she said the process could take anywhere from five to 50 years, and fears the possibility of not finding him a placement in the already strained system.

“You are continually on edge not knowing about what’s going to happen in future; the fact that I don’t know if or when he will go into permanent care sits in the back of my mind like unfinished homework; I’m not confident at all that it will happen, and that’s a feeling no parent should have to feel,” Ms Terranova said.