The hope for every parent is the best for their child. Even if it means giving up a little - or a large part - of themselves. EMMA SCHENK reports.
Noela Foreman never expected to be caring for her child in her 70s.
She admits she would rather be following her artistic dreams, or putting her feet up after a lifetime of living at full speed.
But despite her aching bones, Noela spends her days making sure her son, who lives with brain damage, is safe.
Even as we speak, she looks at the clock and makes sure it is not time to pick him up. He is due to finish at the cinema any minute.
It has been an exhausting life, she says - one that has left little time for personal endeavours.
And her story is all too common.
Along with a group of fellow residents fighting a parallel battle, Noela is determined to ensure a safe home for her child when she is gone.
She has been told it could be 10 or 15 years before suitable accommodation in Bendigo becomes available - but the members of Quality Living Options don’t have that long to wait.
One member is in her mid-80s and has been widowed for many years, another is a single parent looking after her disabled daughter with emotional issues, some parents have more than one disabled children - and another mother lost her husband recently and suffers from serious health concerns.
Noela says those with intellectually disabled children spend decades parenting – making sure their children wash themselves, have clean clothes on; they even cut up their food.
Often there is no one else to look after the children and many haven't had a holiday - or a day off - in 50 years.
They want to break the cycle.
"Most people's children grow up - they maybe have to look after them for 15 years before they become independent," she said.
"But for many of us, they never grow up.
“It's a constant level of care needed, and after 50 years of doing this, well, it's hard."
When pregnant, Noela was involved in a car accident that caused her to have her baby prematurely. He suffered damage to his frontal lobe and as a result, was left without the capacity to control his emotions, make future decisions or have any concept of abstract things such as time and money.
Ever since, Noela – like many – has battled with the system to get appropriate care for her son.
A once-off care payment helps to fund carers and accommodation, but for her, it has never been enough.
With a lack of stable accommodation in Bendigo, many disabled adults live in respite care, meaning there is no space available in emergency situations.
Noela says the situation is crisis driven and often, it is too expensive to get the right amount of care – meaning a lot of the burden is placed back onto the family.
Her first marriage fell apart due to the pressures of the situation.
And now she wonders what will happen when she dies.
“Health problems start to get greater when you get older - you’re slowing down but your kids aren’t,” she said.
“And you start thinking about when you go - how can you just leave your child to someone else without knowing what will happen to them?”
All the 40 Quality Living Options members want is a “safe, secure and appropriate place” their children can call home.
They accept no one will be as dedicated to the care of their child as they are, but say individual needs must be acknowledged.
"It's our basic right as human beings to have a place we feel like we belong,” she said.
“It’s also a basic human right to age and look after yourself without having to look after your offspring and worry about what will happen to them.”
As it stands, if the primary carer dies and there is no-one else to look after the child, they are taken into the Department of Human Services care and could be moved to anywhere in Victoria.
The government body estimates more than 1000 people need shared support accommodation at any given time - with demand expected to grow by four to five per cent annually.
A Victorian Parliamentary Report Supported Accommodation Meeting Current and Future Demand in Bendigo suggests there will be between 250 and 350 people in the region with unmet and under-met need for supported accommodation over the next 10 years.
A Minister for Minister for Disability Services and Reform Mary Wooldridge spokesman did not answer specific questions from the Bendigo Advertiser, but said the Napthine government was committed to "recognising, promoting and valuing the role of Victorian carers".
"Since coming to office, the Napthine government has undertaken a range of measures to improve services for carers including introducing a Carers Recognition Act 2012, supporting the development and implementation of the National Disability Insurance Scheme (NDIS) and expanding respite services," he said.
"The NDIS will play a pivotal role in years to come, providing certainty and choice for people with disability when their circumstances change due to a parent or carer ageing."
You can sit back and wait for help for only so long.
And while group members remain hopeful the NDIS will boost available funding, members have learnt to not rely on government assistance.
"You can sit back and wait for help for only so long. You can plead for help, weep for help," Noela said.
"But our group is determined to find an alternative.
“Whether that’s build our own accommodation or work towards transitional housing, shared housing or even the lead tenant model - where a disabled person rents a room with a student studying health services or nursing.
"We have to do something.”
Currently, most of the supported accommodation in Bendigo are serviced by Scope, Care Beyond Measure, Golden City Support Services and Haven. Homebush also provides a boarding house for disabled residents.
And with Sandhurst - a centre which houses 30 residents - planned to shut down this year, there will be even fewer options for people looking for care.
Amicus chief executive Ann-Maree Davis said there were shortages in funding and availability of respite and other support that provide assistance for carers and was unsure how the NDIS would specifically help.
"Historically most families have felt that ‘the government’ will take care of my family member, but there isn’t enough accommodation to meet the needs of all people requiring it," she said.
"And a traditional group home, which may have five or six people with a disability living together supported by paid staff, just does not meet the needs of many people with a disability."
She said while people with a disability who had ageing carers were a priority when a vacancy in a group home becomes available, there may a long wait for suitable accommodation.
"If the family situation is extremely urgent then at times people may be considered for a vacancy in other towns which is a very difficult decision for families to make," she said.
Ms Davis said many families did not know where to start looking for help - but early planning and innovative ideas would help create a much better situation.
"It is unclear at this stage what impact the NDIS will have in terms of immediate benefit for aging carers and their family members with a disability around longer term accommodation and support needs," she said.
"We need to be supporting families to think beyond a traditional group home.
"We need to be planning with them much earlier to develop a clear vision of what a good life for their family member looks like and then develop the accommodation and supports that will better meet their needs."
But as Noela says, it remains the "hidden group".
"We just keep plodding on doing what we have always done - caring, supporting finding answers as we go, finding ways to cope, often without much help from the rest of society," she said.