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FED up with a lack of support from state and federal governments, a group of Bendigo parents and carers of adults with disabilities has taken matters into their own hands and decided to build an independent care facility.
The group, called Quality Living Options, is made up of about 50 Bendigo families.
President Noela Foreman said "sheer desperation" had forced the group to take action to address the lack of facilities caused by the failure of successive state governments to fix the problem.
"We were being told by the Department of Human Services that there was no hope of getting our kids into accommodation within 10 or 15 years. As elderly people, we were very dispirited by this and decided to do something ourselves," she said.
She said the few available facilities were choked by demand.
"There are already people living permanently in respite facilities," she said.
"That means they're already clogged up and respite isn't really available."
"If four or five of us were to have strokes or die, our kids would be left adrift.
The group hopes to build a facility which will cater for residents who require round-the-clock care as well as those who are able to live mostly independently with some help from carers.
"Our group is planning to build and put together a complex where our people can live happily and have good care and security," Dr Foreman said.
She said the group was looking overseas for inspiration.
"We're looking at village complexes in Europe and seeing how they function and the services they offer to the community in terms of growing vegetables and having classes and things that bring the community into the village," she said.
She said funding would come from residents' National Disability Insurance Scheme and individual pension payments, as well as fundraising and other sources for the initial build cost.
The group is searching for a suitable parcel of land before they can draw up detailed plans for the facility.
Dr Foreman said parents were struggling.
"People are really worn down and exhausted from looking after their kids for so long," she said.
"They're so disillusioned that they've settled into just going day-to-day trying to cope."