THE STORY SO FAR: Addy campaigns for disability housing

FOR decades, Bendigo mother Helen Wemyss has fought to improve disability services offered in Australia.

Ms Wemyss is a member of Quality Living Options, a Bendigo-based collective of parents and carers of people with disabilities which plans to bypass government and build its own care facility.

Her daughter Susie, 46, has Downs syndrome as well as a severe anxiety disorder and obsessive compulsive disorder.

The combination of disorders make her volatile and prone to violent outbursts, though her behaviour is currently managed by medication.

Susie requires constant care, needing help with tasks such as washing her hair and cleaning her teeth.

Ms Wemyss' only break from caring is when Susie attends programs provided through respite provider Homestyle and through the council's Home and Community Care program.  

With the future of the HACC program in doubt after council revealed plans to withdraw its funding, Ms Wemyss said finding other affordable care was troublesome.

"My concern is that it's going to cost me and other carers far more money. I fear it won't be subsidised as much as it is now," she said.

At 71, Ms Wemyss, who suffers from her own health problems, said it was becoming more difficult to provide the level of care Susie needs.

"I'm tired," she said

"Being [Susie's] mum is lovely, but I'm tired of being her carer.

"It cuts you off from society because a lot of the time the people you mix with are other parents of people with disabilities. It's a wonderful and supportive environment but it means we're in a different world. There's no escape."

She said her greatest hope for Susie was for her to live in a "safe, secure, appropriate home", staffed with professional carers who could provide the attention she requires.

Ms Wemyss said QLO wouldn't be able to achieve its goal without public support. She said the success of the project could have positive repercussions for other groups.

"This is going to be the first of its kind in Bendigo," she said.

"It can be a prototype for what can be achieved. If we achieve this, it can be replicated by other parents and other groups."