Health care hell- Campaigning to get a village for adults with disabilities or acquired brain

By Bridget Brady
“WHILE we’re able to care, we’re left like garbage to rot.”
It may be harsh, says Marie Hell, 64, but that’s how she describes the “desperate” situation of ageing carers who have few options when it comes to supported accommodation for their disabled children.
She knows of parents or carers in their 80s who are still looking after their adult children 24 hours a day, seven days a week.
And the situation was only worsening as the health of carers started to diminish, Ms Hell said.
“I’ve heard other carers crying, saying their health is worse than their children’s. The reality is so bad. No person in their 70s or 80s should be caring for a 50 year old in their home.”
A passionate group of carers who are part of the Disability Capability group have a goal to establish a lifestyle community village somewhere in the City of Casey or Mornington Peninsula.
It would be a home where adults with intellectual or other disabilities or acquired brain injury (ABI) could live in a supportive and loving environment and where they had the opportunity to develop skills and contribute to the community.
Disability Capability president Amanda Stapledon said the village would be a dream come true for carers.
“It is unbelievable in this country that the only options for a person with a disability or ABI who cannot live independently are to remain in the family home, or in a nursing home for the rest of their or their carer’s life, with no idea of what the future holds when the carer passes away,” Ms Stapledon said.
Carers in the south-east had come together and worked on the project they envisaged would be a parent-driven facility and funded through a government-corporate-community partnership.
Ms Hell said the need for supported accommodation had been ignored for too long, and carers were sick of government reports and inquiries with no action.
“If we don’t do this soon, nothing will change. We’re not just lobbying for one person. We’re lobbying for many.”
The supported accommodation village would put the carers at ease, knowing their children were in loving and supportive care, Ms Hell said.
She said her 38-year-old son who has a severe intellectual disability could be placed anywhere if she “dropped dead tomorrow”.
“They can’t just be shoved anywhere. We can’t cope with that.”
Ms Hell said the group’s vision was a large one, but it was a necessity.
“We have the strength to do this, but we need the community support.”
Ms Stapledon said the group had not established a final figure required to build the facility, but the first step was to secure a piece of land for the village.
To support Disability Capability call 5983 8785.