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Tom in Tasmania is a quadriplegic and currently lives in a unit next to his father’s house. Most of his care is provided by an organisation, however he has tea with his dad and is comforted to know he is nearby at night should he need him.

“My dad is getting older and won’t be able to look after me much longer and I worry where that will leave me,” Tom says. “I’m hoping the NDIS will provide some options for my future supported accommodation needs. I do NOT want to end up in a nursing home”

Gerard is 65 and his wife is 60. They support their 22-year-old son with a profound disability who needs 24-hour care, and they also work full time. They are very concerned about what will happen to their son when they can no longer care for him.

“We are worried about the long term future, as we age,” he says. “We would like for him to be in a supported housing facility or a group home, where we also can have access.”

And then there is Joanne. “I am 39 years autistic girl, and live at home with my elderly parents in a rural residential area, away from the town,” she says. “I need to be able to live with a couple of peers in supported accommodation, in the town, or maybe on my own, with staff coming in when needed.”

Others would also like to see a move to better supported accommodation that allows greater privacy and independence.

Like Vanessa. She is 27 and lives at home with her parents and three siblings. She’d like to see “some sort of retirement village style accommodation where residents (youngish people with disabilities between 18 and 35) could live in a safe environment with a central location for support workers and a place for the residents to eat together and share with the chores of daily living as well as having their own amenities and kitchens/ laundries if they chose to be more independent.”

Heidi shares Vanessa’s dreams. “My housing ideal is to live in a small peaceful village setting where independent living tenants with episodic illness challenges have our own private homes (bedroom, lounge, bathroom, kitchen) but we share a common room/space or kitchen in the middle that we can socialise when we’re up to it.”

Sally’s 18-year old daughter is currently at home with her family. “I would like her to be able to live in a small supported group home preferably with her friends by the time she is 25,” Sally says.

A few parents of young children with disability suggested the option of having their children close by as they got older.

“Our son is currently 11 yrs old, but we would like to know that we can arrange to have a retreat/granny flat on our property down the track, so that we can help support him and yet let him have some space and independence.”

Just finding suitable accessible accommodation is a huge challenge for many Every Australian Counts supporters. Many said up to three quarters of their income goes towards their rent and essential modifications can be tricky.

Carolyn in Queensland struggles in a rental property that doesn’t allow any permanent fixtures to be installed. She has had to put in a temporary wooden ramp leading to the shower a foot above the floor.

She wants to see new “changes to legislation requiring new unit building developments to include 10% of all units with disabled access, bathroom, disabled car parks etc.”

Similarly, Joanne points out that “a few European countries have made adaptable housing mandatory even in the private housing sector for a few decades now. It has proven to have little negative effects affects but has shown far reaching positive and economical benefits for the entire community.”

Lisa is an architect as well as a paraplegic in a manual wheelchair and so is particularly well versed to speak about the dearth or lack of accessible housing. She says “it’s incredibly difficult to find suitable rental housing. Bathroom/toilet access is the biggest stumbling block. Older housing CAN be made accessible with ramps and lifts in most situations, with adequate funding.”

Jane was lucky enough to have parents who were able to provide her with her own home. She doesn’t know how she would manage otherwise. Her idea is “to reduce stamp duty or provide small grants for those who rent, to offset costs of modifying one’s home.”

Single mum Corrine says her son “desperately wants to be independent and move out of home and live with other similar young people. “I have made enquiries about support living/group housing and have been told to “forget it” it won’t happen,” she said.

“I would like to drop my son to one of the disability ministers homes for a few months and see how quickly things get moving when they realise just how hard it is,” Corrine says.

Indeed. Thanks to everyone for sharing their stories and ideas. We will be passing them all on to the disability ministers ahead of their next meeting.

You can read all the stories here or add your own here.