Tania is celebrating five years living in her Home in Place managed Specialist Disability Accommodation (SDA) home in the Newcastle suburb of Jewells in NSW.
She says she cried a lot when she went to view the three bedroom home because, for a long time, she didn’t think it would be possible to be once again living so happily with her family.
After experiencing a stroke, Tania had to live in aged care for three years.
“After the stroke, I couldn’t move or see, only hear,” Tania says.
“My husband Len noticed I was blinking. He alerted the doctors and we started communicating with me blinking to answer his questions. It took a couple of weeks to get my vision back and a month to get movement in my thumb so I could push down on a computer to communicate. It was 10 months before I got my speech back.”
The fight to live independently with her family
Tania was initially rejected for SDA funding in her NDIS Plan because she wanted to live independently with her husband and daughter. She and her husband looked at 34 houses to rent privately before they found one, which was barely suitable. Tania had to sleep in the kitchen/dining room because her hospital bed couldn’t move on the carpet. She fought for 10 months to become the first Australian to be approved to live in SDA housing with family.
They initially lived in a Summer Housing SDA apartment near Lake Macquarie, which she loved.
“I was stoked, very grateful to live in that new SDA apartment. It was wonderful. But our current home has everything we wanted. There is a yard for our dogs – Stella the dachshund and Moo Moo the Maltese Shih Tzu – as well as a shed for Len to tinker in. It completes our family.”
The 2nd Chance bus
In the yard and shed, Len has converted an old Toyota Coaster bus so the couple can go camping. He and Tania have named it the 2nd Chance bus. It has solar power, a ceiling hoist and fits Tania’s bed.
Tania says her husband of 35 years is her best friend. Before her stroke they enjoyed riding motorbikes together, camping and fishing.
“At home I am in my room in the hospital bed and Len in his. The bus gives us quality time together – the chance to enjoy camping again and to yarn and bond again.”
“We’ve had several trips to regional NSW and joined a Facebook group to meet other Coaster owners.”
Tania has always been worried about where Len would live if she passes first. Now she knows he has the bus and can go wherever he wants.
“The bus is also a story of friendship and a tribute our dear friend who, along with his wife and my best friend, lent us some of the money for the bus and helped with the refurbishment. He sadly died suddenly before the bus was finished, so it is a tribute to him.”
Sharing stories to pay forward, support and advocate
Tania is proud Awabakal women and advocate for Indigenous and non-Indigenous Australians with a disability. She worked for the First Peoples Disability Network of Australia and now works as a peer mentor with the Community Disability Alliance Hunter.
One of the most rewarding projects Tania says she has been involved in was supporting residents to transition from NSW government disability institutions in the Hunter region to purpose-built SDA housing in the community. (Home in Place was part of the consortium that built and now manages those homes.)
She is grateful to have the NDIS and SDA.
“Without it I would be in a nursing home. But the NDIA and others need to remember that the NDIS was created to give people with a disability greater choice and control. The system and administration needs to be as focused on that as it was when it first started.”
She shares her stories to encourage and empower people with a disability to push for their right to choicer and control to live independently in the community.
“When I am peer mentoring people there are some who don’t want to talk and won’t look you in the eye. Six months later they are sitting up the front and confidently participating. I love working with others and watching the positive changes in them. They know they have choices and they should make them.”
