Carly Jensen says she’s lucky to feel like a pretty normal woman most of the time, at least until she has to get ready for her National Disability Insurance Scheme planning meeting.
- A regional woman from NSW will take the stage to share her experience of living with a disability
- Carly Jensen says dealing with NDIS hurdles is stressful
- Seven residents of the border region will present stories which will be used as submissions to the royal commission
According to her, this is a process that many people with disabilities find stressful and conflicting.
“We get really upset when NDIS meetings happen because of the pullout,” the Gerogery resident said.
NDIS planning meetings are held at the end of each NDIS participant’s care plan period, which can range from 12 months to three years. Participants are asked a series of questions in order to develop a support plan. A family member is often also interviewed.
“What we’re trying to get the NDIS to do is say, ‘Hey, that’s really great, you’ve been doing so well over the last 12 months, let’s keep it going,'” Ms Jensen said.
She was born with cerebral palsy and a hole in her heart.
At just six weeks old, she suffered a stroke and spent the first three months of her life in hospital.
Despite a difficult start, that hasn’t stopped her from living a full life and she refuses to be pigeonholed by her disability.
“I grew up with parents who tried to make me as normal as possible.
“The only thing people can see is that my right arm is two inches shorter than my left arm and the same as the leg – that’s it.”
But despite this positive outlook, the anxious speed bumps that the NDIS planning process generates for her and her family remain.
She is now eager to shine a light on the struggle she faces through a three-part skit presented to the Albury community as part of a Telling Stories for Change event.
Her story, along with others from the local disability community, will be recorded and submitted to the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disabilities.
Ms Jensen said she and six other people who would share stories of their lived experience of disability in the local community were eager to have their voices heard.
“A lot of disabled participants I hang out with find that people don’t treat them normally,” she said.
It is also an opportunity to tell their stories to policy makers.
“What we hope is that the royal commission will find in this area that there are a lot of things that we want,” she said.
“People with disabilities find transport ridiculously boring.
“Some of them can’t hear, some of them can’t speak, and we’re just publishing our stories to show the royal commission what we need in this area.”
Building alliance and understanding
Tim Daly, chief executive of This is My Brave Australia, said the event was a creative but important way for residents with disabilities in the border region to share their concerns.
“Unless the commission speaks directly to the people that things are happening to in the real world, they don’t know about it,” he said.
“So it is very important that these people tell their lived stories directly to the commission.
“It’s the only way for the commission to find out what are the negative things affecting people with disabilities in the community.”
He said the NDIS and the anxiety it creates was a major theme that came up in the submissions.
It’s not just the royal commission that Mr Daly wants to hear these stories of hard-won hardship and triumph.
“We just want people from the local community to come and listen to these stories because that’s part of building support for people with disabilities, for other people to know what’s going on in their own communities with people with disabilities.
“Maybe they can do things to change that environment for people with disabilities in their own community.”
The Telling Stories for Change event will take place on May 22 at 5:30 p.m. at the City Central Church Auditorium, Albury.