Imagine having to rely on someone scratching their nose, having dinner, or just talking.
Important points:
- Tracey Gibb suffered a brainstem attack and became quadriplegic
- She only uses her eyes to communicate
- She wants to move to a two-bedroom facility to accommodate her full-time carer, but NDIS only funded her for one room
It is the reality that Adelaide woman Tracey Gibb faces every day.
At 19, she had a rare brainstem attack and collapsed while crossing a busy street in Adelaide.
After being in a coma for three weeks, she woke a quadriplegic.
Tetraplegia, also known as quadriplegia, means that Ms. Gibb cannot move any of her limbs.
“Tracey is totally dependent – she can move her eyes and mouth, she has no voice, but if you get in her way and annoy her, she can come up with something that you will actually understand,” said Ross Thompson, her supervisor .
“Even if she has no voice and can tell people, that’s a big disadvantage, so she is totally vulnerable and totally dependent.”
Despite being confident and extremely independent, her 20-year-old caregiver said she still needs 24/7 care for tasks that most people wouldn’t think twice about.
“Tracey is scared of falling because she is totally addicted,” he said.
“You just need to know that someone is there in case – it’s okay to say you might have a bell to ring, but what if you had a cough at night and your head is moving,” he said .
“When it moves too far and she can’t reach it [the bell] … she just has to wait for someone to come. “
Confident and powerful
Ms. Gibb has always been interested in how the brain works, and this year she found the confidence to study criminology and psychology.
She has also started a casual job at Scope Global providing training, online research and updates on the disability sector in South Australia. She was also awarded the Stroke Foundation Courage Award for 2020.
Ms. Gibb uses special equipment valued in the tens of thousands of dollars is able to independently write emails and reports, and keep in touch with friends through social media.
However, their trust in 24-hour care makes working and learning extremely difficult.
She has lived in Highgate Park, the former Julia Farr Center, for more than 20 years and shares a room with someone who needs assistance with disabilities.
“When Tracey is in a tutorial and the other person needs help, you can’t just leave the middle of a tutorial group [and say] “Oh sorry folks, you’ve got to put on hold because my support agent left,” said Mr. Thompson.
She is now trying to move into a new, purpose-built apartment that better suits her lifestyle and allows her to study and receive care.
She needs funding for a two-bedroom apartment to house her caregiver, but said she was only approved for a one-bedroom place by the National Disability Insurance Scheme (NDIS).
I’m sick of fighting
Ms. Gibb said her dreams of an educated and independent life were curtailed by the NDIS.
“You had high hopes for the NDIS because you came across its pre-launch at various conferences, but the reality is it was a train wreck,” Thompson said.
“It hasn’t achieved what it was supposed to, it hasn’t given people a choice, it has given people a headache, they have to fight for everything and justify it, even if it costs more money, things that are just basic should.” you get what is only a requirement for you to live.
Simon Schrapel, CEO of Uniting Communities, said he was deeply disappointed with the outcome of the NDIS.
“Tracey has the option of staying in a purpose-built two-bedroom apartment with her supervisor to support her … and yet we have this really mean-minded decision by the NDIS that is currently preventing her from doing so,” he said .
A statement from the National Disability Insurance Agency said that Ms. Gibb had funds in her NDIS plan to accommodate disability professionals, which only 6 percent of NDIS participants had access to.
A spokeswoman said people could opt for alternative accommodation and may have to fund the difference in costs.
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