NDIS Amendment Bill Submission

The proposed changes to the NDIS cause great concern because they will take away our voices, greatly reduce our choice and control. The NDIS must continue to be person-centred and take a whole person approach to ensure our expertise re our bodies is taken into account so our needs can be met.

I am a 62-year-old woman who has cerebral palsy and multiple conditions. Therefore, I am difficult to treat, my needs are complex . My treating team often find that when they improve one thing, they create another problem elsewhere, because of the way, my body compensates. Equipment that is scripted for me is often not suitable by the time it gets delivered 2 to 3 years after the script was completed. Using rented equipment that didn’t meet my needs for lengthy periods has caused changes to my posture and a decline in my abilities and independence.

In 2022 I went for a review with the NDIS asking for more carer hours. My bowel habits, were such that I was on the toilet during the night into the early hours of the next morning. My transfers at that time of the day were dangerous. I was shocked to find that the NDIA decided to reduce the number of hours of care I received at night. Instead of carers I was given money for nappies and a bath. My physiotherapy hours were reduced as well. I had no other option, so I took the NDIA to the Administrative Appeals Tribunal (AAT). The appeals process was a long, drawn out and stressful.

• During the appeals process, my ability to walk and perform multiple transfers safely reduced. This occurred because of an increase in my spasms and tone brought on by overuse of my right hip muscles and stress. I also suffer with facet joint disease in my lower spine which causes deferred pain down my right leg. This is due to increased amounts of sitting. The NDIA solicitor added to my woes due to her personal attacks during conciliation and time consuming fact finding missions. if the NDIA is going to want medical reports a person with complex needs such as myself will be greatly disadvantaged, lost in a sea of red tape.

• In July of 24 my wheelchair, commode, armchair and mattress do not meet my needs. Therefore, I do not have a comfortable place to rest which greatly impacts my mental health. Any increase in my anxiety impacts negatively on my muscle tone which then decreases my ability to mobilise. The frustrating thing is I have a ceiling hoist that I cannot use because I need to have two carers operate the hoist as per the safety guidelines. Living in fear of falling which is preventable is a horrible way to exist. The NDIA must not be given new power that changes how participants plans are managed and allows debts to be raised if the NDIA decides funds have been misused .

• I have been a disability advocate since I attended mainstream education with my brothers and sisters in1966. I went on to become a primary school teacher, married and had two children against the odds and despite the system.

Shaunagh Stevens

The day I sat in a wheelchair was the moment I became voiceless. The NDIS was created to give people with disabilities a voice and improve the quality of our life. Nothing about us without us.