National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 877
I am a 61 year old woman living with Limb Girdle Muscular Dystrophy type D2/R3. It’s a genetic progressive muscle wasting condition that in my current life renders me completely dependent on support workers 24/7 for all activities of daily living, a ventilator for breathing/life support, a powered wheelchair and modified vehicle for independent mobility and community access, a hi-lo fully adjustable bed, a powered hoist for transfers from wheelchair to bed/toilet/shower, a shower chair and a modified house for easy access and independent mobility.
All these requirements are essential for me to just survive, but more importantly to live with dignity, choice and control. Growing up there was very little or no government support for these services and equipment. My single mother had to work from home doing ironing to supplement a carer’s pension in to support myself and my brother with the same condition. On her own she provided physical and financial support to both of us to keep us as mobile as possible and happy. We didn’t have a modified vehicle because there was no money to buy one let alone modify it, which is still the case for many people with disabilities on pensions. Equipment was partially funded and support work non-existent.
It was only when I became employed and acquired a physically able partner that I was able to financially afford the “luxuries” of a modified vehicle and fully accessible house in the early nineties. Support work was only funded for ten hours a week by council in home care, plus ten hours of workplace support through a pilot program that thankfully continued throughout my fourteen years of employment. It took eight years of continued applications to DHHS to be considered for priority to access the program for 32 hours in-home support. I was repeatedly asked to prove my need for priority which was given to individuals living in institutional care who were wanting to live independently. When the government changed the criteria to include individuals at risk of institutionalization, I had grounds to argue that my partner’s health was declining due to the daily demands of my care.
By the time the NDIS rolled out, my marriage had reached breaking point. Without the NDIS I would not be living in the comfort of my own home with my dog and my garden. I would be in a high care facility that is cold and clinical with others, which I have experienced for respite and will never forget for the
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 877
nightmare it was. My first plan included almost 12 hours daily support work to ease the burden on my partner, but ultimately I needed 24/7 when he left. The ability to have the choice of support and how much was paramount. The stress of a marriage breakup was alleviated knowing I could live independently in my home.
The NDIS also gave me the opportunity to update equipment that I couldn’t previously afford, such as a new wheelchair. My 17 year old wheelchair was no longer “viable” for repairs because parts were unavailable. Even though my choice of wheelchair was questioned and challenged with an ensuing six months of time wasted in legal fees and anguish in the Administrative Appeals Tribunal, I now have a fabulous wheelchair that meets all my needs.
I understand that functional capacity assessments are required, but there is a point where they become overly bureaucratic, repetitive, intrusive, impersonable and inappropriate. I’m tired and alarmed by the prospect of the proposed bill which will necessitate more justification for my needs for existence. There are so many other administrative processes in the NDIS that need cutting back and scrutiny before tearing apart and risking peoples’ lives. The Disability Community has fought long and hard for the NDIS and no government should be allowed to pass the cuts intended by Labour without any consideration first for increased taxes for gas companies and multi billion dollar corporations. Or decreasing spending on ineffective and unwarranted military equipment.
I sincerely hope my one voice of many thousands is heard to stop the bill for NDIS cuts being passed.