Anonymous story 

My brothers latest plan had core supports funding cut by close to 70%. This has left him with 4 hours per week in the home assistance. He has a complex physical and intellectual disability, lives by himself and is wheelchair dependent. This has resulted in serious safety risks for my brother, worsening of severe pressure wounds and he is now at high risk for limb amputation and sepsis. Comprehensive reports and arguments were provided through the s100 decision review process, but they maintained the original decision. The NDIA are stalling on providing information required under a directive at AAT. Inadequate support coordination has led to me needing to spend at least 40 hours per week supporting my brother, who lives an hour away from me.  This is impacting on my own child’s development who has ASD 3, my mental health and my financial resources. 

I am a both an NDIS participant with complex needs and a single mother of a child who is also has disabilities.  I am absolutely exhausted, traumatised and disgusted with the way the NDIA has fought me for 2 straight years. I’ve been wanting to get involved with a class-action suit or any actions that will finally hold this Agency responsible for the extensive suffering and even deaths of PWDs who are simply asking for our basic human rights and needs to be met. I have never been suicidal before engaging with the NDIA, but in 2 years since my first plan, I have been actively suicidal twice and my functional capacity has plummeted. I cannot work even if I had capacity because fighting for a plan that meets my needs is literally a full-time job. 🙁 

I have been at AAT conciliation with NDIA’s lawyers for two years over an essential $2000 piece of equipment. The NDIA lawyers’ fees during this time have, I suspect, far exceeded the original cost of the piece of equipment. Originally we submitted 2-3 specialist reports as evidence of need, and along the way have had to submit numerous quotes and additional reports, all stating what the original quotes stated. We have felt bullied and delayed by their numerous lawyers and have felt this unnecessary process to be traumatising. This saga has delayed my son’s access to this essential piece of equipment and putting him in unnecessary harms’ way while he cannot access it. This is the bit that is particularly upsetting for me.