Capability and Culture of the NDIA
Submission 171
NDIS Capability and Culture Submission
We are the parents of ( Klose, our second of three daughters. We knew of Down Syndrome diagnosis before she was born and withstood substantial pressure from several doctors to end the pregnancy. We were more than happy to join the disability community and give our second daughter the same opportunities afforded to her two sisters, and we are extremely grateful for the government assistance we have received over the last 24 years.
Unfortunately, with the advent of COVID 19, like so many others in the community, mental and physical health spiralled out of control. Her violent self-harming and non-compliant behaviour, anxiety and weight gain meant caring for her in the home was becoming harder to manage. My husband and I both have demanding careers and despite our best efforts we felt that every member of our family was struggling with very unhappy situation. An insightful psychiatrist indicated that might be trying to tell us she wanted to live more independently in a highly supported setting (specialist disability accommodation [SDA]). Over time, we decided to explore this SDA option for her. So began our incredibly stressful and protracted NDIS SDA journey.
November 2020 As a trial, accessed STA (Short Term Accommodation) for 8 weeks and absolutely loved it. Her numerous behaviours of concern ceased immediately, and she began to lose weight and generally feel happier within herself. Unfortunately, the cost was so prohibitive ($42K per month) that we had to bring her home as our NDIS plan didn’t allow for such huge costs.
We engaged with a Support Coordinator who started the SDA application process so we could find a more long-term accommodation solution.
January 2021 With input from us, an SDA application was submitted to the NDIS SDA panel (which only meets once a month).
April 2021 After 3 months SDA application was reviewed by the SDA panel and immediately rejected, as not only did it contain her old NDIS goals of “continuing to live in the family home”, but also several pages of documents relating to another participant altogether! We were absolutely devasted to hear this, as was the NDIS officer who made this discovery. We received a phone call from the NDIS to say our application had been rejected, but we were never officially informed in writing or encouraged to reapply for this funding.
Meanwhile our Support Coordinator (SC) left the organisation she was with, so we were assigned to another SC who was even more incompetent than his predecessor. After weeks of hounding him, we finally submitted a new SDA application which my husband and I basically wrote ourselves.
August 2021 Finally, 3 months later, SDA funding was approved and thankfully the room in the fabulous highly supported house nearby was still vacant and available for However, it still took another 7 months until March 2022 for the accommodation providers to complete the roster of care and Supported Independent Living (SIL) funding to be submitted and approved by the NDIS.
Capability and Culture of the NDIA
Submission 171
Now is thriving and finally able to enjoy the same basic rights as others to live a more independent adult life. She absolutely adores her 3 female housemates and wonderful carers and has lost more than 20 kilos! Her mischievous sense of humour and infectious laughter have returned, and she tells us all the time how happy she now is. As her doting parents we could ask for nothing more, but we are still reeling from the amount of effort and persistence it took to secure this new life for our daughter.
We firmly believe that this drawn out and incredibly traumatic process should never have taken this long (16 months). Time and time again we encountered NDIS staff who simply had no idea what they were doing. Had it not been for our dogged persistence and determination, our daughter would still be languishing at home living a far from fulfilled life.
We are happy to make our lived experience public so that other families do not have to face the disheartening hurdles that we encountered at every turn.
Please do not hesitate to contact me or my husband on the details below.
Yours sincerely,
Kitty O’Sullivan ( mother)
Andrew Klose ( father and nominee)