My daughter has a very rare neurodegenerative terminal illness. She has extreme variations in her functional abilities. 

Alicia Brown

Extensive reports from multiple treating specialists state that she needs 2:1 support during all waking hours to enable her to move safely.  She requires regular input from 8 different allied health therapists, and a range of Assistive Technologies.  She has been underfunded continuously with essential support denied in all 3 categories.   

She was left without access to ANY funding for approximately 3 weeks in December 2020 after her underfunded “temporary rollover” plan was exhausted, after the agency failed to provide her with a new plan, more than 10 weeks after a planning meeting saying it was too complex.  I had a fall the night the funding was exhausted and snapped my arm off my shoulder and was left alone to care for her at nighttime. That 3 weeks cost us approximately $50,000 to keep her supports going at a minimum, with no guarantee of funding being reinstated over the Xmas and new year period.  

When a new plan was finally issued it was grossly underfunded and supports that were written into the plan in the “how I will meet this goal” section were denied funding. She was forced to have an independent assessment a year later that was a stark contrast to all other reports which have continually been denied, despite video evidence and further treating specialist reports.  

They then tried to force her into agreeing to a s42D plan that would result in her losing access to a stand-aid that she relies on for using the toilet. The independent assessment that they were relying on would have left a semi-mobile, weight bearing, life loving, 27-year-old – bed bound in an unsuitable bed.   

They expected her to be hoist lifted only into a wheelchair that had been denied customisation for 2 years.  She would have been left in the wheelchair without adequate support to reposition or get out or use the toilet, denied access to community other than to be pushed in her chair “for a walk through the park” and put to back in an unsuitable bed at 8pm for 12 hours with only 1 person to attend to her, unable to safely roll her or allow her to get up.  

When questioned about how she is to use the toilet in community without the AT being funded, the agency said she should use the toilet before and after leaving her unit, ignoring her need or right to use a toilet when she needs to or leave her unit for less than the 1.5 hours their recommended schedule would allow. This is just the tip of the iceberg of how we have been treated.  

I lost my job, my business, and my studies to fill in the gaps where her support is being denied. My health has suffered, my relationship with my daughter and my other family members has suffered with the stress, pressure and time I have been forced to be on the computer or phone coordinating reports, reading and writing emails, justifying her needs again and again and again, to have it all ignored in favour of the independent assessment that completely ignores every one of her goals and basic human rights. 

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