If an advocacy group folds parents fear they will not be able to cope, writes Julie Cross
JESSICA Boland recently turned 30 and loves playing with her dolls and watching her favourite TV program the Wiggles.
Born with a moderate intellectual disability, she is also an epileptic, and will never be able to live independently.
Her mum Kathy, 61, of Narrabeen, has continually fought to ensure Jessica gets everything she is entitled to from a proper education to adequate respite care.
But occasionally, she needs help and luckily, for the time being, she knows where she can get it. Action for People with Disability has helped resolve many difficult situations in Jessica’s life like when it was discovered she was being left in urine soaked pants at school.
The group also fought to ensure respite carers were with her 24/7 after her mum found out she was being left unsupervised.
Action again stepped in to help bring about an investigation after an incident in which a young boy lifted Jessica’s top.
And, then there’s the mountains of paperwork that has to be filled out again and again, just to ensure Jessica gets the government funding she is entitled. The introduction of the National Disability Insurance Scheme (NDIS) has been a minefield for families with disabled children.
”My dining room table is piled high with paperwork relating to my daughter,” Mrs Boland said. “The paperwork and form filling is relentless.”
Without Action, many families say they would have been forced to give up their children.
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