Post by bear on Jun 7, 2022 19:50:06 GMT 7
I have to prove how ‘autistic’ my girl is - she doesn't fit the NDIS stereotype
A Victorian mum fights to get NDIS funding support for her daughter with autism.
A feeling of bitter disappointment has clouded every interaction *Rachel has had with the National Disability Insurance Scheme (NDIS).
She doesn’t understand why she has to fight so hard to get funding and support for her eight-year-old girl *Madison, who has autism.
“It’s absolutely heartbreaking to beg and plead for them to see the struggles she faces… I become so emotional and their response is just so generic and uncaring,” the Victorian mum-of-two tells Kidspot.
"Doctors blamed my daughter's behaviour on my 'bad parenting'"
Little Madison was diagnosed with autism at age six after years of struggling with social situations, sensory issues, emotional processing and spatial awareness.
Rachel had raised concerns about her daughter’s behaviour multiple times before that but had struggled to be taken seriously by doctors.
“If you don’t know what to look for, then you’d just think she’s being annoying or rude... so doctors just blamed my ‘bad parenting’,” she explains.
“It made me feel like I could do nothing right, that I was a bad mum who sucked at parenting.
“I didn’t understand why and how I had to work so hard at something that seemed to be ‘easier’ for every other mum.
“By the end, I felt like I wasn’t supposed to be a mum and shouldn’t have had kids.”
"I feel like I have to prove how ‘autistic’ my daughter is"
Although Madison finally ended up being diagnosed with autism – the long delay meant that she missed out on many critical “early intervention” therapies for autism.
As a result, Rachel was desperate to get as much help as possible and immediately started looking into occupational therapy, counselling, animal-assisted therapy and social groups for her daughter.
Rachel knew she wouldn’t be able to afford all of this on her own – as she estimates it would cost over $30,000 each year - so she turned to the NDIS for funding support.
However, she quickly figured the NDIS had a “stereotype that my daughter has to fit in order to receive support”.
“As she’s not ‘severely’ autistic, they seem to think she doesn’t need much funding… they don’t see the ‘value’ in the support and therapy that I’ve asked for,” the frustrated mum continues.
“I feel like I have to prove how ‘autistic’ she is because she doesn’t look like their stereotype.”
"NDIS funding only gives me enough for one therapy appointment a week"
After countless reports and meetings, Rachel finally managed to secure a $13,000 funding package for Madison.
Although this might sound like a lot, Rachel says that it barely covers the cost of one therapy appointment each week.
"I currently have to rotate between different therapies each term so the money lasts and I don’t use it all at once,” Rachel describes.
“Ideally she needs the therapies to be consistent and regular so that she can form relationships with the therapists and in turn get the most out of therapy.
“Right now, there’s so much time between sessions that they basically have to start from scratch every time... we desperately need more funding.”
An NDIS spokesperson said the scheme continues to provide disability-related supports to *Madison.
"Where a participant believes they require additional support, they may request a change of circumstances review and supply additional information to support that request," the spokesperson said.
"At this stage the evidence provided has not resulted in a decision to change the participant’s plan."
*Names have been changed
A Victorian mum fights to get NDIS funding support for her daughter with autism.
A feeling of bitter disappointment has clouded every interaction *Rachel has had with the National Disability Insurance Scheme (NDIS).
She doesn’t understand why she has to fight so hard to get funding and support for her eight-year-old girl *Madison, who has autism.
“It’s absolutely heartbreaking to beg and plead for them to see the struggles she faces… I become so emotional and their response is just so generic and uncaring,” the Victorian mum-of-two tells Kidspot.
"Doctors blamed my daughter's behaviour on my 'bad parenting'"
Little Madison was diagnosed with autism at age six after years of struggling with social situations, sensory issues, emotional processing and spatial awareness.
Rachel had raised concerns about her daughter’s behaviour multiple times before that but had struggled to be taken seriously by doctors.
“If you don’t know what to look for, then you’d just think she’s being annoying or rude... so doctors just blamed my ‘bad parenting’,” she explains.
“It made me feel like I could do nothing right, that I was a bad mum who sucked at parenting.
“I didn’t understand why and how I had to work so hard at something that seemed to be ‘easier’ for every other mum.
“By the end, I felt like I wasn’t supposed to be a mum and shouldn’t have had kids.”
"I feel like I have to prove how ‘autistic’ my daughter is"
Although Madison finally ended up being diagnosed with autism – the long delay meant that she missed out on many critical “early intervention” therapies for autism.
As a result, Rachel was desperate to get as much help as possible and immediately started looking into occupational therapy, counselling, animal-assisted therapy and social groups for her daughter.
Rachel knew she wouldn’t be able to afford all of this on her own – as she estimates it would cost over $30,000 each year - so she turned to the NDIS for funding support.
However, she quickly figured the NDIS had a “stereotype that my daughter has to fit in order to receive support”.
“As she’s not ‘severely’ autistic, they seem to think she doesn’t need much funding… they don’t see the ‘value’ in the support and therapy that I’ve asked for,” the frustrated mum continues.
“I feel like I have to prove how ‘autistic’ she is because she doesn’t look like their stereotype.”
"NDIS funding only gives me enough for one therapy appointment a week"
After countless reports and meetings, Rachel finally managed to secure a $13,000 funding package for Madison.
Although this might sound like a lot, Rachel says that it barely covers the cost of one therapy appointment each week.
"I currently have to rotate between different therapies each term so the money lasts and I don’t use it all at once,” Rachel describes.
“Ideally she needs the therapies to be consistent and regular so that she can form relationships with the therapists and in turn get the most out of therapy.
“Right now, there’s so much time between sessions that they basically have to start from scratch every time... we desperately need more funding.”
An NDIS spokesperson said the scheme continues to provide disability-related supports to *Madison.
"Where a participant believes they require additional support, they may request a change of circumstances review and supply additional information to support that request," the spokesperson said.
"At this stage the evidence provided has not resulted in a decision to change the participant’s plan."
*Names have been changed