A Cordeaux Heights couple is devastated after their little girl's funding package was slashed by 75 per cent under the NDIS.
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Blaise and Rob Hall were initially allocated $43,916 for a six-month care package for daughter Eleanor who has multiple disabilities including cerebral palsy, epilepsy, vision and hearing loss.
But just before Christmas they were told that the package would be drastically reduced - to just $22,000 for 12 months.
Mrs Scaife-Hall said under the new package, there is no allowance for in-home care for Eleanor while funds for essential therapies such as speech and hydrotherapy have been radically cut.
She said they'd asked the National Disability Insurance Agency (NDIA), which implements the scheme, to review their case but the agency had recently upheld the funding decision.
The NDIS was meant to help people with severe disabilities and their carers. But you spend so much time on paperwork, and then to get a decision like this with no explanation, it's hard to take.
They now they have no alternative but to take their fight to the Administrative Appeals Tribunal.
"It took us seven months after our first planning meeting to get our package from June to December 2018, but they then asked for more evidence why Eleanor needs in-home care," Mrs Scaife-Hall said.
"We provided information from her paediatrician Dr Peter Kristidis who said she needed that one-on-one care, yet they ignored that.
"We've had that in-home care since she was two years old and to lose it is just devastating. It just feels like we've been abandoned by the NDIS."
Eleanor attends Para Meadows School five days a week and the in-home care is especially important for her on the three afternoons her mother works.
"We've now been forced to put her in regular after school care and they're lovely and do their best but she really needs that in-home care," Mrs Scaife-Hall said.
"She gets very fatigued and by the time she gets home from after school care she doesn't even have the energy to eat her dinner, which is of real concern as she's only 10kg."
Mrs Scaife-Hall said she may be forced to give up her job if the package was not increased.
"The NDIS was meant to help people with severe disabilities and their carers. But you spend so much time on paperwork, and then to get a decision like this with no explanation, it's hard to take.
"And each year you have to re-apply so there's no certainty about the future care that will be provided."
Mrs Scaife-Hall said Social Services Minister Paul Fletcher had told them he didn't have the power to intervene in their case. She said they just wanted to ensure Eleanor got the support she needed.
"She's really gentle, really sweet and so smiley and loves being cuddled and kissed," Mrs Scaife-Hall said.
"She is non-verbal but her speech therapy helps her communication skills and helps with her eating. Other therapies such as occupational therapy and physio help her develop the best she can.
"We just need the right amount of funding for these therapies to give her the best quality of life possible."
An NDIA spokesman said the NDIS was never intended to replace other mainstream government services, such as after school care.
"The NDIA is in contact with the family to continue to work with them to ensure they receive the reasonable and necessary disability-related supports they need under the NDIS," he stated.
"Where a plan includes early intervention supports or time limited supports, or where the provision of assistive technology or other supports, has increased independence and decreased the need for certain supports, a participant may need less funding or no longer need a specific type of funding through an NDIS plan.
"This means plan budgets may increase, decrease or stay the same at plan review, depending on a person’s individual circumstances and goals. This is line with the insurance principles that underpin the scheme."
The spokesman said the NDIA fully respected people's right to seek a review of a decision made by the agency and encouraged them to contact their local office and discuss their concerns.