Budget 2017: ‘Good news, now it just needs to be implemented’

The rollout of the NDIS has been rough, at best, and western Sydney mother Amanda Preece knows the toll it has taken.

Amanda Preece with daughter Ella Lee, almost 5, who suffers cerebral palsy and other disabilities and will benefit from better NDIS funding. Picture: James Croucher

It never occurred to western Sydney mother Amanda Preece that her daughter would be worse off under the heralded national disability insurance scheme because the promises were so bold, so rock-solid.

Reality has a habit of interfering with such promises, however.

Ms Preece’s daughter Ella Lee, almost 5, has quadriplegic cerebral palsy and other disabilities. But since moving to the National Disability Insurance Scheme in the Nepean-Blue Mountains trial, she has lost about half of her therapy funding.

An appeal and external review via the Administrative Appeals Tribunal took months and then ran aground.

“Under the old system, we had weekly therapy for Ella but we cannot do that any more because we’re spending about $500 for every appointment, including provider travel costs, from a budget that is just $8500 a year,” Ms Preece said. “They (the NDIS) keep telling me it is my responsibility to make that money work with the service providers.”

The process from the beginning has been a bureaucratic tangle. Ella has had 18 different plans since she started with the scheme in July last year.

“I feel like giving up, but that is exactly what they are hoping for,” Ms Preece said. “This whole process has been devastating for my family.”

Beyond the therapy fight, Ms Preece has fought to have a special gravity chair funded. Other children with identical diagnoses and impairments to Ella’s have had theirs granted by the NDIS.

“I’m still fighting. We even had to fight to get a special head rest for her put in. She can’t hold her head up in the wheelchair,” she said. “Ella needs specialised equipment for most things she does every day. She is young and growing. She isn’t going to stop needing this stuff.”

But last night, there was new hope as Ms Preece welcomed the news the government had a plan to boost disability funding.

“That is such good news they have funded the NDIS in full,” she said. “Now it just needs to be implemented properly.”