Renee and Greg Stewart, who are helping their 21-year-old daughter Macee transition through the scheme, are excited by its possibilities. Macee has epilepsy, down syndrome and autism. Unable to communicate her goals, her parents are her voice. Renee said a well thought out plan of attack meant that Macee had a package they were really pleased with. 

Greg believes that the current spending is high and that the review should result in a cut back on funds.

While foster parents Nancy and Graham Bailey agreed that the government did not anticipate the high costs of the scheme, they felt it was due to a lack of knowledge on the high level of need in the disabled community. The couple are helping their high functioning autistic son Josh transition.

“The system was set up around the number of people that ADHC (Ageing, Disability and Home Care) had on their books, actively providing for, plus a bit more, but they’ve put up everybody who’s ever been on their books,” Graham said. Nancy added that many people who had never received help before were coming out of the woodwork. 

The couple also suggested that the government did not realise how wide ranging and expensive the needs of people with disabilities could be.

“There’s people out there who need wheelchairs that haven’t been replaced and growing kids, and that becomes part of their NDIS package, and they’re expensive little things,” Graham said. 

Graham and Nancy are currently waiting for a personal review on Josh’s package, which they believe is not sufficient to help him fulfill his goal of independent living. Having applied for the review in mid November, the couple said they have had no contact from the National Disability Insurance Agency on the progress of the review – or if his package has been accepted for review. 

Calling back and forth between Inverell, Canberra and Moree, Nancy said she felt they were being played around with. Renee had a similar issue with Macee, and said there was a long wait with no communication between the interview period and Macee receiving her package. 

For Cheryl Hill, mother of Mark, who has uncontrolled epilepsy, the NDIS’ push on individual choice did not consider those with severe disabilities who had a very limited ability to make choices.

“I hope that they pick up that there are the Marks of this world that - yes, he has choices, but his choices are to be with his mum and dad or to live in a safe environment and be cared for.”