Seventeen-year-old Isaac Wilcox had his plan under the National Disability Insurance Scheme (NDIS) approved in December. His parents, Rob and Leanne, received no notification of his approval, however, and were only told in February, after chasing it up themselves, that the application had been successful. They have submitted four requests for payment but are yet to receive a cent.

Isaac was born with Congenital Bilateral Perisylvian Syndrome (CBPS), an extremely rare neurological disorder that causes partial paralysis of face muscles, tongue, jaw and throat. He has difficulty chewing and swallowing and is fed through a tube into his stomach.

Isaac is prone to pneumonia so works hard on his physical strength in the gym but must be supervised by a personal trainer. The family owes his PT more than $500 and Isaac has been missing out on much needed physical, speech and occupational therapy because of a lack of funds.

“The trainer is wonderful and understanding but I can’t approach anyone else for therapy because I don’t want to owe them money too,” Leanne said.

Rob has spent countless hours on the phone, writing emails and sitting in an office in Canberra trying to track down the money.

“They said they would send an email to the finance team and get back to me in 24 hours. They said they called our home number but there was no evidence and they have my mobile number but no one has ever called,” Rob said.

“I went to the NDIS office in Canberra on Monday (May 15) and waited until I spoke to someone. They promised me the money would be in the account by the end of the week. It wasn’t.”

Rob received a phone call on Monday, May 22 to say the hold up was due to a processing error. 

“They left a zero off the front of our BSB number and it’s taken this long for someone to call us about it,” he said.

The Tribune also received a response from an NDIS spokesperson on Monday.

“The agency has made contact with the family and has amended the information on that participant's record to enable payment to be made within two working days,” it stated.

The Wilcox family is not alone in its frustrations. A local mother, who asked not to be named, had a planning meeting with the NDIS for her Autistic son last year.

“We only received ‘an introductory letter’ last week saying we are not answering calls. We’ve had zero phone calls. Now they say our son was entered twice and has two NDIS numbers,” she said.

“The NDIS could be amazing but they need to sort out the inconsistencies, miscommunication and misinformation. Families are asking themselves is it even worth it, which is really sad.”

The NDIS acknowledges there has been some challenges during the transition phase.

“We are constantly working to improve our processes to deliver the best NDIS possible,” the spokesperson said.