South Australian five-year-old boy with brain cancer refused NDIS funding
The family of a five-year-old boy dying of brain cancer has been shattered after he was denied NDIS funding.
Spencer Barton, who loves Spider-Man and other Marvel superheroes, was diagnosed with an aggressive, incurable and inoperable brain cancer on July 3.
His distraught family, who live on Aldinga Beach in South Australia, were also told Spencer had less than a year to live.
The family suffered another blow after the National Disability Insurance Scheme rejected their application for assistance due to his terminal condition.
“We have been told that because he has a life-threatening condition he will not receive financial support from the NDIS,” said the five-year-old’s mother, Laura Loughhead.
She told Daily Mail Australia on Tuesday there had been an update on efforts to access the funding and there may be hope on the horizon.
“We have been in contact with NDIS today who are working to resolve funding issues,” Ms Loughhead said.
On July 3, Spencer Barton (pictured), who loves Spider-Man and other Marvel superheroes, was diagnosed with an incurable, inoperable brain cancer, leaving him with no chance of survival.
Spencer’s (pictured) distraught family were also told that Spencer had less than a year to live
Mrs Loughhead has quit her job as an occupational therapist to care for Spencer full-time, and her husband Scott Barton has also quit his job.
Spencer’s cancer – diffuse midline glioma (DMG) – is on his brain stem which controls vital body functions such as breathing, swallowing, speaking, going to the toilet and moving.
After a high dose of radiotherapy, Spencer was able to return to Aldinga with his family.
The treatment allowed Spencer to regain some functions, including talking, eating and using the left side of his body, but Ms Loughhead said he ‘cannot walk and needs a wheelchair to get around’.
‘He requires 24 hour care and needs to be lifted in and out of beds/chairs. He has no safe way to get out of the house and into the community,” she wrote on Facebook.
Mrs Loughhead said that although Spencer could not function without enormous amounts of help, he was ‘determined and fighting to live his best life’.
Although Spencer was accepted as a participant in the NDIS, the family was unable to secure funding for therapies and equipment – such as helping him get in and out of the car, out of the bath and out of the car – that he needs.
“He is disabled and needs help to get out and live,” his mother said.
Federal NDIS Minister Bill Shorten expressed his “deepest condolences to Spencer and his family” but said responsibility for the matter lay with South Australian health authorities.
“I expect the NDIA (National Disability Insurance Agency) and South Australian Health can work together to ensure Spencer gets all the support he needs at this extremely difficult time,” Mr Shorten said.
Mrs Loughhead has quit her job as an occupational therapist to care for Spencer (pictured) full-time
Spencer (left) is pictured with Santa Claus and his older sister Indiana (right)
‘It is not acceptable to abandon Spencer and his family while governments argue over who is responsible.
“I will sort this out from my end and send South Australia an invoice for their obligations.”
“It’s a waiting game… every day is a wasted day without help,” Mr Barton told the newspaper ABC.
“We’re trying to build him up as much as we can and we just told him you’re the bravest boy we know,” Mrs Loughhead said.
Family friend Tracy Jolly made one GoFundMe page for the family.