Five-year-old boy with brain cancer denied financial aid from government-run disability insurance scheme
The Australian family of a five-year-old boy dying from brain cancer was devastated when NDIS funding was refused to him as his disease was terminal
ALDINGA BEACH, SOUTH AUSTRALIA: The family of a five-year-old boy dying from brain cancer was devastated when he was denied National Disability Insurance Scheme (NDIS) funding. Spencer Barton, a fan of Spider-Man and other Marvel superheroes, was diagnosed on July 3 with an aggressive and incurable brain cancer.
The family learnt that the NDIS had rejected their petition for help due to his terminal nature of his illness.
Spencer's bereaved family, who live at Aldinga Beach, South Australia, had been informed that Spencer had less than a year to live.
'We were told that because he has a life-limiting disease'
"We were told that because he has a life-limiting disease, he will not receive any financial support from the NDIS," said the five-year-old's mother, Laura Loughhead.
On Tuesday, September 12, she informed the Daily Mail Australia that there had been an update in her efforts to obtain funds, and that there may be hope on the horizon.
"We have spoken with NDIS today, and they are working to fix financial concerns," Ms Loughhead added.
Spencer's cancer is located on his brain stem
Ms Loughhead has quit her work as an occupational therapist to care for Spencer full-time, and her husband, Scott Barton, has also left his career.
Spencer's cancer, a diffuse midline glioma (DMG), is located on his brain stem, which controls key basic functions such as breathing, swallowing, speaking, going to the toilet, and moving.
The Australian punk rock singer and his wife have been distraught when their baby child was diagnosed with cancer. Spencer was able to return home to Aldinga with his family following a high-dose course of radiotherapy.
Spencer was able to regain some function after the treatment, including talking, eating, and using the left side of his body, but Ms Loughhead stated that he "can't walk and requires a wheelchair to get around."
She wrote, "He needs 24-hour care and needs to be lifted in and out of beds/chairs. He has no safe way of getting out of the house and into the community."
Spencer, according to Ms Loughhead, is "determined and fighting to live his best life" despite the fact that he cannot function without significant support.
While Spencer was recognized as an NDIS member, the family was unable to obtain money for the therapies and equipment he requires, such as assistance getting into and out of bed, bathing, and driving.
"He is disabled and needs support to get out and live,"his mum said.
Bill Shorten expressed his 'deepest sympathies to Spencer and his family'
Federal NDIS Minister Bill Shorten expressed his "deepest sympathies to Spencer and his family," but stated the situation was the responsibility of South Australian health authorities.
Mr Shorten said, "I expect the NDIA (National Disability Insurance Agency) and South Australian Health can work together to ensure Spencer is receiving all the disability supports he needs in this extremely difficult time."
He said, "It is not acceptable to leave Spencer and his family in the lurch while levels of government argue about who is responsible.I will sort this out from my end and send South Australia an invoice for their obligations."
Mr Barton told the ABC, "It's a waiting game … each day's a wasted day without help."