Girl unable to come home for Christmas due to NDIS issue
An 11-year-old tetraplegic girl on a ventilator is unable to return home for Christmas from hospital due to "constant stalling" with NDIS funding.
Abigail Sweeper has been left in limbo by the system, her mother Amanda says, for seven months waiting for the National Disability Insurance Scheme to approve funding they found her eligible for to move her from Queensland Children's Hospital to their home near Laidley, southwest of Brisbane.
The move, which has been supported by West Moreton Hospital and Health Service and QCH, would see Abbie return to her home in Plainland, 6km from Laidley Hospital.
Abbie is on the QCH's ventilator program, which typically stretches up to 40km from Brisbane for safety and logistic reasons with paramedics, however QCH said it was actively engaging with the NDIA, ambulance service and West Moreton Health to ensure she received the care she needs as close to home as possible.
The 11-year-old, who fell from her horse last year in a freak accident at the Laidley Pony Club, suffered severe spinal cord damage and remains in a wheelchair with no movement from the neck down.
She has since been told she is eligible for 24-hour ventilator care at home by the NDIS, however her family claims repeated stalling by the NDIA has seen her unable to return home to be with her horses and dogs for Christmas.
"If my kid was a palliative care kid, she would be allowed to go home to die, but she can't go home to live," Ms Sweeper said.
"We're in purgatory - we're in limbo, we have been in limbo for seven months.
"We're literally stuck in a unit in Brisbane not allowed to go home and this is the second Christmas she's missed at home and we just have no provision to pay staff out of our pocket to go home."
Ms Sweeper said she has written to both state and federal NDIS ministers and has not received any solution while the NDIA had repeatedly returned to the family seeking information already provided by Abbie's specialists at QCH.
"We're being held hostage by NDIA whose responsibility is to help people with disabilities to have independence and that's just not what's happening," she said.
The family were told initially once leaving the hospital by the NDIA that she would be allowed respiratory care before also receiving in writing she was eligible for 24-hour care.
However an NDIA spokesperson said it was wrong to suggest the agency was stalling in its efforts to assist the Sweeper family closer to home.
"The agency is supportive of the family's desire to move and has not declined or delayed any request from the Sweeper family for funding support," the spokesperson said.
"The NDIA is aware of the need to consider local health authority requirements and advice to ensure safe living arrangements."
Originally published as Tetraplegic, 11, stranded for Xmas by 'stalled' NDIS