A woman who says she has been denied a new wheelchair for her severely disabled daughter has invited her local MP — who is also the Minister for the National Disability Insurance Scheme — to sit in on a meeting about the girl's needs.
Gold Coast resident Shannon Manning said seven-year-old Meadow had severe autism and required a wheelchair to go out in public, but had been knocked back because she was "not disabled enough".
Ms Manning said Meadow, who also has intellectual disabilities and epilepsy, was big for her age and that she could not move her daughter around without a wheelchair.
"She has thrown herself through a window and impaled herself," Ms Manning said.
"Two weeks ago, she kicked out the front windscreen of my car.
"On Friday, she did not want to go to school. She had a full-blown meltdown and hurt six teachers, another carer and myself ... the school went into full lockdown."
The NDIS families desperate for a better scheme
One Adelaide mother was left feeling "absolutely awful" after a review of her eight-year-old son Samuel's funding NDIS plan.
In addition, Meadow's younger brother Madden suffers from a condition affecting his bone growth and eating habits and also from anxiety.
Ms Manning, who is the sole carer of the children, underwent spinal surgery earlier this year after damaging her back lifting Meadow's wheelchair and sustaining blows from her.
"[Meadow] weighs 44.9 kilograms [and] I am about 50 kilograms and have sustained a permanent spinal injury from caring for her," Ms Manning said.
"I am not allowed to lift anything more than five kilograms. I can't even pick up my son — he is 20 kilograms.
"When he trips over and hurts himself, which is quite often, I can't even pick him up and give him a hug. I have to make him walk inside the house."
'He needs to spend a day with me'
The NDIS is aiming to provide funding to about 460,000 Australians under 65 with permanent and significant disabilities.
But since its rollout began in July 2016, the program, labelled "complex" by those relying on it, has been plagued with challenges.
Many families have described difficulty accessing items they need to care for loved ones, including a mother who was forced to use a wheelbarrow to move her nine-year-old son around while they fought for a new electric wheelchair from the NDIS.
Ms Manning said the National Disability Insurance Agency (NDIA), which implements the scheme, was aware of her situation and had granted six hours of care a day, which she said had "broken her".
Photo Stuart Robert is the Minister for the National Disability Insurance Scheme.
She said she had obtained quotes for a wheelchair and a hydraulic lift to get Meadow into their car, and had also sought assistance from her local MP, the Member for Fadden, Stuart Robert.
"I invited him to come to our NDIA planning meeting to see what it is really like — the real people who are in his electorate who are voting for him and who are NDIS participants," she said.
"Our most vulnerable citizens are our disabled and our children and it is everybody's responsibility to take care of them."
Ms Manning said the NDIA was expecting her to deliver the same level of care as before she had her back surgery.
However, she said she now had a pain syndrome and was unable to take medication due to needing to be aware of what her children were doing.
"Mr Robert needs to come and spend a day with me," she said.
"He needs to come to a plan review and see how uneducated the planners are."
When contacted for comment, Mr Robert said he was unable to comment on individual cases for privacy reasons.
Meanwhile, a spokesperson for the NDIA said it had been "working closely with Ms Manning to ensure that her children have the appropriate disability-related supports they need, and will continue to do so".
'All I have is hope'
Earlier this year the Federal Government promised significant changes to the NDIS, which it said would give people more certainty over their plans and force the troubled agency to make decisions more quickly.
But this had not eased Ms Manning's concerns.
"That is just lip service. All I have is hope."
With further surgery on her neck anticipated in the next five years, she said she hoped she would not be in a wheelchair herself.
"I am not asking for holidays. I want my home to be safe for my daughter.
"I want [Meadow] to be able to access the community and be aware of the environment she is in so she can grow and learn and be an active participant in society and in the community — that's what any parent wants for their child."