The Gold Coast mother of a severely disabled eight-year-old girl says she is locked in a bureaucratic nightmare with the National Disability Insurance Scheme.

Key points: Shannon Manning says the NDIS process isn't keeping up with her disabled daughter's needs

Shannon Manning says the NDIS process isn't keeping up with her disabled daughter's needs An advocate says the NDIA is ignoring clinical recommendations from doctors and therapists

An advocate says the NDIA is ignoring clinical recommendations from doctors and therapists Ms Manning says her dealings with the service are becoming unbearable

After nine NDIS plans over 14 months, Shannon Manning's daughter, Meadow, has received funding to repair a wheelchair that she does not actually have.

Meadow, who is on the autism spectrum, has behavioural issues compounded by recent trauma she experienced after being hit by a van, and has been removed from school.

"She won't leave the house, she doesn't feel safe anymore," Ms Manning said.

"I forced her to go to school and she actually kicked in a window at school and tried to throw herself through that window.

"[She] bit her teacher and knocked over another child."

Shannon Madding and her two children, Meadow and Madden. Meadow is in her old wheelchair. ( ABC Gold Coast: Cathy Border )

Christmas will come before the chair

Meadow poses a significant physical challenge for Ms Manning, who has received a black eye while trying to care for her.

Ms Manning has her own physically disability after the 'extensive degeneration' and collapse of her vertebrae.

Because Ms Manning's condition means she cannot lift anything heavier than five kilograms, Meadow needs a new, specially-fitted wheelchair and hoist.

"[The wheelchair] still hasn't been ordered, it's underneath agency management," she said.

"The wheelchair, best case scenario, will be June next year … it's been approved but nobody is ordering it.

"We're coming up to Christmas and everything shuts down for a minimum four weeks.

"I'd have a better chance talking to Santa."

Ms Manning said the constant reviews and paperwork required to navigate the NDIS is too much for people already caring for a disabled loved one.

"You can't make this stuff up, this is better than a Stephen King novel," she said.

"It's frightening — it's full of suspense, because you're always holding on and going 'well maybe I've done it right this time.'"

Ms Manning said she has had to continually prove her daughter is still disabled to the National Disability Insurance Agency [NDIA], with each instalment of new funding.

Reforms welcomed, but 'more needed'

In November, the Federal Government announced plans to improve accessibility to the NDIS.

Simon Nugus, the CEO of Volunteering Gold Coast, which provides support for around 220 clients including Ms Manning, said he welcomed the reforms.

"That's really important because a variety of people that I supported had to go into debt just to get access to a clinical assessment," he said.

But Mr Nugus said more changes need to be made, including the removal of performance indicators which can limit the amount of funding provided to individuals.

"The degree to which people receive funding to meet their goals and to meet their needs will only be addressed when these KPIs, which exists within the NDIA, are eradicated," he said.

"Probably 75 per cent of the people that I support … they've got clinicians saying to the NDIA, 'this is what this person needs,' and the NDIA choose to implement their KPIs instead of aligning themselves with the clinical recommendations."

An NDIA spokesperson said there is no cap on plan funds which are "individually-tailored, with funding determined on a participant's functional impact, needs and goals".

"Any person who is eligible for the NDIS will receive the appropriate funding to access the disability-related supports they need to live more independently and achieve their goals," the spokesperson said.

Communication 'in the too hard-basket'

Ms Manning said her next goal is to install shatter-proof windows at her home to prevent Meadow from smashing through them again and hurting herself.

But that progress, she said, has stayed "in the too-hard basket", leaving her in a state of anxiety.

Shannon Manning says the complexity of dealing with the NDIS has become too much to bear. ( ABC Gold Coast: Dominic Cansdale )

"[I need to] have a safe environment for my daughter … not have to worry that she's gonna kill herself this day through another window," Ms Manning said.

Mr Nugus said it is "ludicrous" to expect carers like Ms Manning to be able to manage the system in its current form.

"It's laughable for people to be expected to navigate this system," he said.

"There's a real desire to limit the degree of funding that's been provided to people."

A spokesperson for NDIS Minister Stuart Robert said the National Disability Insurance Agency has been in frequent contact with Ms Manning and that his office will not be commenting publicly on her case any further.