Tammie

 ‘When you have three or more people with disabilities within your family, I mean, this lovely idea of the NDIS as an individual-with-a-holistic approach, it’s bullshit.’

Tammie lives in a regional area and has several children with a number of disabilities between them.

‘I’ve almost had two breakdowns trying to get support,’ Tammie told the Royal Commission. ‘That’s also partially due to a support organisation that was so badly run they almost put me into another breakdown as well as not having the funding.’

Tammie’s eldest child is blind and now studying at university. A teenage daughter has an intellectual disability and ‘a beautiful heart’. One son in primary school is autistic, has severe dyslexia and loves audiobooks. Her youngest child has epilepsy and cerebral palsy.

The NDIS supports her children, but Tammie said NDIS planners struggle to understand the family’s complex problems.

‘I lost all faith in [planners] to be able to recognise the complexity of my [youngest child’s] needs and it really screamed to me that there needs to be almost levels of training in regards to planners.’

Tammie said the planners assigned to her youngest child ‘don’t understand the diagnosis even though it’s clearly written up’. During a recent review the planner admitted she had only an hour ‘to skim through the notes’.

‘We spent thousands getting consistent [reports] and getting prepared and getting the details that she didn’t even read.’

Tammie’s older children share an NDIS planner between them.

‘We’ve been placed with a different planner every single time we’ve had to go for a plan.’

At one point a planner told her she wasn’t eligible for the extra support she asked for because it fell under ‘normal parental responsibility’.

‘[A normal parent is] not trying to coordinate specialists in neurology, neurosurgery, genetics … rehabilitation. You’re not doing orthotics and check-ups with cerebral palsy, orthopaedic surgeon every six months … You’re not having to constantly monitor her for epilepsy seizures … You’re not having to put a nasal gastric tube down your child’s nose.’

Tammie said she developed post-traumatic stress disorder from interactions with the NDIA.

‘Right from the beginning, you call up customer service and you can get a different answer to the same question from three different phone calls. Where’s the training and consistency? That’s a systemic problem, but it creates a lot of background trauma when you’ve got people who are already struggling with so much, desperately trying to get help.’

Tammie said when she asked for a complex support coordinator to deal with the family’s complex issues, the NDIA told her she’s not eligible because her children aren’t ‘at risk’.

‘My recommendation would be to create a team within the NDIA to actually support families with complex disabilities or complex families with multiple disabilities.’