Bodhi and Tayla

‘I think it is really important that he get the best care in the limited time that he has, and if I have to beg, borrow and steal to get it, I will.’

Tayla’s son, Bodhi, was born prematurely and is now in his teens. He lives with spastic quadriplegia cerebral palsy and uses a wheelchair.

’We were made aware really early that he had quite a lot of brain damage,’ Tayla told the Royal Commission.

Tayla, a single mother, said doctors at the time gave her no indication of ‘what his disability would mean for his life or [hers]’.

‘He essentially breathes on his own, and everything else is supported.’

When Bodhi is sick, Tayla takes him to a children’s hospital, where she said the level of care has ‘greatly declined’ in recent years.

A few years ago, Bodhi hurt his leg.

‘It was uncomfortable to the touch. He was wincing when I touched him.’

The hospital’s doctors took an X-ray and sent him home with painkillers. Nine months later, she discovered in his medical history that his leg was broken.

When Tayla complained, she said her ‘concerns were not addressed’.

‘If he had been a child who was not in a wheelchair, was standing up … with a sore leg saying, “Mummy my leg is sore, oh my God, I'm in pain”, what would have been the level of care then? Because clearly he was in distress because that was why I took him in there.’

Tayla said the hospital appeared to consider her a troublemaker for advocating for Bodhi.

‘I've received in writing a letter that says that, due to my “anxiety”, I am unable to communicate with the hospital. I don't have a mental health history.’

Bodhi is supported by the NDIS, which Tayla said has dramatically increased his funding and access to services. She told the Royal Commission that some service providers are exploiting it.

For example, Tayla recently called an occupational therapist out to adjust Bodhi’s wheelchair.

‘So this person comes out, we had a bit of a chat, she had a look at him in the wheelchair and rather than just adjusting the wheelchair herself then and there, [she] indicated that we were requiring that the manufacturer of the wheelchair come out … in case she needs to order more items.’

Tayla said it ended up costing $800 ‘to do an application’. ‘And then, of course, under the requirements of the NDIS, she can then bill me another $452 to come back to supervise that gentleman putting that piece of equipment on that wheelchair.’

Tayla said she manages Bodhi’s NDIS funds responsibly, but some providers were ‘putting parents in a really awkward situation’.

‘Someone can run out your funding very quickly.’

Tayla worries about what will happen to Bodhi if she isn’t around to manage his funds and care.

‘It would be vastly open to exploitation. I'm almost positive he would be neglected in some level … so those are the sorts of things that worry me.’

Tayla said she sacrificed her career to ‘advocate for him and to care for him’, leaving her with no superannuation or financial security.

‘I almost have no pride left. It's terrible. It's taken a huge toll on my family, myself … I don't want to think that if I can't afford to rent or if I get evicted that I might be homeless.’