Sweeping changes, condemned by disability advocates, mean some scheme participants’ funding will be reduced by 99%
Get our breaking news email, free app or daily news podcast
Bryn Skyes is 16 years old. He loves playing in the water on hot Ipswich days, going through the car wash with his mum and zooming down slides with his siblings.
He has also never eaten food. Bryn’s disability and gastrointestinal problems mean that he has been tube-fed since infancy.
For most of his life, the costs of Bryn’s food and feeding system have been covered by the Queensland children’s hospital, but as the process of transitioning him out of paediatric care begins, his mother, Shelley McRae, is worried changes to the NDIS mean she’ll be left to find an extra $50,000 a year to keep him alive.
After months of debate, confusion over what the changes mean, and anguish for families afraid of having their plans cut – or being moved off the scheme entirely – parliament on Wednesday passed a bill to curtail the scheme.
The changes will give the health and NDIS minister, Mark Butler, the power to reduce funding categories for individuals by up to 99%. Among the 63 last-minute amendments was a tweak to allow vulnerable participants whose budget is affected by the new ministerial power to apply for more funding through a plan variation. For now, McRae is unclear how the process will work – and how the changes will affect Bryn.
Disability organisations and some senators have condemned the bill, and families like McRae’s are terrified they’ll be left behind.
“Without that nutrition and the pumps, he would die. He would starve to death because his gut doesn’t work properly,” McRae says.
It would take about two years for Bryn to secure specialist care in an adult hospital. Instead, McRae applied in January to have Bryn’s NDIS plan expanded to cover his food. She has not heard back.
She says she has been told verbally that the NDIS had a limit of approximately $24 a day for nutrition – which would not cover Bryn’s costs.
She is worried the changes will specify a maximum amount of funding for food and feeding and that there will be no sure way to appeal. The amendment allowing for plan variations, is little comfort, she says.
“It does not explain how that process will look,” she says. “Obviously it is better than no pathway at all, but as usual there is no clarity.
“Typically, a variation is a minor change to a plan … The current process can take 12 months and is very difficult.”
As McRae says even getting simple answers can mean a long wait. After years of trialling different feeding formulas and poor weight gain, the hospital identified the only formula Bryn could tolerate while maintaining a healthy weight. It is available on the PBS, but only for children up to 10 years old.