“I’m 42 years into this experience. I’m tired. I don’t need all of this,” Cheryl Hill said. Cheryl said the scheme’s focus on increased choice and independence meant very little to people like her son Mark, who suffers from Lennox–Gastaut syndrome. Mark’s condition involves uncontrolled epilepsy, cerebral palsy and an intellectual delay. 

“They talk about self managing - self managing who? Mark can’t do it. He’s non-verbal, has an intellectual delay. He’s 42 going on about four. He can’t do it. It’s his money. If I do it, that’s not self managing, that’s me, managing his money,” she said.

Unable to make choices about work or social activities, Cheryl said Mark’s choices boiled down to living in a safe environment with his parents and answering yes/no questions. 

“A lot of good people have done a lot of good things for people with disabilities, and I’m not denying any of them that. But most of them, what the world perceives as disabilities, are those who can hold down full time jobs.

“They can get out and speak, they can do all of those things, or they go off to the Olympics. And this is what people see. They’re not seeing the tiers underneath that need other people to speak for them, to do everything for them. And this is where I am. I’m in the tiers underneath with my son,” she said. 

In her 60s and also caring for her husband, who has back problems, Cheryl said she felt snowballed by all the extra responsibility involved in creating an NDIS plan for Mark. Although she said Mark had “the best personality” and she would never regret taking care of him, she felt she didn’t need the added pressure.

“I’m tired. I don’t need all of this garbage,” she said. 

As the NDIS goes under review, Cheryl hopes legislators consider people who have limited choices, as well as carers who would prefer others take on the fund-management load. She hoped for increased carer support in the future.

“I can’t even go and get a bottle of milk unless I have somebody in the house. So let’s think about the carer too. She needs a bit of time - or he - to gather their strength and come back and deal with that.”