Inverell's Cheryl Hill on National Disability Insurance Scheme troubles

Sacrificial love: Cheryl Hill (right) has been caring for her son Mark Hill (left) for over 40 years.
Sacrificial love: Cheryl Hill (right) has been caring for her son Mark Hill (left) for over 40 years.

While some breathed a sigh of relief when the Federal Government ditched its plan for a Medicare levy hike last week, many in the disability community felt thrust into a world of uncertainty.

The plan to raise the levy from 2 per cent to 2.5 per cent was touted as the way to fund the National Disability Insurance Scheme (NDIS), an overhaul of the disability system which boasts increased choice for those being supported. However treasurer Scott Morrison says this measure is no longer needed due to the strength of the economy. 

Local Cheryl Hill is not so sure. “It’s very much a political football,” she said of the scheme. Cheryl cares for her son Mark, who has Lennox–Gastaut syndrome which involves uncontrolled epilepsy, cerebral palsy and an intellectual delay.

Cheryl was wary of the NDIS during a 2014 conference early on in the process.

“They put it in the ‘too hard’ basket and they don’t want to know about it. I don’t know where it’s going to be funded from. Where are they going to pull it from?” she asked.

Cheryl has remained sceptical of the scheme from day one, and felt the government was unaware of how wide-ranging the needs were.

“I think the problem is a lot bigger than they ever thought it was, because there are a lot of people out there who were not getting help - they didn’t know about them. But now with the NDIS, they’re coming out of the woodwork,” she said.

NDIS recipients are allocated funds according to the needs and goals identified in their plans. Cheryl feels big promises of increased choice and independence are not being fulfilled for many. 

Mark Hill (centre) with his sisters Talia and Coreena Hill and Tracie Higgins.

Mark Hill (centre) with his sisters Talia and Coreena Hill and Tracie Higgins.

“From what I’m hearing, they’re cutting funding left, right and centre in the reviews anyway. I think they’re in big trouble, and I don’t think anybody’s admitting the truth.”

Cheryl’s doubts about the NDIS turned into anger in January this year, as she found herself fighting for Mark’s care even as her husband lost his life due to complications from an operation. 

She was told she couldn’t bring a carer with her, and needed to hire someone in Newcastle.

“How would that have worked at half past four in the morning when the hospital rang me and told me my husband was dying? What was I going to do with Mark, if I didn’t have a carer there with me?” she said.

“And it’s supposed to be about their choice and their control.”

Cheryl considers the scheme a good idea that’s gone astray. She urges politicians to bring “the human element” back, and listen more closely to those with disabilities. 

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This story Carer tired of disability funds used as ‘political football’ first appeared on The Inverell Times.