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NDIS case study - Oregan-Young family

By Lucy Sweeney
Connor Oregan

Connor has cerebral palsy spastic quadriplegia.

Supplied: Belinda Oregan

According to Belinda Oregan, DisabilityCare Australia needs to deliver on a much bigger scale if it is to be helpful in the long term.

Her 10-year-old son Connor has cerebral palsy spastic quadriplegia – a severe disability which causes stiffness in the muscles of all four of his limbs.

He cannot walk or talk and requires a wheelchair full time.

Connor is also peg-fed and is on medication for epilepsy.

Ms Oregan says the current costs associated with Connor's care are endless.

Her husband, Craig Young, works full time to support Belinda, Connor and his younger sisters.

"There are costs for acquiring formula for his peg-feeding, cleaning products for his incontinence as well as nappies and wipes," she said.

"He has epilepsy as well so he requires medication for that."

She says there are other everyday costs such as road tolls, petrol and parking for each time Connor has to visit the Royal Children's Hospital in Melbourne.

On top of these costs, Connor's wheelchair alone set back the family $8,500 when it had to be upgraded last year - $1,000 of that was spent on the cushioning alone.

"It's just a cushion. I know where I'd rather be spending $1,000," Ms Oregan said.

"But he has to have that type of cushion to suit his spine because he's developing scoliosis in the back.

"He gets pressure sores from sitting down all the time because he's not up walking.

"He's losing muscle mass because he's not using the muscle that he should be because he can't physically walk; he can't run; he can't do anything like that."


The Government has so far provided limited detail on what DisabilityCare will actually cover in terms of associated costs for people with disabilities.

The scheme has outlined a core aim to support families in caring roles, to ensure that this can be sustained for the long term.

"Respite would be great so that I could spend more time with the girls. They sort of miss out when I've got to get down on the floor and do physio and stuff with Connor as well," Ms Oregan said.

"At the moment I can't get access to respite due to the fact that he's over 15kg – the carers won't lift him into the bath, they're not allowed to."

This means that even with a respite carer in the home, Ms Oregan must be there to lift Connor in and out of the bath and bed.

"To carry him you're effectively carrying nearly 30kg because of the deadweight. He can't bend his legs properly, you've actually physically got to bend them for him," she said.

"I'm starting to really struggle with just picking him up and putting him into bed, my back's starting to give way."

According to Ms Oregan, the family's housing department home in Hampton Park, south of Melbourne, is not big enough to cater to Connor's needs.

"It's not suitable, the wheelchair barely goes down the hallways," she said.

"It's not an open house so everything is closed in.

"The bathroom is modified but to get a hoist in the house would require the whole house to be pulled apart and redone.

"And obviously due to his disability we can't afford to move into a bigger place to be able to get a hoist."

The family also struggles with transporting Connor to the mainstream school he attends one day a week.

"First I have to lift Connor out of his wheelchair and into the car, then I have to pull apart the wheelchair to get it into the car because it won't fit in my car whole," Ms Oregan said.

She says if DisabilityCare is to assist Connor and his needs, funding towards a modified car would be number one on the family's wish list.

"That would be my ultimate dream - to have a modified car," she said.

"We struggle to do things as a family because I physically can't lift Connor in and out of the car every day."

Long-term delivery

She says the short-term goals of the NDIS are admirable, but she hopes the scheme will look further than equipment costs and respite care in order to have a lasting effect on Connor's life.

"In the little picture it's fantastic, that's great that we're going to get more equipment," she said.

"But it's not just providing the smaller stuff; it's providing the bigger stuff as well.

"In reality, we need a bigger house. And in reality we need a modified car.

"And that's thousands of dollars, that's not just a $300 thing or a $100 thing – you're looking at a house, a quarter of a million.

My big question is, if we live in this world and we have to pay out for so many things for Connor, does my husband have to pay the tax on top of what we're already laying out?
Belinda Oregan

"For a modified car – say an iMax which is one that would suit our family – you're looking at $70,000 there.

"So it's not just hundreds of dollars, it's thousands of dollars."

Prime Minister Julia Gillard has confirmed the Government intends to partially fund DisabilityCare with an increase to the Medicare levy.

However, Ms Oregan is concerned that families of disabled persons will have to pay the increased levy on top of extra associated costs.


"That doesn't seem fair.

"Is the levy eliminated from the immediate family that has the disability or is that just going to be for every family?"

The Government has not yet specified whether the levy will apply to families of those receiving benefits from the scheme.

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