Support grows for Ballarat man who just wants to stay home

A Ballarat man with a degenerative disease is trying to secure ongoing government funding to allow him to remain in his home.

Support is building for a Ballarat North man who is seeking more funding to allow him to remain in his own home, rather than be forced into an aged care facility.

Wil Hobbs, 39, has a debilitating degenerative disease called Friedreich’s ataxia, which has impacted his sight, movement, speech and heart, and he now requires fulltime care.

A petition started by one of his carers, Miranda van Egmond, on the website has attracted more than 66,000 signatures so far.

Mr Hobbs – who is legally blind and gets around in a manual wheelchair – is pleased with the support he’s received, joking “that’s almost as much support as the Collingwood Football Club”.

Ms van Egmond told ABC Ballarat’s Steve Martin that as Mr Hobbs’ condition has worsened, his funding requirements have increased, but his individual support package has not.

“It’s been an ongoing battle for him to try to get the money he needs. He never knows if he’s financially going to make it through to the end of the year.”

Ms van Egmond is calling on the Premier Denis Napthine and the Minister for Disability Services Mary Wooldridge to intervene on Mr Hobbs’ behalf.

After months of advocating by his carers, the Department of Human Services granted Mr Hobbs a one-off funding boost, which will last until the end of this financial year.

But Ms van Egmond wants DHS to approve Mr Hobbs’ initial funding application, to ensure he doesn’t have to fight the same battle next year.

“It’s so distressing for Wil and it furthers his deterioration as a result of trying to wait for these bits and pieces of funding that the government is supposedly trying to organise.”

Mr Hobbs has a nine-year-old daughter, and he says she is the primary reason he would like to remain at home.

“She’s an awesome little girl. She gives me something to look forward to,” he says.

If Mr Hobbs is moved into an aged care facility, his daughter would be unable to stay overnight and spend holidays with him, as she does now.

He is also worried about how moving into an aged care home will affect his mental health.

The disease is likely to claim his life in the next six years, and Ms van Egmond says he is desperate to stay at home.

“He’s scared to death: he doesn’t want to go into a home, he’d just have to change his whole lifestyle, and because of his motor skills and his sight he wouldnt be able to navigate himself around.”

She describes Mr Hobbs as “a very smart man”.

“He’s a very intelligent man, he’s just stuck in a body that won’t allow him to do anything.”

The carer is concerned that funding for individual support packages in the Ballarat region has reduced because more is being directed towards the National Disability Insurance Scheme site of Barwon.

“It’s all meant to be spread out across Victoria, but it seems that nobody in Victoria is really getting anything. It seems that it’s all going to the NDIS site in Geelong at the moment.”

The ABC has contacted Minister Wooldridge for a response.

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Health, Mental Health, Medical, Housing, Accommodation, Tenancy

Lily Partland

ABC Ballarat

Date published:
Mon 22nd Sep, 2014