Crunch time for carers | Progress Leader

GABRIELLE FAKHRI was at her wits’ end.

After 30 years as primary carer for her intellectually disabled son, Simon, she was exhausted, isolated and distressed.

>>MULTIMEDIA: Meet parents struggling to care for their disabled children

Murder-suicide loomed as the only escape.

Simon, 38, was born with an intellectual disability, deafness and autism.

At age 34 he developed bipolar disorder, and with that came aggressive behaviour.

His condition sparked marathons of insomnia – he would go 20 days with only snatches of sleep, wandering the house, often “screaming and bashing his head”.

For the next 20 days he would do little but sleep and recover.

It has been that way for four years.

“There will be three nights when he won’t actually hit the bed at all,” Ms Fakhri said. “We don’t go to bed. (There came a point when) I just wasn’t sleeping, I became very distressed.

“I went to a counsellor and said to her that I’m thinking of killing Simon and then killing myself.

“And I was very serious.”

She repeated her threat to staff at a local state MP’s office and that night a taxi arrived to take Simon to respite.

Ms Fakhri, 59, was grateful for the help – Simon’s behaviour improved, things got easier. But she was angry that help only arrived when she was desperate and suicidal.

“They gave me two days of respite a week for a couple of years,” she said. “You need to actually threaten – but it was a genuine threat – to commit murder-suicide to get a service.”

CARERS Victoria chief executive Caroline Mulcahy said many carers were chronically exhausted, socially isolated and financially disadvantaged.

Statistics show that carers suffer more depression and anxiety than the general population and 40 per cent have chronic health problems. Ms Mulcahy said a lack of support was pushing many carers to the brink.

“We have heard from some family carers that they do think about self-harm and suicide, and it is a growing phenomenon,” Ms Mulcahy said. “Carers are feeling fairly desperate and unfortunately, we are hearing people use words like, ‘I would rather kill myself and kill my child, than leave them in this circumstance’.”

IN February this year the Australian Productivity Commission released a draft report into disability care and support. The commission described the existing disability support system as “underfunded, unfair, fragmented and inefficient”.

“The current disability support system is very poor, does not give people with a disability much choice, and they cannot be sure they will get the supports they need.”

The report proposed a new National Disability Insurance Scheme or NDIS, a system similar to Medicare that would cover new and existing disabilities.

The scheme would fund long-term, high-quality care and support for about 360,000 people. Importantly, it would provide insurance cover for all Australians in the event of significant disability.

The commission will release its final report on July 31.

The Federal Parliament will decide its fate.

FOR Naomi O’Byrne and her daughter Sarah, an NDIS cannot come soon enough. It’s 8am on a school day and after an hour of morning madness Ms O’Byrne, a single mother, can’t believe her luck: she has 10 minutes to spare.

They begin a jigsaw puzzle in their Narre Warren lounge room, turning the pieces this way and that, trying to make them fit.

It’s a theme that dominates their lives. Sarah, 12, was born with a genetic disorder, band heterotopia, which has delayed her development. She topples forward, but her mother catches her before her face slams into the coffee table.

“Life shouldn’t be this hard,” Ms O’Byrne says. “It’s just a constant mental struggle for me to cope with the routine and to fit everything in with work and home.

“I’m on antidepressants. Some days I wish it would all go away, but I couldn’t be without her. But the struggle of not having respite and support service, it’s pretty tough.”

STATE community services minister Mary Wooldridge said the Victorian Government supported an NDIS and had volunteered to pilot the scheme in 2014. The scheme would be expensive – the total cost would be about $12.5 billion, more than double the $6.2 billion currently spent on disability services.

But Ms Wooldridge said the cost, about $280 per Australian, was outweighed by the potential benefits.

“There are thousands of Victorians waiting on the disability support register to access care in the community and often these services can only be accessed when life hits crisis point,” Ms Wooldridge said.

“There will be debates around funding, governance and the relationship between the federal and the State Government, but every person with a disability or their family member that I talk to, they don’t care about that stuff – they need the scheme.”

Ms Wooldridge said the NDIS needed community support to make it through Parliament: “It can’t just be the voices of people with a disability and their family members.”

SIMON yawns and shuffles towards his mum with his arms raised and his shirt hanging out. “You want me to tuck you in?” Ms Fakhri laughs, hugs her son and shakes her head as he raids the kitchen for biscuits.

His cycle has changed and for the next 20 days he will sleep.

“When he’s happy and well, we just laugh and play with him all day,” she says. “When he’s angry and upset and doesn’t sleep, it just breaks our hearts and makes our lives very hard.

“If I had money I would pay for someone to come into the house much more often.

“The money from an NDIS would make our lives so much easier.”


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