Something’s Wrong – Families Struggle To Support Elderly

George Vassilou’s story of how he doubled his aged mother’s face-to-face care hours by personally taking control of her EACH dementia package appeared on the front page of The Senior last month. (See story below) Dozens of people have contacted him complaining about the miniscule hours their aged care packages attain for family members.

It seems it’s the same story everywhere. Emails flooded in to George from across Australia saying their EACH packages are supplying between 2 and 12 hours a week of face-to-face care, while George has managed to attain about 35 hours a week. He says:

“Something is drastically wrong…There needs to be an investigation on how funds are actually being applied.

Now with the for-profit sector entering the market, it’s only going to get worse. Bad luck if you need support on weekends. Some agencies will provide care Monday to Fridays only.

There has to be another way. Families are worn out and tired. Families need options. How do we get other people permission to do what I have in place for my mother?”

A Way Forward For Family Run Programs?

A booklet explaining how to set up a family-based system or consumer-directed program of support for vulnerable people could be funded by the Minister for Ageing, Justine Elliot, suggests George who is critical of peak bodies.

They have been extremely slow in getting behind initiatives such as this. There have been some great examples in Australia, but we don’t hear about them…governments need to listen more closely to what families members have to say.

Families should not just be seen as part of the ‘informal’ system of care. Families are an important and integral element in the planning and design of the care system for our elderly.

At a recent Home and Community Care conference in Melbourne George found that one speaker spoke negatively about having to keep families involved. He said the conference highlighted nine pilot programs, none of them family run. He states:

“My mother’s program, which was initiated by the family, should have been the 10th program,” What this omission indicates is that family initiatives are not important.”

Elder Care Watch spokeswoman Carol Williams says George’s story offers hope for desperate families and at the same time offers savings for government. It will be a beacon for others with dependent parents who wish to remain at home rather than move into a nursing home…

BUT

..if others are to have the same success there will need to be a major shift in government spending – there is currently a strong bias to institutional care. The government funded only one home care package for every four residential places in 2007. High care packages at home, like George’s, are rare. Carol says:

“For every one such package there are about eight low care packages. The current legislation does not reflect what most people want.”

George Wins A Three Year Battle

The Senior’s Front Page Story

“One man has more than doubled his mother’s home care hours – and it hasn’t cost the Federal Government one extra cent.

It’s possibly the first step in a home care revolution for people who want to have a say in the type of care they or their parents receive through Government aged care programs.

George Vassilou has won a three-year battle with the Department of Health and Ageing to be able to personally control his mother’s EACH dementia package.
By reducing the need for a service provider to take its cut in administration, case management and contingency costs, Mr Vassilou has saved about $33,000,
which he has been able to spend on face-to-face care for his mother.

Mr Vassilou said the entire package of about $48,000 would have only produced about 15 hours a week of care for his mother if it had been administered by an accredited service provider.

Now, under his personal arrangements, Mr Vassilou’s mother receives about
35 hours a week of direct care. He pays a 10 per cent administration fee to Uniting Care Community Options, which handles the money, and one hour a month of case worker fees. The rest goes to pay the person who cares for his mother.

“In order to allay their (Government) concerns I’m paying for a case worker one hour a month to monitor the program – I thought that was a fair compromise,” Mr Vassilou said.

“That’s costing $600 a year instead of $18,000. Under these arrangements I have close to $40,000 a year to pay for face-to-face support.’’ The more than doubling in hours means a lot to mother and son. “It means I don’t have to be there as often, and when I do visit Mum I go as a son, not as a carer,” Mr Vassilou said.

“Mum is able to be more independent. My stresses have reduced markedly because the need to be there every day is removed.

“She gets to live in her own home, she can have visitors whenever she wants, her care program is not institutional, there are no visiting hours, people can come and go as they please.

“Neighbours come and visit. My mother is part of her local network. “All of this would have been removed had my mother been institutionalised as the original provider wanted.

“We selected the person who cares for her and they have formed a relationship.
“It gives her a sense of security. In the past, under care organised by providers, she could have had two, three different workers a week.”

Mr Vassilou also has a disabled daughter whose State Government package he manages in the same way.

In fact, it was his successes with the Victorian Government that possibly helped get the Federal Government to agree to his requests to administer his mother’s care.

An advocate for people with disabilities, he despairs that institutions lose sight of the people they should be serving.

He says it is the corporate approach versus being creative and responsive to the needs of the most vulnerable members of the community.

“I had an elderly client, Frank in Camberwell, who said ‘as long as I’ve got my marbles I want to stay at home’,” Mr Vassilou said.

“We weren’t able to give him that support and he has since died. “There are countless stories like that – of people in hostels who want to go home. “How much medication is used in hostels? It’s a ‘hidden known’ secret. “My mother gets neighbours visiting her – you don’t get that in hostels.

“The downside is the responsibility, but crikey, when you look at the outcomes I forget about that. “Political parties have the best of intentions, but things stall at the bureaucratic level. “More alarming though is the power of recognised providers once the funding comes under their control. “This model of care is not for everyone, but people should have a choice.’’

You can contact George Vassilou by email gvass@bigpond.net.au

Why DOES it have to be so hard?