Consumer Engagement in the Aged Care Reform Process

Melbourne CALD Consultation

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27 October, University of Melbourne, Hawthorn Campus
Panel: The Hon. Mark Butler, Glenn Rees, George Lekakis: Chairperson of the Victorian Multicultural Commission and Maree McCabe: CEO Alzheimer’s Australia Victoria
Chair: Marion Lau, Deputy Chair and Chair of the Aged Care Policy Committee, Ethnic Communities Council of Victoria
Number of attendees: 143
Demographics: Afghan, Turkish, Vietnamese, Chinese, Sri Lankan, Indian, Lao, Finnish, Romanian, Arabic, Greek, and Maltese.

Main themes

Primary care

• More stigma in some cultural groups can make it harder to seek a diagnosis
• Difficulty getting a diagnosis from mainstream providers

Community Care

• Need for specific supports for refugees
• Preference for community care

Residential Care

• Need for funding for help with volunteer training and transport for community groups
• Lack of consistency in cost of care
• Small providers not being successful in ACAR
• Poor quality- not even protecting basic human rights
• Accreditation System not working

Respite

• Concerns about cashing out and how people from non English speaking backgrounds would manage funds
• Lack of CALD appropriate respite

Workforce

• Concern about staff wages
• Exchange program with Holland to get student workers who are bilingual

Support for carers

• Non ongoing funding raising community expectations

CALD Specific Services

• Impact of change in regulation about cultural plans
• Need for CALD specific Community Care and RACF
• Need for bilingual staffTop of page

Consumer comments

Primary care

I would like to touch on the stigma associated with dementia. I belong to small Tamil community. If a member in our family had dementia they would not divulge. GPs should be able to identify if the person has or is likely to develop dementia. It is necessary to get the GPs to take more interest in identifying people who have dementia. Because of the social stigma these people should be treated in their homes.

My mother passed away 3rd February. Symptoms started in late 2007 when she turned to me and said “who are you”. On a Qantas flight she said ‘’who are you and why are you sitting next to me? I am going to call the police” We touched down in Melbourne and I went straight to a GP. We found it a struggle just to get my mother diagnosed. Then she was put on a wait list. I did not know how neglected or isolated the Turkish community was until I experienced it. We need trained staff that caters to people from all backgrounds. I had to get the diagnosis done privately because I was confronted with a dead end wall.

Community Care

Afghan community aged people stay at home and they don’t go out at all. These people need to stay together and they have a lot of problems like depression because they lost everything in the war time. There is no place for them or any funding for a program to help these people. These people have special needs and need to be able to stay together to talk and get support.

The Vietnamese community prefers community care. When we assess people for aged care packages we see that the level of care needed is quite high. Children look after a mother who has dementia. They take turns. So their mother moves from one place to another so they can cope.

People are happy to look after them at home but it is quite costly. The language spoken at home must help maintain the quality of life for people at home. Is there a study to be done comparing the costs home care and the amount that you pay to the nursing homes?

We need much more funding if we want people to stay at home. We don’t want them socially isolated.

We came to Australia in 1969. I feel like we were victims of a system that did not want to acknowledge my mother at all. I have lived it for three years and I went to hell and back. In the last 6 months my mum did not know how to take her clothes off. She had no sense of hunger. I showered her. I chopped up her food and put it in her mouth. The only thing she could use was a spoon. I had a service provider who was supposed to help but they wouldn’t. Someone is going to pay for what I went through with that service provider. You don’t know even 10% of what it is like to live with someone with Alzheimer’s disease. Living in isolation and alone.

I am one of the volunteers that represents 300+ Lao members from all of Victoria. We are grateful for the funding we have received for our programs, but I would like to see more support to resource our community in education and volunteer training and staffing to ensure continuity of awareness of issues happening in our community.

Residential care

I have had a very bad experience in a nursing home. There is a lot I have seen that makes me wonder about human rights protection. Will the Australian Government have laws to protect basic human rights of residents in nursing homes? From what I see it is just terrible.

When you go into a hostel and a nursing home- why is there such a difference between the costs of putting someone in a nursing home. It can vary so much between different places. Is this dependent on who owns the place or is it the Government? What about someone who does not own their own home. They don’t have the money for a bond. Is it true that nursing homes have to have spots for those people?

I am a past President of Aus Finnish Home. We are short of places and don’t have the funds to rebuild.

I am from Hampton Park (Turkish group). We apply for nursing home places and community care through the aged care approval process but have been rejected.

In nursing homes the accreditation requirements are good but as soon as the accreditation team leaves it changes. Unless you have a house or you have money you can’t get into a good nursing home. Why? Is it because they are private businesses? It is really important to have quality for all older Australians regardless of where they are coming from.

I am from Hampton Park Turkish Seniors. We have a wonderful crowd, including people with Alzheimer’s disease. Our problem is transport. We are willing to fundraise to raise the money because I would like to take everyone out at least once a month, but we are having a problem with getting funding to use a small bus

Respite

I don’t recommend cashing out because it will be useless for our community.

I support the gentlemen talking about cash out. I don’t think cash out is suitable for the Vietnamese community at this point in time. Maybe sometime in future, but our first generation has no language to understand the system. If you have cash out how are you going to manage it? If they need nursing care then the nurse should come around and the community can support family. That is what we really need at this point in time. Next 15-20 years their needs may change but that is what we need now.

I have been asked- why are you crying why do you have so much difficulty putting your mum in respite? My mum doesn’t speak English. There were no services available that met her needs. She didn’t fit into your equation or policies. I am sure I am not the last.

Workforce

I want to know, who sets the benchmark for the payment of carers who work in nursing homes? The people who are working in these areas should be admired, and I wonder if they are really compensated.

There is an agreement between Holland and Finland that we can use the students in their final year in the university in the appropriate colleges. We have about 12 students. They bring their language skills and culture and the clients love them. Maybe you can extend these agreements? Most of the nursing homes do not know about these agreements. We should be teaching languages at school. If we have people with language skills here in Australia then it needs to happen at school.

Support for carers

I was involved in a project this year educating carers to how to live better with a person with dementia. The project was excellent, but it raised hope in the community, then the funding finished. We need more programs like this funded for more time.

CALD specific Services

I work for Vic Arabic social services in the aged care sector. Organisation and service providers were asked for a couple of years to submit cultural plans to make sure they are meeting the cultural needs of older people. For the past 2 years, service providers were not obliged to do so. We as an ethnic organisation have found that there is a drop down of interest in main stream organisations taking up opportunities to educate or train their staff, or provide ethnic communities to information. How will the Government make sure that the needs will be addressed appropriately and how will they measure that they are addressing those needs? Will we be seeing more funding to ethnic organisations to make services more available?

The Turkish population is ageing. We are an ethnic non-profit association. What we want the PC to look at is how to find smaller ethnic agencies to provide CAP packages to help people age at home. Our project under the community partners program is to raise awareness of Turkish community of services available, how to access them, to train service providers to make them more relevant, and to have more bilingual workers. There is a lack of carers and volunteers trained. We have not been able to get funding in the aged area (our organisation). We would like PC to look at smaller groups that don’t have the infrastructure established.

We need culturally specific facilities but the government does not favour this. I believe that every nursing home should be multicultural – we are a multicultural society.

The Australian Vietnamese Woman’s Association provides diverse services including aged care packages and community groups. The Vietnamese community is ageing very fast. I can see the community getting frailer and the number of people with dementia increasing. We have only one nursing home in the country. It does not cater for people with dementia. How will government help build more facilities?

I am from the Sri Lankan community. Although you say diversity is looked at, how can it realistically be practiced in the nursing home? If you go into a nursing home or hospital, getting someone to speak your language can be very difficult. Unless you have some way to make this work the person with dementia is going to be suffering. One person speaking the language in the nursing home or hospital is the least we can do.Top of page

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