Consumer Engagement in the Aged Care Reform Process

Sydney CALD Consultation

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21 October, Fairfield RSL, Fairfield, NSW
Panel: Ellen Skladzien and Lynn Silverstone
Chair: Pino Migliorino
Number of attendees: 49

Main themes

Primary care

• Misdiagnosis
• Timely diagnosis

Information and access

• Desire for verbal info instead of pamphlets
• Wanting recommendations rather than just information
• Need for better access to information- and language appropriate information
• Need for culturally appropriate services
• Wait for assessment
• Need for better funding for existing services
• Artificial boundaries between what services can provide

Community care

• Needs to be more flexible

Respite

• Need for longer hours of respite
• Respite staff requesting carer help to respond to behaviours
• Concern about cashing out option

Workforce

• Staffing levels and training
• Lack of culturally appropriate staff
• People not seeking help from the workforce due to stigma
• Concerns about how staff treat people with dementia in hospitals
• Lack of funding

Support for Carers

• Counselling and support groups for carers
• Interpreters for carers who cannot speak English
• Problem of programs that do not have ongoing funding ending suddenlyTop of page

Consumer comments

Primary care

I am a carer for my husband who was diagnosed with YOD. I had to quit work. I have no income. Our GP told him that he was depressed. He was given depression tablets. It was only when he suffered a seizure at home did we get referred to a neurologist. He found nothing. He had epilepsy and I was referred to a hospital. The next neurologist diagnosed him.

I think the GP needs more training to recognise what is depression and what is Alzheimer’s because there can be a misdiagnosis.

I am very upset with GPs. I had to have a panic attack for my GP to understand, I haven’t had a holiday in 20 years.

Information and access

I had a lot of trouble about not knowing where to go. I ended up with Catholic Care, which I found through Lynn (dementia advisor). When mum was diagnosed I got a pile of advice in papers, but I want someone to talk to me. I want them to tell me what we need to do. I will never read that.

Centrelink gave me pamphlets, told me to choose, but I can’t choose, they know better and what is best.

It is hard to access interpreters.

People don’t understand the system. They only find out about the packages when they are in a crisis.

We need one number not 101 numbers. Carers are suffering a lot.

I work for Baptist community services. We provide EACH packages. We have packages available but clients cannot get them because they are waiting to be assessed.

There are not enough facilities; there is no place for my mum. She has to be assessed first, it is so hard. Many people who don’t talk English are in big trouble because even when you are highly educated, when you have Alzheimer’s you will only talk your native language.

In our Arabic social group we have 5 clients with dementia. But they could not move into the specific dementia group because of funding. We can have staff around that are trained, but if we don’t have the funding we cannot fulfil their needs. There is not enough funding! We have funding for 12 months and then we are back to square one. This puts our clients through more trauma.

My mother was in a hospital, in a psychiatric ward, it was very inappropriate. We had to take the first dementia specific place that had a spare bed. We had to take it because it was an emergency. How nice it would be to have options. The gateway is a fantastic idea, but it will not work unless the resources are there.

My question is about activities for YOD. There is only one program for people with YOD. The government don’t talk about the YOD, nor does the PC report.

As a carer I can’t think clear because I am so busy, it is so hard to find information.

Community care

Because mum and I live together, (the community care provider) cannot supply food, or clean. If someone lives by themselves they can do this. So what they were doing is not a great help. I have depression but my culture does not let me leave my mum to put her in care.

Respite

For emergency care, you can have a few hours respite. But I work 4 hours a day, not 2 hours a week. I have depression. I worry I will end up with dementia soon.

Physically my mum is fine, mentally, she makes you crazy! They sit at home with her, but she is an active lady. I have to stay at home too with my kids, and she just follows me around. They can only take her out once a fortnight. I can’t find short respite. They give me number, and then I am told ‘no sorry we don’t have it’.

I am a carer for someone with Parkinson’s and Alzheimer’s. Access to services is restrictive. As a younger carer I don’t have the ability to not work. When you find a (respite) facility they are managed by staff who don’t know the person, you are up there every day continuing in a carer’s role, this is not possible.

I am concerned about cashing out for respite. We have to try and encourage CALD to take up services. With cashing out, it will make the problem even bigger. This will be even harder if the person isn’t skilled.

The government is putting in a new front end, why can’t the money just go to the Commonwealth Carer Respite Centre. They provide good services but just don’t have enough money. We need more money for the services that are already in place.

I didn’t know where to go for culturally appropriate respite. The GP should tell us where to go.Top of page

Workforce

If service providers have Korean clients, they need a Korean coordinator.

My preferences are to have a worker that is bilingual and bicultural. This is not possible as there is not enough staff in aged care. I am interested in self managed care. Is this an option in aged care?

Does the PC address training culturally appropriate staff, encouraging people to take on these roles?

Thankyou to Lynn, she was a great help to me when my mother had dementia. We tried to put her in a nursing home, so we could have a bit of rest, she didn’t want to go in. We have Italians coming to give us service, now they can’t come because it costs too much. So we will get Australian’s but my mum does not speak English.

There are problems in employing culturally appropriate staff. It is important to create pathways. Where I work people work with the local TAFE and they target nationalities and languages. There is interest in getting in the aged care industry, but you have to create special pathways, it’s about access and equity.

We have a lot of staff from cultural backgrounds, but it is not enough, so we have to be culturally sensitive.

I have been working in dementia for the last 10 years. The training is important; however you have to have places for the workers to work. In the CALD communities people are hiding and coping by themselves, they stay in their friend and family circles because the do not speak good English. They don’t know where to go to find services so they go back to Honk Kong or China where they can have cheaper labour. They must reach into the CALD community. Every culture and community has their own beliefs and ways of seeking help, those aspects must be recognised by the Government.

Hammond care – for us recruitment is a huge issue for community care. We struggle giving staff enough hours. We can’t give staff a guaranteed income. We need bilingual staff, especially because they take a lot of directions over the phone. We are getting more people saying I only want Arabic or Vietnamese speaking people in our home.

We have clients who say we don’t want anyone from our speaking language because their community is so small. They don’t want their business going into their community.

We have compliance and quality assurance issues. The requirements of the job can be technical and you need someone who has certain skills. When using brokerage, you need to look at the additional costs. MCCS has lot of bilingual staff, and it would be great to tap into that. You should take into account tapping into these workers at a better rate.

I have concerns about how people with dementia are treated in hospitals. The staff can’t deal with people like that. There is a lack of care and communication between relatives, nurses, and doctors.

We do need to have workers that have training. This is my concern about having cashing out services. You then have people giving respite who don’t have any knowledge. They need education and support for that sort of system to work.

Support for Carers

We need to address the issues psychologically for the carers, so then the carer can make the right decision.

I recognise the work of the carer as being exhausting and emotional. The carers need opportunity for counselling and debriefing.

If the person supplying care does not speak English, they do not have the capacity to interact with the system. The system does not cater for linguistic diversity.

Most carers cannot speak English very well, and we need a free telephone interpreter service.

Catholic Care carers meeting (dementia café) were very helpful. I needed information, and now it has stopped. I can’t get in touch, it is hopeless. When it starts and then it stops after 12 months (because the funding was not continued), it is devastating for a carer.

We are all used to physical care issues, but the emotional aspect around dementia has not been addressed by the PC. Where do you go for services at the point of a personal crisis?

I called Catholic Care; they give me two hours a week of support. It is not enough.

Among Koreans it is still confusing about how to care for people with dementia. They thought the symptoms of dementia were depression. Top of page

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