Consumer Engagement in the Aged Care Reform Process

Alice Springs GLBTI Consultation

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Wednesday 2 November, Kunghas Can Cook, Larapinta Drive, Alice Springs
Chair: Judy Buckley

Main Themes

Community Care

• People hiding sexual identity from carers

Residential care

• Desire for more choice and innovative care models
• Need for privacy
• Staff and residents responding negatively to cross dressing
• Concern about response to GLBTI in catholic facilities

Workforce

• Need for better training and wages
• Staff can assist GLBTI people by connecting them to their community

End of life care

• Unique legal issues in NT
• For GLBTI people families sometimes ignore wishes

GLBTI Community

• Desire to be cared for by other members of community
• Family having a different meaning for GLBTI people
• Importance of respect
• Generational Differences

Discrimination

• People move away from communities after coming out
• Double discrimination based on age and sexuality
• People losing contact with family members
• Person with dementia being open about sexuality which had been kept quiet
• Staff refusing to provide care based on sexuality

Sexuality

• Behaviours related to sexuality and dementia
• Lack of recognition of sexuality in aged care regardless of sexual identity

HIV

• Discrimination/lack of understanding
• Higher probability of getting dementia

Intellectual disabilities

• Need for an integrated system Top of page

Comments

Community care

When some people receive home care they sanitise their homes, hide magazines and take pictures down so they are not found out. They are frightened. There would be stress; what happens if I forget to do that one day?

Awareness building is there. I am concerned about the engagement generating and continuing to generate with service providers and policy makers.

I was a support worker for people for year. I met a couple who said they were sisters, but I knew straight away there was a relationship there. About 6 months later she told me and I said “yeah I know’’.

Freeing up modes of service, so people can be more innovative, people will be able to get the care they require, not the care that is part of their package. That is a pretty important thing.

Residential care

I have seen an improvement from institutionalisation; now we have diversional therapy. We have changed our attitudes; some people don’t want to shower every day. The rights of people have improved.

The GLBTI retirement village being set up…little units that people can buy into. It’s a fantastic concept. Having survived the whole HIV issue, I started thinking, what happens to older gay men and lesbians? There are lots of people who won’t be in the position to self-fund their accommodation.

Sitting at a table at a residential facility and someone is in drag, and then the wig gets knocked off, everyone screams, how demeaning.

There are instances with people being forced to dress in clothes that match the sexuality that they look like, rather than what they choose to be. Refusal is seen as misbehaviour.

Carers need to knock on the door before they go in, it’s their home, and they need their privacy.

Catholics are still so anti-gay and lesbian; it would be very difficult for them to go into a Catholic home.

I was nursing a dying HIV patient, the man had just died, and his partner was there with him. Another nurse came into the room and said ‘’I want this body out, we need the bed’’. I said just because they are a gay couple it does not give you the right to change the code of conduct of nursing where the family members can stay for as long as they like.

Two men have been together for 40 years but the partner feels he cannot show any affection in the residential facility.Top of page

Workforce

Need to assess the assessors. Training is very old fashioned.

Staff will do other things; they can work at McDonalds for more than $17 an hour.

Aged care is not an easy job. It is physically demanding. It’s almost degrading some of the lifting techniques we use. Putting people in slings, everything is exposed for females. There is a lack of nurses, so we have had to bring in carers. Lack of training is a big issue.

Need to educate and train workers to look after these people. You may need the specialised care, just like indigenous people. It’s all about education and saying lets have the whole spectrum of people being carers.

Carers may not have enough education to be able to care for you in an appropriate way.

Having carers identify as GLBTI, there are very few.

If the carer does not know then they can’t hook the person into their community.

Half the carers are not qualified in any way.

End of life care

There are legal issue for us in the NT because you can’t be an adult guardian before a person is incompetent. We need a way in advanced care planning to say this is the carer I will want. This could be a bigger issue to the GLBTI people, as families will try to step in after they have had nothing to do with the person.

I recently went to hospital and I was asked ‘do you have an advanced care directive‘and then I was asked ‘where is it’? This is one area that the NT government needs to consider.

GLBTI community

We don’t know how many people are living here and intend to stay in the NT as they get older. How many people are we talking about who will need the aged care system, community or residential care? We don’t know. I think this is really important.

We need to give people the opportunity to be cared for by members of the community.

The term family to GLBTI has another meaning; it is not just about the blood connections.

It takes a whole village to raise a child; it takes a whole village to look after the other end of the spectrum as well.

I think it is just a fact that you have to have cross generational communication, within the gay and lesbian community, if you are going to have caring.

We want the same respect.

There are videos on YouTube, and research papers, where people are looking at the issues and recognise that there are different issues for GLBTI people who are ageing. Particularly people who are in the 70 or 80 aged group. They have grown up and come through a very different social environment than there is now. I think this is a problem as younger people growing up now don’t understand the issues and concerns of their elders, such as concerns about ‘coming out’.

In the GLBTI community we do not talk about ageing enough.

Getting messages of safe sex into Aboriginal and Torres Strait Islander communities is difficult as it’s not really totally recognised or culturally appropriate to be gay or lesbian.

Discrimination

Behaviour is tolerated but orientation is not, it would be difficult to stand up and say I am a gay aboriginal man. They move away from their community so they don’t feel the shame.

Ageism is the issue. You have to come out as an older person.

When a man and his partner first moved to town they had to pretend they were step brothers. When the gay scene emerged in Alice Springs, he was blown away. He burst into tears as there were other people there that felt like him.

Males married because they were expected to. I knew a gay man who didn’t come out. Then, when his wife found out, he was cut off from his children and he was an incredibly lonely man when he was ill.

I have a friend who does not identify with the Gay community, he is a cross dresser. He is elderly; his family has become estranged from him. I worry how he will cope when he ends up in aged care. Helping people like this will be a huge side issue.

I met two young aboriginal girls who called themselves sister girls.

There is a personality change with dementia, they are not the person they were before, so you and your partner may have kept things quiet, and all of a sudden your partner has Alzheimer’s and will yell out ‘’that’s my boyfriend!’’

A carer bathed a woman, and when she found out she was a lesbian she left, it was discrimination. She was suddenly left without a carer.

Partners who have been together forever get separated as families refuse to understand.

Loss of identity for GLBTI is more important than the general community. A lot of people take so long to accept themselves, by the time they start losing control of their life, it is even more intense. Someone who is GLBTI with Alzheimer’s is going to experience a whole other level of issues.

Sexuality

Some behavioural issues can relate to sexuality.

You can’t control you sexuality and feelings when you have Alzheimer’s. Carers need education and training to say this may happen and this is how you deal with it.

Sexuality doesn’t exist in old people’s homes.

Heterosexual facilities – males and females can’t mix.

There are huge challenges around gender and sexuality issues, in the home or in a residential setting.

HIV

There is a lot of discrimination and myths and false feelings that shouldn’t be there when nursing GLBTI with serious illnesses, such as HIV.

Dementia for people with HIV. People on antivirals are more likely to get dementia. That will be their next wave as people with HIV are living longer.

A lot of people think that they don’t want to go near someone with HIV as they might catch it.

Intellectual disability

The transition between aged care and disability can be stressful as the two don’t mix; it comes down to education of the carers.

Since my cousin was 18 she has been in an aged care facility. She has never had a boyfriend, a job or travelled. She was diagnosed as being intellectually disabled. Her whole life was stolen from her. That is what happens to young people when they are put into these sorts of facilities.Top of page

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