Focus Group Summary

The following is a summary of key points discussed within the focus group for Forgotten Australians held on the 3rd of August in Melbourne. As agreed to in this session, these notes are being provided to the attendees for their reference.

Attendees

There were 13 attendees within this group comprising both Former Child Migrants and Forgotten Australians.

How do you think staff in any of these areas should find out you are a Forgotten Australian? The need for some form of identification as a Forgotten Australian was important to many attendees.  Some feel that having automatic identification would reduce the need to retell their story repeatedly. One Forgotten Australian stated that to be given recognition in the form of an identification card was to have their place in society restored. Some are frightened to discuss their past as this will bring up painful memories again. For some Forgotten Australians, even their own family members do not know about their childhood experiences. One attendee described how having to chase up childhood ward files from the Victorian Department of Human Services was complicated and upsetting.

For some Forgotten Australians, even their own family members do not know about their childhood experiences.
One attendee described how having to chase up childhood ward files from the Victorian Department of Human Services was complicated and upsetting.

“.. if you brave enough to front up to the Department of Human Services and then have to go through it all again. Having to face the pain of telling some guy at the counter your story again. It is painful.”

A unique identification card that is immediately recognisable by all service providers was strongly supported by most of the group.  This card could describe the recipient as a Forgotten Australian or Child Migrant.

What worries you about aged care or using aged care services (consider community and residential care separately)?

Community Care

Some of the Forgotten Australians attending expressed concern about those service providers who would come into their home and provide care for them. They want to know who will monitor these carers and protect them from potential abuse? Many were reluctant and fearful of reporting unsatisfactory behaviour and not sure how to go about this. 
This fear of speaking up was attributed to their experiences as a child, and not having a voice or the ability to complain about treatment. There is a fear that they may be ignored or even punished for speaking up.

“Who is going to police the service provider? Who watches them?”

Residential Care

Attendees described a fear of having to return to the same place that they grew up in, once they were older. It is not only the services provided by a particular organisation that is a cause of anxiety, but the very environment of residential care in itself.
The group described having a strong sense of their own independence and were worried that this would be jeopardised by entering residential care.. Also, some fear the loss of their rights once accessing aged care services in general and being “placed” in a residential care facility without their consent. Some stated that they would not ask for any help even if they needed it.

“... made myself self reliant and that is important to me- I am loathe to be dependent on an organisation again. What guarantee is there that we will not be brutalised again? Have a curfew or live under regimented life again? How will they ensure our safety?”

Some attendees expressed a fear of regimented timetables and rules. One Forgotten Australian explained that he did not like to sleep in the dark and could only sleep with the TV on loudly. He was concerned these needs would be ignored in a strictly managed setting.
There was a very real fear that signing any paper work will be “signing over control” of their lives and that they would be exposed to abuse and bullying again.
One Forgotten Australian asked for a “guarantee” from the government that their concerns would be acted upon and that they would be provided a service that ensured their safety.

“We waited over 50 years for an apology from England. What assurances are there that we are going to get what I need?”

“Don’t want maybes. We got maybes and all that when in institutions. We got hammered”.

“I did not ask to go there as a child and don’t want to go there as an adult”.

What would make you more comfortable or happy about using aged care services?

Key comments about what would make some Forgotten Australians in this group more comfortable using aged care services included:

it is important that the traumatic experiences are not repeated;
to have a say about where they would reside as an aged person in a residential facility;
services to be appropriate for their unique needs;
not to be talked down to but listened to without judgement;
important to have personal effects in their room with them;
preference for a larger room- not confined within a small room;
more communal services that are less “paternalistic”;
to be able to afford the best aged care services available (including residential living); and
more advocacy and help accessing services for them when needed.

“We want to be secure, safe and happy. Simple as that”.

Most commonly, attendees expressed the preference for receiving care at home instead of entering an aged care facility.

“I am terrified of going into a home again”.
“I want to die in my own home. I certainly do not want to go into institutional care again”.

One attendee suggested a specialised boarding house for those aged in their 60s and 70s. This will be particularly relevant for those people that have never been a part of society and would be unable to cope well in the mainstream system. Another spoke of promoting self-help within the community, to enable Forgotten Australians to live at home as they age, or the creation of community housing as a group.

What should people who work in any of these areas know about Forgotten Australians?

The Forgotten Australians stated that the language contained within the assessment process needs to be sensitive and simple.  In addition, the skills of the assessor and their ability to treat a person appropriately and responsively are essential.

What barriers might get in the way of you getting the aged care services you need?

For most, there was a low level of awareness of the types of aged care services available and how to access them. Although a couple of attendees had a good understanding of the aged care service structure, due to experience with or employment in this area, most associated aged care with high level care residential living (as is also common with the general community). An example was given of an older male, a former ward of the state, who was raising an intellectually disabled son. Although he needed assistance to provide care for his son due to his own health needs, he did not want to approach community services as he was sure that “they would take one look at the house and take my son away”.

Some of the focus group attendees believed that undertaking an assessment with an ACAT team meant that you had to do as they directed, rather than just being a process to determine eligibility for services.
Some also spoke of feeling frightened or distressed about all of the paperwork and bureaucracy involved in accessing care. The process available for the Australian Veterans, who are able to receive assistance and support from the RSL to work through the paper work, was put forward as a possible model of assistance for this group. Many agreed that it would be very helpful if the advocacy and support agencies that currently exist would be able to provide assistance with these activities.

An attendee also pointed out that a large proportion of Forgotten Australians are homeless and live on the “fringes of society”. This group will never be able to navigate through the bureaucracy necessary to receive assistance, no matter how urgently they may need it. For these people “...gaol was their old aged home”. Acute poverty, homelessness and mental health issues also worsens the chances of accessing quality aged care.
Some Forgotten Australians felt worried about their ability to negotiate effectively with service providers, due to a lack of confidence or assertiveness. Some Forgotten Australians may react to this situation with anger, but some will withdraw as they did as a child.

The current waiting lists to access services, and difficulty being placed in a quality care facility were also raised as concerns.

What skills and abilities would you like people who work in any of these areas to have?

A member of this group felt that staff working in aged care should know the difference between the Forgotten Australian and Child Migrant groups, and their unique experiences as children. Additional comments about the skills and abilities considered important for workers in the aged care sector included:
being a good listener;

staff that are properly trained  and paid decently;
staff must be attuned to and respect the different natures, individual behaviours, and varying needs of each person they provide care to;
an awareness of the unique fears that this group may have and to be prepared for these;
other professionals such as social workers need to be informed about this group;
skills in general mental health, emergency nursing, negotiation with highly stressed clients, and ability to deal with acute episodes; and
staff to be empathetic and non-judgemental.

One attendee suggested that the Montefiore Homes in Sydney provides a good example of culturally specific staff training.

Out of Scope Issues

Recognition through the receipt of a Gold Card, or similar was suggested and supported by most of the focus group attendees. Whether or not this card was attached to immediate access to particular services or concessions was not as important to some as the representation such a card could provide.

Other issues

An attendee raised the issue of non-payment for those attending the focus group in Melbourne. The HMA facilitator advised that it was not able to be considered in the present project – people had chosen to attend the focus groups without any prior commitment to making consumer payments. HMA agreed to notify the Department of Health and Ageing that this issue had been raised by an attendee.