The heart and soul of the organisation

Almost from the moment the VAAC first took form, Peter Knight and a small group of volunteers began meeting regularly to plan how to address the need for care and support of people with AIDS. The Support Program ‘was created by those infected and affected in the early days of HIV/AIDS in Victoria’.81 It grew from the recognition that there needed to be emotional, practical and material support provided for those with HIV/AIDS, as well as for their friends, families, lovers and the broader community. Formal training of volunteers began in earnest in January 1985, and training of the first AIDS Mates started shortly after. This program was based on an existing buddy system in San Francisco, where volunteers were trained in one-on-one care for people with AIDS. While AIDS Mates was more of a front-line approach, the second line group were volunteers trained in supporting patients with self-care, nutrition, health, stress and time management as well as dealing with grief and loss. Bill O’Loughlin, who was one of the first AIDS Mates, explains:

… the idea was to equip us personally to be able to form a very close relationship with someone with AIDS, to be able to provide the right kind of support for them, but also to be in a supportive environment ourselves, to be able to go through the experience as best as possible. So that was a very dynamic time and there was a huge amount of energy and commitment around that volunteer support program at the time.82

The Support Program soon underwent dramatic change. Peter Knight had foreseen the impending need when he warned at the end of 1984: ‘We have 22 volunteers and we need 88’.83 From a situation in which trained, ready and willing volunteers were waiting for clients to care for, by 1987 the rate of HIV infection was rising at an alarming pace, and more staff and volunteers were urgently required. The program came under increasing pressure in the late 1980s, as Support Convenor David Pullen faced steadily rising demand from those affected by HIV for home care, nursing, counselling, transport and financial assistance. Resources were stretched to breaking point and the situation was worsened by long delays in funding due to a dispute between the federal and Victorian governments over AIDS funding.

In February 1989 VAC/GMHC President Keith Harbour made a public appeal for more donations and additional volunteers to help the Support Program cope with demand, which it was forecast would only continue to grow with the HIV infection rate.84 By 1991, the number of clients being cared for by the Support Program had doubled in the space of just one year to 162, increasing to 238 clients the following year. Clients in some areas of Melbourne had to be put on waiting lists while the recruitment working group worked hard to enlist and train new volunteers.85

Clients were supported by Care Teams formed by Support volunteers, whose numbers grew to over 1000 by the early 1990s. Care was taken to get to know the volunteers and try to place them with people they would be compatible with. Teams of up to eight provided home care assistance, working with clients for anything from a week to six months, and as long as a year in some cases.

To ensure that control and direction remained in the hands of the volunteers and management structures did not become over-bureaucratised, each Area Group of the Support Program – of which there were eight in the metropolitan region alone by 1992 – operated relatively independently.86 Long-time volunteer Gill Mahony recalls that the Area Groups were ‘like a well-oiled machine, with an Area Coordinator, deputies, Care Team Coordinators, and a newsletter manager’. Groups held regular training sessions and were ‘really well equipped to run smoothly’.87 Ian Foote agrees about the successful organisation of the program. He recalls:

I think everybody’s role was very clear, it was extremely well organised. I know many, many years ago somebody went overseas and came back and said, ‘The VAC is not one of the best organisations in the world, it is the best.88

The workload shouldered by the team of Support volunteers and the extraordinary dedication they displayed led to the description of Support as ‘the engine room of the whole organisation’. Sensitive, knowledgeable, resourceful, practical and reassuring, volunteer carers formed an army of assistance for people living with HIV/AIDS. Many volunteers also worked in full-time jobs and demonstrated enormous commitment to the care of their clients, particularly towards the end of some clients’ lives.

… in the last stages when it was a 24 hour Care Team … there’d be very careful rosters put in place to ensure that people could be there. Because this was at a stage when there were people who had very few connections. A lot had come from overseas or interstate because their families did not know of their conditions, or … they had been shunned. So this was where the Support Program really came into its own, they provided the wishes of the client in the final days.89

For some clients, the Care Team was their only source of support. ‘We looked after one chap who had no friends and there were no relatives. His relatives overseas in Italy thought that he had pneumonia. We were the only people at the funeral’, recalled Jill Missing, who joined as a volunteer in 1993.90 Others worked closely with the partners, friends and families of patients, for whom the support and assistance, particularly the around-the-clock care provided in the final days, was often crucial. The partner of one client commended: ‘I have nothing but praise for the team that came into our home. They were excellent.’91

For many volunteers, the decision to become a carer was motivated by a desire to do something for people less fortunate or to give back to the community. Some had experienced the loss of a loved one of their own to AIDS. However, most found that they gained as much as they gave, forming close bonds with clients and gaining new skills and self-confidence. ‘… you cannot be on a care team and have cared for someone and not have been changed in some way by it’, reflected one carer.92

Just seeing the difference that a properly organised and property functioning care team can make to clients’ lives – enabling people to stay at home and be independent. To finish their lives the way they want to and to be in charge of that. That’s been really rewarding. It just makes me feel honoured to be a part of that and to be included in people’s lives on that level when they’re focussed on what their life really means.93


References


Graduation ceremony for first AIDS MatesIan Goller with new VAC support graduates

Graduation ceremony for the first group of AIDS Mates at the Jam Factory in South Yarra, 1985.

Top: Signing graduation certificates (from left) Peter Knight, Adam Carr, Phil Carswell and Ian Cherry.

Bottom: Ian Goller welcoming the new graduates to the VAC Support Team.

Phil Carswell

AIDS Mates

The second group of AIDS Mates, including Nick Andronis, Andrew Foster, David Spitzkowsky, Vikki Sinnott, Con and Penny, c. 1985.

Bill O’Loughlin

Support event early 1990s.bmp

At a Support event in the early 1990s: Daniel Coase, Chris Gill, Bradley Engelmann, Tom Worsnop, Dean Michael and Andrew Williams.

South support group c. 1991

South Support Group, c. 1991.

Bill O’Loughlin

John Hall home care course.bmp

John Hall demonstrating at a volunteer home care course.

Georges care team.bmp

George’s care team.

Kiss-in poster

Poster promoting an ACT UP ‘Kiss-in’ at the Bourke Street Mall in Melbourne for World AIDS Day, 1990.

Red Letter Press.
State Library of Victoria, H2003.90/787