Support Services in the HIVAIDS Sector

1
Support Services in the HIV/AIDS Sector

• An historical overview
• Presented by Don Hay
• Coordinator
• In-Home Support
  Program
  
• Victoria

2
Three Periods

• The Beginnings - Early 1980s
• The War Years - 1987 to 1996
• Hope at Last Living with HIV/AIDS
• - post 1996

3
The Beginnings

• 1981 - A serious illness detected amongst gay men
  in the USA
  
• 1982 - the name acquired immune deficiency
  syndrome coined.
  
• Late 1982 - gay newspapers all over the world
  were writing articles about the new illness
  cropping up in the USA, Canada and Europe.

4
The Victorian Experience

• Late 1983 the first Australian died of AIDS in
  Melbourne causing a wave of alarm.
  
• 16 June 1983 ALSO Foundation called a public
  meeting.
  
• 12 July 1983 - The Victorian AIDS Action
  Committee formed.
  
• 4 December 1984 - The Victorian AIDS Council
  formed.

5
Start of Support Services

• Peter Knight volunteers to organise support
  services immediately after the June 1983
  meeting.
  
• 1984 - hundreds volunteer after Victorian Aids
  Council established.
  
• 1984/5 -regional support groups established.

6
Training in Preparation

• 1984 - document outlining the organisational,
  training and support-delivery rational.
  
• Jan 1985 - formal training commenced.
• Feb 1985 - first intensive 6 week training
  program for AIDSMates.
  
• Second liners - practical support
• Third liners - counsellors

7
Some Context

• 1984 - HIV identified as the cause of AIDS
• Fear of transmission
• Late 1986 - advent of AZT.

8
Training in Action

• 1985 - East Support Group
• - 24 hour care team
• Victors Legacy
• 5 Regional Area Groups
• Area Coordinators recruited
• Telephone counsellors training - AIDSLine.

9
The War Years 1987-1996

• Battlefield
• Increase in AIDS numbers
• Increase in debilitating illness
• Increase in the numbers dying.

10
The War Years 1987-1996

• Clients Volunteers
• 1987 32 461
• 1989 80
• 1990 125
• 1991 162
• 1992 238 600
• 1993 285 850
• 1994 293 1134

11
1987-1996 Opportunistic Infections

• Pneumocystis Carini Pneumonia (PCP)
• Karposi Sarcoma
• Toxoplasmosis
• Cryptosporidiosis
• Cytomegalovirus (CMV)
• Candidiasis (Thrush)

12
1987-1996 Training

• Home Care
• Emotional Awareness
• Grief and Loss
• Dealing with an death and dying.

13
1987-1996

• 24 Hour care - teams
• Role of RDNS - the clinical arm.
• Average length of a care-team - 7 months
• Some area groups closed their books.
• Debriefing

14
1987 -1996 Context.

• 1987 David Williams Program - financial
  assistance.
  
• 1987 - Employment of first paid worker in Support
  Program
  
• 1987 - Grim Reaper Ad
• 1988 - Counselling Service
• - The Centre Clinic
• -Vitamart

15
1987-1996 Context.

• 1989 - People Living with HIV/AIDS (Vic)
• - First national conference.
• 1989 - Joan Goulding establishes support
• support groups for parents.
• 1990 - Founding of ACT-UP in Melbourne
• 1992 - Appointment Manager Support
• 1993 - Candlelight vigil - 10,000 attend
• 1993 - Opening of the Positive Living Centre
• 1994/5 - Euthanasia debate

16
1987 -1996

• We had been fighting a long and hard battle.
• We were fighting against a very powerful and very
  tricky enemy.
  
• AND we had been loosing the war.

17
1996 Hope at Last!

• 1996 - the introduction of antiretroviral
  medication.
  
• - HAART
• - combination therapies

18
Living With HIV/AIDSPost 1996.

• Improved health outcomes generally
• Increase in CD4s
• Decrease in viral load.
• Disappearance almost of opportunistic infections

19
Living with HIV/AIDS Post 1996.

• 2000
• Areas of priority identified by clients
• Social Isolation and boredom
• Depression
• Mental health issues
• Poverty

20
Living with HIV/AIDSPost 1996.

• We are living longer and have more spare
  time.
  
• Our needs are generally not home nursing but
  involve social issues and quality of life
  issues.
  

21
Living With HIV/AIDSPost 1996.

• People are stuck at home and the four walls
  become like a prison cell.
  
• It Support Program gets me to my medical
  appointments and is there in times of need.
  

22
Living with HIV/AIDS Post 1996

• Support Program
• Care teams Volunteers
• 219 570
• 168 426 2378
  transp
  
• 106
• 89 clients 85

23
Living with HIV/AIDSPost 1996

• Work of the Support Program
• Short term case work
• Volunteer transport
• Volunteer social and emotional support - usually
  one on one rather than care teams
  
• Provision of day outings/bus trips.

24
Living with HIV/AIDSPost 1996.

• Other services introduced
• Beach holiday (One off)
• PLC - pantry on off pension week
• David WilliamsFund
• - Financial Counselling
• Living Positively Project
• - one-on-one coaching/support
• Drop-Ins

25
Living with HIV/AIDSPost 1996.

• PK Tiks (Social Isolation Project)
• I didnt have a life before you came on board.
  My carer had his work cut out for him.
  
• I get two tickets to see a show which enables me
  to take out a friend for once. I am able to GIVE
  instead of take which surely strengthens
  friendships and creates new ones.