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Living and Serving 3: GIPA engagement guide and framework for Ontario ASOs

PracticesPeople living with HIVCanada

Summary

"Welcome to Living and Serving 3, a GIPA wise practices guide and engagement framework for AIDS service organizations. GIPA is always a work in progress -- a continual process of renewing our commitment and ensuring that our practices at all levels of our organizations ensure the engagement, investment and participation of people with HIV/AIDS. This document builds on the work done by the Ontario AIDS Network (OAN) and the Ontario HIV Treatment Network in supporting Living and Serving II, a ten-year progress report on GIPA in Ontario ASOs published in 2007. This guide and framework document also builds on OAN’s commitment to GIPA through the Positive Leadership Development Institute. Although this document focuses on AIDS service organizations in Ontario, we acknowledge that this is only part of the picture of the reality of persons with HIV/AIDS today and that much additional work needs to be done."

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Key Findings

Key points:

  • Commit to the greater involvement and meaningful engagement of people living with HIV/AIDS, grounded in human rights and the dignity of the full human being
  • Aims to transform all who live with, work in, and are affected by, HIV/AIDS in Ontario
  • Commit to personal and social transformation
  • Value community expertise in embracing the challenge for the betterment of society
  • Value inclusion over exclusion a quest for integrity at all times and the embodiment of self-determination
  • Promote the evolution of thought, action and collaboration among us and with our allies

Key findings related to emerging/promising principles for engaging PWLLE:

  • Commit to the greater involvement and meaningful engagement of people living with HIV/AIDS, grounded in human rights and the dignity of the full human being
  • Aims to transform all who live with, work in, and are affected by, HIV/AIDS in Ontario
  • Commit to personal and social transformation
  • Value community expertise in embracing the challenge for the betterment of society
  • Value inclusion over exclusion a quest for integrity at all times and the embodiment of self-determination
  • Promote the evolution of thought, action and collaboration among us and with our allies

Key findings related to emerging/promising practices for engaging PWLLE:

Build discreet networks to identify PHA experts and consultants.

  • Ensure that confidentiality is respected if approaches are made. ASOs use the services of many experts, not all of whom are self-identified PHAs. There is no need for public disclosure in order for a PHA to contribute expertise.
  • Do the internal work in your ASO to value life experience as well as professional credentials. A workshop or sensitivity training for staff and volunteers may be helpful.
  • Intentionally create ways and means for the career development and engagement-for- pay of people who are HIV-positive. Even a short-term contract may be the starting point that enables a person to enter or re-enter the workplace.

Volunteers

  • Ensure that disclosure of HIV status is not a requirement for PHAs who volunteer
  • Build in strong safeguards of confidentiality for PHA volunteers
  • Ensure that volunteer work is well defined in terms of expectations and limits – this helps both the volunteer and the ASO and reduces volunteer burnout
  • Ensure that your ASO has ways of consulting regularly with volunteers about their experience and needs as volunteers. Ensure that these are acted on and reported back to the volunteers. Practice respect for the voice and self-determination of volunteers in determining their involvement as volunteers.
  • Consider an investment in a staff volunteer coordinator as money well spent if your ASO wishes to be closely connected to community and needs their involvement in order to function
  • Take into account the reality of episodic health ups and downs for PHAs and build flexibility into the way volunteer positions are filled and backed up

Framework for engagement in GIPA/ MIPA

The expansive mind-set considers how we are with GIPA and where we want to expand, practice, experiment or commit to change with the greater or more meaningful involvement of people living with HIV/AIDS.

1. Individual: lens of emotional, mental experiences – constant search for meaning with PHA.

ENGAGE PHA TO:

  • review papers or ideas the agency is considering
  • act as an advisor to a manager

2. Community: collective resonance to be build based on shared values and a common desire to work together wherein the communing itself produces ideas and momentum.

ENGAGE PHA TO:

  • join in committee work
  • take on a collective project
  • design a program

3. Action: act on the creating change. An accountability and involvement of PHA loop.

ENGAGE PHA TO:

  • organize events or demonstrations
  • be involved in implementation

4. Systems: think about frameworks, systems theories and results of performance. Involve new partnerships, integration, collaboration and re-alignments.

ENGAGE PHA TO:

  • board work
  • strategic planning
  • advising boards
  • knowledge translation

Best Practices of what to consider during engagement with PHAs:

Stigma

  • ASOs should aim to continually recognize stigma in its many forms and work to combat it through changed attitudes, actions and organizational policies
  • People Living with HIV Stigma Index (The Stigma Index user guide) can be implemented

Cultural Safety

  • A foundation in place that allows PWLLE to feel respected based on their experience, but also on how they are respected as members of gay, Aboriginal, racial or cultural communities
    Investment in PHA capacity building
  • A process should be implemented where PHA can work in partnership with ASOs to develop unique approaches for capacity building. Resources include: Positive leadership development institute, AIDS Bereavement and Resiliency Program for Ontario’s Facilitator Training, Committee for Accessible AIDS Treatment’s Legacy Project.

Equality and Equity

  • Engagement in GIPA/MIPA will often lead to approaches based on equity – an acknowledgment of diversity and the need to build capacity so that PHAs and others can live and work together in ways that respect and empower.

Key Findings Related to Implementation Approaches:

  • Develop a variety of consultation mechanisms to identify needs and get feedback on existing services. Some PHAs who have disclosed their status may be comfortable with meeting in groups, while the opinions of those who fear disclosure can be sought through private conversations, surveys, telephone or online communication
  • Involve PHAs in data collection and research involved in needs assessments, program design and evaluation
  • To counteract fears of loss of services and to deal with power imbalances, reassurances can help but may not be enough. The consultation mechanism may have to be carried out by those who do not provide services. Ways of assuring anonymity and confidentiality will have to be developed. Trust may take time to develop and be strengthened through testing and experience. Staff and volunteers may need refresher training in respecting confidentiality.
  • Most people settle into the security and comfort of routines. This includes how power is shared. Staff/volunteers may need training and support in power sharing, which can be unsettling and fearful. Likewise, PHA service users may need support in sharing power.
  • Build in mechanisms to report back regularly to service users on progress in implementing change

Assess and set goals:

  • Assess current GIPA practice (ongoing), assessment tools such as environmental scans, needs assessment and surveys to help identify needs and satisfaction levels.

Measurable outcomes

  • Measuring through Surveys etc.

Accountability

  • Ensure that there are mechanisms for meaningful participation, feedback dialogue etc.

Other Resource Materials (i.e. images, frameworks, tables…)

Evaluation/Implementation Tools