Minutes of the
CONSUMERS COMMITTEE
Co-Chairs: Charmaine Graham & Leo Ruiz
Consumer-At-Large: David Martin
Tuesday, June 21, 2022, 2:00PM – 4:00PM
Link to Zoom Video Recording of Meeting
Draft Minutes
Attendance:
Atif Abdul-Haqq
Raffi Babakhanian
Lisa Best
Paul Carr
Sam Cutaia
Billy Fields
Lawrence Francis
Yves Gebhardt
Charmaine Graham
Graham Harriman
Ralph Henderson
David Martin
Yves Gebhardt
Ralph Henderson
Marcelo Maia
Natasha Martin
Micheal Rifkin
John Schoepp
Rob Walker
Steven Wilcox
Staff:
David Klotz
Kimbirly Mack
Agenda Item 1: Welcome & Roll Call, Icebreaker, Moment of Silence , Reminder of Rules for Respectful Engagement, Approval of the Minutes
Introductions and icebreaker were conducted followed by a moment of silence
Agenda Item 2: Communication and Inclusivity, Remember and Review
Dr. Cristina Rodriguez-Hart presented a refresher on a previous presentation about communication and inclusivity. The committee dug into the information and shared their own feedback. Highlights from the discussion follow:
- Important to listen before jumping in – allow people to finish their thoughts without talking over people.
- Seems like most conversations are conducted in a respectful manner, where people are listening to each other
- Like to listen and gain insight from others – important to hear others and contribute when something has not been touched on
- Lack of connection when meeting over video – need to get back to the norms of in person meetings, such as reading the Respectful Rules of Engagement – no longer read these
- Sometimes we jump in because the conversation is so fast moving – afraid that will lose the moment and relevance of the comment
- Need to find ways to do this respectfully to ensure that people have the space and time to talk and do not feel cut off.
- Maybe when people do jump in, the chairs step in – but if we are all responsible for the culture of the group, and someone cuts someone off – should a non-chair jump in? And how will that make people feel
- What if an additional person helped monitor the queue and the chat – and can stop someone from interrupting
- Assumed that everyone understands how to raise their hand, and how and when to use that function – but should review this and not assume.
- The chairs should be able to manage the queue and chat – shouldn’t need to appoint anyone.
- It’s everyone’s responsibility to manage the meeting and be respectful – believe we should read the rules at the beginning of every meeting.
- Zoom training has not been provided to any chairs – may be helpful to facilitating meetings.
- Want to feel like everyone feels comfortable discussing these issues.
How will face to face meetings work for people who work?
Hybrid meetings, accessible in-person and online are planned for the future.
The Annual Member Recognition
Agenda Item 3 : NY HIV Integrated Plan, Continue Discussion
The committee set an additional meeting to continue to discuss the integrated plan in the case that the allotted time was not sufficient for the discussion. Tuesday, June 28th, 12-1:30pm was set.
Committee agreed to move this discussion to the end of the meeting and continue the conversation at a future date. (Due to a lack of time, the discussion will occur on June 28th)
Agenda Item 4: Upcoming Planning Session Brainstorm
Question of what the CC needs to focus on in the next and future planning sessions. What are the issues that the committee would like to focus on?
- Post pandemic information
- Regulations
- service delivery
- technology demands/burden on consumers and providers
- People who are out of care – especially those who are aging and in isolation
- No representation, no one at the table to represent their needs
- Examine limited research findings
- Among people who are homeless, finding people who have not had lab work in over 2 years
- Filling ARV prescriptions without lab work
- Wellness checks help to fill in the gaps
- Insurance coverage problems have been rising – need to better understand how the pandemic has impacted access
- ADAP v RWPA v SSI etc.
- How insurance impacts coordination of care
- How well do people understand their insurance and the access/coverage they have
- Policy/advocacy training
- Could the consumers survey conduct their own survey?
- Depends on the scope
- Areas for survey
- Disability survey
- Post pandemic questions and issues
- Social isolation is a plague on wellness
- Mechanisms for fostering this don’t seem widespread or well implemented
- Tri-county doesn’t seem to be represented on the consumers committee
- Representative has not been able to attend
- No conduit for the CC’s info to Tri-County – no alternate person is attending
- Committee updates have not been happening – can ask staff to do quick updstes
- Important to discuss how money is spent, what is being worked on
- The funds are ours to provide to support consumers
- Include updates on agenda
- Deeper training on finance processes of the Council
- How preapprovals are barriers to care – burden on consumers
- Long wait
- Extensive paperwork
- Arbitrary denials – have to continually appeal – high burden
- How does this impact access to care – and people falling out of care
- Where do people access assistance with this?
- Long Term Covid impacts – long haulers, long Covid
- Living with disabilities not represented in the room
- Policy and advocacy training – how to use our knowledge
Agenda Item 5: Annual Member Recognition: Fun Activities Brainstorm
Brainstorm on possible activities:
- Charades
- Chess
- Spades
- Prizes – maybe a short tournament
- Volleyball
- Dodgeball
- Last year’s was a breath of fresh air
- Karaoke
- Water balloons (not allowed by park)
- Water guns (also not allowed)
- Loose agenda needed for recognition portion
Logistics clarification
- The committee reviewed the flyer – edits recommended
- Highlight transportation on flyer.
- Location of the picnic was clarified – upper state park.
- The CC is hosting the event.
- Lunch to be served at 1:30
- City mandate to only serve water – no ice tea allowed
- Billy offered to bring covers for the food – food vendor should cover this
- People can still bring drinks (e.g., sodas)
- Greeters needed to make people feel welcome – like Charmaine did last year
Agenda Item 6: Update on the Lapel Pin Subcommittee
Last meeting was cancelled – will spend this Friday reviewing the progress and clarifying where we are. Work will not be able to be completed during this planning session, and will continue into the next one,
Public Comment/Other Business
Lisa Best shared a link for financial assistance for ConEd
Mon, June 27th 10am– Mr. Rifkin invited the CC to an AETC Stigma Project – to disciss the project and want to ensure consumers are involved in the development of a toolkit to address and dismantle stigma.
Lawrence Francis being honored with an award – wants to thank every member of the committee who has helped shaped him and his work on behalf of PWH. The information
City Council of NY holding a hearing on gender and aging – David Martin asked to speak by SAGE on aging with HIV. Work on LGBTQ older adults
Paul Carr emphasized it is really important for everyone to engage in the PSRA because there is a plan to spend the $7 million underspending – normally would lose this money
Dr. Daskalakis gave a shout out to the NY RW programs an\d discussed
