Consumer Committee Minutes May 17, 2022

Committee Members:

NYCDOHMH/NYSDOH:  Melanie Lawrence, David Klotz, Cristina Rodriguez-Hart, Kimbirly Mack, Jose Colon-Berdecia, Claire Simon

Agenda Item #1: Welcome/Introductions with Pronouns/Moment of Silence/Review of the Meeting Packet

 Co-chairs Leo Ruiz and Charmaine Graham opened the meeting with a welcome, roll call and ice breaker about favorite beverages. . The minutes were accepted with changes. A moment of silence was conducted.  

Agenda Item #2: Review of Communication and Inclusivity with Dr. Rodriguez-Hart

Presentation highlights:

(Largely drawn from the book, Crucial Conversations Tools For Talking When Stakes Are High)

• very condensed summarized version of the last presentation
• meetings are an important place to build and create an inclusive culture that engages people and prepares them to do their best
• can set the stage for inclusive city before the meetings even occur, such as through the emails that you send out the way that you set up the space or the software and applications being used
• establish customs and expectations up front and you would stick to those ground rules 
  • If we make rules, but we don’t really follow them, then that may mean that some people feel unsafe in the meetings
• really important to actively bring in all voices into the conversation
• leadership of any group needs to explicitly define inclusive city and model it for others in the group
• provide opportunities to share in a variety of ways, some people may be less comfortable speaking out loud
• important to collect data on how inclusive your meetings are
  • track who is actually doing, most of the talking, who is not talking consistently and then try to invite those people to be more participatory
• Inclusivity requires safety
  • If safety is at risk, you want to step out of the conversation and make sure that and restore safety before you continue, and then you can you can go back to the dialogue
  • To have safety, we need to hold each other accountable and not just rely on leadership to do this

Discussion Highlights

• we could stay closer to I statements about our experience and how we feel, and maybe give a suggestion if you don’t like something
• encourage everyone to think outside of the box because there are many paths to success
• How would we track who is talking?
• in general it’s good to talk about roles, a little bit because it can be hard to monitor the chat box, keep track of time, etc etc
• Unfortunately, we have a way of making people feel excluded and that’s happened to me a whole lot of the year like I’m unimportant – like I don’t matter

Agenda Item #3: NY HIV Integrated Plan, Continued

Claire Simon presented with support from Melanie Lawrence. The presentation was a conduit to gathering feedback from the committee.

Highlights

• the thinking for beyond 2020 – how do we continue to build on the progress that’s happened or to address these areas, including health disparities health equity trauma informed care?
• the mandate is to create integrated plans that prevent new HIV infections improve HIV related health outcomes for people with HIV. Reduce HIV related disparities and health inequities and achieve integrated coordinated efforts that address the epidemic
• Coordinating group is made up of the co-chairs of all of the advisory groups in New York state. There are four of planning groups.

Planning Process

• Now in the process of planning a Community convening so initially we had planned to do them in April and May, but now they’re going to be held on June 1 and June 7
• During the summer, the AIDS Institute will continue to work on the narrative for the report, we will be presenting a draft of the report to the advisory groups for feedback will also have a public comment period.
• In early fall probably around September, October is will be asking all the planning groups to submit a letter of concurrence for the document
• Due to HRSA December 9^th

Breakout Room Highlights

Are there any edits or changes, you would like to make to the nine key activities outlined

•  Conduct regular anti-stigma activities
• Participants: the client, the public is getting quite tired of learning basics of what does HIV…Oh, do you not put a condom on
  • Can do deeper HIV education so that people understand
• Trainings make a big difference in how people deliver services
  • But they must be exciting and encouraging
• The HIV care delivery system needs a refresh – the images, the language, to better connect with people

Where are people experiencing barriers to care?

• COVID – so many clients have not seen their case managers in over a year.
  • No accountability – clients have complex medical needs that are being compounded by a lack of care
• Lack of technology that facilitates access to telehealth services and other service needs
  • Some people have phones that will not connect to the internet, won’t do video, etc.
  • Difficult for older folks to navigate technology
• Clients are living in reprehensible housing situations – rat infested, etc.
• Need for peer advocates to help clients access services
• Need increased representation of LGBT+ folks in institutions

Review of break out room findings

• Should have youth peer workers to assist positive youth
• Respect for pronouns
• Make spaces more accommodating and inviting
• Increased representation among providers
• Patient centered services

Breakout room highlights

• Peers need to be supported to support others
• Review importance of confidentiality with staff – ensuring staff do not make clients feel they are talking about them or sharing their confidential info
• Better flexibility in scheduling appointments to accommodate people’s work schedules
  • Used to have to ask for a day off every 2.5 months to go to appointments
• Need more short and long term support groups
• Need CABs to ensure that service spaces are affirming and welcoming

Agenda Item #4: NY Statewide Peer Network

Presented by Dawn Trotter and John Wikiera:

Presentation Highlights:

• The forum is safe place for everyone to comment,  have discussion and just support education advocacy for people with HIV across New York state
• Focus on consumers but providers are invited
• The forum has really helped address the social isolation so many people are feeling
• Send out flyers each week, and reminders about the meetings
• Each meeting focuses on an educational topic, such as quality improvement, mental health, etc.
• You can receive credit for attending, especially if you are working on your peer certification
• Looking forward to returning to normal and seeing peers get certified again
• Our mission is to join hands in solidarity with consumers and providers to reduce stigma and discrimination and promote involvement. To reduce the number of new infections through education, advocate for access to quality healthcare services and promote respect for the human race, most of all people infected with or affected by HIV, AIDS.
• Great way to share local information across the state
• Open to suggestions and input on future forum topics
• In the beginning, there were a few people that were really disruptive –  we actually had to ask a couple of people, please don’t come back-  because others were saying they are not returning. Really important to uphold a space that is stress free.
• People were violating the group rules and norms
  

Agenda Item #5: Lapel Pin Update

Meetings are going well – biggest concern is the ability to pay for the item.

Inability to pay bills is a larger concern than the pins

Agenda Item #6: New Business/Public Comment

Recruitment to the Council is underway – everyone should have received flyers and brochures. Could use more women, especially from the Bronx and Queens, in the Council.

Need an update on the buddy system – some people have never spoken to their buddies.