Minutes of the
CONSUMERS COMMITTEE
Chairs: Charmaine Graham, Marcelo Maia
Consumer-At-Large: David Martin
Tuesday, March 17, 2023, 2:00PM – 4:00PM
Minutes
Committee:
Asia Betancourt
Billy Fields
Charmaine Graham
David Martin
John Schoepp
Marcelo Maia Soares
Paul Carr
Raffi Babakhanian
Rob Walker
Steven Wilcox
Yves Gebhardt
Staff/Presenters/Guests:
Catherine Farquharson (AETC)
Doienne Saab
Jose A. Colon-Berdecia
Agenda Item 1: Welcome & Roll Call, Ice Breaker, Moment of Silence, Reminder to Review Rules for Respectful Engagement, Approval of the Minutes
Meeting started by David Klotz due to DOHMH technical barriers. Melanie Lawrence was able to join at the end of the introductions. Ms. Betancourt led the moment of silence. Ms. Graham asked the committee to review the Rules of Respectful Engagement on their own.
View options are available at the top of the zoom screen and allows for magnification.
Logistics for April were quickly discussed, with the committee voting to hold the meeting on April 11th from 2-4pm.
Agenda Item 2: Discuss: Should CABs be mandated?
- CABs were mandated, that requirement has since been removed.
- Took power from consumers, diminished voice.
- Mr. Martin was part of a presentation of recommendations on CAB practices in 2017.
- CABs were once required – PHS had to collect minutes from CABs to ensure they were meeting.
- CABs were removed without input from consumers.
- Apparent that agencies did not want to put in effort to manage CABs.
- Mr. Harriman shared contractual language.
- CABs were not functional – able to collect consumer input in different ways.
- Could use process mapping and secret shoppers.
- CABs are not only way to improve services – can be marginalized and no function.
- Will largely remove self from deliberations.
- CABs are always essential – need to be in room when decisions are made – but designed to fail – if CABs had same support as agencies in RW, CABs would work – no designated money for functions.
- Need training, funding and structure.
- People saw CABs as a threat.
- Consumer committee is same as a CAB.
- CAB members were not aware that CABs were a requirement – and that orgs needed CAB minutes to access funding.
- Hard to envision how secret shopper evaluation works.
- Can take 6 months to a year to really understand what’s going on.
- ACTG – AIDS Clinical Trials Group
- HPTN – HIV Prevention Trials Network
- AMC – AIDS Malignancy Consortium – part of larger National Cancer Institute
- Input of community into the delivery of services – nothing more essential than end user’s input
- Does it have to be either or? Can there be mixed methods of getting input?
- Surveys are limited.
- Have seen CABs improve services- shortened wait times, developed more efficient processes.
- Secret shoppers seem valuable.
- Small agencies can have effective CABs – but not against idea of a pooled CABs.
- If agencies are having a hard time managing the CABs – why are they in this business – if they cannot manage a CAB, they aren’t going to have insight into how to improve services.
- Why are we working with agencies to improve services, but not with CABs to improve feedback etc.?
- Important to highlight the lived experience aspect of HIV.
- Can send an agenda of items for input to CABs, review and integrate that input into policy decisions in the Council.
- Oppose the fact that the recipient removed this requirement without consultation with the Council, and specifically with the Consumers Committee
- Mr. Harriman explained that the change in the requirement was processed through the Quality Management Committee – which is supposed to have Council representation on it.
- Alternatives to CABs? Besides secret shopper and surveys?
- Melanie will write a data/info request to get more information on CABs.
- When was requirement rolled back? (around 2014)
- How did the roll back impact CABs?
- How many CABs are there (specific to HIV and separately as part of larger CABs)
- Who represented the Council on the QI group at that time?
- Can we survey agencies to find who has a CAB – and get input on how the participants feel about their CABs?
- Can look at conducting a survey in the future.
- Get language that previously existed to require CABs.
- Can we leverage QI to support CABs?
- Survey – can look at functionality of CABs.
- Whether they have structure
- Issues of conflicts of interest – i.e., employees of agencies serving as chairs of CABs
- Will place this item for further discussion on next agenda.
- CABs continue to be recommended – but how?
- It’s part of the contractual language options for gathering input from consumers for the QI project
- Agenda Item 3: Should the Council develop a youth insert/flyer to improve youth recruitment?
- People do not read.
- Can use apps to advertise the Council to youth.
- How will the insert impact youth engagement?
- Jose is already hitting the streets.
- Youth are not currently filling out the application.
- Creating materials that engage youth and indicate that the Council is for youth as well – opens space and opportunity.
- Are agencies recruiting youth to give input?
- Don’t want to do the same thing in same way and expect different results.
- Need young people to design how this should look.
- Great to have literature on youth.
- Is current pamphlet being handed out?
- In person is best way to engage people
- Talking to people in person is most helpful.
- Need young people in picture to develop and design this.
- Mr. Harriman reminded the committee that youth work is in process.
- Bringing youth into the work is especially challenging because the work faces procurement barriers. Bringing in two younger people to assist with this work – a college aide and an intern.
- Recently came up with idea that could employ youth the inform the design to ground program design authentically in youth voice within procurement restrictions that are delaying things like gift cards needed to support things like focus groups.
- Important to think about youth schedules, access, and the barriers they are experiencing.
- Ultimate goal would be to develop youth peer positions that strengthen engagement and provide input and insight into improving services.
- Very important to do this work – need to address the gap of input due to the lack of representation.
- What is Jose’s experience/input on this?
- Jose:
- Pamphlet is being distributed widely.
- Youth have a set of challenges specific to them.
- Unstably housed – hard to track down.
- HIV not a priority for many young people
- Mr. Gebhardt emphasized the need for young people to make their own decisions – can create a CAB for young people – a committee for young people. We cannot make decisions for them.
- Ms. Lawrence asked if we can vote on the insert/flyer for youth. Highlights from discussion follow:
- Flyer is not best way to reach out to youth.
- Should put ads on GRINDR.
- Why not ask a youth organization to develop the flyer?
- Challenges will not be resolved by a flyer.
- Issues of meeting times, disclosure, etc.
- Lapel pin took forever – need to think more deeply about youth engagement.
- Really need to talk to young people with HIV.
- When younger people serve on the Council – rarely renew their membership.
- Will not sit inside the Consumers Committee
- Could be asked of the staff who will work on the youth initiative.
- Rob Walker made a motion that the CC recommends that the Council develop materials to engage youth in Council work.
- Marcelo Maia seconded.
- For: Yves, Steven, Asia, Raffi, Charmaine, David, Billy,
- Against: None
- Abstain: John
- Motion passes. Majority of people who vote, not majority of people who are present.
- Agenda Item 4: Buddy System
- Buddy System lacked formal adoption, but during COVID, folks were assigned to a “buddy” to help navigate Council processes as well as provide personal support. Was not formally adopted.
- Need option to meet in person – buddy system cannot substitute for this.
- Just need a directory so that we can call each other when we have questions etc.
- System needs more structure – weird when people who don’t necessarily get along are paired up.
- System was not supported after introduction.
- May not need a buddy all the time.
- Does a phone tree make more sense?
- Melanie will research digital phone trees – will distribute a directory.
- How do we create space for people going through something? Melanie has assisted when and where she can –
- Could create a subcommittee to help folks in need.
- Will table discussion or now?
- 2023 Planning Agenda Review: Discuss to Set Dates
- Dental access – lack of sites that accept clients on Medicaid and other gap funding.
- Report on oral health program coming in October – once there is “enough” data to present.
- PHS map has no sites on resource locator map – PHS map currently not functional – should be taken down.
- ADAP unknown – many places do not accept it because they are unaware of it.
- Dentures not available in a timely fashion – need funding for temp dentures.
- Too little known about dental ADAP program.
- ADAP did share coding for covered procedures.
- Told people about RW funding for oral health – but clients cannot figure out where to go.
- TGNBNC services are also impossible to locate.
- Melanie will send oral health recommendations to committee.
- Committee should ask about units of service – including payment for dentures.
- Mental health should be strongly incorporated into oral health.
- My dental procedures were denied – had to appeal with help from an organization – seems like denials are standard operation, forcing people to waste time trying to access appeals.
- Getting documentation from hospitals is so challenging.
- Missing front teeth -impacts many PWH – impacts nutrition and self-esteem.
- Need a directory of dental services – this is a required activity of the oral health directive.
- No way out of HASA – this is needed.
- For next meeting, consolidate some of the below mandates together.
- Committee HW – do the consolidation? Or do that internally?
- Do it internally and include a time frame.
- Staff vacancies and impact on access to services, i.e., legal
- Insurance coverage issues – relationship to denial of approvals – no one to assist in navigating the byzantine process of appealing denials.
- Using EFA for medical expenses
- Measuring implementation of aging screenings and scans
- Identify an SME on PWH who are out of care.
- Discomfort with lack of experience and high staff turnover
- Compounded by a lack of care coordination.
- Schedule financial training (with PSRA orientation)
- Addressing isolation – re-examine aging directive.
- Host event to improve testimony collection from Spanish speakers.
- Decide how to support increased access to benefits navigation across the portfolio.
- Rules of Respectful Engagement – deepening this practice
- Changing meeting time
- Creating consensus
- Helpful software exists.
Public Comment/Other Business
None
PLANNING COUNCIL GROUND RULES FOR RESPECTFUL ENGAGEMENT
- Be honest and specific
- Focus on content rather than personalities
- State your views and allow others to state theirs
- Treat everyone with respect
- Wait to speak until recognized
- Try to identify practical solutions as well as problems
- Recognize that the facilitator may have to limit discussion to move the agenda—apply the “three-minute rule” to limit the length of an individual’s comments
- Keep focused on the goal of the Planning Council: to provide the best possible services to consumers—and put aside personal agendas
- Disagree without being disagreeable
- Be prepared to report back the topics and outcomes of the meeting, but keep the confidentiality of individual speakers
- Keep an open mind—make a decision only after information has been presented and discussed
- If you are unsure about what someone said, respectfully ask them directly
- If you are upset, take some time to calm down before engaging in further public discussion
- Both follow and help enforce these ground rules
Please note: All Council and Committee meetings are recorded and open to the public (with some exceptions).
