Minutes of the
CONSUMERS COMMITTEE
Chairs: Charmaine Graham, Marcelo Maia
Consumer-At-Large: David Martin
Tuesday, April 11, 2023, 2:00PM – 4:00PM
Minutes
Committee:
Asia Betancourt
Billy Fields
Charmaine Graham
David Martin
Graham Harriman
Lawrence Francis
Lisa Best
Marcelo Maia
Paul Carr
Raffi Babakhanian
Yves Gebhardt
Staff/Presenters/Guests:
Catherine Farquharson
David Klotz
Jose A. Colon-Berdecia
John Wikiera
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. Mr. Fields 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.
Agenda Item 2: Planning Session Agenda
- Goal is to organize a subcommittee to consolidate and prioritize the list that came out of last June’s meetings as well as other meetings.
- Items:
- Dental access –
- Request immediate review of oral health directory, as mandated by the Oral Health Directive: “Compile resources that facilitate access to complex treatment plans by mapping alternate funders, referrals, and sites with available and associated services.”
- Service Demand & Utilization Across Portfolio
- (Data request due now for presentation November 2023)
- Staff vacancies and impact on access to services, i.e., legal
- Measure implementation of aging screenings and scans
- (Text from Aging Directive: Conduct screenings and assessments for HCV, HPV, osteoporosis, mental health, cognition, social support, exercise, nutrition, oral health, sexual health, transgender health, medical issues specific to women (mammograms, etc.), cancer screening, substance use, smoking, cardiovascular disease (CVD) and any other issues included in HHS guidance for Aging PWH)
- Update on the training for harm reduction and trauma-informed care, including for ACEs (from the Framing Directive).
- Need to standardize ACEs screenings across the portfolio (pull framing directive text)
- Request to recipient to address the language.
- What parts of ACEs are being utilized – the language is broad and deep.
- Pushing to ensure everyone is appropriately screened for ACEs, with the information being embedded into the plan of care.
- DEI training has no measured outcomes – want ACEs to have a feedback, evaluation loop – shouldn’t just be a checkbox.
- Important to think about the impact of HIV on accelerating aging.
- Would providers use the same screenings for a PWH for a long time, versus someone newly infected?
- Are screenings happening, how is info being used to inform the care plan?
- When are ACEs the focus of trauma work, versus more recent experiences?
- Impact on client discomfort with lack of experience and high staff turnover
- Could be an important issue for CABs to bring up. (necessary to think about elements of a functional AB)
- Could this be added to CHAIN?
- Is there a check-in with clients to see how they are adjusting to their new provider?
- How do programs determine how to match clients with providers?
- When there is a change in staffing (i.e., loss of a provider) how is the new staff person for the client selected – should be client choice, with an accompanying eval on satisfaction?
- Are aging services being made available to all older PWH –do you need a specific referral or is it automatic?
- How to increase access to benefits navigation across the portfolio
- For funded RWPA programs
- Medicaid, Health Homes, SNAP, ADAP, HASA,
- How is information kept updated/accurate?
- Address isolation – re-examine aging directive measures and supports.
- Measure currently in directive in outcomes section: % increase in consumer social support (peer delivered services, support groups, health education groups) activities over 12 months. (Intervention C from the Aging Directive)
- Can measure what we are doing but not necessarily the impact of what we are doing.
- Who is available to advocate for clients when services are not meeting clients where they are?
- Assisted living and SROs sometimes have people living in filth.
- How do we help people who cannot advocate for themselves?
- Congregate housing is really troubling – managed housing, client voice minimized, clients treated poorly.
- End of life care is not up to standard – need a presentation on this, possibly in the full council.
- Asia’s daughter work with people having this experience – would testify.
- Need to bring in HASA – important to organize our thoughts to have a productive conversation.
- Policy committee is hosting HASA in an upcoming meeting.
- EFA for medical expenses (demand) – linked to denial of services.
- How is payment of last resort implemented with this?How to determine how medical bills are paid and what is the responsibility of the clinic versus the client.What are the barriers to accessing this service, why is it not better utilized?What is the status of a searchable services directory for access to services?
- Assistance
- Building Consensus
- Rules of Respectful Engagement – creating agreement about how to deepen this practice.
- Schedule financial training (with PSRA orientation) (Proposed: May 2023)
- Insurance coverage issues – relationship to denial of approvals – no one to assist in navigating the byzantine process of appealing denials (Proposed: 2023-24)
- Using EFA for medical expenses (intervention)
- Information Gathering (Proposed: 2023-24)
- PWH who are out of care.
- Testimony collection from Spanish speakers.
- Change meeting time for CC during next planning session (Immediate)
- Timeline and needed materials would be determined by subcommittee.
- Subcommittee Volunteers:
- Committee will further refine these items; plan is to meet twice a month.
- Deadline to be determined. Charmaine Graham, Asia Betancourt, Billy Fields, Lisa Best, David Martin
Agenda Item 3: Northeast Caribbean AIDS Education & Training Center
- Provide trainings across the region – walked the committee through the different types of work that falls under their umbrella.
- Work with Puerto Rico, the Virgin Island,
- Run multiple initiatives, including education support for medical and other schools.
- Goal is to increase numbers of competent HIV care professional.
- Two workgroups: Implementation and of HIV services, care and prevention, another on structural competency/social determinants of health
- Collaboratively develop programming.
- Continuously produce webinars focused on local needs and context.
- The emerging public health crisis – virtual conference
- Advocate for people with lived experience to take on leadership roles throughout the work.
- Seeing a lot of value with people sharing their experience, particularly around PrEP
- Peer work in integrated throughout the AETC – peers work on training topics, help select subject matter experts, work on the podcast, and are working on a special SPNS (Special Projects of National Significance) project on HIV & Aging with a specific focus on frailty.
- PWH are aging quickly – likely feeling impacts of being 10 years older than we actually are.
- All certified peer workers can receive continuing education credits by attending AETC webinars and trainings.
- Does AETC continue to promote condom usage?
- Conduct a lot of programs on PrEP, will take the feedback to AETC to emphasize the need for condom messaging.
- Important to not trade one intervention for another – especially with the lack of protection for other STIs.
- PrEP is often not appropriately targeted – the risk and the uptake do not align.
- Some agencies are really great at emphasizing safer sex options.
- Also, important to include U=U
- Helping people understand their risk is the most impactful way to promote healthy behaviors.
- What does the curriculum for medical students look like? Catherine can provide this.
- Most trainings are geared to providers.
Agenda Item 4: Youth Work
Discussion
- CABs that serve older adults are not going to work for youth.
- Need to connect with youth.
- Important to explore and plan how to build a youth committee out for the Council.
- Update on Youth work:
- Current plan is to develop a program where youth are hired to design the program, thus circumventing some of the issues with getting incentives into their hands.
- Further Discussion:
- Good idea. Self determination.
- Barriers to youth access: care for young people must look different – have different needs – scheduling demands, financial demands (need to work), different priorities.
Agenda Item 5: Draft of NYLINKS Conference
Melanie quickly ran through the draft version of the slides to be presented.
Highlighted focus on use of implementation science, provider interactions, comprehensive care approaches and the strategies in the slides.
Discussion
- Prep schedules were discussed.
- Asia and David volunteered to assist.
- No questions
Public Comment/Other Business
David Martin: For the conference, 1st workshop discusses continuum of engaging consumers. Impossible to get there on time due to the schedule. Many people will not be able to attend. Lacks consideration.
Center for Quality and Innovation – including patient engagement and input – should apply.
Lawrence Francis – going to conference a day early but must pay for the night. Conference is not consumer friendly in its scheduling.
Marcelo Maia – medical records and diagnoses – how can you change it. Thinking about stigma, how this increases stigma.
Can go back to provider and ask them to change it – should be able to change it.
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).
