Consumer Committee Minutes May 16, 2023

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Minutes of the

CONSUMERS COMMITTEE

Chairs: Charmaine Graham, Marcelo Maia

Consumer-At-Large: David Martin

Tuesday, May 16, 2023, 2:00PM – 4:00PM

Recording Of The Meeting Here

Minutes

Committee:

Billy Fields
Charmaine Graham
David Martin
Graham Harriman
John Schoepp
Marcelo Maia Soares
Natasha Martin
Raffi Babakhanian
Rob Walker
Yves Gebhardt

Staff/Presenters/Guests:

David Klotz

Kimbirly Mack

Melanie Lawrence

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. Roll call conducted by Melanie Lawrence. Moment of silence led by Charmaine Graham.

Agenda Item 2: Priority Setting Resource Allocation Orientation with David Klotz

  • Highly detailed outline is available in the slides Mr. Klotz sent out prior to the meeting.
  • Setting priorities and funding is the core function of PSRA.
  • Council is fully responsible for these determinations – they are not recommendations to the recipient.
  • Currently grant total is $93 million.
    • Award has 3 components: Base (80%) Minority AIDS Initiative (20%0
    • Base is divided into two parts – Formula (2/3) # of people living in the EMA (largest in country) and supplemental (need makes up 1/3)
  • Used to be an annual application, recently moved to every 3 years.
    • Is this rewarding HIV transmission – more infections mean more money?
  • 75% must be used for core medical services, 25% is supplemental – we apply for a waiver on this every day, NY spends 45% on supplemental.
  • Primary purpose is to improve health outcomes for PWH.
  • 10% of grant is for admin.
  • 5% or up to $3 million is for quality management is allowed.
  • Don’t fund all service categories – determination based on need.
  • All RWPA money must be Payer of Last Resort (POLR)– other funds must be used first.
  • Council determines scenarios, spending plans, reprogramming plans and carry over plans.
  • More than 5% underspending will result in a grant reducing penalty – have never been penalized.
  • Process: assess needs, draft directive, set priority and funding, adjust allocation based on grant, assess efficiency of admin mechanism
  • Look for underspending and low utilization to help determine priorities.
  • Use a variety of data sources to inform service need and utilization including CHAIN and epidemiological reports.
  • Support ADAP in a small way – but have the strongest ADAP program in the country – covers all ARVs as well as nutritional supplements – don’t take any admin percentage – which benefits other providers.
    • Helps ensure we do not underspend – all money sent to ADAP must be spent in EMA.
  • Eligibility is 500% of federal poverty level.
  • Lots of people move to NYC for benefits – impacts NYC’s need – is this considered?
    • Addressed in application’s narrative.
  • Council has a long-standing mandate that recipient must provide appropriate coverage throughout the city.
    • Cannot control who applies.
    • Recipient doesn’t have to fund top ranked apps to better achieve geographic coverage.
  • Fiscal Year March 1-Feb 28/29

Questions (and can always reach out to Mr. Klotz)

  • This year funded the aging directive and oral health by reducing ADAP.
  • In 2020, NAC created a subcommittee to study need for oral health service in NYC – already was a program in Tri-County
  • Medicaid was just mandated to provide full oral health care- previously provided limited oral health services – set up our program to support PWH in full access to oral health care.
  • Mental Health scores low on POLR because there are other funding sources
  • The determination of funded service categories happens in Needs Assessment
    • HRSA service categories are the containers for what services can be provided.
    • Needs Assessment determines need, IOC determines the service, PSRA prioritizes and funds it.
  • ADAP in general provides multiple services. ADAP is only for medications (how is this differentiated)

Agenda Item 3: Review of Consumer Committee Presentations to NYLINKS & the AETC

The NYLINKS workshop was developed by Charmaine, Raffi, Billy, Asia, David M. The AETC presentation was led by Charmaine and Raffi.

  • NYLINKS meeting could have better centered consumers.
  • Majority of NY PWH are in NY EMA – was a bit strange to host the meeting 3.5 hours away.
    • Conference started before first train arrived in Schenectady.
    • First workshop was focused on consumer input – found this exclusive.
    • Persons who could afford to stay an extra night were granted that night free – felt like a slight
    • Lots of working lunches and working dinner – no regard to self-care
  • Great presentations, but lots of tech challenges – seemed to lack planning.
  • If more consumer input was included in development of event, would have been a very different experience.
  • We showed our resilience and dedication in giving a quality performance despite the challenges.
  • Many things did not make sense – should not be a struggle to deal with obstacles that could have been managed.
  • We are on the Council because we are resilient – institutions that are planning services for us should be models of the how services should be delivered.
  • While this was not a replacement for the Power of QI – this was one of the other things that were meant to stand in for the lack of a conference.
  • Questions about Power of QI should be directed to Gina and Guadalupe (recipient)
  • Standards for programming have not been set – important to provide leadership in this area.

Drastic difference in makeup of who is delivering services and who is receiving services

Agenda Item 4: Quality Management Letter to the Recipient

Review of letter sent to the recipient reflecting quality management (QM) issues that were not addressed during the recipient’s QM plan feedback meeting. Mr. Martin walked the committee through the letter (which has been shared previously with the committee)

Letter highlights

  • Addressing equity
  • Improving responsiveness to PWH
  • Importance of PWH engagement in planning and implementation of HIV services
  • Ask to implement the following.
    • Anti-stigma and anti-racism
    • Broader consumer input (not just CC)
    • Reinstate Consumer Advisory Boards (CABs)
      • Should include feedback mechanisms to improve services.
      • Focus on increased access and engagement.
      • Training to operate CABs should be provided.
      • Ensure CABs are fully integrated into agency governance processes.
      • Provide stipends for CAB participation.
      • Implement real time feedback on services.
      • Ensure feedback.
      • data is shared with consumers.
    • Address barriers to engagement in care
    • Improve referral tracking.
    • Train staff on best practices in supporting peer workers – improve TA to support peer integration and work.
    • Strong emphasis on leveraging peer work
    • Streamline EFA application and required documentation.
    • Ensure all programs are providing 2-trip MetroCard’s.

Follow-up Discussion

  • Important to examine how peers are reimbursed.
  • This is a concern that impacts HASA access as well.
  • When will the recipient respond – they have said in June. (recipient provided a written response since this meeting)
  • HRSA views CABs as an appropriate vehicle to collect consumer input but are not required.
  • Unclear still on ability of Council to mandate CABs
  • Providers may be threatened by CABs.
  • CABs are critical.
  • When mandate ended, CABs were severely lessened and weakened.
  • If we cannot mandate CABs, can we create a pot of money that incentives their use?

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

  1. Be honest and specific
  2. Focus on content rather than personalities
  3. State your views and allow others to state theirs
  4. Treat everyone with respect
  5. Wait to speak until recognized
  6. Try to identify practical solutions as well as problems
  7. 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
  8. Keep focused on the goal of the Planning Council: to provide the best possible services to consumers—and put aside personal agendas
  9. Disagree without being disagreeable
  10. Be prepared to report back the topics and outcomes of the meeting, but keep the confidentiality of individual speakers
  11. Keep an open mind—make a decision only after information has been presented and discussed
  12. If you are unsure about what someone said, respectfully ask them directly
  13. If you are upset, take some time to calm down before engaging in further public discussion
  14. 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).