Consumer Committee Minutes January 17, 2023


Minutes of the


Chair: Charmaine Graham, Marcelo Maia

Consumer-At-Large: David Martin

Tuesday, January 17, 2023, 2:00PM – 4:00PM

Watch a Recording of the Meeting Here



Asia Betancourt

Billy Fields

Charmaine Graham

David Martin 

John Schoepp 

José A. Colón-Berdecía

Lisa Best

Marcelo Maia

Natasha Martin 

Paul Carr

Raffi Babakhanian

Ralph Henderson

Rob Walker 

Steven Wilcox

Yves Gebhardt


Doienne Saab

Kimbirly Mack

Agenda Item 1: Welcome & Roll Call, Ice Breaker, Moment of Silence, Reminder to Review Rules for Respectful Engagement, Approval of the Minutes

Brief discussion on the Rules of Engagement and the need to develop a consistent policy that is also respectful of full agendas. Minutes were accepted. The moment of silence was conducted. Mr. Wilcox asked his attendance in December be checked.

Agenda Item 2: Benefits Navigation Review

  • Info did not go out on calendar, may be reason for low attendance.
    • Incredibly packed with information – quick and fast down and dirty
      • Governor addresses this in a speech, and also discussed the lack of mental health care providers
        • A discussion about the lack of providers and mental health services compared to demand ensued that highlighted long delays in getting intake appointments, limited availability of sessions, etc.
      • Unclear how consumers access this service at their agencies
      • Guidance on how to access this service would be helpful – i.e., take a friend, 
      • Important aspects to consider. How will benefits impact (or be impacted by)
        • Earnings from work
        • Year to year changes
        • Special needs, such as disability planning, etc.
        • Medicaid spenddowns
      • Case managers need to be experienced and knowledgeable
      • Important to consider shift to telehealth and making these services available online
      • This should be part of the aging directive
      • Service must happen on an individual basis to be optimally beneficial

Has anyone in the committee been navigated to these services?

  • Case managers do not know all the ins and outs of all of the benefits and entitlements that there are. Really need an expert on Medicaid, Medicare and ADAP
    • Medicare now has tremendous benefits. Flex cards, nutrition cards, utility payment cards over the counter. I just got a digital scale
      • Huge lack of data on who is accessing their benefits 
        • particularly data on persons who are trans 
        • a lot of data is collected from labs – very difficult to get providers to fully fill out the paperwork that goes to the labs 
        • would require is a change to the public health law
        • generally lack STI data because the info is not collected – it is not required by law
      • We need to make a strong request that service navigation be effectively implemented
      • Benefits training boot camp is needed
      • Tried to make this a part of the Aging Directive but recipient said it was unnecessary – clear need to revisit. 
      • Lack of places to get consistent and clear info on navigating services
      • Peer work earnings have some sort of loophole when being counted as income – clarification on this is needed.
      • HASA used to disregard stipends as income. Once stipends became taxable – began to be treated as income by HASA
      • If your income is even a $1 higher than the cut off for benefits, you will lose those benefits
      • Information gets really convoluted – clients are not getting accurate and clear info that is specific to them
      • Likely need to host another forum to understand how clients are impacted and if they are receiving these services (CHAIN request?)
  • 2023 Consumers Committee Planning Agenda
  • In response to the committee’s request for COVID updates – committee began organizing a town hall that will include 340b, long covid and relevant policy updatesResearch has shown that COVID reinfection can increase damage to the immune system340b is important, but do general consumers need to know about it?Do people need to know 340b details?Really important to discuss because it will be decided in April. PWH will be severely impactedTownhall flyer edited for clarity, and to include more welcoming languageDesign amended to reflect that 340b is a separate issue than COVIDPeople need to hear about long COVIDDrugstores have free high-quality masks to distribute but hide them behind the counter.Concept of herd immunity is a fiasco – getting COVID can have long term impacts, and does not prevent re-infectionKeep the focus on COVID – people are pretending the pandemic is overFor 340b, important to have action steps available Would like a better understanding on what the limitations on trans data are and why they existDirective developed to support people who identify as trans was recently funded – agencies are just coming out of the initial phase of setting up the program, and it is expected that data on those services will be available soonImportant to engage the communities that are meant to be served by Council policy directives Testimony of impacted populations is key to the work of the Council – and illustrates the importance of outreach Similar to need for benefits specialists who can bring their expertise together to support the individual and complex needs of PWHCOVID TownhallTownhall requires registration, and allows for people to submit questionFlyer modified to emphasize COVID while noting that other issues will be discussedLots of COVID fatigue to contend with – flyer updated to highlight that this info is newImportant to observe what is happening in other countries – such as Japan & China – a lot of people are dying around the worldImportant to streamline the flyer – and ensure that we stay focused on the evidence. Should not scaremonger with COVID info, but prepare people to use the best tools availableFlyer needs to help people understand they are centered in the conversationRemoved logoFee for service – has been put off, but will be implemented in April – impacts prescriptionsMelanie will develop a survey to help prioritize the issues the committee has identified to address during the planning sessionQuickly ran through additional topics for the planning session. The following items are potentially on the agendaInsurance Coverage IssuesDraft plan to address this issue was shared, including data requests, and a literature reviewTriCounty representationSpanish Speaker TestimonyReally hard for clients to access services – Graham spoke about working with a client and the barriers to accessing careHarm Reduction & Substance UseSecret Shopper Evaluations of the RWPA portfolio Use this framework to highlight how long accessing care takes, and the reams of documentation requiredOther IssuesSurvey will include other issues.Discussed how the culture of institutions act as barriers – unwelcoming, unkind, bureaucraticSecret shoppers will need to be protected – how will that happen to ensure their well being?
  • NY LINKS Conference 
  • The committee agreed to submit an abstract and formed a subcommittee to develop the presentation. Raffi, Rob, Billy Fields, Natasha and Charmaine will serve on the subcommittee
  • Lapel Pin Subcommittee

The Consumers Committee selected a design. Working on adjusting the design to ensure that it is suitable for wearing and will not catch on people’s clothes. Looking toward finalizing the design, completion of the MOU (has not come back from legal). Did a lot of work to move this forward – the students did this work on spec, rather than a competition. The committee expressed gratitude to David Martin for all of his work in producing a lapel pin. The subcommittee will pause regular meetings until further notice and pending certain processes.

Public Comment/Other Business

Mr. Maia: CABs in RW no longer have any power. Once CABs are no longer mandated – clients lose their voice – very important to reinstate this requirement in a way that ensures adherence to best practices. Mr. Martin concurred and expressed being dismayed that CABs are no longer required. From Mr. Babakhanian – For CABs to work, funded guidance is needed. Mr. Walker noted that taking a poll once a year is not a real replacement for the input of a CAB and agreed with re-implementing the mandate. CABs have been replaced across the board.


  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).