Consumers Committee Minutes, August 2, 2021



Tuesday, August 2, 2021, 1 – 3:00PM

By Zoom Video Conference


Committee Members Present: Lisa Best (Co-chair), Randall Bruce (Co-chair) , Paul Carr, Billy Fields, Lawrence Francis, Yves Gephardt, Charmaine Graham, Graham Harriman, David Martin (Consumer-at-Large), Michael Rifkin, Leo Ruiz, John Schoepp

DOHMH: Cristina Rodriguez-Hart,David Klotz,Melanie Lawrence,Guadalupe Dominguez-Plummer

Agenda Item #1: Welcome/Introductions

The meeting opened with introductions. The draft minutes of the July meeting were not discussed.    

Agenda Item #2: Public Comment

Lisa: Need to discuss interim co-chair before the next Consumer Committee (CC) meeting.

Graham: Discussions on this have begun. Will notify consumers of decision soon.

Leo: Need more clarity on role of consumer at large. 

Paul: Back when he was consumer at large they settled that this position steps in if the chair is not present at a meeting.

Lisa: All CC meetings need to have a pre-call to set the agenda.

Billy: We settled roles and responsibilities of each PC member last year through the Rules and Membership Committee. They could do a refresher for everyone if needed.

Leo: Responsibilities could be reiterated at the beginning of each PC year. Would also want to know about agenda setting.

Agenda Item #3: Debriefing for Framing Directive (FD) vote at last PC meeting

Melanie: Wants to check in with everyone about why FD did not pass at full council meeting.

David: He had worked on the 2016 master directive. When Eunice said it looked like a stigma and equity directive he went back to look at the FD. They didn’t talk about the FD itself; they were just shown a presentation of it. Doesn’t want the master directive language eliminated, but he also didn’t read the FD in full. It was a lot and he felt overwhelmed. Felt it wasn’t fair.

Melanie: She has now suggested that the FD needs a road show because it is such an extensive document. The 2016 master directive was foundational to the current FD. Implementation science was used to make the directive as specific and measurable as possible. They wanted to show how each part is connected and leads to the next part. 

Paul: He likes the FD but felt that a lot of it focused on stigma, and on people with jobs rather than talking about stipends. Seemed like it was talking about defining roles/jobs.

Charmaine: She voted no. The areas that were highlighted needed to be strengthened, but she didn’t realize that we wouldn’t vote on it again until November. Had she realized this she would have voted yes.

Lisa: All the changes related to equity, stigma, disparities coming down are more than fiscal. 

Billy: They had too many unanswered questions to vote on it. 

David: Need to point out that the FD includes the former master directive.

Cristina: We can highlight pay equity strategy includes PWH and we need to give full council more time to read the FD in advance of a vote.

Agenda Item #4: Aging Directive (AD) discussion

David: Didn’t see personal experiences of CC reflected in the existing aging directive (AD). So he sent more of the personal experience reflection to be added towards the beginning as “barriers.”

Lisa: We need to be in agreement about what stigma is and is not and what we want to see changed in services. 

Graham: Graham gave a brief orientation to the revised document to everyone.

Lisa: Benefits navigators need to be certified for this role. Need a case manager that explains the clog in the wheel. There needs to be a different discussion in Tri-County. Staff of HIV organizations in Tri-County need to voice their experiences because things operate differently there. 

Graham: He had added “certified” before benefits navigator and added language for Tri-County.

David: In the lived experience section they could reflect Tri-County issues. 

Lisa: Medicaid doesn’t pay timely; she has a spend down as part of Medicaid, and therefore she doesn’t get case management because of the type of insurance she has. It leaves PWH vulnerable. There is no person to call/contact regarding spend downs so you don’t understand payments.

David: We need staff who are culturally the same as clients.

Graham: David can you explain number 5 of the new barriers?

David: Our responses need to be more agile. We need to adapt and notice what’s happening incrementally and be able to adapt to that during the process rather than at the end.

Graham: Sounds like person-centered care.

Cristina: Do some of these added barriers belong in the framing directive because they apply to the whole portfolio? It is a good point that the lived experience of PWH may not be addressed enough within the existing determinants because we tend to cite everything and that’s based on what’s published.

David: Do we need to point these things out more because they keep happening?

Graham: A number of these things seem to be better for the FD.

Melanie: We are working towards stigma-free, equitable services, but not sure how to do this yet. In terms of overlap, she is happy to look at where these fit into the FD.

Randall: One of the reasons the FD didn’t pass is because it’s so long. If we add this content there it will be longer. We should leave this content here.

Melanie: We need to get a better understanding of the already existing trainings for HIV staff. Some might already be covered and cost is a concern to some people.

Randall: We need to understand better what the Recipient requires and measures. Sometimes the Recipient says they can’t tell us certain things. 

Graham: Let’s just keep this content here then.

Billy: Why don’t we have content that applies across all the directives so we don’t need to keep repeating them?

Graham: That’s the purpose of the FD.

Billy: What is the difference between the AD and the FD?

Graham: AD is specific to certain services and PWH who are aging. The FD applies to everyone in Ryan White.

Billy: Put it in the FD then because then it will apply to everyone.

John: Why not put it in both directives?

David: Yes let’s put it in both. It could be briefer in the FD.

Randall: Have Melanie reference this AD in the FD. 

Melanie: Let’s collaborate on presenting the directives to the council in the fall because we’re new to implementation science. 

Graham: Now moving onto the Determinants section and it’s been made more brief and some things are moved around to be put into different subsections. David M. pointed out it should be HPV instead of HBV. 

Paul: Is there anything in the AD to prevent wasting, such as exercising and strengthening your muscles. Need more than going to the gym because you need to know what to do there. 

David: Do we have walking in here?

Graham: Yes there is exercise in a later section.

Melanie: Need education for advance directives.

Charmaine: Can we add suicide assessment next to mental health for resource map?

David: Isn’t that already part of mental health assessments?

Charmaine: A lot of providers are not actually doing it. 

Paul: We need to talk about mental health more broadly than mental illness. Look at the example of Simone Biles. 

Melanie: We should cite a source that we respect that defines mental health more broadly as we are discussing.

Graham: He will find a reference for this.

Billy: Do we have anything to educate consumers on insurance plans? 

David: This is addressed in part by the new content he added for barriers.

Billy: A lot of PWH don’t know how to navigate these plans.

Graham: Graham added content regarding insurance plans.

Lawrence: is the term mental health illness stigmatizing?

Paul: We need to talk about mental health as part of our overall health, just like physical health.

Graham: Do we need a training and a learning collaborative? I would select the former. There are just small edits to mechanisms and outcomes. 

David K: Why not have the first hour of the 8/17 abstracts meeting be the full CC to vote on this directive and then whoever wants to stay for the abstract discussion can?

Consumers agreed to the 8/17 call and the call ended.