Eldercare Voices, COVID Edition: Rhode Island Organizing Project

Eldercare Voices is an occasional feature of the Center’s monthly newsletter, Health Innovation Highlights, inviting guest commentators directly involved in care delivery or support to older adults to share their perspectives from the field. This post is part of a special series of interviews on their experiences with older adults during the pandemic.

Interview with Ray Gagne, Executive Director and Marjorie Waters, Community Organizer, Rhode Island Organizing Project

The Rhode Island Organizing Project (RIOP) has been engaged in community organizing since 1993. Its current priorities include improving access to health care for people enrolled in Medicaid and Medicare, long-term services and supports, and transportation for low-income elders and disabled adults. Ray Gagne is executive director of RIOP and Marjorie Waters is a longtime community organizer with the organization.

Center: What are you learning from older adults right now? What do they need?

Marjorie: What I’m learning is that for older adults of color in particular there is a fear of COVID-19 and fear of hospitalization is an extremely scary prospect for them. They just don’t feel safe right now, and that even extends to questions about the vaccine. One question that I was asked by an older adult of color about the vaccine is if it was tested on older people of color, both male and female. I would say that what they need right now the most is some solid guidance and information, which they’re getting from the state, I think, but nationally the messages have been politicized. Seniors need to have confidence in our health care system right now.

Ray: The only thing that I would add, is I think the people who work with us are a little bit more engaged, but when they talk about the people that they work with, social isolation is probably the biggest thing. People haven’t left their apartments for eight months and that’s having all kinds of negative effects on both their mental and physical health. People aren’t exercising. Those are big issues. I read the interview blog post with Sherman Pines. I mean, that’s just a sad indictment of our society, that Sherman shared that older adults of color feel like people are afraid they’re going to catch COVID-19 from them. That’s just not right to have all these things that you’ve got to worry about and then worry that other people are looking down on you when you go into a public space. That’s just terrible.

Center: What are the strategies you’re using to engage older adults during the pandemic?

Ray: Generally, we’ve always been a pretty face-to-face culture, so like everybody else, we had to switch to more phone calling, and to a lesser extent, Google Meet or Zoom. We have two weekly calls that people can call in to and discuss what’s going on in their lives and we can then give them updates on RIOP’s work. Then we have another half-dozen institutions that we work with that have done their own meetings, either ongoing or occasional, so they function like our traditional in-person house meetings where we ask people to share the issues they’re concerned about, how things are going in their lives, and then try to give them actions they can take. It took us a while to figure out how to do it, but I think that we have it down. We also have spent a lot of time calling people one-on-one, checking in, seeing how they’re doing.

Marjorie: Our community calls have become a resource for people on COVID-19. I only share information that’s from the Rhode Island Department of Health or the CDC. It’s plain English. Although I have been very careful not to frighten people, I certainly have stressed the severity of what’s going on. It’s been a long haul. Nobody ever expected that nearly nine months later we’d all still be sheltering in place for all intents and purposes, but here we are.

Center: There are leaders that you developed through the Lift Up Your Voice! training last year. Can you talk about how those leaders are now being engaged in your work?

Ray: I think the Lift Up Your Voice! training taught the difference between a systemic issue and an individual issue. Many of them are involved in the Implementation Council for the Rhode Island Integrated Care Initiative, our state’s dual eligible demonstration, and they have become much more effective advocates in those meetings. They learned to go out and talk to their community and bring issues back to the council. I also think the trainings gave them the confidence to ask questions and keep asking them forecfully. They’re also constant ambassadors out in the community. A lot of them help Marjorie and me to organize meetings. They have been able to get new people to join house meetings or connect them to us to speak on issues like transportation. Several people who did the training are part of a mental health coalition and facilitate a monthly virtual house meeting with us. And then in their own volunteering with RIOP, I think it’s just given them the confidence to continue to participate on issues like transportation or expanding home care or improving nursing home care.

Marjorie: I think the really important thing that Ray touched upon is, our leaders are much more comfortable going into their communities, although it has to be very limited, to be honest. But they are asking questions of their neighbors and bringing other people’s stories to the table. I think there has been a really important shift from when we first started out, where people were much more focused on their own issues, to now recognizing community-wide issues. As a result, an important issue that is surfacing is that people are struggling to get at-home care right now. It has become a really big issue, especially for the older adults who do not have family nearby or the technology to participate in virtual social events or fully in a telemedicine appointment          

Center: Can you talk about new relationships you’ve built with other organizations?

Ray: We work closely with the SEIU on improving nursing home care and on expanding home care opportunities. We work with our state’s large independent Living Center. We’ve worked closely with them on transportation and on improving home care access. We work closely with the Senior Agenda Coalition on expanding programs for moderate-income elders. We work closely with a mental health group on health care and transportation issues. Also, we work with about half a dozen congregations. We’re always expanding relationships, always looking for new groups to work with and I expect that to continue. And then, Marjorie works with an extensive array of subsidized housing groups, largely made up of Medicaid beneficiaries, through the resident service coordinators in their facilities. That is a critical group that we work with.

Marjorie: One of the things that’s come up, is that, for the most part our folks are fairly housing-secure. But of course, they know people who are not in that position, so there’s a lot of anxiety in the community about the moratorium on evictions ending, and how that could affect family and friends. There is interest in taking action on how we can help save people from losing their homes.

Ray: We also work with two homeless groups. The church where our office is located has a large homeless ministry, and then we work with a group who are mostly formerly homeless folks, and the health care impacts of not having a home are pretty dire.

Marjorie: And also the fear is, once again, that  African Americans and other people of color, are disproportionately impacted by COVID-19 and by things like homelessness, food insecurity, lack of health care, because they’re usually the ones who, if they are working, are lower paid, and can’t afford a hit on their income. The issues loom large and not just for the people we directly have contact. Our leaders are bringing these issues to us based on what they’re hearing in their communities.

Center: Based on the work that you are doing in the community; how does that connect with your policy agenda?

Marjorie: There are several issues we’re planning to bring to the forefront with the state, such as issues related to our independent provider program and the lack of visibility of that program at a time when people need it the most.

Ray: For probably eight years running that’s been the major issue, lack of access to home care and I think a lot of it now, with COVID-19, it’s exacerbated, but I think a lot of it’s due to low wage rates. So, I think that will continue, to push for the state to have more resources devoted to in-home care as opposed to institutional care, because that’s what people want, and our current governor, she has something called the Resiliency Plan, and she recognizes that. She recognizes that too much emphasis has been placed on institutional care and she wants to put more resources into community care. But as Marjorie said, the bureaucratic structures, they’re not as fluid as they should

And then social determinants of health affect everything. I mean, people’s health care, even home care, right? If you don’t have access to proper transportation or you don’t have access to decent housing, you don’t have access to food, you’re going to get sick and then you’re going to need long-term care. All of these things are connected. In our outreach, we hear this stuff and we see the interconnections because people, they don’t break them down into little silos. They see them as all as connected

Marjorie: I’d like to add, I wish there was more out-of-the-box thinking on ways to prevent people of color from going into rehab and nursing homes. They’re the highest risk group and they often have more co-morbidities. I would like to see more emphasis on prioritizing at-risk people of color  and doing some triage to ensure that if they can possibly keep that person in their home during their rehabilitation period, that’s the safest thing right now for them to do.

Center: Do you have any final reflections you would like to share?

Ray: It’s really striking how resilient the elders are. They’re all taking action despite being stuck in their apartments. They’re all working to make life better for other people right now. They’re all trying to help other people, either help people get food, help people have access to health care, connecting them to the right organizations. It’s really kind of remarkable and inspiring; people just trying to help others.

Marjorie: Yes, I agree with Ray. What we do on the calls is not only organizing, but also exchange of ideas and things that work for them, “Here’s what we did in my community to address this issue.” I think there’s a wonderful exchange of ideas that’s going on in these calls right now, with people who have never previously met each other in-person They’ve built this bond and that fuels their resiliency.