Since partnering with the Voices for Better Health project in 2014, I have spoken to nearly 500 older adults and people with disabilities. The stories I have heard are compelling, often heartbreaking, accounts of people struggling to stay healthy and in their community. It is these stories that we are working to bring to policymakers to make fundamental changes to Rhode Island’s health care system, especially for the most frail and vulnerable populations who are often overlooked and underrepresented in the health care debate. With the recent announcement of the Memorandum of Understanding between the federal Centers for Medicare and Medicaid Services and Rhode Island’s Medicaid program to begin a demonstration project to coordinate care for beneficiaries with both Medicaid and Medicare, there is change ahead.  The stories below share some of the challenges that need to be addressed.

Stories from the Field

The most pervasive and profound stories I hear relate to isolation, the lack of family support, and loneliness. Today’s families are often fragmented and far-flung, making it impossible for many older adults and people with disabilities to depend on relatives for support. This is why the health care system and community-based services network is so vitally needed to work in a coordinated way to provide support services.

Mary is 90 years old and owns a small duplex in need of repair. I met her through a Meals on Wheels (MOW) outreach campaign. She is bright and talkative. She was overjoyed when I came to her home to chat. Mary hadn’t spoken to another human being in over two weeks; that’s when her “friend” and caretaker left for vacation, canceling Mary’s MOW delivery service during her absence. Someone was supposed to come and help her with her daily activities, but never showed up, leaving Mary to fend for herself. Mary’s limited mobility makes it impossible for her to take public transportation. She desperately needs dependable social services, but she’s afraid she will lose her house if she applies. Mary lives on less than $750.00 a month, however, she receives no Medicaid, LTSS nor is she on the SNAP program. Meals on Wheels is the only program she participates in. Mary admitted that the food is just okay, it’s the daily interaction with the volunteers that Mary craves and is her saving grace.

Many other older adults I have met with are similarly struggling to cope with loneliness, isolation and lack of a support system. They live in private single or multi-family housing, have no means of transportation or family support. Many live with undiagnosed mental illness or dementia. They rarely get out, don’t belong to any civic group, organization, church or senior center, and as a result, many crave human interaction. The real challenge has been how to make an initial contact with more people like Mary. Many seniors live in private housing where their isolation may go totally unnoticed until a tragedy occurs. Reaching this population would give us a more complete understanding of the most fundamental needs of those aging in the community.

Discharge plans are another area where poor, often isolated, older adults all too easily fall through the cracks.

Amanda is recovering from an unusual mid-brain stroke. She spent more than week in the hospital and then several more in rehab. Although she was told she would be receiving at-home care, it never materialized. It took countless calls for Amanda to obtain durable medical supplies such as a bath seat, grab bars and a walker that were essential for her to live safely at home. By the time she was contacted regarding Home Based Health Care after nearly four months, she was well on her way to recovery. Discharge planning requires good communication between the patient, a family caregiver or friend, if available, and all health care providers involved to ensure the best possible outcomes for the patient.

Relationship-based Organizing as an Effective Tool in Health System Transformation

So why is reaching isolated consumers so important in transforming our health care system?  What are effective ways to do this kind of outreach? Here are strategies I’ve used in my work:

  • Relationship-based Organizing is an approach that starts by building connections between individual members of a community or interest group, such as a church congregation, senior centers and residences. Its initial building blocks are house meetings. These are purposeful public sessions where participants share their stories of important events in their lives. This is the first step in building trust and deeper relationships around common values. The second step after a series of house meetings is a research phase, which turns broad, often-voiced concerns into specific, immediate and winnable issues and develops proposals to address those issues.
  • The final step is to organize public action meetings with turnout of consumers and allies, where decision-makers are asked to give a public response to our proposals.

Organizing is distinct from advocacy in that you are teaching the community how to effectively come together to advocate for itself to change social policy. For poor and minority seniors, providing avenues for participation and ways to gain a “seat at the table” with those who have the authority to make change can be a new and empowering experience. Small victories build the community’s confidence that they indeed have power and encourage them to take on bigger challenges.

The Rhode Island Organizing Project (RIOP) is a community organization dedicated to promoting justice and the common good. RIOP’s organizing strategy places a premium on community outreach, participation and empowerment, leadership development, and grassroots organizing. RIOP’s most significant achievements include expanding state funding for affordable housing and leading an effort to redevelop one of Rhode Island’s poorest neighborhoods. RIOP began working on elder issues in 2009 and began conducting house meetings, listening to low-income seniors talk about their health care experiences and desire to age in place.

Marjorie L. Waters
Community Organizer
Rhode Island Organizing Project