The Blog to Transform Advanced Care
Advancing Care through Innovation, Observation and Collaboration.
Supporting trusted community leaders to address disparities in serious illness care
By: Tracy E. Hopkins
Michelle Cox lives in an impoverished but proud community in Louisville, Kentucky. The 41-year-old call center worker is the primary caretaker for her 67-year-old mother who was a custodian at the University of Louisville for 30 years. Cox’s mother Cheryl suffers from type 2 diabetes and hypertension, and sometimes it’s difficult to make ends meet and maintain a work-life balance.
“We’ve had some hard times where she has overslept and not taken her insulin shots. I work third shift hours, so it’s a struggle to balance it all out sometimes,” says Cox.
“But we look out for each other and do everything together — we go to the doctor, we shop, we worship, we cry, we laugh, and we live together. And I just wouldn’t have it any other way.”
The Coalition to Transform Advanced Care (C-TAC) launched the Louisville Pilot Project in August 2020 to support people, like Cox and her mother, who live in Louisville’s 40203 area code where the average annual income is $12,880 for an individual and $26,500 for a family of four. The goal of the four-month program, which ran until December 2020, was to improve the quality of life for community members dealing with serious illness by providing access to care, changing the care model, and investing in trusted partners, such as faith leader driven coalitions, to address disparities in access to care.
A native of Louisville, Elder Angela Overton, Senior Advisor for C-TAC’s Interfaith Workgroup, spearheaded the Louisville Pilot Project with a small task force, which included two faith leaders already invested in their communities — Reverend Adrian Baker of Christ Way Baptist Church and Pastor Alma Wooley of Christ Cathedral of Praise.
“Historically the Black Church has always been present. Black churches have been and continue to be a way of escape and to support physical and spiritual nourishment,” Elder Overton explains.
“Our faith leaders, and in the case of the Louisville Project, Black faith leaders of worship spaces in one of the poorest zip codes who were in the thick of it, was a pronounced beginning to serve individuals who were without.”
When the pandemic hit and churches closed their doors physically in spring 2020, Elder Overton reevaluated, “How is the quality of life of people living in poverty going to be [impacted] at this moment?”
Motivated by the health disparities and discrimination that Black Americans routinely face but were spotlighted during the COVID-19 pandemic, Elder Overton put together a proposal that specifically addressed how this community is underserved.
“Policy and advocacy is always at the forefront of C-TAC. Policy change is a must. We push and support legislative and regulatory strategies on both the federal and state level to change how we fund and deliver care to reduce disparities for those seriously ill,” she says.
Each One, Teach One
Pastor Alma Wooley of Christ Cathedral of Praise church, volunteers with AARP Kentucky and joined forces with C-TAC after a faith initiatives committee meeting with Elder Overton and Tihisha Rawlins, Associate State Director of Grassroots Initiatives for AARP in the Louisville Metropolitan Area.
“From that meeting came this wonderful development, this friendship and fellowship between AARP and C-TAC, and also between myself and Elder Overton,” Pastor Wooley explains.
“We both had the same goals in mind, which was to help people in our community. Of course, with AARP, we look at it as the 50 and older group. But with C-TAC, it was those with an advanced care issue. And both of them were very important to me.”
Christ Cathedral of Praise has a close-knit congregation of 75 members, mostly from six families. Forty percent of the congregation is living with serious illness, defined by C-TAC as an illness where there is no cure and a mortality rate of five years or less. Members of the church also experience socio-economic concerns affecting quality of life, lack of local pharmacies and food and transportation insecurity.
At the onset of the pilot project, C-TAC did a needs assessment which determined that the faith leaders of the participating churches could benefit from training to support community advance care planning; grief and trauma support; caregiver support; and basic health needs.
“In any Black Church, no matter what the denomination is, we always have members that fall within particular areas when it comes to medical needs,” says Pastor Wooley.
“I looked at people within my congregation with diabetes and hypertension, people who were dealing with cancer or who had cancer previously. These types of things are very prevalent within our congregants. So, it wasn’t hard to get my people involved because they were already dealing with the issue.”
To spread the word about the AARP-sponsored Food & Essentials Drives (September and October), parishioners put up signs around the neighborhood and younger congregants posted on social media. Christ Cathedral of Praise continues to gather and distribute food and essentials, even after the pilot project ended in December.
“It was open to everybody. It didn’t matter if they were homeless, whether they were low-income families. Even middle-income families have needs and issues. People would drop by and pick up the things they needed,” Pastor Wooley says.
During the Louisville Pilot Project, C-TAC created a strategic plan with the participating faith leaders to address the lack of access to resources in the community. The pastors were given a stipend, and they were introduced to community-based organizations and providers that would be a resource for housing, food, and transportation needs. An advanced care planning session was also provided.
Cox is both a congregant and a minister at Christ Cathedral of Praise, and she says C-TAC gave her the tools to draft a living will for her mom free of cost, and has encouraged her to secure life insurance and health insurance.
“There’s so much more that I can do to prepare, not just for my mom, but for my brothers, for my nieces and nephew, so that things will be settled so that no one will be in any need,” says Cox.
Support During a Time of Sorrow
Six months before the Louisville Pilot Project launched, Breonna Taylor, a 26-year-old Black woman, and emergency healthcare worker was killed by Louisville police officers, during a raid of her apartment. The tragic story made national headlines and sparked protests in Louisville and across the country. In September, when no official charges were filed against the police officers, Elder Overton recalls the community was saddened but not surprised.
“The sentiment was that this is not the first occurrence of a wrongful death via those who swore under oath to protect and serve,” she says. “Yet, [our pastors] are holding on to their faith.”
In addition to police brutality, residents of the 40203 community are equally concerned about crime within their community.
“I would surmise that both faith leaders and congregants will suggest that poverty, systemic racism, and an unclear way out of their normal has added to crime in their neighborhoods and is a major concern,” offers Elder Overton.
Pastor Wooley says that C-TAC’s grief counseling support training has been an invaluable tool, particularly during the COVID-19 health crisis.
“My church family, along with my personal family, means so much to me. And from the moment that we partnered with [C-TAC], we lost so many people within the community, even within our congregations,” says Pastor Wooley.
“Through C-TAC and the ministry they provided for us, we talked about what to say and what not to say during that time of grieving. We have all been affected during this time. So we’re in this together, and knowing there are other people who are in it with you makes it a little easier.”
A More Equitable Future for Serious Illness Care
Based on the success of the Louisville Pilot Project, plans are underway to do similar work in other Louisville communities.
“Now we’re going within other zip codes within Louisville, Kentucky, because the people are out there. People are dealing with food insecurity. They’re dealing with just making it from day to day [without] the essentials. So, we’re just getting the word out that they can do it, too. Because we can do more when we come together,” says Pastor Wooley, who has shared the needs assessment guidelines with her sister churches and fellow pastors.
For phase two of the project, C-TAC and AARP Kentucky have targeted faith leaders from 125 places of worship. The organization leads are meeting with potential funders and inviting healthcare providers. Kentucky legislators and community organizations are already working for change to create a strategic plan with a clear mission.
Elder Overton acknowledges the program can also be replicated in rural areas with predominantly white populations and in indigenous communities.
“We’re looking to share all sorts of models with our members across the country to inspire others to consider similar programs that meet the needs of their community, particularly for those who have been marginalized and disenfranchised.”
There are, however, systemic issues that only a change in policy can solve.
“We can put a Band-Aid over it. We can give you some food; we can connect you with the representative of Meals on Wheels. We [can partner] with organizations like Uber that can do some arranged transportation. But you still have individuals living with $12,880 annual income,” concedes Elder Overton.
“It’s daunting, but C-TAC is committed to moving health policy so that trusted partners in the community can better support their seriously ill constituents, which requires partnerships with healthcare, funding streams, and more. This is happening across the country and C-TAC is here to amplify what’s working. This is not a moment, it’s a movement.”