PCC launched a CoAct in June to explore the roles of stigma, access barriers, and other structural factors that limit outcomes for individuals with intellectual and developmental disabilities (IDD) and to find ways to overcome them. CoAct is PCC’s proprietary process for convening subject matter experts to work through facilitated discussions to address complex public health needs.
The first in a four-session CoAct was held at Easterseals DC VA MD on June 22 with 20 participants. The group discussed the challenges individuals with IDD have in receiving quality care. The participants identified the top four challenges that need to be addressed:

1. Rapid growth in the number of IDD individuals who are at risk is climbing, and our community is not prepared to assist them. This can be partially attributed to the inability of some family caregivers to continue to care for IDD individuals as they age.
2. There is a lack of coordinated health services, specifically regarding mental health treatment and IDD service systems. This creates friction in the system and results in inadequate treatment for those who need it. This is compounded by a lack of health literacy materials and age-appropriate screenings for patients with IDD.
3. Individuals are falling through the cracks. A support mechanism for individuals with IDD is needed when transitioning from the school system to adulthood. The current process suffers from too few trained direct support professionals and needs more navigation support.
4. There aren’t enough health professionals who know and understand the need of neuro-diverse populations. Even if all the systems are in place to better treat individuals with IDD, not enough healthcare workers are adequately trained to deliver the services.

The CoAct group will meet again in August to refine these issues, and additional sessions will focus on developing recommendations that can improve outcomes for IDD individuals. Stay tuned for updates.

Stephanie Narayanan, Director of Development and External Relations, PCC

If you, like me, contributed to the more than 1.25 billion viewership hours of the Netflix series Bridgerton, you’re familiar with the coupling process for a small subset of English people in the 1800s. Glittering chandeliers and dreamy dresses meet the very real anxieties involved in attracting a match both socially advantageous and personally attractive.  

But did you know it’s also a teachable moment? 

A July 2022 episode of the Freakonomics podcast introduced economist Marc Goñi’s research on “assortive matching” and income inequality within that Bridgerton context.  In the traditional exercise, as Bridgerton portrays and Goñi describes it, the wealthiest families flocked to London seasonally to mix and mingle and marry off their eligible daughters to fellow members of the aristocracy. The marriage market helped individual families further improve their fortunes. It also helped the queen (Victoria, in Goni’s research) strengthen her political power by gatekeeping access to the process.  

But a funny thing happened in 1861, Goñi explained. Within the space of a year, Queen Victoria lost both her mother and her beloved husband. She withdrew from any real involvement in the social season during her three-year period of mourning. That withdrawal virtually shut down the traditional marriage market and, according to Goñi‘s research,  temporarily upended the rigid class balance. During “the interruption,” marriageable aristocratic women tended to find partners within their home regions, and those partnerships were less socially and economically advantageous than the average partnership during previous London seasons.  

All well and good, you say, but so what? Goñi suggests the liberalization of marriage patterns had knock-on political impacts, like helping expand public education in the 1870s. How? By breaking up the traditional power-building process, which Goñi says the aristocracy had used “to consolidate as an elite.”   

Imagine the college search process as that London marriage market. The children of the elite apply to different acceptable schools hoping to find one that fits their own personal and career goals while meeting the expectations of their parents and communities. Of course, unlike the marriage mart, this process is technically open to anyone who can pay the application fees. In practice, though, access varies tremendously based on an individual student’s background of race, ethnicity, income, class, educational preparation, and more. There are all sorts of external indicators over which individual students have almost no control that determine the fullness of their social calendars and the perceived quality of their academic suitors.  

Now imagine affirmative action as the mourning period disruption to business as usual. It doesn’t fundamentally eliminate the college mart but alters the match process enough to have a visible impact. It means the makeup of the “elite” schools is less predictable, and so are the connected power structures.  It means social strata shift in noticeable ways, even if they’re slow. It can even mean the people weighing choices that impact millions of lives represent more of them. 

But it’s not just about the policy impacts—important as those are. It’s also about the ways access to training changes the demographics of people providing vital services, including health care.  
We’ve talked before about the Primary Care Coalition’s work with partners like the Nexus Montgomery Regional Partnership, Montgomery College, and the American Muslim Senior Society to build a more diverse healthcare workforce. These training pipelines have genuine game-changing potential for both the individuals who participate and the ability of our healthcare system to provide care that fits our diverse population. But the realities of demonstrating return on investment mean we have to start with entry-level training. We are not training doctors or physician assistants or advanced practice nurses. At least, not yet. But our community needs people in those roles who represent our full diversity, and we need them now. building-and-sustaining-a-diverse-workforce.html

An analysis of in-hospital mortality among uninsured patients in Florida found a 13% decrease in the likelihood of death among patients whose race matched their providers’. The authors suggest—based on their own analyses and on existing literature —that race matching impacts communication. Citing one study that analyzed the relationship between patient-provider race matching and the depth of lung cancer information patients received, they noted patient participation was the element that varied by race matching. In other words—and not so surprisingly—shared identities can change the conversation. Literally, and in potentially life-saving ways.  

For some patients, the existence of minority doctors increases their chances of receiving care at all. A 2022 study among family physicians supported existing literature on physician race/ethnicity: “family physicians who identify as underrepresented minority groups were more likely to care for patients from vulnerable populations.”  

I can’t weigh in on the full legal or educational policy ramifications of the recent Supreme Court ruling on affirmative action with any real authority—being neither a legal nor educational policy expert. I don’t even play one on TV. What I can speak to are the partners PCC works with who provide essential safety net healthcare to our neighbors every day. For many, their backgrounds make them more able to provide culturally and linguistically appropriate care. What will it cost our communities if the diversity of our provider pipeline shrinks?  

As a society, we have plenty of (health) equity work ahead of us, and this decision has cost us an important tool.  

The Primary Care Coalition’s new Chief Operating Officer, Hillery Tsumba, already has a decade of experience with the organization that includes a clear focus on its internal and external impacts. She initially came to PCC as the communications and development manager and was most recently the director of organizational strategy.
 
“It’s been a wonderful evolution of being able to do many different things,” said Tsumba in a recent conversation about transitioning to the new position.

“My previous role was focused externally, and my new one involves human resources and financial management. I am excited about finding new ways to release the passion of our talent so that we can unleash the full potential of the Primary Care Coalition.”
 
Tsumba first worked under the leadership of Steve Galen and now works under current President and CEO Leslie Graham. Both are influential leaders with very different styles. Galen was a very conceptual leader focused on ideas about what might be possible, and Graham has a more process-oriented approach emphasizing how to turn ideas into reality. Hillery Tsumba is grateful to have learned much from each of them.
 
When asked if her reputation for always treating others with respect comes from her cultural roots in Zimbabwe, Tsumba concedes that the formal culture in her home country likely played a role. But she credits her parents for always being clear about respecting everyone.
 
“My Dad always said to take the time to appreciate the people helping you, and that made an impression,” said Tsumba. She grew up in a middle-class area of Harare, the capital city of Zimbabwe. “In the post-colonial era, we were all very aware of the advantages we had in life. I believe that is why I’ve been drawn to mission-driven work. It is important to help those who don’t have the same advantages in life.”  
 
Although she anticipates difficult discussions and growing pains, Hillery Tsumba sees an exciting future for the Primary Care Coalition. “We are at an interesting inflection point where PCC has to continue to excel at what we do well and make changes that will move us to the next level. It will take some work to improve the care and feeding of our internal processes so that we can let go of old habits that no longer serve us well and enhance the habits that stand the test of time. Although we cannot meet all the needs in the community because no single organization can, we can nurture our coalition and bring together a group of organizations to meet those needs better. That is what we do best.”
 
She points out that everyone is still trying to understand how the world shifted during the pandemic.
 
 “We need to make sure we are as effective as possible in serving the needs of the collaboration,” said Tsumba. “When resources are constrained, people tend to consolidate power and meet fewer needs. But that is when it is more important than ever to give up power for a shared goal and try to go further by stretching resources to do more.”
 
“Organizations that do good in the world need to be healthy,” said Tsumba. “Mission-driven organizations can’t be expected to continue to do more with less. At some point, that becomes a death sentence. So, to continue to do impactful things means our work will have to include a lot of seemingly boring stuff as we find ways to pool resources to do even more.”
 
Hillery Tsumba officially became PCC’s Chief Operating Officer on April 3, 2023.