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Opinion: If you’re going to put us on your focus group, maybe you should put us on your payroll

Lived experience is some of the best expertise you can hire

Nearly five years ago, I sat in the Aurora Public Library with other parents who received both Medicaid and benefits from the Special Supplemental Nutrition Program for Women, Infants, and Children, commonly known as WIC. We carried our infants or newborns, spread out with our strollers and diaper bags, all consenting to receive a $25 stipend to provide feedback for 1 ½ hours about our experience receiving Medicaid and WIC.

Kayla Frawley

Our feedback was the highest value input that these large safety net programs or agencies could obtain. Feedback ranged from “I can’t buy fresh produce that is culturally relevant” to “you can’t buy diapers with WIC, that is a huge cost that we need help with.” I remember piping up with “Medicaid doesn’t cover childbirth education or primary dental care, that is an issue.” Maternal dental care wasn’t included in Medicaid or Child Health Plus in Colorado until 2019 — three years after my pregnancy.

Our insight, ideas for improvement, and feedback seemed vital to ensure the success of these programs, and to make them better for our community. It was worth much more than $25. I couldn’t help but think at the time: Why not just hire us to support program development and quality improvement?

If lived experience is what is valued, more leadership positions within agencies and organizations should be opened for community members. Hiring processes should identify lived experience as a vital requirement to employment.

There are many reasons why organizations and agencies are resistant to fully integrating community experience into their organization in this way.

To obtain our feedback from lived experience to achieve quality program improvement, it’s easier to ask us moms for input in a short session, like the one I attended five years ago, than it is to employ us. However, if lived experience is not integrated into the foundation of the organization or agency but instead is brought in intermittently, there can be challenges to integrating community input and building community trust. Toxic environments can too easily spread among community members when these common challenges are not remedied.

The distance between “us” (providing input as recipients of a program) and “them” (representatives of the program) can create a certain power dynamic that categorizes people according to perceived socio-economic status. This kind of othering sets the stage for unconscious discrimination by reducing empathy and partially preventing authentic and genuine dialogue. At a minimum, this dichotomy produces hostilities among groups and can create an unsafe environment for folks who are not a part of the dominant culture.

Tokenism can perpetuate this dynamic. Recruiting a small number of people from underrepresented groups to achieve the appearance of diverse voices from various racial, ethnic, socio-economic, or gender identities can be more damaging than taking the time to embrace partnership with the community. If an organization’s actions are more closely tied to superficial tokenism, it’s likely that community stakeholders are not offered a meaningful  opportunity to influence key decision-making.

There will always be inherent resistance to change and protectors of the status quo, but to build transformational partnerships that are equipped to address social-justice issues, organizations and agencies need to constantly challenge the way things historically have been done.

A growing number of advisory councils and committees are including lived experience as a consultative soundboard to evaluate an agency’s services and impact. Still, an advisory committee is not a pathway to a career for those who bring that lived experience. Instead, they keep community members separated, not integrated into agencies. Advisory boards have become a constructive way for agencies to connect with community needs — when those agencies are not community-led or -owned. 

Program development with communities requires time. It demands redistribution of power, and a reallocation of the budget. It requires adjustments to the hiring process, so that lived expertise is honored, coupled with intentional avenues to careers that pay a living wage.

Strengthening the bond between agency and community requires sweeping away all the jargon, and offering value-based parameters to diminish barriers and honor community expertise. Yes, it requires cash compensation, transportation support, wage advancement, child care, and a smaller measure of assumption about the schedules of families and communities. In a word: Respect.

TODAY’S UNDERWRITER

Agencies or organizations that partner with communities prioritize community engagement on an agency-wide level, allocate funding to employ multiple civic change strategies, and provide clear roles for stakeholders on how decisions are made. 

When offering that feedback about my experience of receiving Medicaid and WIC years ago, I wondered, where did our input go? Did it really change the system? Would dental care and childbirth education be covered under Colorado Medicaid in the short term? There was no follow-through from the facilitators.

I think about that cohort of parents who gave birth on Medicaid and received WIC, and what the real fruit of our labor was outside of the $25 stipend. I wonder, did any of us end up in a leadership role in agencies serving families like ours? Was our feedback considered expertise? 


Kayla Frawley, of Denver, is a single mom, a former midwife, and is focusing on social-welfare policy as a masters in public health candidate at New Mexico State University. Twitter: @KaylaQFrawley



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