Abstract
Engaging people with lived experience needs to be intentional and supported to be effective. For more than 10 years, Generations United’s GRAND Voices Network has demonstrated the power and impact of meaningful engagement changing public policy and service delivery systems across the country. This article outlines essential components of a high quality lived experience program and the results of these programs.
Key Words
Lived experience, grandfamilies, advocacy, kinship care, engagement, equity
Long before “people with lived experience” were commonly referenced, Generations United committed to the concept of “nothing about us without us.” Lived experience means knowledge based upon someone’s perspective, personal identities, and history, beyond their professional or educational experience (Guerrero Ramirez et al., 2022). African American, Native American, and Native Alaskan people are disproportionately represented in the grandparents with whom we work for numerous reasons, including cultural strength and institutional racism.
Grandparents and other relatives raising children (i.e., grandfamilies, kinship care) were always at our table, but we knew their experience was critical for policies and programs to truly support their families. We wanted to formalize the value of this lived experience, provide training and support to the caregivers, and grow a strong national network. In 2014 we began with representatives from five states—now we have GRANDs, as we call them, in more than 46 states and 13 tribes. They are integral to our work and advocacy assets bar none.
It’s a reciprocal, respectful partnership. As one GRAND said, “I'm very grateful and thankful you have given me this opportunity. I hope to be a light to all I serve.”
Engaging people with lived experience is key to advancing equity. According to a fact sheet issued by the Health and Human Services assistant secretary for planning and evaluation, three elements are essential. First, strive for true partnerships by engaging people meaningfully. Second, meaningfully and collaboratively inform decisions about those most affected by the programs or policy. Third, improve equitable outcomes by developing these so they meet people’s needs and improve access so they can realize their full potential (Guerrero Ramirez et al., 2022).
‘The GRANDs are compensated for their work.’
Members of the GRAND Voices Network are recruited to represent their state or tribe. They submit a profile and statement about why they want to be a part of the network. They are then screened by the GRAND Voices support coordinator, and if accepted, they receive training and support that enables them to tell their stories in a way that strategically considers how to connect with their audience while considering the impact of story sharing on themselves and their family members. This is important because it can be traumatic to relive pain and struggles. It is imperative for GRANDS to set their individual boundaries.
GRANDs are compensated for their work. They receive a stipend when they serve on advisory boards, testify, or in other ways share their stories and opinions in an official capacity as a GRAND Voice. Their travel is paid for, and funding is provided for childcare if they still have children that need care. These funds are provided by Casey Family Programs or the entity requesting their assistance. This is critical to their ability to participate and also affirms the value of their important role.
The GRAND Voices support coordinator and other staff at Generations United’s National Center on Grandfamilies screen requests for GRAND involvement. If greenlighted, the coordinator then identifies several GRANDs whose experience and profile match the request. Once a GRAND agrees, they are supported while they prepare for the engagement. This includes coaching on their remarks and logistics to support the engagement. After they complete the engagement, the coordinator debriefs the experience with them.
GRAND Voices have spoken at Capitol Hill briefings, met with staff of members of Congress and key Congressional committees, addressed White House convenings, testified before Congress, met with local and national media, and provided input on proposed legislation, draft publications, and essential data collection tools. Our network is invaluable in providing important feedback for our work and assisting us with technical assistance requests from programs, states, and tribes.
Examples of their impact are abundant. In 2017, GRAND Gail Gallagher from Texas represented Generations United on a panel about the opioid crisis during the National Association of Counties conference. The audience included more than 50 county leaders and elected officials. Reporting on her presentation, her fellow panelist said, “It was SO POWERFUL! She had everyone in the room captivated.”
Early in 2023, GRAND Victoria Gray testified before the House Subcommittee on Work & Welfare at a hearing titled “Welfare is Broken: Restoring Work Requirements to Lift Americans Out of Poverty.” She testified about Temporary Assistance to Needy Families (TANF) and how proposed work requirements would be unfair to grandfamilies. Her testimony led to praise across the aisle including near the end of the hearing when Rep. Wenstrup (R-OH) said about the witnesses, “You are all wonderful people, but Ms. Gray, I don’t think I have met a living saint in my life, but you are right up there.”
‘Being a GRAND Voice is like having a PhD. People like titles. It tells them I do know something, and they listen.’
Because grandfamilies are so diverse, we committed to intentionally increasing the diversity among our GRAND Voices Network. In 2014, the W.K. Kellogg Foundation funded our race equity work. This enabled us to focus on underserved and disproportionately under-represented Native American and African American grandfamilies. We collaborated with the National Indian Child Welfare Association and A Second Chance Inc. to recruit GRANDs and create race equity toolkits for the systems that impact the families. One of the GRANDs recruited through this project said, “The Grand Voices Network is a great support and blessing to my family. I know it will have major impact beyond our time together. I'm so grateful to be a part of this community. Miigwech.” (Thank you in Ojibwe.)
GRANDs also help keep things real. They’ve given us practical advice on how federal policies like the Family First Prevention Services Act should be implemented locally to effectively serve grandfamilies. They gave guidance on how to best collaborate with state child welfare agencies around federal kinship navigator opportunities so they would be better designed to serve the needs of the caregivers and the children.
GRAND Voice Adrian Charniak said, “Being a GRAND Voice is like having a PhD. People like titles. It tells them I do know something, and they listen.”
She said it also offers her and other GRANDs a bond with people across the country, “it connects you and lets the love that you have for your family travel to another family. It’s a group of caring people helping each other.”
We understand each GRAND is unique. And many of the GRANDs, especially if they are still raising children, live very complex lives. They may face a personal crisis and need to step back.
As GRAND Voice Antoinette James noted, “There is a growing need for targeted support for grandparents who are younger than 55 and raising grandchildren. These caregivers often find themselves in a different set of circumstances than older grandparents, including balancing their careers, raising younger children of their own, or facing financial pressures.” A fair number have health issues and face decline in their ability to participate.
Life happens, and one thing we’ve learned is to never, ever underestimate the strength and resiliency of a GRAND.
Donna Butts is executive director of Generations United, in Washington, DC, Robyn Wind is its GRAND Voices support coordinator, and holds tribal citizenship with the Muscogee (Creek) Nation.
Photo caption: Victoria Gray, left, is a Generations United GRAND Voice from Arizona, pictured with Rep. Danny Davis (IL-7). Gray had just testified at a House Ways and Means Subcommittee on Work and Welfare hearing about the importance of Temporary Assistance for Needy Families (TANF) for grandparents and other relatives raising children.
Photo credit: Courtesy of Generations United
References
Guerrero Ramirez, G., Bradley, K., Amos, L., Jean-Baptiste, D., Ruggiero, R., Marki, Y., Donier, J., Girouard, H., Murillo, D., Erickson, L., & Benton, A. (2022). What is lived experience? U.S. Department of Health and Human Services, Office of the Assistant Secretary for Planning and Evaluation.
