Persistence for quality health care

This post shares Mary Nelle's journey as a fellow in the first cohort and was first published in September 2019. Mary Nelle continues to work on this issue as part of the second cohort of fellows.

The Journey

The fellowship offered Mary Nelle an opportunity to deepen the advocacy work she already led in her job at Child & Family Policy Center. She was excited about the program’s innovative model, intentional focus on children’s health issues, and the opportunity to work as a cohort.

Despite her experience advocating for children, she was surprised by the amount of time she spent gaining clarity on what she would focus on for this fellowship. Part of the challenge was that she juggled so many issues and wasn’t used to time and resources focused on one area.

“Being able to devote all of your resources to an issue is a new skill,” says Mary Nelle. “It’s almost counter to how you’ve been trained to operate.”

The dedicated time and space for planning allowed her to take what she was learning at conferences, workshops, and meetings and apply it, leading her to think more deeply and become more intentional about all of the issues she’s working on.

“As advocates, we often get ‘too busy’ or have too many competing demands, too little time, and too few resources to advocate in the manner that we know would be best,” says Mary Nelle. “The resources, time, and space provided through this fellowship gave me a sense of what it was like to implement closer to an ideal advocacy strategy.”

The Issue

Ultimately, Mary Nelle defined her issue as optimizing the care and services children on Medicaid receive. As Iowa’s Medicaid program became managed by private organizations, Mary Nelle became a voice to inform how those programs deliver care to make sure children’s needs are considered as decisions are made.

In her first year, Mary Nelle focused on framing Medicaid as a children’s health insurance program. She educated elected officials and stakeholders on the important health services the program provides and how that can lead to better outcomes long-term. In her second year, she moved toward identifying and implementing specific strategies that would optimize care and services to children.

She’s advocated to have a pediatric advisory board, where experts on children’s issues would make recommendations to managed care organizations (MCOs) to ensure best practices are being used.

She also has defended Medicaid from policies that would restrict access or harm children. “The political environment over the past two years has been a challenging one,” she says. “Medicaid faced threats at the state and federal levels, which have made optimizing the care and services children on Medicaid receive simultaneously more difficult and also more important.

“There’s limited bandwidth among elected officials to devote resources to anything but putting out fires, but if we don’t raise those questions, if we don’t make those asks, nobody will.”

Successes

When most stakeholders are focused on putting out fires within the system, Mary Nelle has struggled to find successes with her efforts, and yet, she has seen success with decision makers bringing up kids more often in conversations about Medicaid, a sign that her awareness efforts are paying off.

She has also been a part of advocating for these achievements in Iowa and at the federal level:

• Preventing legislation that would have taken away access to Medicaid or restructured the Affordable Care Act
• Forming a partnership with the Iowa Medicaid Enterprise to explore creating a pediatric advisory board
• Renewing CHIP for an unprecedented 10 years
• Waiving the five-year waiting period for legal permanent residents to access Medicaid prenatal and maternity services
• Establishing a children’s mental health care system in Iowa

One of her biggest wins was being invited to Iowa Medicaid Enterprise’s Process Improvement Working Group. As the only non-provider representative invited to attend those meetings, Mary Nelle prioritized her schedule to be there every Friday afternoon for four hours, but her time to present was continually pushed back to future meetings. Finally, she expressed her frustration at the end of a meeting and was given an impromptu chance to speak.

Having practiced her elevator speech in preparation for this moment, she made her case for changes that the rest of the stakeholders engaged in.

Now she is organizing a Medicaid Matters coalition that has been meeting monthly since January and represents 40 organizations focused on strengthening and improving Medicaid. A survey after the first meeting showed an overwhelming desire from those who attended to continue to meet and work together as a group to advocate for policies. She was surprised to see this level of interest after several unsuccessful attempts to build a coalition over six years.

“I think we are going to be well positioned going into the 2020 session because of work this group is going to do,” she says.

Lessons Learned

The fellowship pushed Mary Nelle to operate in a different way by having time and space to get the strategy and message right from the start and building deeper connections with advocates working on similar issues. “I’m seeing the value in maybe not being the jack of all trades in children’s health and mapping out where the opportunity is and aligning resources there,” she says.

She’s also been pushed to see herself as a leader. She recalls mentor Rick Kozin asking the fellows to reflect on qualities of a leader and her response was, “I genuinely never thought about this or considered myself as a leader.” Instead, she describes herself as “a facilitator trying to figure out what’s missing and the right people and the right resources to fill that gap.”

“Being recognized as a leader by my peers and other members of the community challenged me to see myself as a leader and to assume a leadership role as a child health advocate,” she says.

Benefits of the Fellowship

Having a cohort gave her renewed energy and support: “This work is extremely rewarding, but it can also be really hard, and it can be really isolating,” says Mary Nelle. “I don’t want to diminish the benefit of having a support network of just the most brilliant and thoughtful people. It’s like a warm blanket I can wrap myself around.”

While every fellow worked on specific issues, their work overlapped and gave Mary Nelle a chance to see new perspectives on the many issues she advocates for. She especially began to work closely with fellows Lisa and Chaney as they provided support for each other’s work.

“It’s absolutely made all of our work so much better,” she says. “We have different strengths. I feel like my work is armed with Chaney’s policy expertise and Lisa’s strategic coalition-building expertise. I have this army.”

“There’s now that strength, that confidence,” says Suzanne Mineck, president of Mid-Iowa Health Foundation, in reflecting on Mary Nelle’s journey, “and maybe that comes both with time and space for self-reflection and feeling that army around you.”

The Future

Mary Nelle sees success in getting decision makers to talk about kids when making decisions about Medicaid, but she’s now working on the follow through in having them implement their promises. She’s trying to determine how to have accountability without losing relationships.

She also wants to see greater focus on maternal depression screenings during well-child visits and, after conducting focus groups with the business community, is working on a case for business leaders to support Medicaid.

“The first rule of system change is that change will take at least twice as long as you anticipate,” says Mary Nelle. “In order to accomplish longer-term system change, we will need to maintain our efforts and a persistence as child health advocates, expanding our network of advocates, and working together to elevate the importance of addressing children’s health and developmental needs.”