Persistence for quality health care

Nov 14, 2019

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.”

Related Issues & Ideas

Report

2021 Community Health Needs Assessment

View 2021 Community Health Needs Assessment
White Paper

The Link Between Stillbirth & Maternal Mortality and Morbidity: Firsthand Accounts from American Women

View The Link Between Stillbirth & Maternal Mortality and Morbidity: Firsthand Accounts from American Women
White Paper

Strengths of Latinx Immigrants Despite Legal Violence

View Strengths of Latinx Immigrants Despite Legal Violence
Article

Why building community power is vital for philanthropy

View Why building community power is vital for philanthropy
Report

A Caring, Connected Community: How Greater Des Moines nonprofits met our needs during the pandemic

View A Caring, Connected Community: How Greater Des Moines nonprofits met our needs during the pandemic
Report

Champions for Change: A Collective Commitment to Children's Health

View Champions for Change: A Collective Commitment to Children's Health
Website

The United States Prosperity Index 2021

View The United States Prosperity Index 2021
Guide

Prenatal-to-3 State Policy Roadmap

View Prenatal-to-3 State Policy Roadmap
Website

Frameworks Institute: Changing the conversation on social issues

View Frameworks Institute: Changing the conversation on social issues
Website

Framing best practices with Topos Partnership

View Framing best practices with Topos Partnership
Website

Iowa Coalition for Collective Change

View Iowa Coalition for Collective Change
Website

Iowa Public Health Association

View Iowa Public Health Association
Report

Cultivating Change: How the HealthConnect Fellowship lifted a network of advocates to improve children's health in central Iowa

View Cultivating Change: How the HealthConnect Fellowship lifted a network of advocates to improve children's health in central Iowa
Report

Shifting the Lens: How The ACE Study sparked action to collectively improve our community's health

View Shifting the Lens: How The ACE Study sparked action to collectively improve our community's health
Website

National Academy of Medicine

View National Academy of Medicine
Website

Grant Makers in Health

View Grant Makers in Health
Report

Addressing Patients' Social Needs: An Emerging Business Case for Provider Investment

View Addressing Patients' Social Needs: An Emerging Business Case for Provider Investment
Website

Centers for Disease Control

View Centers for Disease Control

Zeroing in on Health Needs

How a needs assessment of Oakridge Neighborhood residents is informing ways to improve health and well-being

View Story
View Story

Doula Care Becomes Essential Health Care

An Iowa Doula Project is expanding community-based health care to improve Black maternal health outcomes.

View Story
View Story

Improving Health through Community Advocacy

How AMOS engaged hundreds of advocates to push for a children's mental health crisis response system

View Story
View Story

Media's Role in Improving Health

How support to Iowa Public Radio is building awareness of factors that influence well-being

View Story
View Story

Latinx Project tells story of strength and opportunity

New report highlights central Iowa Latinos contributions and disparities and elevates Latinx leaders

View Story
View Story

Improving Health through Social Supports

MercyOne's community health worker model improves outcomes for families.

View Story
View Story

Champions for Change: A Collective Commitment to Children's Health

Outcomes from Mid-Iowa Health Foundation's HealthConnect Fellowship, October 2019-June 2021

View Story
View Story

Elevating the Latinx Community

How nonprofit leaders brought attention to the Latinx community and built new systems of support during the pandemic

View Story
View Story

Six Elements to Consider with Community Conversations

View Post

Community-Based Participatory Research: What to Know

View Post

How student research informed the basic income project

Action planning
Sep 20, 2022
View Post

How empathy is a part of systems-change work

View Post

Making the Case: Communications Tactics that Work

Advocacy
Jul 26, 2022
View Post

4 ways to measure system-change progress

System change
May 31, 2022
View Post

Health disparities for Black pregnant Iowans: What you should know

View Post

5 reasons why youth should lead systems-change work

View Post

What we mean by 'system change'

System change
Apr 6, 2022
View Post

4 insights from researching housing instability in central Iowa

View Post

Iowa youth aging out of foster care: How are they doing?

View Post

7 lessons learned from Sesame Street partnership

Foundation grants
Jan 31, 2022
View Post

A closer look at mental health in schools during the pandemic

Community response
Nov 29, 2021
View Post

Get to Know Dr. Nalo Johnson

Foundation news
Nov 24, 2021
View Post

4 questions for nonprofit and community leaders

View Post

5 questions for leaders in philanthropy

Funder practices
Nov 5, 2021
View Post

5 ways to think about your personal brand as a part of your work

Leadership
Nov 1, 2021
View Post

4 issues impacting children’s health during the pandemic

View Post

7 lessons learned about systems change work

System change
Sep 9, 2021
View Post

The Foundation's role in the HealthConnect Fellowship

Funder practices
Sep 8, 2021
View Post