Youth Advocacy, Stories, and Voice to Expand Health Coverage and Equity

What if all children and families had affordable health coverage-- and youth were driving the advocacy to demand care & health equity?

Photo of Jessie Mandle
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Founding Story: Share a story about a key experience or spark that helps the network understand why this project got started or a story about how you became inspired about the potential for this project to succeed.

Utah has one of the highest rates of uninsured children in the nation, and the highest rate of uninsured Latino children nation. We know that health coverage is fundamental to helping kids thrive. It affects all aspects of a child’s development: uninsured children are more likely to have an undiagnosed condition, delay their care, and miss school due to illness. So how can almost one in 10 children still be uninsured in Utah? One critical reason is that Utah has not expanded its Medicaid program to cover low-income adults who are unable to afford private insurance, but make too much to qualify for Medicaid; they are in a "coverage gap." This means tens of thousands of parents are uninsured. When parents are uninsured, their children are more likely to be uninsured too. For years Utah state leaders and community advocates alike have worked tirelessly to expand our Medicaid program, but the Utah Legislature has rejected expansion proposals. This failure to act will affect Utah children and families for years to come. We started this project because it is time we engage youth in this effort, so they have the tools and knowledge to speak out on issues of health and disparities. This is the first time youth have been brought into the statewide Medicaid expansion campaign and broader advocacy for health equity. While we know the challenges are numerous, so too are the opportunities to strengthen youth voice, build new advocacy channels, and advance health justice in Utah.

Which categories describe you? (the answer will not be public)

  • White (for example: German, Irish, English, Italian, Polish, French, Caucasian)

Website

www.utahchildren.org

Location: Where is your organization headquartered? [State]

  • Utah

Location: Where is your organization headquartered? [City]

Salt Lake City

Location: Where is your project primarily creating impact? [State]

  • Utah

Location: Where is your project primarily creating impact? [City]

This project is starting with youth organizations in Salt Lake City, with youth coming from low-income and under-resourced communities throughout the wider Salt Lake Valley. We will be engaging youth on statewide health issues and politics that affect children, how our state policies can help or harm our health. In this pilot year, we will also be exploring ways we can engage youth across Utah to build a rural-urban dialogue, and develop statewide relationships to advocate on key health issues.

Problem: What problem is this project trying to address?

Almost one third of Utah's population is under 18. Utah has one of the highest rates of uninsured children in the nation, and the highest rate of uninsured Hispanic children. At least 85,000 children in Utah are uninsured. We are one of 19 states that still has not expanded its Medicaid program for parents and individuals who cannot afford marketplace insurance, but make too much to qualify for Medicaid. When parents lack health insurance, their children are more likely to be uninsured. In addition, Utah has seen an alarming rise in youth suicide. Utah’s rate of suicide has doubled since 2008. Youth are not getting the mental health support they need. Furthermore, health disparities are widening; one in four Utah children are non-White. Children of color experience poorer health outcomes, including mental health. Our laws and policies do not reflect the growing diversity of the state.

The solution is to connect all Utahns with affordable, continuous health care and to lift up the voices and experiences of our youth. By working with middle and high school students in school and community-based programs, we will create a forum to talk with youth about health coverage, care and disparities.

We will start meeting in September in after school sessions. Throughout the fall, we will have conversations about children's health coverage and equity in Utah, so youth are aware of the issues and politics. We will create opportunities to record students' stories and experiences with health coverage and care, and determine the best ways to disseminate these stories. Youth in the after school program come from low-income and marginalized communities. Their experiences will drive the process. Some of the questions we will explore include, how has health care affected your life? What is it like having parents who do not have health insurance? 

We will develop coordinated projects and strategies to advocate and educate lawmakers about how youth are affected, and align these efforts with the broader state coalition working to close the insurance coverage gap. In the winter, when the Legislature is in session, we will share experiences, advocate through multiple channels and meet with key legislators and groups.

Our youth know how our state is transforming and changing. Youth here are experiencing an unprecedented level of racial/ethnic diversity and integration in Utah, and can engage communities and lawmakers in new ways.  They also know how health and wellness disparities  affect their families and their future. We need to incorporate more youth voices in health advocacy, to create a Utah where all can thrive.

Is your model focused on any of the following traditionally underserved communities?

  • Communities of color
  • Low-income communities

Does your model work within any of the following sectors?

  • Community Development and Empowerment
  • Education

Year Founded

2016

Project Stage

  • Idea (poised to launch)

Example: Walk the network through a specific example of what happens when a person or group engages with your solution.

I anticipate several outcomes from this project: The first cohort will be ~15 youth in a Salt Lake City after school program where they will learn, advocate and become informed about health justice and political processes. This experience can contribute to a sense of purpose, affecting their well-being and future decisions. We also will coordinate youth advocacy efforts with other organizations and coalitions. I believe these relationships will help us older advocates to rethink some of the ways we approach our work, and develop new strategies. Finally, the Utah Legislature will hear from youth in innovative ways. They will see how their decisions affect youth. Our hope is that this will transform debates, decisions and policy-making.

Impact: What was the impact of your work last year? Please also describe the projected future impact for the coming years.

As a children's advocacy organization, we have made progress on our goals of decreasing children's uninsured rates, reducing disparities and closing the Medicaid coverage gap. During the 2016 Legislative Session, we successfully worked to remove some of the barriers for immigrant children to receive public health coverage. In addition, the Legislature gave money for Medicaid outreach funds to reach more Latino families. The Legislature also raised the Medicaid income eligibility for some low-income parents. These are all steps to insuring the 85,000+ children who remain without coverage. But we need to do more to close the coverage gap for all, and to advance children's health equity; youth involvement can help close the gap. We work with many organizations on Medicaid expansion. But we do not yet have youth organized to speak to the disparities in coverage and care they experience.

Organization Type

  • nonprofit/NGO/citizen sector

Annual Budget

  • $500k - $1m

Financial Sustainability Plan: What is your solution’s plan to ensure financial sustainability?

This youth advocacy pilot leverages ongoing and existing school-based and after school programs to engage youth and their families. Throughout the pilot year, we will explore how this model can launch youth health advocacy and involvement in the future. We will strengthen ties with other youth organizations and health access groups. In future years, we can address other critical health issues, including oral health and mental health advocacy.

Unique Value Proposition: How else is this problem being addressed? Are there other organizations working in the same field, and how does your project differ from these other approaches?

We are one of the leading statewide organizations working on affordable health coverage for families and children. We work with a broad stakeholder coalition on this and other health topics. But youth have not been involved. We want to change this by connecting existing youth leadership services and programs with statewide advocacy efforts around issues of social justice, anti- poverty and health. From a national perspective, other states have involved parent voice in Medicaid expansion campaigns, but there has not been a focus on lifting up youth experiences or youth advocacy.

Reflect on the Field and its Future: Stepping outside of your project, what do you see as the most important or promising shifts that can advance children’s wellbeing?

I am excited about the ways we are approaching children's health more holistically. Maternal health, toxic stress, and early childhood are embedded in discussions on wellbeing. We are having more comprehensive conversations about what prevention looks like, including equity and the social determinants of health. Finally, I think today's children and youth are, in many ways, more accepting and open than ever before. They are aware of the shared challenges and connections across issues and movements. I think this provides a unique and exciting opportunity for social change today.

Source: How did you hear about the Children’s Wellbeing Challenge? (the answer will not be public)

  • Word of mouth

Referral: If you discovered the Challenge thanks to an organization or person other than Ashoka, who was it? (the answer will not be public)

my colleague Lincoln Nehring

Program Design Clarity

The main beneficiaries are youth in the Salt Lake after school program, as well as Medicaid expansion health advocates, and state policymakers. The main activities will be after school sessions and forums with youth, developing advocacy strategies (i.e. recording stories and sharing them, op-eds, small community surveys etc.) and implementing these strategies in the late fall and winter. The initial activities will be in the Salt Lake area; meetings will be on a regular basis in the fall, and activities during the Legislature in the winter. Youth advocates will conduct the primary activities.

Community Leadership

We will develop this project in collaboration with the youth in the after school program. They will be driving the process, deciding how they want to engage on issues of health equity and care, where to get involved, and different ways to advocate. In addition, we will work with a broader coalition to develop a coordinated advocacy strategy that reflects the needs and input of community stakeholders, and demand policies that work for all.

Age of Children Impacted

  • Pregnancy - 0
  • 0-1.5
  • 1.5 -3
  • 3 - 5
  • 6 - 12
  • 12+

Spread Strategies

This project seeks to expand access to health coverage and care by changing state policies and systems. In doing so, we want to re-shape our institutions and political processes so youth are involved and heard. We hope this can be a model for other policy reforms and campaigns that do not have a direct 'youth focus'. This pilot can connect with efforts in other states to change the culture and structures affecting youth and families’ health.

Reflect on how your work helps children to thrive. How are you cultivating children’s sense of self, belonging, and purpose through your model?

This project has the potential to engage under-represented youth to speak out on the policies and practices affecting their daily lives and well-being. Their personal experiences and strategic advocacy can affect state politics and processes. But this project can also help youth understand how their individual experience fits within a broader context, and see how their experiences connect with others, both in their immediate community and beyond.

Leadership Story

As a policy analyst at an advocacy nonprofit, I approached the director of an after school program to see how youth could work on health coverage and access issues. The worlds of advocacy and youth services are often divided. But I miss working directly with youth, and hope their perspective can invigorate efforts for affordable health care. I am passionate about improving the policies that affect children’s well-being. But I have also come to believe that policies only get us so far- we must connect our work with broader transformative movements, dialogue and understanding across communities.

What awards or honors has the project received? (Optional)

Voices for Utah Children has received many awards for our advocacy work. The proposed project to engage youth voice in health advocacy is still in its pilot phase.

Organization's Twitter Handle

@[utchildren]

Organization’s Facebook Page (URL)

https://www.facebook.com/search/top/?q=voices%20for%20utah%20children

Leader's LinkedIn Profile (URL)

https://www.linkedin.com/in/jessie-mandle-295975a

Evaluation results

4 evaluations so far

1. Relevance: Does this project seem to help children (ages 0 to 12 years) develop a strong sense of self, belonging, and purpose?

5 - Yes, this is great! The project lays out a strong, compelling case for how its model nurtures children’s wellbeing. - 25%

4 - It seems like a good fit, and the model talks explicitly about children’s wellbeing. - 25%

3 - I think so. The project seems related to children’s wellbeing, but the logic is vague. - 50%

2 - Not sure. The project doesn’t have much to do with wellbeing, or it doesn’t give enough information. - 0%

1 - Nope, this project definitely doesn’t fit the challenge brief (e.g., It doesn’t help kids younger than 12, isn’t in the U.S., etc.) - 0%

2. Innovation: Does this project tackle children’s wellbeing from a new angle?

5 - I loved this! The project describes a novel model that addresses important cultural or systemic barriers. - 0%

4 - This is pretty cool. The project is addressing an important problem in a new or compelling way. - 50%

3 - I feel like there’s something there, but I want more details about what makes it distinctive. - 25%

2 - It’s a good project, but I’ve seen others like it before. - 0%

1 - It was confusing or hard to tell what it made it different. - 25%

3. Social Impact: What is this project’s potential for creating positive social impact?

5 - Lots of potential. This project is achieving impressive results, and it’s growing quickly. It could absolutely inspire changes in the ways we approach caring for kids nationally, across sectors (e.g. childcare, healthcare, education). - 25%

4 - Pretty good potential. This project demonstrates significant positive impact so far, and it could scale regionally or nationally one day and fundamentally change how a system operates (e.g. childcare, healthcare, education). - 0%

3 - Budding potential. This project is creating local impact, but it would take a few adjustments before it could scale. - 25%

2 - Some potential. This project demonstrates some initial positive impact, but it would require major changes before it could scale. - 50%

1 - Limited potential. This project has great intentions, but it looks like it does not include key drivers of a shift towards children’s wellbeing. - 0%

4. Overall, how do you feel about this idea?

5 - This idea rocked my world. It’s awesome! - 25%

4 - This idea seems really exciting. With a little more polishing, it’d be among my favorites. - 0%

3 - I think the idea is great, but it needs some work before it moves onto the next round. - 50%

2 - I liked it fine but preferred others. - 0%

1 - It didn’t make my heart beat faster. Needs significant revisions. - 25%

5. Offer some feedback. Where should this participant spend some time revising?

DEFINING THE PROBLEM. Make sure to articulate the root causes or main barriers of the social issue your project addresses. (Founding Story, Problem, Solution). - 0%

CLARITY OF MODEL. Make sure to mention (a.) the beneficiary, b) the main activities, and c) how those activities drive social impact. Keep it streamlined! - 100%

MARKETPLACE. Make sure to research other players in this space and articulate how this project is different. I didn’t get a complete sense of how this project compares to others. - 66.7%

IMPACT POTENTIAL. Make sure to use specific numbers to describe what your project has achieved so far! And consider how you might scale the model or its insights, through partnerships, trainings, or franchising. - 0%

WRITING STYLE. Try to stay concise and make it vivid. Avoid jargon. - 0%

Nothing stands out! I thought it was great. - 0%

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Photo of Leanne McEvoy
Team

Bravo for youth involvement in policy and legislation that directly impacts their lives and the lives of all youth/children!  We need more organizations engaging and empowering youth versus taking a paternalistic approach!  Keep up the GREAT work.