With contributions from Lisa Shapiro, Joe Weissfeld, Cheryl Parcham, & Justin Mendoza.

One in five Americans and almost half of all children get their healthcare coverage through Medicaid. Public health insurance programs buoy families’ health and economic security, building opportunity for all. It is critical that these programs are strong and that they are as effective and efficient as possible.

In the past decade, grassroots advocacy has transformed into a popular and effective strategy to engage the public in movement building and advocacy efforts at large, especially in the health care space. Grassroots advocacy helps the public understand how issues being debated in Washington and state capitals affect their lives and connects consumers and families to key stakeholders in ways that maximize their impact on policy formation. These grassroots advocacy tactics and strategies equip consumer leaders and advocates to lead the charge for policy change within their communities and states, help state policymakers implement policies that will improve health and health care, and bring advocacy and policymaking leaders together to share policy ideas and work together for federal change. This work ensures that the experiences of the individuals whose lives are most affected by the policies made in Washington, DC or in state legislatures are incorporated into our efforts to defend, expand, and improve health care access and delivery.

Medicaid is a joint federal and state program that, together with the Children’s Health Insurance Program (CHIP), provides health coverage to one in five Americans. As the nation’s largest source of health coverage, Medicaid serves primarily children, pregnant women, parents, seniors, and individuals with disabilities. Without Medicaid, many of these individuals would be uninsured or underinsured. Therefore, Families USA works closely with partners in the states to maximize the reach and use of this key program to provide the highest-quality care to the most possible residents.

Medicaid expansion. One way that states have been able to serve more people and reduce the uninsured rate is by expanding their Medicaid program. As a result of the Affordable Care Act (ACA), states are allowed to offer Medicaid to individuals up to 138% of the federal poverty level. Currently, 37 states and DC have taken up this option, covering over 12 million uninsured adults. The 14 remaining states that have not taken up the ACA Medicaid expansion option could cover an additional 4 million uninsured adults if they elected to expand Medicaid. Despite emerging evidence that links Medicaid expansion to gains in coverage, access, financial security, health, and economic benefits for states and providers – the issue remains polarized in many states.

However, advocates are continuing to make headway and are working in their states to adopt new and more effective tactics to expand the program. After years of unsuccessful attempts to convince their state legislatures to adopt Medicaid expansion, activists in some of the remaining non-expansion states took matters into their own hands last election cycle. In 2018, voters in Idaho, Utah, and Nebraska organized and passed ballot initiatives to expand their state Medicaid programs. Building off this momentum, advocates in Missouri and Oklahoma are pursuing the same ballot initiative approach in 2020. Additionally, the governor and legislature in Kansas reached a preliminary agreement to expand in 2021. While much work still awaits advocates in Kansas, Oklahoma, and Missouri, all three have a good chance to implement Medicaid expansion in the next year.

Mothers and children. State advocates are also focused on creating new opportunities to use the Medicaid program to improve care for pregnant women and children in the states. Medicaid currently covers nearly half of the births in this country, with coverage for pregnant women extending for 60-days postpartum. In an attempt to address growing rates of maternal mortality and morbidity, many states are attempting to enhance this benefit. Illinois, Missouri, and New Jersey, for example, are trying to extend Medicaid coverage to 12 months postpartum. To enhance coverage further, advocates are also pushing states to invest Medicaid funds for other evidence-based maternal health and early childhood-related programs like home visiting, community health workers, and screening and treatment for maternal depression. These types of investments promote community-based solutions to improve the health and well-being of our nation’s moms and kids.

Unfortunately, the past few years have been riddled with ideological attacks on the Medicaid program. Families USA and other national partners and advocates in the states are working to counteract these attacks that are creating barriers to health and health care for millions of vulnerable individuals. These attacks center on efforts to rollback coverage and/or benefits through onerous, counterproductive work requirements, Medicaid block grants, and eligibility determination policies.

Work requirements. Work requirements have been a cornerstone of the Trump administration’s Medicaid agenda. In 2018, the administration released guidance that invited states to tie Medicaid eligibility to employment. Based on this invitation, a slew of states pursued this option, despite warnings about its legality, associated costs, and the administrative burdens that would likely lead to coverage losses.

Arkansas, one of the first states to implement work requirements, lived this reality. Nearly 20,000 beneficiaries lost coverage in the first four months after the state’s work requirements were implemented – not because they were not employed, but because they did not complete new paperwork requirements. State advocates successfully leveraged the court system to slow implementation of work requirements. Advocates in Arkansas have now won two federal court rulings overturning the work requirements. These legal decisions and implementation uncertainties have led a number of states like Arizona and Indiana to delay implementation of work requirements, while other states, like Kentucky and Virginia, withdrew their work requirement proposals after elections changed the composition of the state government. But advocates are not in the clear. Utah launched a new work requirement program in January 2020. Unfortunately, Georgia, Nebraska, and South Carolina proposed alternative approaches aimed at trying to skirt legal challenges.

Medicaid block grants. In an eerily similar situation, the Trump administration is actively soliciting states to adopt Medicaid block grants or per capita caps, based on guidance released in January 2020. While the mechanics of a block grant can be quite complex, the basic concept is straightforward — under a block grant, states would agree to a capped amount of federal funding for their Medicaid program in exchange for increased flexibility in program operations. Under a block grant scenario, if a state’s Medicaid costs exceed a fixed block grant amount, the state will have to use its own funds to make up the difference or, more likely, cut provider rates and/or services for low-income people or take away their Medicaid coverage.

The American people – and a bipartisan Senate majority – rejected this type of Medicaid cut in 2017. However, the Trump administration is attempting to bypass Congress to implement its agenda with this new block grant guidance, in stark violation of Medicaid law. Families USA analyzed this block grant approach, highlighting how it is likely illegal and would gut protections and benefits. Additionally, we are working closely with state partners to convince governors that the block grant option is a bad deal for their states and residents. This work is especially pertinent in several highly vulnerable states, including Oklahoma, Tennessee, Arkansas, Georgia, Alaska, Missouri, and Utah.

Reduced coverage for children. Another urgent concern is the massive drop in children’s insurance coverage. For a generation after the passage of CHIP in 1997, the number of uninsured children fell steadily, year after year. However, this trend began to reverse in 2017 with an uptick in the children’s uninsured rate.

Much of this drop can be attributed to onerous Medicaid eligibility determination efforts by states that make enrollment or re-enrollment into Medicaid needlessly difficult. These policies often bury individuals in paperwork, subject them to frequent redetermination requirements, or ask them to produce unnecessary or duplicative family income data within a short time period. If individuals or families miss the arbitrary deadlines , they lose their Medicaid coverage. These efforts are often targeted at adults, but it is the Medicaid-enrolled children that are bearing the brunt. A recent report from Missouri, the state with the steepest decline in Medicaid and CHIP coverage for kids, confirmed that up to 60,000 children were wrongfully removed from Medicaid because of faulty eligibility determination processes. State advocates are on the frontlines raising attention to this issue and pushing for solutions that improve the eligibility determination process and support continuous enrollment for children.

The Trump administration’s public charge rule, scheduled to go into effect February 24, blatantly discriminates against low-income families and people with health conditions who seek visas or lawful permanent residency. It rewrites immigration, health care, and public benefits policy, even though Congress has not changed the laws. The Department of Homeland Security’s rules will negatively weigh an adult’s use of Medicaid (and other public benefits), an applicant’s medical condition, and income below 125% of poverty in public charge determinations. Health care advocates were among the 250,000 who commented on the harmful rule as it was proposed. Families USA and other health advocates joined amicus briefs that delayed implementation through preliminary injunctions. Although the Supreme Court lifted the nationwide injunction, litigation challenging the rule continues.

Health care advocates also continue to fight two related actions:

1) The immigration “proclamation” requires visa applicants to show that they will have unsubsidized health insurance within 30 days of coming to the US or have the resources to pay for their care. Affordable Care Act-compliant coverage with premium tax credits does not meet this test, but junky short-term health insurance plans do. Families USA has joined an amicus brief fighting this policy.

2) The Department of Justice will soon issue rules concerning deportation of immigrants who become public charges, and the State Department may soon issue further rules barring entry. Health care advocates will be among the commenters that will oppose such proposals, building an administrative record crucial to litigation.

Besides commenting on rules and going to court, health care advocates play a crucial role in public education. The Protecting Immigrant Families coalition has prepared fact sheets and coordinated messaging campaigns to combat the chilling effect of these policies and help immigrants understand who can safely get health care and enroll in Medicaid. Health advocates distribute these materials locally and nationally. At the same time, advocates are employing the media to educate the public about the harmful and chilling effects that the rules are having. For instance, US citizen children of immigrant parents have dropped Medicaid benefits to which they are legally entitled. A federal advocacy coalition is continuing to educate Congress about the harmful effects of new immigration rules, especially on children and families, and supporting legislation introduced by Representative Judy Chu (D-CA), to prohibit the use of federal funds for carrying out the public charge rule.

The strategies and tactics used for grassroots advocacy often vary by the issue and the context, but a few items are key to effective advocacy: 1) constituent-based meetings with legislative offices; 2) building digital advocacy efforts; and 3) town hall organizing.

Voters from the district of a lawmaker are the only people who truly have a legitimate stake in the future of that lawmaker’s career as well as the policies that affect their community, a fact that lawmakers understand well. Grassroots efforts in health care that bring constituents to the table can shape the way a lawmaker thinks about issues and help build the case for real reform.

Digital advocacy has transformed in recent years from simple petitioning efforts to include highly targeted emails to members of Congress, tools to connect on social media, and even “rapid response” tools that allow users to call or fax their elected officials from their cell phones. The key to digital advocacy comes down to building a ladder of engagement and tailoring digital content to fit the audience a grassroots organization reaches. In the current environment, successful grassroots advocacy strategies often require the development of targeted lists of individuals, activists, and organizations that can be engaged in a timely manner and when a policy need arises to take action and deliver honed messages to their elected officials.

Town halls also are an opportunity for voters to communicate directly with their legislators in a public forum. In an election year, individuals seeking office or re-election more frequently participate in these fora, providing important opportunities to raise issues and get candidates’ responses and commitments solidified in the press. In non-election years, legislators often return home for town halls to gather information about the most pressing issues for their constituency. A well-placed storyteller and advocates can help drive home the importance of an issue and push for action from lawmakers.

  • Grassroots organizations have deep connections to leaders in communities who continually inform and energize the health care policy debate, and whom funders can support and activate as a powerful force for policy change.
  • Funders can support these efforts by providing sustained, multi-year support that allows organizations to not just defend Medicaid and other vital services but also simultaneously develop and implement proactive improvement strategies.
  • Funders can engage regularly with and listen to grassroots groups so that they can understand the issues that are most directly affecting the lives of families, as well as understand the support that is needed to elevate issues of importance.
  • Funders can use a partnership model that both supports grassroots organizations and allows funders to receive consistent input from groups on the ground who are closest to the issues so that together they are effective in achieving desired change.
  • Funders can empower state-based grassroots groups to come together, share ideas, and explore projects on issues of joint concern that highlight innovative and proactive policies.