By Mark Humowiecki, Senior Director, National Center for Complex Health and Social Needs

If 2020 taught the field of complex care anything, it can be summed up in two words: speak up. While our field includes passionate advocates, we are best known for designing and operating interventions that address complex health and social needs. These needs are the down-stream consequences of structural and social inequities including racism, economic inequality, community-level trauma, and underinvestment in public health, behavioral health, and the social safety net. It has become clear to us at the National Center that in order to make real headway in improving the health and well-being of people with complex health and social needs, we need to focus just as much on policy change that addresses these up-stream inequities as we do on building care interventions.

We have known for years that diseases like COVID do not treat people the same, and that healthcare is not equal. This year has made plain the tremendous health inequities and the pervasive effects of racism in our country. Despite progress, we have seen that the structures that pay for and regulate healthcare and social services are more often a barrier than an accelerant to comprehensive, person-centered care. We also know from experience that well-designed complex care programs alone are not enough to address the challenges our clients experience daily. 

Our National Center’s recently released complex care core competencies include political engagement and system change as core knowledge areas. The core competencies assert that practitioners should not only understand civic processes such as how bills become laws, but also be able to forge partnerships with others so we can “use [our] collective power, privilege, and access to question the status quo and advocate for policy change.”    

While some complex care practitioners and organizations are already actively engaged in advocacy efforts, others refrain. There is a common misconception that nonprofit organizations cannot legally engage in advocacy or lobbying activities. Some organizations feel constrained by their funders or board of directors to not be too “political.” Others may feel ill equipped to engage in advocacy, thinking I’m just a clinician; advocacy is what other people do.   

This is where speaking up comes in — there is actually a lot of educating and advocacy that nonprofits are permitted to do, and a lot of issues where clinicians and other practitioners are seen as more trusted voices. Our field has a unique window into how our current system routinely fails poor people and communities of color. We can use the power and influence that comes from our collective wisdom, education, organizational reputations, and experience to, as captured in the core competencies, “inform others’ understanding of challenges and potential systems-level solutions.”  

Nonprofits can engage in advocacy (including lobbying!)

It’s a common myth that 501(c)(3) nonprofits are not allowed to take part in any advocacy, including lobbying. While some legal restrictions on advocacy do exist, they should not prevent 501(c)(3) nonprofit organizations from embracing advocacy as a core strategy to achieve their mission and improve the health and well-being of their clients and community. Organizational leaders must understand the terminology and rules that allow advocacy while ensuring legal compliance. 

The umbrella term “advocacy” includes a broad range of activities that are designed to influence political, economic and social systems. Advocacy can include organizing, conducting educational activities, and attempting to persuade the general public or elected officials. Only a few of these activities — political campaign activity and lobbying — are restricted by the IRS. Most advocacy activities are not restricted by the IRS and are available to nonprofit organizations without limitation.

Even the two areas where there are restrictions — political campaign activity and lobbying — benefit from a little more explanation. 501(c)(3) nonprofits are forbidden from engaging in political campaign activity: this means they can’t endorse a particular candidate, contribute to their campaign, or try to convince people to vote for that candidate. Employees are free to do these activities on their own personal time with their own funds, but organizational resources may not be used for these activities. Nonprofits can, however, engage in non-partisan voter registration and education activities.

The IRS allows lobbying activity by nonprofits so long as it is not a substantial activity of the organization. So, what is lobbying? Lobbying refers to efforts to influence a particular piece of legislation or ballot initiative, rather than just a set of general policies. It can include both direct lobbying (contact with elected officials or staff) and grassroots lobbying (encouraging the public to contact elected officials or staff). What, then, does substantial activity mean? The amount of lobbying can be determined by either a subjective “substantiality” test or by an expenditure test. In either case, nonprofits can devote considerable resources to lobbying — including weeks of staff time and even hiring external lobbyists — without coming close to the limits.

Several national campaigns, including Bolder Advocacy and Stand for Your Mission, promote the active participation of nonprofit organizations in advocacy and lobbying, and provide detailed information about what is allowed. They also provide examples of how nonprofit organizations can use their expertise and position to advance mission-aligned policy change. 

Practitioners and consumers make powerful advocates

Can we put aside legal restrictions as the reason our field does not engage in more advocacy efforts? Perhaps we need to first address our individual and/or collective fear of advocacy. Many of us were not exposed to policy or advocacy in our training or life experience and think of the world of government as a messy foreign land to be avoided if at all possible. But advocacy need not be intimidating. The knowledge, skills, and experience that make complex care practitioners and administrators effective with clients and colleagues can be used just as well in an advocacy environment. The ability to listen, analyze situations, and come up with creative solutions is foundational to policy and advocacy work. 

Consider adding advocacy (speaking up) as a New Year’s resolution for your organization in 2021. There is a wide range of ways the complex care community can use its knowledge and expertise in advocacy. Just pick one that feels comfortable and gradually expand into new modes as you gain confidence. Some examples include:

• Learn more about a policy issue affecting your clients, whether it’s equitable access to COVID-19 testing and vaccination, local and state eviction moratorium, funding to address social determinants of health, or Medicaid waivers and expansion. Consider subscribing to publications like Health Affairs and newsletters from national advocacy organizations like Community Catalyst and Families USA.
• Visit/speak to your local or state representative about what your clients are facing and what you are seeing in your programs, and ask them about their key health and equity priorities. Invite program graduates if they are willing to join you. 
• Invite government officials or staff to visit your program and hear from program graduates about the challenges they face and the impact of your services.
• Identify advocacy leaders in your state. Look at who is being quoted in news articles and talk to your partners about who they work with on advocacy.
• Sign on to an open letter or statement of principles on an issue of importance to your clients.
• Attend a meeting of your state’s Medical Assistance Advisory Committee (MAAC), which oversees its Medicaid program. These meetings are now being held virtually and are open to the public.
• Join a lobby day that is organized by a local coalition, your primary care association or mental health association.
• Learn about the policy concerns of your community partners or patients through a patient/community advisory committee.
• Engage your board members in discussion about policy priorities and inform them about advocacy opportunities.

To make it easier for all of us to get started and to strengthen our advocacy muscles, the National Center is creating a policy and advocacy corner in our newsletter, where we will regularly feature new policy materials (reports, briefs, legislative activity, etc.) and advocacy opportunities. We encourage you to send us content to share with our growing network (please email [email protected]). Stay tuned — we will also host a webinar on advocacy basics. We are in this together and must hold each other accountable. In 2021, we must all speak up.