The story this book tells starts with a group of dedicated community leaders, in various roles, who were able to translate scientific findings into an exemplary program designed to make a significant impact in a community area of need. In this case, the lifetime trajectory for children and families was significantly improved for those served. Like other organizations, we came face-to-face with the challenges that limit the opportunity for so many nonprofits to grow and have wide-scale impact. It is one example, one case story. Our first 20 years of experience generated a set of lessons much larger than the ECS example, lessons that can be applied to countless other programs around the country.
Our story illustrates many of the common limitations nonprofit entities face when tackling the larger social issues they are designed to address. ECS was launched with strong community support and funding. For us, the beginning was a halcyon time—adequate funding, media support, community consensus, and nearly laudatory praise. We began with privilege, and we executed well for over two decades. Yet the dual challenges of inadequate funding for nonprofits and the absence of a community system approach for fostering early childhood development meant that 20 years later we still were meeting only 20% of the estimated need for our service, even though we had robust evidence that our strategy led to consequential positive results for families and a return on investment for funders. This scenario can be applied to countless other organizations. This chapter discusses our evolution and draws lessons for other nonprofits.
The Limits of Solo Nonprofit Success
There are literally hundreds of thousands of nonprofits operating in the United States today, and their efficacy ranges from poor to outstanding. Many millions of dollars are spent annually for good works, to address larger social issues and health and human services challenges. Our experience in Southwest Ohio and Northern Kentucky offers an opportunity to learn from our successes and our failures. What did we do right? And what was not so good? Where are the big looming barriers that we have barely dented? What does the future look like? How does one stay two-to-three steps ahead? The leadership principles discussed here can be applied to many nonprofits, both in and outside of health and human services. Just having a strategic plan isn’t the answer, because as the world unfolds at accelerated speed, a strategic plan that seemed reasonable six months ago may be useless now.
We learned important lessons about the challenges faced by nonprofits and the challenges inherent in the way that nonprofits are funded, validated, supported, and ultimately sustained—or not. We learned lessons about what it meant to move a model service from scientific study into the real world with community and resource limitations.
Therein lies a story with suggestions for next steps, fraught as they may be with political implications large and small. Restructuring systems and weaving in the social infrastructure takes courage and stamina. But research is increasingly telling us that we are not making the kind of progress that would be possible from clear structural changes—improved funding models, greater concentration on the shifts in community context and larger ecological impacts on child and family development, focused and transparent accountability along with better coordinated work and a wider commitment to reducing the impact of racism and poverty.
What we were not able to do, to the extent that it was needed, was to help to create or be part of a large-scale early childhood system focused on a continuum of services for infants and young children—a transparent system funding programs that work, taking advantage of the strength of collective impact and collective advocacy. No doubt other nonprofits have had equal frustration in trying to create a continuum of services for youth, for people with disabilities, for isolated senior citizens, and so on.
While federal, state, and local investments have been made in early childhood comprehensive systems, they reach only a handful of communities. Even for existing efforts the fiscal and operational incentives are too small, and the programmatic, professional, and organizational barriers remain too high. The result may be multiple care coordinators for the same family and/or resistance by families to having public or nonprofit agencies approaching them again and again without really responding to their concrete needs. Despite the vision of early childhood systems being advanced by many over the past 10–20 years, we continue to fail to take advantage of our collective strengths and to engage enough families in the design of systems. New federal investments in children and families are being made in 2021 and 2022, including a new round of grants for state and community action to advance early childhood systems (e.g., Health Care Resources and Services Administration funding opportunities for Transforming Pediatrics for Early Childhood; Early Childhood Developmental Health Systems—Evidence to Impact; Early Childhood Comprehensive Systems; and Early Childhood Development for Health Centers). Perhaps we are learning incrementally, but still not making the needed financial investments to bring equality and opportunity to neighborhoods, communities, and the local systems that surround so many families with young children. Yet we remain hopeful for continued progress from our learnings.
Be Creative, but Hold True to the Mission
Our mission has been our mantra, and our willingness to adopt new or different strategies for going forward has always included resistance to saying no and persistence in looking for more creative ways to solve a problem. We have looked for ways to help families achieve the best outcomes. We have been challenged on many occasions to change our approach, but we have been able to hold true to our mission and do our best to deliver on our promises.
ECS Lite
As the program grew to serve just over 20% of mothers eligible for the service, we began to receive political and public pressure to loosen eligibility requirements, reduce numbers of recommended visits, and lower caseload sizes so that more families could be enrolled. The rationale was that we could then broaden our reach and move from 20% enrollment to something higher. At the ECS board and staff level, resistance to shift from our core mission was strong. We did not believe that what was called “ECS Lite” was true to what we promised. We had committed ourselves to achieving specified outcomes with our enrolled families. We did not want to provide minimal service, hoping that there might be some effect. We sought maximum effect.
We held to the principle that we would not make changes just to save money; rather, we would make changes based on evidence to save and improve lives. Taking a chance that less service for more families might lead to the same result was not a gamble we were willing to take. Our private-sector colleagues endorsed our position, reminding us that “investment in a life-changing intervention seems as wise a bet as any one of us can make.”
Eventually, we rejected the idea of “ECS Lite,” but we experienced considerable pressure to modify our program, and offer a sequence of visits that we did not believe would be as effective. Not only would that change mean moving away from validated programming, but also, we did not have the research to tell us how our visit schedule could or should be changed without potentially altering the outcomes for families. Further—and this touches upon the importance of supporting what is working—we were being asked to move away from a strategy that had demonstrated effectiveness. Not to build upon something that was working, but rather to change it, with no evidence that the new plan would produce results. As one of our colleagues poetically described it, if you put sawdust in the horse’s feed to make it stretch farther, over time it will kill the horse.
What Works Best for Whom
We didn’t know then, and it remains unknown, precisely how many home visits should be recommended for families to achieve positive outcomes. We had few guidelines to determine in advance which families were going to require more visits and which fewer. More research is needed to provide information to inform a visit schedule as well as to assess with greater precision the impacts of the experience as calibrated by family capacities, family needs, the key elements of the home visitor–family relationship and realistic expectations. This is an example of a missed opportunity and one that has emerged not only for ECS but also for home visiting as a discipline, so that visit schedules and the experience of the visits could be better focused, understood, and delivered with individual families and correlated with realistic expectations. At ECS, this line of thinking was termed, “What works best for whom?” In subsequent years, it has come to be called precision home visiting and is now one of the emerging topics for home visiting researchers across the nation.
The ECS data file of 700,000 home visits could help to tell the story. Because we created trusted relationships with families and the community, families were emphatic in telling us about what they were willing to do and what they needed. Our statistics for duration of program participation are revealing: 53% of the families were out of the program by the end of the first year, and by the end of the third year, only 25% of the families were left. On average, mothers remained in the program for 18 months, compared to an expected 36 months. Initially, we saw these numbers as evidence of failure; however, as we continued to analyze quantitative and qualitative data regarding what was going on, we realized that, in many cases, rather than evidence of failure by us or by the family, leaving the program early may reflect family success: the mother declaring that she was ready to move forward, to be more independent and confident, as we encouraged our moms to become. This is an indication of the need for home visiting programs to shift from a mindset of “retention” toward a focus on “successful transitions.” We needed data to understand when departure from the program was a success and when it might indicate we had failed to meet a family’s needs. Family, program, and community factors all affect home visiting enrollment and participation (Goyal et al. 2016; Goyal et al. 2014).
Meeting 20% of the Need
We have been criticized for meeting only 20% of the need for our service among eligible families—young, unmarried, poor, or with late or no prenatal care. We have been chided for not being able to improve community, population-level outcomes. Our response is that 20% (56,000 people) is considerably better than zero. Moreover, we don’t know the precise proportion of families who will volunteer to participate in home visiting and for whom ECS is what works. The important message is this: If funders and policymakers were willing to build upon programs that either have demonstrated that they work or have good evidence that they can work, delivering outcomes and using funds wisely, the community metrics and the numbers of enrolled families would show progress. Growth without the money to pay for it is impossible. Scaling what works requires greater investments.
Only First-Time Moms
Another challenge came when we were asked to broaden our eligibility from women pregnant for the first time to women who had a prior pregnancy or a child. This initiative had a different outcome.
From day one, our ECS board emphasized that ECS services should be provided only to first-time mothers. Prior research suggested that home visiting services were most effective with women experiencing pregnancy and childbirth for the first time. This was the particular emphasis for models such as the Nurse-Family Partnership, which ECS had used. When we began, the first line of our eligibility criteria was: first-time moms only. We understood that women who had had prior pregnancies or children also could benefit from home visiting support, perhaps even more than the first-time group, and we were aware that communities and governments were lobbying for a more expansive definition of eligible mothers. The Ohio Department of Health let us know that it was willing to fund services for both groups of moms. We resisted at first but realized that this was an opportunity to do more for more women. So, with the funding commitment, we acquiesced. We began training our home visitors for this new population. We worked with our provider agencies to put the proper accounting and billing procedures in place, and we revised information shared with our referral sources. It was the right thing to do.
So, after years of saying “only first time,” we opened eligibility. Within a few months, our operational processes were in place and, although it wasn’t our choice to change, ultimately, we pivoted and were flexible. Over time, we realized how various models can meet the needs of those other than first-time mothers. This speaks again to the importance of understanding what works best for whom.
ECS as an Example
The evolution of ECS in Cincinnati illustrates what is possible with the proper elements in place for launch, execution, and sustainability. We really had it all—engaging mission, money, leadership, business and nonprofit support, a critical need for a service, a willing community, and a reason to believe in the potential of evidence-based service models. In many important ways we did succeed. The lives of more than 56,000 ECS mothers and babies were changed, and that is a significant accomplishment. Philosophers and poets tell us that an act of creation must be its own reward. But it is also important to be aware of the tension that is inherent in deploying and sustaining nonprofits. The tension is related to desire for program development, while being stymied by limited resources for program growth. Too often, nonprofits are forced into reliance on money from philanthropic sources, while simultaneously lobbying for money in the vagaries of the public-sector marketplace. Often efforts to develop other sources of independent income are not successful, meaning that opportunities to grow are totally dependent on what the organization is able to garner each year from the two primary funding sources, knowing that both are at best episodic. For 20 years, this model worked for ECS—not to allow the growth we had hoped for but to sustain our program and to allow us to serve a substantial number of people. However, there is no assurance that funding will continue and/or continue at the same level. The availability of both public and private-sector funding for nonprofit agencies that deliver family services varies from one governmental budget or agency to the next, from one foundation priority strategy to the next. Political changes both large and small often have unforeseeable effects, including the expectations of stakeholders and the development of unsteady relationships with key organizations.
Lessons
Our evolution led to many lessons. Along the way, we did our best each day and we refined our work program to reflect what we were learning and what our families needed. Each nonprofit working to solve larger social issues has a similar and parallel need to focus on those they serve, the mission, being part of a community-wide solution, being accountable through measurement, and delivery of services that make a difference.
- Listen and respond to the needs of your community. In our case that meant focusing on families—at least two generations. Whether your organization serves children or older adults; a multi-generational perspective helps guide the work. Stable and safe home environments and neighborhoods are essential. Listening and responding to the voices of those you will support and their community of support—for ECS, community needs and family voices—is key.
- Remember, the mission matters. ECS built partnerships and strategies to ensure connection to prevention and clinical services in primary care, medical homes. Other nonprofits will need to build partnerships in alignment with their mission.
- Be part of the solution. For example, home visiting is part of the solution for strengthening families, not the total solution. Because community service systems are complex, assisting families in navigating and connecting to available services is as important as direct supports. Most nonprofit organizations can structure operations in ways that help families navigate and overcome systemic barriers. Some nonprofit organizations can help to change systems in order to remove such barriers.
- Emphasize measurement. Inclusion of quality improvement, performance data, and research activities allowed ECS to learn and adapt as we moved forward. Use data for change, to drive performance, and to advance equity. Be accountable.
- Invest in programs and services that have demonstrated effectiveness. This anchors sound policy and program decisions. Diluting investments reduces effectiveness and the potential to achieve results. Nonprofits cannot do more with less.