The Struggle for Long-Term Care, Nonprofits, and What Economic Justice Requires

Providers are “split into haves and have-nots.” When Katie Smith Sloan, CEO of LeadingAge—a 5,400-member network of nonprofit aging services providers—recognized this at the network’s 2025 annual meeting, she echoed a similar argument made in these pages, and displayed rare candor.

Some organizations are thriving, while others, particularly those serving Medicaid populations, she noted, are “hanging by a thread.” In her remarks at the meeting, held in Boston earlier this fall, Sloan emphasized the need for innovation and adaptation, which is understandable. Yet this approach risks treating symptoms rather than causes.

Participants widely acknowledged that the system of long-term care is not working….But discussion of structural solutions was only rarely part of the conversation.

And the symptoms of the long-term care crisis are significant. For workers, as a Paraprofessional Health Institute report stated, “36 percent of [the direct care] workforce lives in or near poverty (defined as having a household income less than 200 percent of the federal poverty level) and 49 percent rely on public assistance programs to make ends meet.”

Meanwhile, for patients, care is often grossly inadequate. Katherine Miller, a Johns Hopkins University health policy professor and coauthor of a study on the subject, noted that “an integrated public health delivery system with full support for aging in place, such as increasing opportunities for home-based care, improving access to affordable housing, and providing solutions to satisfy older adults’ transportation and social participation needs will be critical to meet care needs of the aging population.”

At the LeadingAge conference, two things were clear: Participants widely acknowledged that the system of long-term care is not working for ordinary people. But discussion of structural solutions was rarely part of the conversation.

Troubling Trends

Meanwhile, research into nursing home costs shows some troubling trends: related-party deals, typically involving private equity, that extract resources; sale-leasebacks that turn assets into rent for affiliates; and management fees that drain revenue.

Negative outcomes of these measures include a rise in short-term mortality, fewer nursing staff hours per patient, and more hospitalizations. Struggling facilities face more than innovation gaps; resources are diverted, and regulators remain underfunded.

Industry representation often pushes advocacy away from protective standards—putting vulnerable lives at persistent risk.

While extraction is worse under for-profit owners than nonprofit owners, 63 percent of all nursing home profits—across all ownership types, including nonprofits—flow through related parties (that is, arrangements between parties with business ties or common interests). Nonprofits also use financial structures that may not best serve care. The point here isn’t to blame, but to see that the system pressures everyone.

Why Reform Is Difficult for Industry-Based Nonprofits

Several structural factors often constrain nonprofit associations like LeadingAge from being at the forefront of transformative reform:

• Organizations focus on solutions that keep coalitions together. LeadingAge represents nonprofits. Technology and new care models create unity with for-profits. Critiquing ownership or financial engineering could split the group. So, the focus shifts from accountability to innovation.
• Trade groups face tough choices. Those supplying Medicaid funding also decide on enforcement. Demanding strict action against financial fraud could cost support and risk scrutiny—even when justified.
• Workforce challenges create tension. In this fall’s conference, Roberto Muñiz, LeadingAge’s board chair, praised the dedication of workers in the sector: “We just have the hearts to continue providing excellent care.” This commitment is important. But highlighting dedication can perpetuate underfunding, leaving worker resilience as a substitute for real support like living wages, bargaining, and immigration reform.
• The “haves and have-nots” split is seen as market segmentation needing innovation. But it may result from extraction and weak rules, creating a two-tier system. This isn’t intentional misdirection; it’s how trade groups tend to see their members’ challenges.

Back in 2024, LeadingAge, facing such pressures, opposed the Centers for Medicare and Medicaid Services (CMS) proposing minimum staffing standards, and warned of closures as a result—despite research showing that residents need at least 4.1 hours of care per day to avoid harm, and the final rule required only 3.48 hours. This stance highlights the urgent conflict: Organizational capacity concerns collide with the life-or-death stakes of resident safety. Industry representation often pushes advocacy away from protective standards—putting vulnerable lives at persistent risk.

The Moving Forward Coalition as a Case Study

The Moving Forward Coalition, launched with $1.2 million from The John A. Hartford Foundation, later supplemented in 2024 by an additional $1.69 million “Phase II” grant, exemplifies both good intentions and structural constraints. The coalition has produced nine action plans and brought stakeholders together. However, two-and-a-half years in, the sector still faces challenges around some entrenched, divisive issues, such as private equity ownership, worker wages, Medicaid adequacy, and enforcement capacity.

The core challenge: LeadingAge’s role as convener of Moving Forward introduces inherent conflicts. As a trade association, it must protect member interests, so action plans center on achievable, visible improvements. This leaves more systemic issues that divide its membership, such as those mentioned above, largely unaddressed. As a result, the structural roots of extraction remain intact.

This isn’t necessarily a result of cynical calculation; it may simply reflect the limits of what industry-convened coalitions can and are structured to address. Organizations achieving significant reform such as the Long-Term Care Community Coalition, Justice in Aging, and Dignity Alliance Massachusetts (full disclosure: I am a member of the leadership committee of this last group), operate with greater independence from industry structures. They can challenge industry claims directly and pursue litigation when needed. The Moving Forward Coalition, constrained by its convening organization’s multiple stakeholder relationships and lack of adequate industry representation, finds structural reform more difficult. Organizations such as LeadingAge and Moving Forward simply cannot be the honest brokers to usher in structural change.

Building a Long-Term Care System That Works for All

Economic justice sometimes conflicts with organizational self-interest. Leading transformation within industries presents inherent constraints. Real reform often requires building greater independence, including accepting that advocacy sometimes means confronting comfortable allies and using political power even when controversial.

Long-term care needs are expanding rapidly. Not all people needing long-term care need nursing home support, but a CMS estimate suggests that the current patient load of 1.5 million may increase to 2.6 million by 2030, even as existing facilities are strained. For nonprofits, this moment requires difficult choices.

Sloan’s invocation: “Hope precedes action, which leads to impact,” points to important questions. What kind of hope? Hope centered on working within existing structures, or hope that demands transformation of those structures? The bifurcation between “best years ever” and “hanging by a thread” isn’t natural market sorting but reflects choices about who controls resources and whose lives matter.

The long-term care crisis is challenging but also offers nonprofits a unique opportunity.

The arithmetic remains clear: Every dollar diverted through complex financial arrangements represents choices about priorities. Technology and innovation are valuable, but they cannot substitute for accountability and justice. Nonprofit organizations have opportunities to use their resources and moral authority to demand transparency into ownership, financial accountability, adequate enforcement, and prosecution when fraud occurs.

Some principles that might guide change are:

• Fair distribution. This means advocating not just for adequate Medicaid reimbursement but also for transparency about where current resources go, including when financial structures don’t optimally serve care delivery.
• This means urgently supporting investigations into questionable financial arrangements, demanding transparency into ownership even when it exposes uncomfortable truths, not accepting facility closures when safety cannot be guaranteed, and making sure that operators face legal consequences when residents are harmed.
• This requires that the people most affected have the genuine power to change systems. Direct care workers earning median wages of $17.36 per hour with significant annual turnover need collective bargaining rights, immigration reform, and living wages, not just verbal appreciation for their dedication.
• Systemic transformation. This requires a willingness to change structures that perpetuate inequality. This means moving beyond stakeholder consensus-building toward advocacy for enforcement capacity, transparency requirements for ownership, restrictions on concerning financial arrangements, and public alternatives that might compete with nonprofit members.

There is no need to assign blame to leaders like Sloan who are working hard under extraordinary constraints. Rather, building a functional long-term care system is about recognizing that constraints prevent industry-based organizations from leading the transformation that vulnerable populations need. Economic justice may require nonprofits to operate with greater independence from industry structures, accept confrontation with powerful interests, and choose system transformation over stakeholder consensus.

The long-term care crisis is challenging but also offers nonprofits a unique opportunity. Nonprofits committed to economic justice can decide whether to work primarily within existing industry frameworks or to build the independence necessary to challenge extraction. Taking this harder road may create organizational dissonance, difficulties, and dissent, but the benefits can be substantial.