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In American health care, waiting is not just a burden. It is a tactic. The woman who waits six months for a home health aide, the disabled child stuck on a waiver list for years, the cancer patient navigating insurance denials as her tumor grows—each confronts the same unspoken truth: their time only matters when it generates a bill.
This is not a glitch in an otherwise functional system. It is the system. US health policy conditions patients to surrender control over their own time.
As of 2023, nearly 820,000 people were on Medicaid’s Home- and Community-Based Services (HCBS) waiver waitlists across 41 states and the District of Columbia. These hundreds of thousands of people experience an average wait time of 39 months. While not all applicants are prescreened for eligibility, many meet the medical and financial criteria; nevertheless, they still face long delays that postpone or block the care they need to live safely at home.
This bureaucratic maze of waivers, state discretion, and federal oversight does more than delay care. It reshapes how people experience illness, aging, and vulnerability. It is a system where eligibility does not guarantee access, diagnosis does not ensure treatment, and being recognized as needing care does not mean receiving it.
Nowhere is this more visible than in the structure of Medicaid HCBS waitlists: a living archive of structured absence.
An Archive of Absence
The HCBS waiver program allows states to provide long-term services in homes or community settings, instead of institutions. These services are critical for people with disabilities, older adults, and individuals with chronic conditions who seek to avoid nursing homes or hospitals. Because HCBS waivers are optional under federal law and subject to enrollment caps set by each state, every state designs its own version of the program. There is no federal guarantee of timely access or equitable delivery.
While nearly 820,000 individuals are on waitlists, thousands more have not even made it that far, remaining effectively locked out of services for which they qualify. These are not casual applicants. They are individuals who meet stringent medical and financial criteria, but are denied care only due to inadequate state funding. While they wait—often for years—their needs escalate. Family caregivers, often unpaid and unsupported, shoulder the burden, facing chronic stress, social isolation, and neglect of their own health.
To call this a “waitlist” is misleading. It is not a queue with predictable movement. It is a ledger of delay, a bureaucratic limbo that records not the presence of care, but its persistent absence. It is a list of people whose needs remain unmet due to sustained policy and funding shortfalls.
The Logic of Denial by Design
HCBS waivers are often promoted as flexible tools for states. They allow state governments to cap enrollment, restrict services to specific regions, and narrowly define eligibility—options not available in uniform Medicaid state plans. These waivers expand critical access to care, but they also give states broad authority to limit it. In doing so, they institutionalize rationing with minimal federal oversight.
A core requirement of HCBS waivers, particularly those authorized under Section 1915(c) of the Social Security Act, is “cost neutrality.” That is, states must prove that providing home- and community-based care will not cost more, on average, than institutional care.
At first glance, this requirement seems fiscally sound. But in practice, it often slows program expansion. States can only offer or extend services when they can document that doing so will be less expensive than institutionalization. This pushes state policymakers toward caution, delay, and risk aversion.
The cost-neutrality provision was introduced in the Omnibus Budget Reconciliation Act of 1981, which created Section 1915(c) and ushered in the waiver era. It was framed as a compromise, allowing states to innovate with more flexible care models as long as they did not spend more than the status quo. Four decades later, the terms of that compromise still shape the program: states must control costs before they can improve timeliness or expand eligibility.
While HCBS waivers have proven to be highly cost-effective in many cases, structural and administrative hurdles continue to limit access. States must submit detailed documentation, navigate multilayered oversight, and manage labor-intensive renewal processes that can stall even minor improvements. Such burdens discourage states from pursuing program changes even when those changes would expand or streamline care, according to the Medicaid and CHIP Payment and Access Commission (MACPAC), a nonpartisan legislative branch agency.
This creates a deep contradiction at the core of HCBS policy. Care is delayed not because it is inefficient. Instead, HCBS care takes time because, in order to be approved, it must first prove it is cheaper than institutionalization. This logic is often explained away as fiscal discipline, but pragmatically it operates as a system of structured denial. Waiver renewals require time-consuming justification, and even small adjustments can trigger additional layers of review. The result is a system in which delay is not accidental or avoidable. It is the mechanism through which care is regulated, delivered, and withheld.
In this context, waiting is not a policy failure. It is the policy itself.
The Bureaucratic Mechanics of Delay
To understand how the system enforces these delays, consider the immense administrative burden demanded of individuals in creating, managing, and renewing a waiver program. The application for a Section 1915(c) waiver can run 125 pages and takes an estimated 160 hours to complete. Every five years, federal regulation demands that Section 1915(c) waivers must be renewed or extended.
The burden isn’t merely paperwork. It’s institutional time: staff hours, audits, policy consultants, actuarial modeling. For every dollar of service, there’s a parallel economy of compliance. While states manage renewals and adjustments, patients wait in stasis—sometimes missing the very window in which care could have mattered most.
This is why the waiver program is not simply underfunded, but overadministered. Bureaucratic systems in social services often operate less to provide support than to regulate and exclude, using administrative complexity as a mechanism of control that determines who can and cannot access benefits.
The waiver system exemplifies this mechanism. Yes, it allocates care; but more importantly, it allocates waiting.
Measuring Delay, Managing Time
Even once someone is accepted into an HCBS waiver program, the politics of time persist. To help quantify service quality, CMS developed the HCBS Quality Measure Set (first released in July 2022 and updated in April 2024), which tracks metrics across domains like community inclusion, person-centered planning, staff reliability, and safety. One key metric, HCBS-1, tracks the number of individuals admitted to a medical institution despite being enrolled in HCBS, indirectly signaling that the HCBS service failed to provide care in time.
Other measures capture delay more directly. The “Unmet Needs Composite,” for instance, reflects the percentage of people who needed help with daily tasks—like eating or dressing—but did not receive it because staff were unavailable.
Here, we glimpse something deeper: even when services are delivered, they are often temporally disordered. A nurse who arrives four hours late. A bath that gets skipped for a week. A visit that lasts 10 minutes instead of 30. This erosion of care time is rarely deemed scandalous. And yet, each loss of care accumulates, undermining the therapeutic and relational core of caregiving.
Time is the medium of care. Its fragmentation is, thus, hazardous to health.
Whose Time Matters?
The cruelty of this structure is not evenly distributed. Federal analyses show that HCBS enrollees are disproportionately individuals at the intersection of poverty, disability, and racial marginalization. Among adults with intellectual and developmental disabilities, a significantly lower share of Medicaid enrollees (66%) are above 138% of the federal poverty level compared to those with private coverage, indicating economic vulnerability. Moreover, a majority of Medicaid beneficiaries are Black, Indigenous, or people of color, reflecting broader structural and racialized disparities.
Home care providers—often low-paid women of color—face inconsistent schedules, part-time hours, and burnout. Many must travel between multiple clients just to piece together enough work. Low wages, unpredictable hours, and undercompensation contribute to high turnover and staffing shortages, which, in turn, deepen delays and disruptions in HCBS delivery.
In other words: patients wait because providers are burned out, and providers burn out because the system makes patients wait. This is the social ecology of delayed care: disempowered patients on one side, disrespected workers on the other, both governed by time as a scarce resource doled out in minutes, shifts, and budgets.
The policy presumes care can be optimized on spreadsheets. In reality, people are waiting for hours that never come back.
And waiting does more than delay care—it erodes trust. It teaches patients that institutions cannot be counted on. This is temporal moral injury: the slow realization that the very systems meant to help you are calibrated to stall, deflect, or defer.
Medicaid as Mirror, Not Exception
Medicaid’s bureaucratic delays are commonly believed to be unique to public programs, whereas private insurance—bolstered by greater resources and market incentives—delivers faster, more efficient care. But this assumption falls apart on closer inspection.
As a foundational model of American health care governance, Medicaid reveals most clearly how time is structured, managed, and even withheld through layers of administrative control. (It’s not just resource scarcity; it’s eligibility audits, utilization reviews, compliance metrics, and paperwork that regulate access and pace.)
But the same temporal patterns—approval delays, coverage lapses, fragmented care delivery—exist throughout the health care system. They just appear with different names: “prior authorization,” “network limitations,” “plan year resets.” Where Medicaid makes these features legible, commercial plans often obscure them through opacity and variation. But the logic remains consistent: timeliness is always conditional, and access is always contingent.
Medicaid’s administrative complexity doesn’t contradict private insurance—it anticipates it. Medicaid has long functioned as a testing ground for sweeping health care reforms. In the 1980s, it pioneered primary-care case management and managed care models that centralized care coordination and risk-based payment. It also institutionalized utilization review standards that would later inform oversight across Medicare and commercial insurance.
So while Medicaid HCBS waitlists are especially visible examples of structural delay, they are not anomalies. They are simply more measurable, more public, and more honest about how American health care governs access through time.
Comparative Clocks
While this essay focuses on US systems, it’s worth briefly contrasting with global approaches to care and delay. In the United Kingdom, for instance, the National Health Service (NHS) publishes centralized waiting time targets, with public dashboards that show how many days a patient waits for specialist care or surgery. These delays are politically explosive, often driving headlines and policy interventions.
In contrast, the United States hides its wait times (inside eligibility rules and waiver caps). There is no federal requirement to publish HCBS waitlist data in real time. The delay is just as real—but far more difficult to politicize. Americans are taught to see this waiting as a personal problem, not a structural one.
This difference matters. Visibility produces pressure. Invisibility produces drift.
What Would Temporal Justice Look Like?
The language of health care justice often focuses on access, affordability, and outcomes. But what if we, instead, centered time? Health care centered on temporal justice might address these questions:
- What if eligibility triggered immediate service, not a spot on a list?
- What if provider schedules were funded to offer reliability, not minimal compliance?
- What if renewal cycles were streamlined, so care wasn’t paused even if paperwork lagged?
Some states are experimenting. For example, in Oregon, the K Plan—authorized under Section 1915(k) as a state-plan option—provides services based solely on assessed need rather than enrollment caps. Because it avoids waiver limits, beneficiaries are not placed on waiting lists, contrasting with traditional HCBS waiver approaches. The program increases federal matching funds; though imperfect, the K Plan demonstrates how Medicaid can recognize time as a right, not a luxury.
But expanding such models nationally would require a shift in how we imagine care—not just as a service, but as a shared temporal ethic. It means recognizing that delay is not just inconvenient. It is disabling.
Conclusion: The Wait Is the Wound
To be poor and sick in America is to live in delay. The HCBS waiver system does not just reflect that reality—it enforces it.
From eligibility to service delivery, from waiver applications to renewal reviews, from quality metrics to cost benchmarks, the system continually sends one message: your time doesn’t matter. That is, unless your time can be measured, billed, or saved.
In this context, waiting becomes more than a logistical problem. It is a form of structural violence: a slow, grinding erosion of capacity, agency, and well-being.
The good news is that we’ve already built parts of a better system. What remains is the will to value time not as a budget line, but as a moral principle. Because in health care, delay is not just a symptom. It is the wound.