How Administrative Burdens, Medical Necessity Rules, and Insurance Design Decide Who Gets Care—and Who Is Quietly Excluded
“All of the systems are set up to really dehumanize disabled people and not to help us.”
— Debra Guckenheimer, SSDI recipient, California
Institutions rarely deny people by being openly cruel.
They deny people by pretending to be neutral.
In healthcare, insurance, and public benefits systems, neutrality usually sounds like this:
- “That’s not medically necessary.”
- “You didn’t meet the criteria.”
- “We need more documentation.”
- “You can appeal.”
- “We’re just following policy.”
These phrases are treated as objective facts. But they are not. They are administrative choices, and those choices determine who gets care, who waits, and who is quietly excluded.
Administrative Burdens Are Not Accidental Friction
For disabled people—and for many seniors—barriers to lifesaving programs are not rare or exceptional. They are routine.
Policy researchers describe these barriers as administrative burdens: the challenges that make it difficult for people to access or maintain assistance they otherwise qualify for. These include:
- lengthy and confusing paperwork
- asset tests and reporting requirements
- inflexible, in-person appointments
- long backlogs and wait times
- inaccessible or poorly designed websites
- complex and opaque application processes
As documented by the Center for American Progress, administrative burdens cause real and lasting harm, particularly for disabled people who rely on public programs to meet basic needs like food, housing, and medical care.
These burdens can affect anyone, but they fall hardest on people who already have fewer resources, less energy, and less room for error: disabled people, seniors, people of color, LGBTQ people, women, and low-income households. Programs targeted at low-income people consistently impose far more hurdles than programs aimed at middle- and upper-income populations. The result is predictable: delay, exclusion, and abandonment of benefits that can be lifesaving.
Insurance Doesn’t Decide Care — It Decides Endurance.
Health insurance is often described as a financial intermediary. In practice, it functions as an endurance test.
Coverage decisions rarely hinge on whether a treatment works. They hinge on whether it fits administrative criteria: billing codes, internal guidelines, utilization targets, and cost controls. This is why people with chronic illness, complex disabilities, or conditions that do not follow neat timelines face repeated denials—even when their doctors agree on care.
Investigative reporting has documented cases in which patients died waiting for insurers to approve treatments their physicians had already deemed necessary. These denials are not rare mistakes. They are the foreseeable outcome of systems designed to delay, discourage, and ration care quietly.
Even when denials are overturned on appeal, the harm has often already occurred: delayed treatment, worsening conditions, financial strain, and eroded trust in the healthcare system.
“Medical Necessity” Is Not a Neutral Standard
Insurance companies justify denials by invoking “medical necessity,” implying a neutral, evidence-based standard. In reality, medical necessity is defined administratively, not clinically.
That is why insurers routinely:
- override treating physicians’ expertise
- ignore extensive medical documentation that meets stated criteria
- rely on rigid guidelines that fail to account for chronic or fluctuating conditions
- treat complexity as a reason to deny rather than accommodate
Peer-reviewed research shows that a substantial share of in-network claims are denied, often with little transparency and minimal accountability. Most denials are never appealed—not because they are correct, but because people lack the time, health, money, or energy to fight them.
Appeals exist on paper. In practice, they function as screens.
Seniors Are Not Outside This System — They Are Central to It.
These dynamics do not disappear with age.
Seniors navigate many of the same administrative mechanisms through Medicare, prescription drug plans, prior authorization, and post-acute care rules. Seniors enrolled in Medicare Advantage plans, in particular, face high rates of denial for rehabilitation, home health services, and post-acute care—often justified using the same “medical necessity” language found in private insurance.
What changes with age is not the structure of denial, but the story told about it.
When disabled people are denied care, the denial is often framed as fraud prevention or individual failure. When seniors are denied care, it is framed as natural decline, cost containment, or inevitability—what one should reasonably expect “at this stage.”
Many seniors do not identify as disabled, even as they experience chronic illness, pain, mobility limitations, or cognitive impairment. That distance from the disability label makes administrative harm harder to recognize and easier to internalize. Delayed care becomes “just aging.” Denied services become resignation.
But the mechanisms are the same.
The Disability Safety Net Operates on Presumed Fraud
Public disability programs are structured around suspicion.
To access Social Security Disability Insurance or Supplemental Security Income, applicants must repeatedly prove they are disabled “enough,” often to non-medical adjudicators, under criteria that prioritize employability over health, stability, or dignity.
The system is so complex that an entire legal industry exists to help people access benefits that are supposed to be public and universal. Many applicants spend years with little or no income navigating denials and appeals. Some die waiting.
Applicants describe being sent to brief consultative exams with doctors unfamiliar with their conditions, or having judges with no medical training assess the severity of their disabilities. Many report feeling treated as liars or frauds until they exhaustively prove otherwise.
This is not incidental. Fraud narratives justify austerity, and austerity is enforced administratively.
Administrative Burdens Function as a Disability Tax
It is already expensive to be disabled.
Households with disabled adults require significantly more income to achieve the same standard of living as nondisabled households. Disabled workers earn less on average and face higher costs for medical care, transportation, housing modifications, and daily living.
Administrative burdens add another layer of cost:
- learning costs from navigating opaque systems
- compliance costs in time, money, and energy (often called the “time tax”)
- psychological costs from stress, stigma, and loss of autonomy
Disabled communities often describe this using spoon theory: when energy is limited, every administrative demand forces impossible trade-offs. A form completed may mean a medical appointment missed, a day of rest lost, or caregiving deferred.
These burdens drain the very resources people need to survive.
Neutral Rules Reproduce Inequality — Predictably
Administrative systems do not affect everyone equally.
People with worse health, lower incomes, less education, language barriers, or unstable housing are more likely to be excluded by paperwork, deadlines, and procedural complexity. Aging compounds these effects. Administrative systems that require stamina and advocacy become more exclusionary as health declines.
Over time, these exclusions entrench inequality. People denied benefits struggle to stabilize, which then becomes justification for further denial.
The system is not broken.
It is operating as designed.
Why This Feels Personal
When denial comes wrapped in policy language, people internalize it.
They assume:
- they failed to explain properly
- they missed a form
- they didn’t try hard enough
The system never says: we are designed to ration care quietly.
So shame replaces accountability, and structural harm becomes individualized.
Neutrality Is How Responsibility Disappears
No one has to say, “You don’t deserve dignity or care.”
Instead:
- insurers cite guidelines
- administrators cite procedures
- politicians cite budgets
Responsibility is fragmented until no one holds it.
This is how administrative harm becomes ordinary—and invisible.
What Real Reform Requires
No single reform will eliminate administrative burdens. But the direction is clear.
Policy researchers emphasize shifting burdens off individuals and onto institutions, including:
- trusting treating physicians’ assessments
- simplifying eligibility and data sharing
- eliminating unnecessary waiting periods
- reducing paperwork and in-person requirements
- expanding accessibility, language access, and flexibility
- adequately funding agencies to reduce backlogs
Most importantly, reform requires a cultural shift: designing systems to maximize participation among those eligible, rather than to weed people out.
The Question Beneath All of This
The question is not whether administrative burdens are efficient.
The question is who they are efficient for.
When systems systematically exclude the sickest, poorest, oldest, and most marginalized—while maintaining the appearance of neutrality—the harm is political, not technical.
If we want accountability, we have to stop asking why individuals fail and start asking what these systems are built to do.
That is where change begins.