Five Digits, Unequal Lives: How Zip Codes Decide Who Gets to Live With Dignity

Introduction: Life in a Zip Code

In my zip code, disability support is not a right. It is a raffle that most of us lose.

On paper, I am eligible for help; help with daily living, with access, with the basic scaffolding that allows a person to participate in the world. In practice, my zip code has turned that eligibility into a promise that never arrives. I learned this not through a single dramatic denial, but through accumulation: a letter that placed me on a waiting list measured in years, phone calls returned weeks late, and the quiet realization that someone with my same disability profile in another state would already be receiving the support I was still being told to wait for.

Nothing about my body changes when I cross a county line or a state border. What changes is the policy. And policy decides whether I get to live at home, work, study, and participate, or whether I am left to survive without the supports that make those things possible.

This is the quiet truth of zip‑code‑based eligibility: it determines which disabled people get to live, work, and survive, and which are abandoned, even when their legal eligibility on paper is the same.

Policy Reality: How Eligibility Is Engineered

Disability policy often hides its most consequential decisions behind neutral language. Words like eligibility, waivers, and service availability suggest order and fairness. In reality, they describe a system deliberately designed to ration care.

Medicaid home-and community-based services (HCBS) are not guaranteed entitlements. States decide how many waiver “slots” to fund and cap them accordingly. When demand exceeds those caps, as it almost always does, waiting lists form. These lists are not accidental. They are a cost-management strategy, one that quietly converts legal rights into indefinite limbo.

In disability policy, eligibility and access are not the same thing. You can pass every assessment, submit every document, and still be told that your name is one of tens of thousands waiting for help that may not come for years. That is not a glitch. It is the system working as designed.

Geography compounds this rationing. Counties and regions vary dramatically in provider availability, transportation infrastructure, housing stock, and administrative capacity. A service that exists in theory may be unusable in practice if no provider is willing to travel to your area, no accessible transit to reach them, or no caseworker available to coordinate care.

In my own experience, I was approved for a service that could have meaningfully improved my quality of life. Month after month, I was told there was “no provider in my area.” Eligible, but unsupported. Approved, but effectively abandoned.

Structural Injustice: Redlining, Race, Poverty, and Disability

The zip code lottery is not evenly random. It is stacked.

Historic redlining and disinvestment have left lasting imprints on health, disability rates, and access to care. Neighborhoods that were once outlined in red ink are more likely today to experience higher rates of chronic illness and disability, shorter life expectancy, fewer clinics, worse transportation, and thinner social services. Disability does not occur in a vacuum; it is shaped by environment, exposure, stress, and access to preventative care.

Yet these same neighborhoods are often the least resourced when it comes to disability support. When services are tied to local tax bases, state budgets, or fragmented county systems, disability policy becomes a continuation of housing and racial injustice by other means.

Disabled people in wealthier, whiter suburbs frequently have access to better-funded schools, shorter waitlists, more providers, and stronger advocacy networks; even when their medical needs are less severe. Meanwhile, disabled people in poorer and historically marginalized communities face higher needs and fewer supports at the same time.

This is not a coincidence. It is the predictable outcome of policy choices layered over decades.

Human Impact: The Everyday Violence Few Name Out Loud

The consequences of zip‑code‑based eligibility are often described in abstract terms: delays, gaps, inefficiencies. In real life, they show up as exhaustion, entrapment, and loss.

Families collapse under the weight of unpaid caregiving because formal supports are unavailable or tied up in waiting lists. Parents age into disability themselves while caring for disabled children who were promised services that never materialized. Caregiver burnout becomes normalized, even celebrated, as a substitute for actual investment.

Many disabled people are forced into institutions, nursing homes, or unsafe living situations, not because those settings are appropriate, but because they are the only options funded in their region. Others remain trapped in abusive or neglectful households because accessible housing, in‑home support, or reliable transportation simply does not exist where they live.

Systems that claim to promote independence quietly reward those who can move to better zip codes, hire lawyers, or learn how to “perform severity” during assessments. Those who are too poor to relocate, too sick to fight bureaucracy, or too isolated to know the rules are treated as acceptable losses.

There is also a profound psychological toll. Living in constant eligibility limbo teaches people to grieve futures they might have had elsewhere. It fosters the belief that asking for basic support is asking for too much, when the truth is that the system is giving far too little.

Disability Justice Lens: Interdependence, Collective Access, and Anti‑Carceral Care

Disability justice challenges the myth that independence is the highest good and that care must be earned through productivity or compliance. It centers on interdependence, the reality that all people rely on networks of support, and collective access, the idea that access should be built into communities rather than rationed to a few.

From this lens, zip‑code‑based eligibility is not just inefficient; it is unjust. It fragments care, isolates disabled people, and reinforces carceral logics by guaranteeing institutional placement while treating community living as optional.

An anti‑carceral framework insists that disabled people should not be coerced into institutions, nursing homes, or segregated settings because home‑ and community‑based supports are underfunded. True safety and dignity come from investment in community, not confinement.

Disabled people are not problems to be managed locally. We are members of a collective whose lives are worth sustaining everywhere.

What It Would Take to Fix It: Policy, Not Charity

If zip codes can decide who suffers, policy can decide that they no longer do. These harms are not inevitable; they are the result of choices that can be reversed.

Federal Level

• Make home- and community-based services a guaranteed entitlement, not an optional waiver program. No one should be guaranteed nursing home care while being told that living at home is a luxury.
• Establish national minimum standards for wait times, service availability, and portability, so disabled people do not lose supports when they cross state lines.

State Level

• Eliminate or drastically reduce HCBS waiting lists by tying funding to assessed need, not arbitrary slot caps.
• Require states to address provider deserts through higher reimbursement rates, transportation funding, or remote service options.

Local Level

• Use zoning and housing policy to require accessible, affordable housing in every neighborhood, not just segregated pockets.
• Expand accessible transit and paratransit so services people are eligible for are actually reachable.

These are not aspirational reforms. They are civil and human rights obligations.

A Measured Call to Action: Collective Responsibility

This is not a problem that disabled people can solve alone through better self‑advocacy. It requires collective action.

Lawmakers must be pressed to fund community-based care as essential infrastructure. Agencies must be held accountable for waitlists that function as a quiet denial. Local councils and planning boards must be challenged when zoning and transit decisions exclude disabled residents.

Readers can support disability‑led and cross‑disability coalitions, show up to budget hearings, back legislation that expands HCBS funding, and refuse narratives that frame institutionalization as inevitable or benign.

Most importantly, the public must recognize that zip‑code‑based eligibility is not about efficiency. It is about how governments decide whose lives are worth supporting.

Conclusion: Beyond the Zip Code Lottery

Disabled people should not have to win the birth lottery or the moving lottery to access what keeps us alive.

The violence of the zip code lottery is quiet, bureaucratic, and entirely preventable. Five digits should not decide who gets to live safely, who gets to participate, and who is left to disappear.

Until policy treats disabled lives as non‑negotiable, wherever we live, this injustice will persist. Naming it is the first step. Changing it is a collective responsibility.

Thank you for engaging with this reflection. Your willingness to read, to question, and to sit with discomfort helps challenge systems that rely on silence to endure.

Ian Allan

Self-Advocate for The Arc of Northern Virginia

Ian Allan is a self-advocate with a deep commitment to policy literacy, systems change, and disability justice. Through The Arc of Northern Virginia, he works to ensure that people with intellectual and developmental disabilities are not merely served by systems, but are actively shaping them.