The Case for Continuity: Geographic Fragmentation in Publicly Funded Disability Support Services

For millions of Americans with disabilities, mobility is structured by policy architecture instead of personal choice. My research focuses on disability support service portability and examines how current policies tie essential supports to geography rather than to the individual. It draws on lived experience navigating fragmented disability service systems as well as policy development work through Beyond The Box Advocacy. This dual perspective shapes my analysis of how administrative design influences labor mobility, educational access, caregiving stability, and economic participation.

Geographic Eligibility and Service Fragmentation

Disability support services in the United States are primarily administered through Medicaid and related Home and Community-Based Services (HCBS) programs. Although Medicaid is jointly funded by federal and state governments, eligibility criteria, service availability, provider networks, and funding priorities vary by state, county, and even zip code.

Because many HCBS waivers are enrollment capped and state administered, eligibility determinations and waitlist placement generally do not translate across geographic lines. Individuals who relocate often must reapply, undergo new functional assessments, and reenter waitlists. Service hours and provider access may change based on local program rules.

Under the current structure, geographic eligibility functions as a structural constraint on mobility. Access to personal care assistance, medical coordination, transportation support, or housing stabilization may depend on remaining within a specific service catchment area.

Labor Mobility and Workforce Participation

Economic research often assumes that workers can relocate in pursuit of opportunity. For individuals who rely on place-based support systems, relocation may require relinquishing essential services.

People with disabilities participate in the labor force at roughly half the rate of people without disabilities. While this gap reflects multiple structural factors, localized service systems can further restrict access to employment mobility. Job transfers, promotions, and advancement opportunities that require relocation may become untenable when service continuity cannot be guaranteed.

Barriers to mobility arise from administrative design rather than individual capacity, skill, or motivation. When support systems are geographically bound, employment decisions are shaped by service preservation instead of opportunity maximization.

Education and Interstate Enrollment Constraints

Students who rely on Medicaid-funded community supports may face similar structural barriers when considering out-of-state colleges or graduate programs. Because HCBS eligibility, service authorizations, and provider networks are state specific, supports typically do not transfer automatically across state lines.

Relocating for school may require submitting a new Medicaid application, completing a state-specific functional assessment, and reentering a waiver waitlist. In many states, functional eligibility determinations can take several weeks to several months to complete, depending on administrative capacity and documentation requirements.

Waiver waitlists can extend far longer. As of recent national reporting, hundreds of thousands of individuals remain on HCBS waiver waitlists across states with average waiting periods in some states measured in months and multiple years in others.

For students facing an academic calendar with fixed enrollment deadlines, even a three to six month delay in service authorization can render relocation impracticable.

Service hours, reimbursement structures, and provider availability also vary significantly across jurisdictions. Even when eligibility is eventually established, students may experience prolonged gaps in support during the transition.

Educational mobility therefore becomes contingent on service continuity instead of academic fit or professional opportunity. Students may limit school choice, decline admission offers, or remain enrolled locally to avoid support service disruption.

Caregiving, Household Economics, and Public Costs

Households frequently absorb the costs of service instability. National caregiving research shows that family members often reduce work hours or exit the labor force to compensate for gaps in formal supports. When publicly funded services are interrupted, unpaid caregiving labor increases.

Families also seek to relocate in pursuit of better care. Some regions offer stronger provider networks, specialized clinicians, shorter waitlists, or more responsive service coordination. Under current systems, pursuing improved care can trigger the loss of existing services, forcing families to choose between continuity and quality.

Service disruption generates higher public expenditures. Interruptions in Home and Community-Based Services may increase reliance on emergency care, hospitalization, or residential settings, which raises overall spending.

Military Families and Disaster Displacement

Military families face distinct challenges under geographically bounded disability support systems. Permanent change of station orders require frequent relocation, often with limited notice. Families that include a person with a disability may experience service disruption and waitlist resets with each move. The Care for Military Kids Act proposes allowing children with disabilities in military families to retain their Medicaid HCBS waitlist time during relocation, illustrating a targeted portability mechanism.

Natural disasters also expose the fragility of place-based eligibility systems. Data shows that disasters displace millions of individuals annually. People with disabilities face elevated risk during evacuation and displacement when access to durable medical equipment, personal assistance, and Medicaid-funded supports is interrupted. The proposed Disaster Relief Medicaid Act sought temporary flexibilities to preserve access to care during displacement, though it did not advance into law.

Immigrant and Mixed-Status Families

Immigrant families and mixed-status households encounter additional complexity. Navigating disability support systems requires significant administrative capacity. Variation in state Medicaid rules and immigration-related eligibility restrictions can further complicate access to services, family reunification decisions, and employment mobility.

Localized eligibility structures intersect with immigration policy in ways that shape both economic participation and access to care.

Policy Implication: Toward Disability Support Portability

Disability support portability remains largely absent from mainstream economic and equity research. Policy discussions frequently focus on housing affordability, labor mobility, and transportation access. The above analysis demonstrates that geography-tied eligibility rules significantly impact labor mobility, educational opportunity, caregiving burdens, and public expenditure patterns.

Disability support portability refers to a system in which publicly funded services are linked to the individual rather than restricted by state, county, or zip code boundaries. A portability framework could include federal baseline standards, reciprocal eligibility recognition across states, transitional coverage periods during relocation, and targeted pilot programs to test implementation models.

Several federal systems already operate independently of local geography. Social Security benefits remain attached to the individual. TRICARE provides continuous coverage across military relocations. Financial and identity systems, such as bank accounts and passports, function across state lines. Disability support systems could incorporate continuity-oriented design while preserving state level administration.

By aligning disability policy with contemporary patterns of work, education, military service, disaster recovery, and family life, it reduces the structural penalties currently attached to mobility. When support can remain stable across location, people with disabilities are better positioned to participate in employment, education, and civic life. Publicly funded disability support services are intended to facilitate community integration and portability advances that objective across geographic boundaries.

Advancing disability support portability requires sustained research, cross-state analysis, and coordinated policy innovation. Ongoing work focuses on examining service fragmentation across jurisdictions, developing federal continuity infrastructure models, and identifying pilot pathways that could inform legislative reform. Readers interested in learning more or engaging further with this work can access Beyond The Box Advocacy’s additional resources.

Author Bio:

Lilly Grossman is a social work graduate student at the University of Southern California and the Founder and CEO of Beyond The Box Advocacy. Her work focuses on how publicly funded disability support systems shape economic mobility, educational access, and workforce participation. Through research and systems design, she advances policy reform that builds continuity, strengthens autonomy, and expands civic participation for people with disabilities. Her writing centers equity and the development of durable public infrastructure that sustains full community participation. Connect with Lilly on LinkedIn.