The Hidden Costs of Belonging

Last week, the “Disability Squeeze Symposium” took place in New York City. This event brought together advocates, scholars, policymakers, and individuals with lived experience to examine the complex challenges underpinning the Disability Squeeze.

The term “Disability Squeeze” describes describes the increasing economic and social pressures faced by people with disabilities. Many are struggling as the costs of housing, healthcare, assistive technologies, and other basic necessities continue to rise.

At the same time, public support does not fully meet their needs. Financial assistance is often limited, some programs lack sufficient funding, and access to essential services can be inconsistent. Essential services include:

  • Healthcare: Access to medical care, rehabilitation, mental health services, and assistive technologies.
  • Employment Services: Job training, placement assistance, and workplace accommodations.
  • Housing: Affordable and accessible housing options along with related supports.
  • Transportation: Accessible public transit and mobility assistance that enable independence and participation.
  • Social Services: Income support, disability benefits, personal care assistance, and case management.
  • Education and Training: Inclusive schooling, skills development, and lifelong learning opportunities.

Persistent barriers across these systems including healthcare, employment, and housing continue to deepen these challenges.

During the symposium, participants engaged in discussions and presentations exploring ways to address these disparities. As people with disabilities, researchers, policymakers, and community leaders shared their insights, the depth and complexity of the challenges became clear.

The conversations revealed that inclusion often comes with hidden costs, as meaningful participation depends on reliable transportation, accessible housing, and a stable income. Yet many people with disabilities must stretch already limited budgets to afford them.

A national survey of more than 1,100 adults with disabilities found that participants spend an average of $5,341 each year on essential supports such as mobility aids, personal care, home modifications, and transportation. For many households, these expenses consume about 20 percent of their income. Among those with lower incomes, the share rises to 36 percent.

Despite these significant expenses, many people with disabilities continue to face serious gaps in support. Two-thirds of survey respondents reported at least one essential need that remains unmet. The most common needs include assistive technology or devices, accessible housing, reliable transportation, and personal support. The challenge is not awareness but the high cost of supports and the uneven availability of services.

The symposium revealed that these burdens fall unevenly across groups. Hispanic participants reported a higher rate of unmet needs, about 73 percent, despite spending less on average than other groups. Participants in rural communities and those with more limited access to education experienced similar challenges.

For people receiving disability benefits or living with conditions that limit their ability to work, the financial burden could account for as much as 25 percent of their income. Nearly three-quarters of this group still reported essential needs that were not being met.

Housing and transportation remain significant barriers for many people with disabilities. Across the United States, only 5 percent of homes are fully accessible, and fewer than one in four include basic features such as step-free entrances or wider hallways. Making a home safer or more functional can cost between $3,000 and $10,000, and these expenses are rarely covered by insurance.

Transportation presents its own set of challenges. Paratransit services are often limited in both availability and reliability, while private accessible rides can cost two to three times more than standard fares. For individuals striving to maintain employment, access medical care, or engage fully in community activities, these barriers make consistent and independent mobility difficult to achieve.

Taken together, these pressures create what the symposium described as the “Disability Squeeze.” High costs, limited income, and unmet needs combine to narrow choices, limit autonomy, and undermine self-sufficiency. Many must make trade-offs between health, housing, and work.

Some programs are gradually adopting more inclusive practices. During the intake process for example, staff are now asking more detailed questions about disability-related expenses. This helps identify needs earlier and makes it easier to connect participants with assistive technology, housing assistance, and transportation services. By addressing these needs early, programs can ensure participants receive the right support and services.

These efforts suggest a growing recognition that inclusion involves not only providing access but also addressing the less visible challenges that can make participation more difficult. Ultimately, these efforts reflect a simple truth: inclusion is not only about access, but also about easing the hidden burdens that make it costly to belong.

The symposium offered more than data; it offered perspective. True inclusion involves more than accessible spaces or supportive policies. It grows from conditions that allow people to live and work without carrying disproportionate financial weight. Belonging should never depend on a person’s ability to pay for it.

The discussions showed that the “Disability Squeeze” reflects not only individual circumstances but also broader systems that shape access, choice, and stability. Lived experience offers important insight into these realities, highlighting the ongoing trade-offs people navigate when essential supports are difficult to secure. Paying attention to these perspectives helps build a deeper understanding of what meaningful inclusion truly requires.

Participation depends not only on access to programs and spaces but also on reliable supports such as transportation, accessible housing, and appropriate services. When these supports are limited or inconsistent, independence and stability become harder to sustain.

Progress can be encouraged through practical measures that focus on coordination, understanding, and responsiveness. Involving people with disabilities in program design helps ensure that services reflect real needs. Strengthening connections between agencies and service providers can make it easier for individuals to navigate systems and identify available resources. Sharing knowledge and improving awareness among practitioners can also help address gaps before they become barriers.

The Disability Squeeze Symposium highlighted how financial pressures, unmet needs, and fragmented systems continue to limit opportunities for millions with disabilities. The message was unmistakable: the cost of belonging remains too high.

True inclusion goes beyond access—it requires the stability, resources, and supports that allow people to live with dignity and independence. Addressing the “Disability Squeeze” will require coordinated action across sectors, led by and grounded in the lived experience of people with disabilities.

Programs and policies must be co-designed with those they serve, supported by sufficient funding, and focused on increasing participation and independence. When people with disabilities have the supports and opportunities needed to participate, inclusion moves from aspiration to practice, becoming a natural and lasting part of community life.

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