The Space Between Access and Participation

The Americans with Disabilities Act changed how access and inclusion are understood in the United States. Thirty-six years later, the question is no longer only whether people with disabilities are included. It is also whether they can use public systems, influence how those systems operate, and depend on the services they provide.

In “The ADA Turns 36. Why Are People With Disabilities Still Fighting for the Basics?,” Marcus D. Johnson examines the barriers people with disabilities continue to face. His argument raises three related questions: Can people with disabilities use public systems, are their perspectives considered while policies are being developed, and can their participation affect the result?

Access determines whether people can receive information, communicate in a usable way, and remain involved. Inclusion means considering their perspectives as the work develops rather than after its direction has been set. Participation means being able to raise concerns, offer alternatives, and affect the outcome.

Mr. Johnson argues that representation has limited value when people with disabilities are present but cannot affect the decisions being made (Johnson, 2026). That distinction becomes clearer when agencies seek participation after the direction of a policy or proposal has begun to take shape. An agency may appoint a person with a disability to a committee whose goals are already fixed or invite public comments after a proposal has developed. Attendance can be documented. Comments can be collected. The more difficult question is whether either changed the result.

Meaningful participation depends on timing as much as inclusion. People with disabilities are often left out of decisions that shape the systems and services they rely on. Their input may be requested only after the problem has been defined and the main options have already been narrowed. At that point, participation becomes largely symbolic. Meaningful involvement requires including people with disabilities early enough for their experiences and recommendations to affect the direction of the decision (Johnson, 2026).

Public decisions often involve budgets, limits on agency authority, and competing needs. Disability perspectives are also varied. A wheelchair user may encounter a different barrier from a Deaf person or a person with an intellectual disability. Representation therefore does not mean that one person or organization speaks for everyone. It means that people with different disabilities, backgrounds, and experiences are part of discussions about the policies, programs, and services that affect them.

The more useful measure is what participation allows people to do. Were they involved while possible responses were still being considered? Could they raise concerns and offer alternatives? Did the final record explain how their recommendations were addressed? The question is not whether every recommendation was accepted, but whether participation helped shape the result.

The New York City subway accessibility settlement offers a clear example of how public agencies can be held to defined accessibility goals. First announced in 2022 and granted final court approval in April 2023, the agreement requires stair-free access at no less than 95 percent of the 364 stations identified as inaccessible. It also creates a timeline through 2055 and outlines how the parties will manage funding, rising costs, delays, and progress reporting (Disability Rights Advocates, 2022; Metropolitan Transportation Authority, 2024).

By establishing measurable requirements, the settlement made the agency’s obligations easier to identify and track. Even so, its effect depends on the funding levels, deadlines, and other conditions set out in the agreement (Metropolitan Transportation Authority, 2024). The legal obligation is therefore clearer than it was before, but the experience of riders changes only as individual stations become accessible.

This gap between a recognized right and its implementation is one reason enforcement remains necessary. Legal action can require agencies to adopt specific measures, report their progress, and provide remedies when obligations are not met.

It can also shift much of the work onto people with disabilities, who may need to document the problem, determine who is responsible, obtain legal support, and remain involved for years. The remedy matters, but the effort and costs required to reach it should not be overlooked.

Those costs help explain Mr. Johnson’s focus on the decisions behind persistent barriers. He describes inaccessible transportation, delayed wheelchair repairs, inaccessible health care, and reductions in home-care options as policy choices (Johnson, 2026).

Mr. Johnson’s use of the phrase “policy choice” draws attention to the decisions that shape access. Funding may come from one source while another office manages the service, and a program may exist on paper without enough staff, trained providers, or a workable delivery system. A lack of funding is not the same as a failure to follow an existing rule, and a shortage of qualified providers cannot be solved by changing policy language alone. Divided responsibility can also obscure who has the authority and capacity to act.

The same problem appears in administrative records. A record may show that a medical referral was made without indicating whether the office has accessible equipment. It may show that a wheelchair repair was approved without documenting when the repair was completed or whether the person could use the equipment safely while waiting. A service can appear to be available while remaining difficult or impossible to use.

Hammel et al. (2008) found that people with disabilities described participation as more than the frequency of an activity. Their accounts emphasized active engagement, choice and control, personal and social meaning, and the influence of the surrounding environment.

Lived experience can show what happens after an administrative requirement has been met. It can reveal whether a referral led to accessible care, whether equipment worked, or whether a transportation option could be used consistently. One person’s experience cannot describe everyone who uses a program, but it can still show how a system worked in a particular case.

No single source shows whether a service is working as intended. Program records can show delays, financial records can show where money was directed, legal analysis can explain an agency’s duties, and research can show whether an experience reflects a wider pattern. Together, these sources can reveal whether formal access produces practical access.

The home-care debate shows how access, inclusion, and participation can arise within a single service. New York City’s Intro. 303, sometimes called the “No More 24” bill, is a proposed law addressing long home-care shifts (New York City Council, 2026a). The current version would generally prevent employers from assigning shifts longer than 12 hours, consecutive 12-hour shifts, or more than 12 hours within a 24-hour period. It would also limit assigned work to 56 hours a week unless the employee agrees in writing to work additional hours (New York City Council, 2026b).

If enacted, the bill would take effect on April 1, 2027. A temporary provision would allow workers to consent to shifts beyond the 12-hour limits until October 1, 2027. The current version also addresses workers covered by certain existing or renewed agreements and permits limited additional hours during unforeseeable emergencies, with a broader exception when additional work is necessary to protect the life or safety of a home-care recipient or employee. A staffing shortage alone would not qualify as an unforeseeable emergency. As of July 16, 2026, Intro. 303-B remained laid over in the City Council’s Committee on Civil Service and Labor and had not been enacted (New York City Council, 2026b).

Supporters argue that 24-hour assignments can subject workers to exhausting conditions, inadequate rest, and disputes over whether all hours worked are properly compensated. From this perspective, the current system depends on one worker remaining responsible for care for an unsustainable length of time, and limiting shifts is necessary to protect workers’ health, safety, and labor rights (New York City Council, 2026a).

Opposition has also come from disability advocates, home-care workers, and labor groups, including District Council 37. They argue that New York State regulates and funds much of the home-care system and that the city proposal does not provide the additional funding needed to divide a 24-hour assignment between workers. They have warned that changes made without enough workers or replacement coverage could interrupt care and place community living at risk. These are concerns raised by opponents of the bill rather than outcomes that have been established (District Council 37, 2026; Johnson, 2026).

The same system can carry different risks for workers and care recipients. Long shifts, inadequate rest, and concerns about unpaid time can wear down workers. Gaps in care can leave a person without help to eat, transfer, bathe, reposition, leave bed, or remain safely at home. The disagreement concerns whether the funding and staffing structure can protect both groups without transferring the system’s risks from one to the other.

A limit on working hours does not by itself create more workers or guarantee that another person will arrive when a shift ends. Any change would also have to address funding, recruitment, training, scheduling, continuity of care, and missed coverage.

Participation can help show where those plans may fail. Home-care workers understand the demands of providing assistance. People who receive care understand what happens when that assistance is late, unfamiliar, interrupted, or absent. Their knowledge is most useful before the main approach has been decided.

The home-care debate also shows why access cannot be measured only by whether a program exists or a service has been authorized. When remaining at home depends on government-funded or managed services, the question is whether those services can be obtained and used. Title II of the ADA prohibits state and local governments from excluding people with disabilities from public programs, services, and activities, including transportation, health care, and community-based supports (U.S. Department of Justice, n.d.).

In Olmstead v. L.C. (1999), the Supreme Court held that the unnecessary segregation of people with disabilities may violate Title II. Gaps in community-based services can shape where a person is able to live. A shortage of qualified providers, inaccessible medical equipment, a delayed wheelchair repair, or uncertainty about which agency is responsible can increase the risk that a person will have no practical alternative to a more restrictive setting. A service may appear in policy or in an administrative record while remaining unavailable in practice.

Community placement under Olmstead depends on whether it is appropriate, whether the person does not oppose it, and whether it can be provided in light of state resources and the needs of others who rely on disability services (Olmstead v. L.C., 1999). These considerations involve more than technical judgments. They also raise questions about which needs are recognized, which barriers are treated as urgent, and who has influence over those decisions.

Participation is therefore part of access. People with disabilities need a role not only in identifying barriers but also in shaping how services are designed, coordinated, and delivered. Their experience may reveal whether a problem lies in funding, implementation, provider capacity, accessibility, or divided responsibility—distinctions that official records often miss.

Living at home also depends on reliable personal assistance, accessible transportation and health care, working equipment, and clear information. Although government programs often manage these supports separately, they intersect. A broken wheelchair may prevent someone from leaving home, an inaccessible medical office may place routine care out of reach, and a missed home-care shift may affect whether someone can get out of bed or remain safely at home.

Mr. Johnson’s statement that “limiting choices limits existence” reflects these practical limits (Johnson, 2026). Yet the number of options alone does not establish access. A provider directory may list several names even though none can provide the required service. An accessible transit route may add hours to a trip. A meeting may offer several ways to participate while none accommodates a person’s communication needs or technology.

Ultimately, access must be evaluated in practical terms. Can a person obtain the service and depend on it? Can they participate while decisions are still being shaped, and can their input affect the result?

A service may be funded, a meeting held, or a plan approved while the official record says little about whether a person could actually use the service or influence the outcome. The ADA created stronger legal protections against exclusion, but practical access continues to depend on budgets, staffing, coordination, timelines, and decisions made long before a final plan is announced. Formal compliance matters, but it does not necessarily show how a system works for the people who rely on it.

Thirty-six years after the ADA, the remaining gap can be seen in whether care is available, whether public spaces and services can be used reliably, and whether participation occurs early enough to shape decisions. Formal access is an essential starting point, but its significance depends on people’s actual experience of the system.

Access is strongest when services are dependable, participation has a meaningful role in shaping outcomes, and people with disabilities are not left to carry the primary burden of making inclusion effective.

References

Author’s Note

This essay considers access, inclusion, and participation through selected examples involving transportation, health care, home care, and public decision-making. Legislative status and implementation timelines were reviewed as of July 16, 2026, but may change. References to court decisions, proposed legislation, and settlement terms focus on the portions most relevant to the discussion.

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