Wiley's Walk

Congress has passed a broad, Republican-backed budget bill that includes substantial tax cuts and major reductions to federal programs such as Medicaid and SNAP.

While much of the public discourse has focused on fiscal implications, the human impact of this legislation—particularly on individuals with disabilities—is profound and far-reaching.

With the bill awaiting the President’s signature, this is a key opportunity to understand the legislative process, the bill’s projected effects, and the role of public advocacy in shaping federal policy.

From Bill to Law: What Happens Now?

Having cleared both the House and Senate, the bill moves to the President. If signed, it becomes law. If vetoed, Congress can override the veto with a two-thirds majority in both chambers.

Even after a bill becomes law, public engagement remains critical. Federal agencies will interpret and implement the law through regulatory processes, and the public can submit feedback during designated comment periods. These rules often determine how legislation functions in practice—and how its effects are felt in daily life.

What the Bill Will Do

This legislation initiates significant changes to federal spending, especially in health care and social safety net programs.

According to the nonpartisan Congressional Budget Office (CBO), the bill will reduce federal health-care spending by approximately $1.1 trillion over the next decade, with more than $1 trillion of those reductions affecting Medicaid.

As the primary source of coverage for many low-income individuals and people with disabilities, Medicaid funds critical services such as in-home care, personal care attendants, assistive technology, and transportation.

Cuts of this magnitude are expected to impact health care delivery broadly, including in rural areas and community health centers. For people with disabilities, the consequences could be especially disruptive, threatening services that support independence.

The CBO projects that 11.8 million people could lose health insurance by 2034 due to Medicaid eligibility changes. With the expiration of enhanced Affordable Care Act (ACA) tax credits and new marketplace restrictions, that figure may reach 17 million.

Medicaid currently serves nearly one in five people and is the main payer for long-term care. It also covers roughly 40% of all births in the United States.

In addition, the legislation’s projected $3.3 trillion increase to the federal deficit over ten years could trigger automatic spending cuts under the PAYGO law. Although some programs are exempt, Medicare is subject to annual reductions of up to 4%, which could amount to $45 billion in 2026 alone and nearly $490 billion over a decade. These cuts may reduce provider participation, raise premiums, and limit access for older adults.

The bill also alters the Medicare Savings Program enrollment process, potentially disqualifying up to 1.3 million individuals and increasing their out-of-pocket costs.

For People with Disabilities, the Stakes Are Especially High

For many individuals with disabilities, Medicaid is more than a health insurance program—it is a foundational support system. It enables autonomy, employment, and community participation. The proposed reductions risk undermining these supports and reversing progress toward equality and inclusion.

However, this community has historically demonstrated its ability to influence public policy through organized advocacy.

A Legacy of Advocacy: Changing Policy Through Action

The Americans with Disabilities Act (ADA), enacted in 1990, was the product of sustained grassroots organizing. A defining moment came during the “Capitol Crawl,” when activists scaled the steps of the U.S. Capitol to demand access and equal treatment under the law.

In 2017, a high-profile attempt to repeal the ACA and cut Medicaid failed in large part due to public mobilization—particularly from disability rights organizations such as ADAPT. Protests, sit-ins, and direct advocacy helped shift both public opinion and legislative outcomes.

These examples highlight a recurring truth: collective action can change the direction of national policy.

What You Can Do Now

Despite the bill’s passage through Congress, there remain multiple ways to engage and influence its implementation:

• Participate in Rule-making: Submit public comments during regulatory drafting periods to help shape how the law is applied.
• Support Future Legislative Fixes: Advocate for amendments or follow-up legislation to mitigate harmful effects.
• Join Advocacy Organizations: Support groups such as The Arc, National Disability Rights Network, ADAPT, and similar organizations that are actively organizing responses.
• Educate and Mobilize: Share reliable information within your community and promote civic engagement.

The Process Isn’t Over—And Public Voices Still Matter

The bill’s passage marks a major policy shift, but it is not the final chapter. The direction of federal policy is continually influenced by community input, civic participation, and sustained advocacy.

The disability rights movement has consistently demonstrated that change is possible. Through collaboration and persistence, individuals have transformed public systems to become more equitable and responsive.

This is a critical moment to stay engaged, foster informed dialogue, and work to protect essential services. Effective policy should reflect the diverse needs of the people it serves—and that starts with ensuring everyone has the opportunity to be heard and included.

In the end, access and inclusion are not only goals of public policy—they are essential to its legitimacy and success.

Language draws lines across how people are seen and understood. It can build connection or create distance. The words chosen to describe someone are never neutral. They reveal how society assigns value, how belonging is extended or withheld. A single word can offer dignity or diminish it.

Over the years, terms like physically challenged, differently abled, and diverse-ability have emerged, each coined with the intention of sounding more inclusive and respectful than the last. These phrases are usually introduced with good intentions. The hope is often to shift attention toward ability, to offer encouragement, or to distance the speaker from outdated or clinical language. Despite these motivations, the results are often mixed.

When language avoids directly naming a condition or identity, it risks sending a different kind of message—one that suggests discomfort, denial, or even shame. Replacing direct terms with softened alternatives may sound kinder, but it can create confusion or distance instead of clarity and connection. Euphemisms rarely reduce stigma. More often, they reflect the speaker’s unease rather than the needs or identity of the person being described (Dolmage, 2014).

In response to stigma and exclusion, person-first language gained popularity in the 1980s. This approach encouraged saying “person with a disability” instead of “disabled person,” placing the individual before the condition. It was meant to restore dignity in systems that often reduced people to labels or diagnoses. For many, this change felt necessary and became common in education, healthcare, and public institutions (Snow, 2007).

Organizations like the American Psychological Association and the Centers for Disease Control and Prevention continue to recommend person-first language as a respectful practice, especially in professional and academic settings (APA, 2019; CDC, 2021). The goal is to recognize people as whole, complex individuals—not just defined by their physical, mental, or psychological conditions.

However, not everyone agrees with this approach. Some individuals and communities have questioned whether separating the person from the condition truly respects their dignity or instead suggests the condition should be hidden.

This concern led to the rise of identity-first language, which views conditions as part of a person’s identity rather than something separate. For example, saying “autistic person” instead of “person with autism” reflects the belief that autism shapes a person’s experience and sense of self, rather than being just a condition they have (Botha et al., 2021).

The discussion becomes even more complicated when euphemisms like “special needs,” “handi-capable,” or “differently abled” are used. While often intended to empower or include, these terms can have the opposite effect. They tend to overlook real barriers, minimize struggles, and hide the need for real change. In doing so, they risk erasing rather than affirming the people they describe (Dolmage, 2014; Snow, 2007).

Preferences around language vary widely. Some people feel strongly about using identity-first language. Others continue to prefer the person-first model. Many shift between the two depending on context, audience, or mood. What matters most is not enforcing a single standard, but making space for individuals to define themselves on their own terms. Respect begins with listening and continues with honoring what people say about their own identities.

Language has the power to signal belonging—or to subtly mark someone as “other.” It can make people feel seen, or reduce them to a single facet of their experience. At its best, language affirms identity with honesty and respect. Language, on its own, cannot remove physical, social, or institutional barriers. It will not undo decades of exclusion or discrimination. Still, it plays a powerful role in shaping perception. Language influences policy, education, healthcare, and access. It determines who gets counted, who gets support, and who gets left out (APA, 2019; CDC, 2021).

The words we choose matter. They set the tone for relationships, environments, and entire systems. Thoughtful language isn’t judged by perfection; it’s about being open, paying attention, and asking others what they prefer instead of assuming.

There is no one-size-fits-all phrase. Language evolves—just like identity. True respect isn’t found in a fixed guideline or glossary. It’s built through conversation, through listening with intent, and by making space for people to define themselves in the words that feel most true to who they are.

References

• American Psychological Association. (2019). Guidelines for bias-free language: Disability. https://apastyle.apa.org/style-grammar-guidelines/bias-free-language/disability
• Botha, M., Hanlon, J., & Williams, G. L. (2021). Does language matter? Identity-first versus person-first language use in autism research: A response to Vivanti. Journal of Autism and Developmental Disorders, 51(11), 4329–4331. https://doi.org/10.1007/s10803-020-04858-w
• Centers for Disease Control and Prevention. (2021). Communicating with and about people with disabilities. U.S. Department of Health and Human Services. https://www.cdc.gov/disability-and-health/articles-documents/communicating-with-and-about-people-with-disabilities.html?CDC_AAref_Val=https://www.cdc.gov/ncbddd/disabilityandhealth/materials/factsheets/fs-communicating-with-people.html
• Dolmage, J. T. (2014). Disability rhetoric. Syracuse University Press.
• Snow, K. (2007). People first language. Disability Is Natural. https://www.disabilityisnatural.com/people-first-language.html

Proposed Changes to Federal Employment Requirements for People with Disabilities

People with disabilities in the United States continue to be employed at lower rates than people without disabilities. Although the Americans with Disabilities Act (ADA) prohibits discrimination based on disability, differences in employment outcomes have persisted. Researchers and advocates have pointed to a range of factors, including physical and digital accessibility barriers and unexamined attitudes about disability, as possible contributors.

One federal policy intended to support more inclusive employment practices is Section 503 of the Rehabilitation Act of 1973. This law requires companies and organizations that do business with the federal government—known as federal contractors—to take proactive steps to recruit, hire, retain, and promote qualified individuals with disabilities.

In 2014, the U.S. Department of Labor issued updated guidance to clarify how contractors could meet these responsibilities. The goal was to help organizations identify and reduce barriers that might limit participation by people with disabilities in the workforce. The updates introduced several key elements:

• Voluntary self-identification: Applicants and employees could choose to confidentially disclose that they have a disability. This information was intended to help contractors assess the effectiveness of their efforts to support people with disabilities in the workforce.
• Utilization goal: Contractors were encouraged to aim for people with disabilities to comprise at least 7% of each job group. This figure was not a quota, but a benchmark for self-assessment.
• Data tracking and analysis: Contractors collected information on the number of applicants, new hires, and employees with disabilities. The intent was to evaluate progress and make informed adjustments to outreach, training, or workplace policies.

These measures were designed to help organizations assess whether their practices were reaching and supporting people with disabilities, and to guide efforts to improve access and opportunity in the workplace.

From 2014 to 2023, employment indicators for people with disabilities improved. The employment-to-population ratio increased by over 11 percentage points, and the unemployment rate for people with disabilities reached its lowest recorded level in 2023.

Analysts attribute this progress to several factors, including a strong post-pandemic labor market, expanded remote work opportunities, and possible impacts of workplace policies focused on including people with disabilities.

In June 2025, the U.S. Department of Labor proposed changes to the Section 503 regulations. If finalized, these changes would remove the requirement for federal contractors to invite voluntary self-identification of disability status and eliminate the current 7% utilization goal.

The U.S. Department of Labor referenced a recent executive order instructing federal agencies to review and, where appropriate, reduce specific diversity and inclusion requirements. It also noted that the Americans with Disabilities Act (ADA) generally limits disability-related inquiries until after a job offer has been extended.

Although the ADA restricts pre-employment questions about disability, the Equal Employment Opportunity Commission (EEOC) has clarified that voluntary self-identification is allowed under current law if it is properly structured and not used in hiring decisions.

The proposed changes may have several implications:

• Limited workforce data: Without voluntary self-identification or data collection, contractors may have fewer insights into the representation and career advancement of individuals with disabilities.
• Elimination of a consistent benchmark: The 7% utilization goal offered a common standard for assessing inclusion efforts. Its removal may lead to differing practices and expectations among contractors.
• Decreased data uniformity: In the absence of standardized reporting, it may be more challenging to identify trends or compare outcomes across organizations.
• Unclear implementation pathways: Without the structure previously provided by Section 503, contractors may require additional guidance to support fair and inclusive employment practices.

Once the proposed rule is published in the Federal Register, a 60-day public comment period will begin. During this time, individuals, employers, researchers, and organizations can submit feedback through Regulations.gov.

Those interested in the issue may choose to:

• Share comments about how the changes might affect hiring or keeping employees.
• Let others know about the proposed rule.
• Stay up to date with news from the U.S. Department of Labor.
• Talk with colleagues about how to support people with disabilities at work using data.

The final outcome of this process may influence how federal contractors approach the recruitment, hiring, and advancement of people with disabilities in the years ahead.

The future of employment for people with disabilities will be shaped not only by federal regulations, but by how individuals, employers, and communities choose to participate in the process. Whether through submitting a comment, sharing information, or reviewing internal practices, each action contributes to a broader understanding of what inclusion can look like in the workplace.

At Wiley’s Walk, we believe that inclusion begins with the idea that everyone belongs—not just in public life, but in the decisions and systems that affect daily experience. When policies are informed by the voices of those they impact, they are more likely to meet real needs and reflect practical realities.

As the public comment period opens, this is a moment to consider how hiring practices, workplace systems, and access to opportunity can continue to improve. However the rule-making process unfolds, one thing remains clear: lasting progress depends on thoughtful participation and a shared commitment to making room for everyone.

Across the country, Medicaid provides critical healthcare coverage and support services to millions of people, including older adults, veterans, people with disabilities, and low-income working families. One key component of Medicaid is the provision of Home and Community-Based Services (HCBS), which allow individuals to receive care in their homes rather than in institutional settings.

Recent developments in Congress have raised concerns about the future of these services. The U.S. Senate has approved legislation that includes more than $1 trillion in cuts to Medicaid over the next 10 years, along with changes to other federal health insurance programs. According to the Congressional Budget Office (CBO), nearly 12 million people could lose health coverage as a result.

The bill passed narrowly in a 51–50 vote, with the Vice President casting the tie-breaking vote. Compared to the House version, which proposed $800 billion in Medicaid reductions, the Senate bill introduces deeper cuts. In total, the CBO estimates that combined reductions to Medicaid, Medicare, and Affordable Care Act programs will reach $1.1 trillion. These cuts are partly intended to fund the extension of tax reductions and other federal spending priorities, including border security.

Proposed Changes to Medicaid Spending

The bill includes several policy changes intended to reduce overall Medicaid expenditures. These include:

• Work Requirements: Some Medicaid recipients would be required to work or volunteer at least 80 hours per month. The requirements would apply to parents of older children and to childless adults without disabilities.
• Provider Tax Restrictions: The legislation would limit the use of provider taxes—fees states collect from healthcare providers to increase federal Medicaid reimbursements.
• Rural Health Funding: To address concerns about the impact on rural healthcare access, the bill includes increased federal support for rural hospitals beginning in 2026.

According to the CBO, the expansion of work requirements alone could result in an additional $325 billion in Medicaid savings.

Provisions That Were Removed or Delayed

Some proposals were removed or postponed due to procedural limitations under Senate rules. These included:

• Accelerated reductions to provider taxes
• Restrictions on Medicaid coverage for non-citizens
• Limitations on gender-affirming care

According to Senate estimates, these exclusions prevented roughly $250 billion in additional reductions.

Arguments For and Against

Supporters of the legislation contend that the changes are designed to promote personal responsibility, reduce fraud, and encourage employment among those who are able to work. They emphasize that Medicaid should provide support while also reinforcing pathways to self-sufficiency.

Critics note that many Medicaid recipients are already employed. The Kaiser Family Foundation reports that 64% of adult Medicaid enrollees aged 19 to 64 are working, with 44% employed full-time. Opponents caution that additional administrative requirements—such as verifying work status—could lead to loss of coverage for eligible individuals due to paperwork challenges or misunderstandings.

Potential Implications

This legislation represents a significant shift in federal health policy. Key areas of potential impact include:

• Loss of Coverage: The CBO projects that millions may lose access to Medicaid, increasing pressure on hospitals, clinics, and local governments.
• Family and Caregiver Impact: Work requirements may disproportionately affect low-income individuals and caregivers balancing employment with care responsibilities.
• Strain on Rural Providers: While new funding is included for rural hospitals, it may not fully offset the broader effects of reduced Medicaid funding.
• Administrative Burden: Implementing and monitoring new eligibility rules may introduce complexity and confusion for both recipients and state agencies.
• Legal and Political Challenges: The close vote margin and contested provisions suggest the potential for litigation and ongoing policy debate.

How to Share Your Perspective

Those who wish to contact their elected representatives can use the following sample letter:

Dear Representative [Name],

I am writing to share my concerns about the proposed cuts to Medicaid in the Senate’s version of the reconciliation bill.

These reductions could significantly impact individuals who rely on Medicaid-funded services to live independently, including older adults, people with disabilities, veterans, and low-income families.

Home and Community-Based Services (HCBS) in particular provide essential support that allows people to avoid institutional care and receive services in their homes and communities. Because HCBS is considered optional under Medicaid, it may be among the first services states reduce or eliminate in response to federal funding cuts.

I urge you to consider the long-term effects of these reductions and to work toward solutions that protect access to care, support family caregivers, and allow individuals to remain in the setting that best meets their needs.

Thank you for your attention to this matter.

Sincerely,
[Your Name]
[City, State]

Resources for Engagement

• Find your U.S. Representative: https://www.house.gov/representatives/find-your-representative
• Contact Senator Chuck Schumer (NY): https://www.schumer.senate.gov/contact/email-chuck
• Contact Senator Kirsten Gillibrand (NY): https://www.gillibrand.senate.gov/contact/email-me

Staying informed and engaging with policymakers can help ensure that healthcare decisions reflect the needs and priorities of diverse communities.

A Note from Wiley’s Walk

At Wiley’s Walk, we focus on the intersection of public policy and daily life—particularly how systems and decisions affect individual choice, access to care, and community inclusion.

Our goal is to provide clear, balanced information that helps readers understand complex issues and engage constructively. We believe thoughtful, informed dialogue plays an essential role in shaping policy that meets the needs of individuals, families, and communities.

For more articles and insights, visit: https://www.wileywalk.com

Most things don’t end with certainty. They drift off in silence, or stop before anyone realizes they have finished. Some moments and circumstances remain standing, half-built. There are conversations left unresolved, doors left ajar, and paths taken without understanding why.

Plans often fade not because they fail, but because they erode—worn down by delay, avoidance, or distraction. Emotions are offered without clarity, and decisions are made without enough intent to leave a lasting mark.

This piece speaks to those spaces—the in-between moments.
It turns toward the structures that were started but never completed, the gestures interrupted before they could become action, and the silences that hold meaning, even when no one acknowledges them.

It is about how presence can exist without participation, how opportunities can pass unnamed, and how the absence of conclusion does not erase the fact that something happened. Even unfinished things leave a trace.

Silent Drafts

By Kerry Ann Wiley

I. Framework
 A structure stands—
  not new,
   not whole.
 Access is conditional,
  dependent on
   who names the door.

II. Movement
 Steps were taken.
  Direction?
   Irrelevant.
 No signs remain,
  only soft ground.

III. Language
 A phrase was offered—
  unmarked,
   plain.
 No punctuation.
   Unclear.
   Not yet decided.

IV. Intention
 Motive: obscured.
 Affection—
  a resemblance,
   not a confirmation.
 It audits instead of comforts.

V. Witnesses
 Some watched.
  They said nothing.
   Their silence:
    not consent,
    not refusal.
  Just presence—
  or the absence
   of leaving.

 Others did not arrive.
  Choice?
   Only partially.

VI. Interruption
 What arrests the hand
  before it moves?
 What presses in
  when the ceiling drops
   without a sound?

VII. Opportunity
 It was mentioned.
  Not defined.
   Not repeated.

VIII. Threshold
 A door opened—
  not because it was unlocked,
   but maybe because
    no one noticed
    it was there.

IX. Pathways
 Was there a route?
  Possibly.
   Maybe implied,
    or inferred,
     or misread.

X. Completion
 Who declares success
  when the base was flawed?
 Who laid the first stone?      

XI. Absence
 It accumulates—
  not in the rubble,
   but in corners left
    untouched,
    uncontested,
     unsought.

XII. Record
 Possibility remains
  unscheduled.
 The ledger holds
  only those
   who were seen
    in time.

XIII. Interpretation
 The story survives
  not in what is told,
   but in what is
    deliberately
     withheld.

Not all stories are remembered because they were completed. Some remain unfinished, growing louder with time. They linger in the choices nearly made, in the gestures that rose and then fell away, unanswered. A door left open—whether by intention or by neglect—still leads somewhere.

For over five decades, I have lived with a disability, a journey shaped by persistence and the collaborative support of those around me. During this time, I completed both high school and college, established a fulfilling career, and achieved home ownership. These milestones reflect the importance of accessible opportunities and the collective efforts that have made inclusion and participation possible.

From an early age, my family instilled a mindset of possibility. Obstacles were never endpoints. If there was a mountain in my path, the approach was simple: climb it, go around it, or go through it. There was always a way. That philosophy became my compass.

So imagine my surprise when, during a quiet conversation, someone close to me said, “We wondered if you would get here.” This was someone who had walked much of the journey alongside me. The words were offered with affection and were meant to acknowledge the experiences I had navigated and the progress I had made. Even so, they lingered with me in an unexpected way. They weren’t offensive, but they did prompt a deeper reflection. I began to consider what had truly made this journey possible from the start.

What if I had grown up hearing, “You can’t”? What if the expectations had been lower, the encouragement more cautious, the belief more conditional? The word “can’t”—when repeated enough times—becomes more than a limitation. It becomes a boundary, an invisible fence around what a person believes is possible. Over time, it doesn’t just shape opportunities—it shapes identity.

I’ve seen how the word “can’t” can quietly shape the experiences of others—bright, capable individuals who were not given the tools, the trust, or the opportunity to try. It can be found in the quiet resignation of someone who has stopped asking for more, perhaps having learned over time not to expect access or opportunity. It’s present in the paths not taken, when no one ever said, “You should,” or “You could.” The influence of “can’t” is often subtle, but it can linger. Over time, it can subtly limit possibilities, shaping both the path a person is able to follow and who they have the chance to become.

I am here because I was surrounded by people who viewed challenges through a lens of possibility. Their belief didn’t eliminate the barriers—but it shaped how I approached them. It encouraged me to look for openings where others might see only walls. I am deeply grateful for that foundation. It influenced not just the path I followed, but how I’ve come to understand what’s possible—for myself and for others.

Still, I find myself reflecting on what happens to those who are not met with the same perspective. What becomes of someone who grows up under the shadow of doubt, surrounded by more restrictions than encouragement? The word “can’t” may seem simple, but over time, it closes doors—internally and externally. It narrows vision, limits choices, and eventually reshapes a person’s sense of what is even worth reaching for. I think often about the lives that could have unfolded differently if someone had simply said, “Let’s see what’s possible.”

These reflections remain with me. They remind me that creating space for possibility—for the chance to try, to strive, to belong—is not a matter of idealism. It is a matter of equity, of dignity. My story should not stand out; it should be one of many. And that will only happen when we replace the quiet doubt of “can’t” with a shared commitment to “let’s find a way.”

Families, caregivers, and disability advocates are paying close attention as the Senate considers a proposal that could further reduce Medicaid funding. This development follows similar cuts recently passed by the House. Although lawmakers describe the legislation as a strategy to reduce costs, many within the disability community are concerned. They believe these changes may seriously affect access to vital services and supports.

The Senate proposal outlines several changes to Medicaid. It includes limits on how states can fund the program, stricter eligibility checks, and new work requirements for many recipients. Lawmakers have framed these changes as efforts to improve efficiency and reduce waste. However, many community advocates disagree. They believe the burden of these reforms will likely fall on the people and services that Medicaid was created to support.

Medicaid offers a broad range of supports for people with disabilities. A significant portion of this support comes through home and community-based services, often referred to as HCBS. These services include help with daily tasks, in-home care, and programs that enable individuals to live and participate in their communities. Without them, many would have to rely on more restrictive, facility-based settings. Although these services are considered “optional” under federal law, they form the foundation of independence and inclusion for millions of people.

Historically, when the federal government has reduced Medicaid funding, states have responded by scaling back their home and community-based services. These cutbacks have resulted in, and continue to contribute to, lengthier waiting lists, reduced care hours, and a shrinking pool of providers equipped to handle the growing demand. As a consequence, those who depend on consistent and individualized support frequently face service delays or disruptions.

Families may need to step in to cover gaps in care, which can sometimes involve personal and financial strain. The workforce that delivers these services is already under considerable pressure, and additional funding constraints could make it more difficult to maintain staffing levels and meet the demand for care.

While the current Senate proposal does not directly reduce funding for services specific to people with disabilities, analysts observe that a large share of optional Medicaid spending—about 86 percent—is directed toward older adults and individuals with disabilities. Therefore, broad reductions in Medicaid funding could disproportionately affect these groups, particularly those who use services designed to help them live independently and remain part of their communities.

More than a thousand organizations nationwide have expressed concern about the proposed Medicaid cuts, warning that such changes could disrupt both the continuity and quality of care. They emphasize that federal policy shifts often have swift and tangible consequences, especially for individuals who rely on these services within their own communities.

Reducing funding for home and community-based services impacts much more than just healthcare. These services enable people to live safely and with dignity in their own homes. They also relieve pressure on families, employers, and local economies. When support is available at home, family members can keep working and stay involved in their communities. Without it, many are forced to step away from jobs to provide full-time care. This leads to workforce disruptions and puts additional financial stress on households. The effects are widespread and lasting.

If these services are reduced, more individuals may need to rely on institutional or less personalized care, which may not align with their specific needs or preferences. This could increase the responsibilities of family members who are already managing work, care-giving, and financial obligations. As a result, families might need to adjust their employment or daily routines, potentially affecting their overall stability and participation in the workforce and local economy.

As Medicaid discussions continue in Washington, advocates for people with disabilities and older adults are urging policymakers to recognize the program’s full impact—not just on budgets, but on individual stability, independence, and well-being.

This is an important time to consider how public policy aligns with widely held values and impacts the daily lives of individuals who use essential services. Decisions about Medicaid involve more than administrative details—they influence whether people can live independently, exercise personal choice, and participate in community life.

As the Senate evaluates potential changes to Medicaid, questions have emerged about possible unintended effects: reduced access to home- and community-based services, increased demands on family caregivers, and new challenges to community integration. For those who rely on these supports, it is a significant moment to share experiences and remain involved in the policy process.

Medicaid represents more than a budgetary item; for many, it is a foundational support that makes it possible to work, live independently, and participate in their communities.

As the policy discussions about Medicaid and related services continue to unfold, it highlights not only matters of budget and resource allocation but also the underlying values that shape how care and support systems are designed. At every stage of this conversation, it is important to recognize that each policy choice has real-world implications—and that rebuilding inclusive systems, once disrupted, can be a complex and slow process.

Who Gets to Belong? A Reflection on Disability, Inclusion, and System Readiness

William Harkness’s essay is thoughtful, personal, and carefully constructed. It surfaces a reality that many within the disability community have quietly navigated for years: that the principles of inclusion, while widely embraced, often diverge from how inclusion is enacted in everyday environments.

At the heart of his argument—outlined compellingly in The Disability Caste System: Who Gets to Be “Disabled Enough”?—is the observation that different types of disabilities are not met with the same degree of acceptance or accommodation. Disabilities that are more visible, predictable, or familiar—such as mobility impairments—are often acknowledged and supported with greater ease.

Others, particularly those that affect communication, processing, or mental health, tend to generate uncertainty or hesitation. A professional with depression, for example, may find that their need for flexibility is interpreted as inconsistency, while a colleague with a physical impairment may be perceived as more straightforward to support.

The issue is not one of merit or capability, but of how closely someone’s needs align with what systems are already designed to manage. Mr. Harkness calls this phenomenon a “disability caste system,” where proximity to established norms affords greater access and legitimacy.

This dynamic is not always the result of explicit bias. Explicit bias refers to beliefs or decisions that are knowingly prejudiced or discriminatory, where the exclusion of someone is intentional and conscious. What Mr. Harkness describes is often more subtle. In many cases, choices about who to accommodate and how to do so are shaped by practical concerns such as limited resources or the desire for simplicity.

Even when decisions are made with good intentions, the outcome can still lead to exclusion. Individuals who fit easily into current systems are welcomed. Others, whose presence requires adjustments or flexibility, may be left out—not because they are less capable, but because change is perceived as too costly.

The essay gives several clear examples. Oral Deaf professionals, for instance, are often hired or promoted more readily than signing Deaf colleagues. This is not always because they are more qualified, but because they ask less of the system around them. Oral Deaf refers to Deaf individuals who communicate primarily through speech, lip reading, and assistive technology like hearing aids or cochlear implants.

Many oral Deaf individuals are educated in environments where spoken language and lip-reading are emphasized rather than sign language. This is one of several valid communication approaches within the Deaf community. In some workplace settings, spoken communication may be perceived as more compatible with existing structures, based on the assumption that fewer adjustments such as providing interpreters or modifying communication protocols will be needed. As a result, Deaf professionals who primarily use sign language may be unintentionally passed over, despite having comparable or exceptional qualifications.

A similar pattern can be seen in hiring initiatives aimed at neurodivergent candidates, particularly those on the autism spectrum. The term neurodivergent refers to individuals whose brains process information, learn, or communicate in ways that differ from what is considered typical. This includes autism, ADHD, dyslexia, and other variations that influence how individuals engage with their surroundings. These hiring programs often highlight strengths such as focus, technical ability, and reliability, which tend to align closely with conventional workplace expectations.

Candidates who communicate in expected ways or fit neatly into structured environments tend to progress more easily. Others, who may use alternative communication methods, work in non-linear ways, or challenge long-standing cultural habits, are often screened out early. These decisions are usually presented as matters of fit or readiness. In practice, they reveal a discomfort with needs that require deeper structural flexibility or cultural shift.

Over time, these patterns shape not only who gets hired, but also who becomes visible in leadership, who is seen as a role model, and whose needs are considered legitimate. Mr. Harkness describes this as lateral ableism. It is a kind of internal sorting that happens within disability communities as well as outside them. It often favors those who appear easiest to accommodate, while placing heavier burdens on others to prove their worth or suppress their needs.

Mr. Harkness does not suggest that inclusion efforts are without value. His message is that inclusion should not be defined by convenience. When systems choose to accommodate only those who ask the least of them, they are not advancing equity. They are preserving comfort. Real inclusion is not always simple. It may involve discomfort, adjustments, or slower timelines. It may require people to reexamine habits or question assumptions. These are not failures. They are signs of growth.

The process of becoming more inclusive does not require dramatic change all at once. Often it begins with small but important questions. Who is consistently supported in this environment? Who is quietly struggling? Which needs are met quickly, and which are put off or explained away? These questions do not assign blame. They open the door to greater awareness.

For those in leadership, this reflection can help identify where systems fall short. For those navigating exclusion, the words in this essay may offer clarity and recognition. For those working to build better structures, the message is simple. Inclusion is not measured by how easily someone fits into what already exists. It is measured by how far a system is willing to stretch to include those who do not.

This kind of work is not always visible. It does not always reward speed or certainty. It moves more like water—steady, deliberate, reshaping what it touches. Over time, it finds the places that have gone ignored and brings them back into view. There is dignity in that approach. There is meaning in choosing presence over performance, awareness over ease. And there is quiet power in every decision that says: belonging should not depend on being simple to accommodate.

Many people think of accessibility as something visible: a ramp leading to a door, a button that opens it, or a sign that points the way. In this view, accessibility is functional, mechanical, and reactive. It is often reduced to a checklist of features, something to be installed after the fact rather than considered from the beginning. Yet accessibility is not merely a feature of good design. It is a mindset, an ethic rooted in the principle that no individual should have to work harder than others just to be present, to engage, or to feel welcome.

Despite growing awareness of inclusion, there remains a persistent belief that accessibility is optional, something relevant only to a specific group. This belief is not always expressed outright. Often, it is assumed unconsciously. Yet this assumption, this idea that accessibility is someone else’s concern, continues to reinforce barriers, often unnoticed by those who don’t face them.

Part of the issue lies in how disability is commonly imagined. It is typically associated with the most visible markers: someone using a wheelchair or walking device, or a white cane on a sidewalk. These images hold a powerful sway over public perception, shaping understanding in ways that ultimately constrain a fuller grasp of exclusion.

While some forms of exclusion are overt and recognizable, many others emerge more subtly, embedded within the routine decisions that shape everyday design. These decisions often overlook the sensory dimensions through which people engage with their environments, thereby marginalizing those whose experiences fall outside the assumed norm.

Sight
Visual impairments are not always absolute, as many individuals live with partial vision, reduced contrast sensitivity, or have difficulty reading small text. Many environments are designed with the assumption that everyone has ideal vision, an oversight that can unintentionally exclude many people. For example, websites frequently use low contrast fonts that are difficult to read, signage is often poorly lit or positioned too high to be easily seen, and instructions may rely solely on color coding without providing text alternatives.

While these design choices are not always made with the intent to exclude, they still create significant barriers for individuals with visual impairments. Clear, high contrast, and scalable design elements are beneficial for all users, but for those with limited vision, they are not just helpful—they are vital. Vision differs from person to person, and inclusive, thoughtful design should reflect that reality.

Hearing
Barriers to auditory access often arise not from what is present, but from what is missing. When announcements come through unclear speakers, when meetings proceed without captions, or when videos are shared without transcripts, individuals who are deaf or hard of hearing may be left without access to important information.

These situations are not uncommon; they occur regularly and reflect a broader oversight. They can unintentionally suggest that the needs of all listeners were not fully considered. Ensuring that information is available in spoken, written, and visual forms should be a standard part of inclusive design, rather than viewed as an added feature.

Touch
In an era of sleek surfaces and minimal interfaces, the sense of touch is frequently overlooked. Glass panels now dominate phones, elevators, and appliances. While they may appear modern, they often lack tactile feedback, making them difficult or impossible to use for individuals who are blind or who experience limited sensation.

Raised buttons, textured surfaces, and Braille are not outdated features; they are tools that allow more people to navigate independently. The assumption that all users rely on sight and fine motor skills fails to reflect the diversity of how people interact with their surroundings.

Smell
Scent is rarely mentioned in conversations about access, yet it plays a significant role in whether an environment is usable. Strong fragrances used in cleaning products, air fresheners, or perfumes can trigger migraines, asthma, or sensory overload.

For individuals with scent sensitivities or certain neurological conditions, these environments are not just unpleasant—they can be dangerous. Creating spaces that are low-scent or fragrance-free is a small shift with a large impact. It signals consideration, safety, and care.

Taste
Although taste might seem unrelated to accessibility, it is central to shared experiences. Meals are often the setting for connection—in meetings, events, or informal gatherings.

For individuals with allergies, medical dietary restrictions, or sensory aversions, such moments can sometimes feel isolating. The recurring experience of having limited or no safe options, or needing to politely decline food, can create a quiet sense of being overlooked.

These small experiences may build up over time, contributing to a feeling of exclusion. Offering clearly labeled and inclusive food choices helps ensure that everyone feels acknowledged and welcomed, not just those whose needs are more frequently anticipated.

Understanding Why It’s Dismissed
Why, then, is accessibility so often overlooked? In many cases, it’s because well-executed accessibility tends to go unnoticed. A ramp that isn’t personally needed blends effortlessly into the surroundings. Captions that aren’t read slip quietly into the background.

A scent-free policy might appear as just another line of text, easily missed by those it doesn’t directly impact. When something functions smoothly for one person, it can be easy to overlook the fact that, without those accommodations, someone else might not have been able to participate at all.

This lack of awareness is not evidence that accessibility is unnecessary. It is a reminder that those who benefit from accessible design are not always visible. The absence of complaints does not indicate the absence of barriers. A solution that serves one individual may still fail to meet the needs of another.

When accessibility continues to be treated as optional, it can quietly suggest that not everyone was fully considered from the start. It suggests that inclusion is a secondary concern, rather than a fundamental part of the design.

Toward a More Inclusive Standard
Designing with the five senses in mind isn’t about adding extras; it is about broadening the default to reflect the diverse ways people live, feel, and connect. Instead of asking, “Is this good enough?” the more crucial question becomes, “Who might be excluded by this?” That shift transforms design from a solution into an invitation.

Accessibility often goes unnoticed when it is done well—but poor accessibility never does. That fact alone makes it clear: accessibility isn’t a bonus; it is a baseline. It is not a special favor or an extra step. It’s common sense—a foundational principle that fosters participation, inclusion, and a genuine sense of belonging.

This is not merely a matter of policy or law; it speaks to a deeper respect for each individual—the belief that everyone deserves the same opportunities to engage with their surroundings. Accessibility means giving everyone an equal opportunity to participate.

It goes beyond physical accommodations to embrace all five senses—sight, hearing, touch, smell, and taste—because these are how we connect, communicate, and find belonging. Whether it’s entering a building, sharing a meal, or joining a conversation, every person deserves to feel included, respected, and truly part of the community.