The Unfinished Work of the ADA
Accessibility Without Competency Is Not Equity
By Dr. Seth Keller
Summary: The ADA expanded accessibility and inclusion, but many people with disabilities still face health inequities rooted in clinical care. Limited disability-informed training can lead to miscommunication, diagnostic overshadowing, and delayed diagnoses. The article calls for disability competency to become a core part of healthcare education so clinicians can provide respectful, person-centered, equitable care.
“The ADA opened the door. The unfinished work now lies in ensuring the healthcare workforce is prepared to care for the people who pass through it.”
More than three decades after the passage of the Americans with Disabilities Act (ADA), the United States has made extraordinary progress in reshaping how disability is understood within American society. The ADA transformed not only the legal framework governing access and accommodation, but also the moral architecture through which disability came to be viewed. It helped move disability away from the language of charity, benevolence, and exception and toward the language of rights, dignity, inclusion, and equal participation.
The impact of that transformation has been profound. The ADA reshaped expectations across public life—within education, employment, transportation, public spaces, and civic institutions. Ramps were built, entrances redesigned, communication accommodations increasingly recognized, and barriers that had long been accepted as inevitable were finally challenged. These changes reflected something fundamental: exclusion is rarely inevitable; it is more often the consequence of systems, structures, and assumptions that can be changed.
Healthcare evolved as part of that broader transformation. Hospitals and clinics became increasingly attentive to physical accessibility and accommodation obligations. Examination spaces became more accessible. Interpreter services became more available. Policies surrounding mobility access, communication support, and nondiscrimination became more visible within health systems.
And yet, despite these important advances, a difficult truth remains.
For many people with disabilities, healthcare remains profoundly inequitable.
The greatest barriers are no longer always architectural.
They are clinical.
A person may successfully enter a healthcare setting that is physically accessible and fully compliant with legal standards, yet still receive care that falls far short of equity. The barrier is no longer simply the doorway. The barrier is what happens after the doorway.
Symptoms may be misinterpreted or minimized. Pain may go unrecognized when expressed behaviorally rather than verbally. Communication differences may be mistaken for diminished capacity. New neurologic symptoms may be attributed to longstanding disability rather than investigated as evidence of new disease. Behavioral changes may be interpreted as psychiatric or developmental manifestations when they are, in fact, early indicators of infection, seizure activity, metabolic illness, neurodegeneration, medication toxicity, or untreated distress.
This reveals one of the most important yet underrecognized truths in modern healthcare:
Accessibility without competency is not equity.
That statement carries particular weight in the care of individuals with intellectual and developmental disabilities (IDD), autism, cerebral palsy, genetic syndromes, communication disabilities, sensory disabilities, and those aging with childhood-onset conditions.
Across decades of caring for adults with IDD, I have repeatedly witnessed a troubling and deeply consequential pattern. Patients and families often encounter clinicians who are compassionate, intelligent, and genuinely motivated to help, yet remain fundamentally underprepared to interpret clinical change in individuals whose neurologic, cognitive, communicative, or behavioral baselines differ from conventional expectations.
This observation leads to an important realization.
The inequities experienced by people with disabilities are not always rooted in indifference or lack of compassion.
More often, they reflect something structurally embedded within healthcare itself.
This is not primarily a problem of compassion.
It is a problem of training.
That distinction matters because it changes where we look for solutions.
Much of health professions education still provides little meaningful preparation in disability-informed care. This remains true across medicine, nursing, dentistry, pharmacy, rehabilitation sciences, psychology, social work, and allied health professions. Many clinicians receive minimal training in communicating with individuals who use nontraditional expressive modalities, recognizing distress in atypical presentations, incorporating family and caregiver expertise appropriately, supporting autonomy and decision-making, or understanding how childhood-onset disabilities evolve across adulthood and aging.
These gaps are not abstract educational deficiencies.
They directly influence diagnosis, treatment, trust, and outcomes.
Yet disability competence cannot be reduced solely to diagnostic knowledge or familiarity with disability-specific medical conditions. True competency requires something more foundational: the ability to see and engage the person before the diagnosis.
For many individuals with disabilities, healthcare has too often been shaped by reductionism. People are frequently viewed primarily through the lens of deficits, impairments, behavioral challenges, or diagnostic labels. Their individuality, communication style, strengths, adaptive capacities, values, and lived experiences may become secondary to what is written in the medical record.
This dynamic carries consequences far beyond emotional harm.
When clinicians fail to understand how a person communicates discomfort, processes sensory information, establishes trust, or experiences the world, the therapeutic relationship weakens. Communication becomes less reliable. Clinical reasoning becomes less accurate.
This is where values become inseparable from competency.
Respect, dignity, curiosity, humility, and relational presence are not soft ideals existing outside clinical rigor. They are essential components of good medicine.
A neuroaffirming approach offers an important framework for this next evolution in healthcare. Neuroaffirming care recognizes neurologic, developmental, cognitive, and communicative differences as meaningful dimensions of human diversity while still acknowledging disability-related challenges and medical complexity. It resists defining individuals exclusively through pathology.
A neuroaffirming clinician asks not only, What is wrong? but also, Who is this person, how do they experience the world, and what must I understand to care for them well?
That shift is profound.
It moves healthcare from transactional treatment toward relational understanding.
Dignity is not conferred by competence alone. Yet competence without dignity is equally insufficient.
The highest standard of clinical excellence requires both.
Any honest discussion of disability and healthcare must also confront a more difficult reality: the persistent influence of ableism within medicine, healthcare culture, and society itself.
The training gaps we see today did not emerge in isolation. They are rooted in a long history in which disability was frequently understood through frameworks of deficit, dependency, abnormality, institutionalization, and diminished social worth. For generations, people with disabilities were marginalized, segregated, excluded from education and employment, denied autonomy, or spoken about rather than spoken with. Medicine, despite its healing mission, has not been immune from these historical forces.
Ableism in modern healthcare rarely presents as explicit hostility. More often, it manifests through assumptions so normalized they may go unrecognized even by well-intentioned clinicians. Such assumptions may include beliefs that people with disabilities are less capable of understanding their own bodies, less able to participate meaningfully in decision-making, less reliable as reporters of symptoms, or less likely to benefit from intervention.
These biases profoundly distort clinical reasoning.
When disability becomes the dominant explanatory lens through which clinicians interpret symptoms, a dangerous narrowing of perspective occurs. New symptoms may be prematurely attributed to baseline disability. Distress may be discounted. Behavioral changes may be pathologized without adequate curiosity about underlying medical causes.
This is precisely why disability competence must involve more than knowledge acquisition alone.
It requires reflective practice and cultural humility. It requires clinicians to examine inherited assumptions about disability, communication, autonomy, quality of life, and human worth. It requires a willingness to recognize that many biases influencing care are not consciously chosen yet still shape decisions in consequential ways.
The goal is not to romanticize disability, nor to deny medical complexity or suffering.
Rather, it is to reject the longstanding belief that disability diminishes personhood.
That may be among the most important transformations healthcare still has left to achieve.
One of the most dangerous manifestations of these failures is diagnostic overshadowing—the tendency to attribute new symptoms, functional decline, behavioral changes, or distress to a person’s underlying disability rather than considering new, potentially treatable medical conditions.
Diagnostic overshadowing remains one of the most pervasive forms of clinical harm affecting people with disabilities.
A person with cerebral palsy develops progressive gait instability, yet cervical myelopathy or stroke is never seriously considered.
An adult with Down syndrome experiences subtle cognitive decline, but Alzheimer disease is recognized only after profound functional loss.
An autistic adult becomes withdrawn or agitated, and clinical attention focuses on behavior while pain, seizure activity, infection, or gastrointestinal illness remain undetected.
These are not rare occurrences.
Nor are they inevitable.
They are frequently preventable.
That reality should force us to confront a difficult question:
How can healthcare systems credibly claim to deliver equitable care while continuing to graduate professionals who have never been meaningfully trained to care for one of the largest medically underserved populations in the nation?
Encouraging initiatives such as Project DIME have begun to elevate disability inclusion within medical education and challenge longstanding curricular blind spots, helping catalyze a broader national conversation about what true disability competence should require of the healthcare workforce. These efforts represent important early steps, but far broader systems change remains necessary.
The unfinished work of the ADA in healthcare is therefore no longer primarily architectural.
It is educational.
The next frontier of disability rights in healthcare cannot be defined solely by ramps, elevators, accessible examination tables, communication accommodations, or nondiscrimination policies important as these remain.
It must address whether the healthcare workforce is truly prepared to care for people with disabilities with competence, humility, confidence, and skill.
Disability competence can no longer be treated as optional knowledge, elective exposure, or niche expertise relevant only to a limited group of specialists.
Disability is not a specialty issue.
It is a core healthcare competency issue.
Every clinician, regardless of discipline or specialty, will care for people with disabilities.
Therefore, every training pathway should prepare clinicians accordingly.
This requires meaningful integration of disability-informed education into undergraduate health professions education, graduate training, specialty education, continuing professional development, accreditation standards, and competency frameworks.
The future of disability inclusion in healthcare will not ultimately be defined by whether people with disabilities can physically enter healthcare spaces.
It will be defined by what happens after they enter.
Will they be understood?
Will communication differences be respected rather than pathologized?
Will diagnostic rigor remain equal?
Will dignity remain intact?
Thirty-five years after the ADA, the next chapter of disability rights in healthcare has come into focus.
The next chapter demands more than access. It demands a healthcare workforce prepared to deliver care grounded in competency, dignity, humility, and justice.
The ADA opened the door.
The unfinished work now lies in ensuring that the healthcare workforce is prepared to care for the people who walk, roll, communicate, or are carried through it.
Only then can healthcare become not merely accessible, but equitable.
Only then can we begin to complete one of the most important unfinished chapters of the ADA—and move closer to a healthcare system worthy of the dignity, humanity, and full citizenship of people with disabilities.
About the Author
Seth Keller, MD
Neurologist, Neurology Associates of South Jersey
Dr. Seth Keller specializes in the evaluation and care of adults with Intellectual and Developmental Disabilities (IDD) with neurologic complications. Dr. Keller is on the Executive Board of the Arc of Burlington County as well as on the board for The Arc of New Jersey Mainstreaming Medical Care Board. He is the co-president of the National Task Group on Intellectual Disabilities and Dementia Practices (NTG). He is also the founder and past chair of the Adult IDD Section with the American Academy of Neurology.
Dr. Keller is actively involved in national and international IDD health education as a speaker, and webinar and workshop participant. He is a co-author on a number of articles and book chapters relating to aging and dementia in those with IDD.