Two Sisters, One Preventable Gap: How the US Health System Fails Adults with Intellectual and Developmental Disabilities

Two sisters in their forties live remarkably parallel lives. Both work, both have families, and both face the same health risks as anyone else their age. But when it comes to preventive care, their paths diverge sharply. One sister receives routine cancer screenings, immunizations, and annual checkups. The other, who has an intellectual disability, has gone years without a single mammogram. This scenario, described in a recent narrative review published in the Journal of General Internal Medicine, captures a systemic failure that Harvard Medical School researchers Romila Santra, Surya Vamsi Pulukuri, and Niraj Sharma argue is both preventable and widespread across the United States.

The review, which synthesizes evidence on health disparities affecting adults with intellectual and developmental disabilities, documents a pattern of inequity that spans cancer screenings, immunizations, and routine preventive services. Adults with these disabilities are significantly less likely to receive mammograms, Pap smears, and colorectal cancer screening than the general population. The gap is not explained by differences in health insurance coverage or by differences in the prevalence of health risks. Instead, the researchers identify a complex web of barriers that operate at the level of the patient, the provider, and the health system itself.

At the patient level, communication difficulties, sensory sensitivities, and anxiety about medical procedures can make routine screenings feel overwhelming. Many adults with intellectual disabilities find the environment of a typical clinic overstimulating, and the procedures themselves can be confusing or frightening. These challenges are not trivial, but the researchers argue that they are also not insurmountable. Simple accommodations, such as low-stimulus clinic environments, clear communication, and additional time, can make routine care feel manageable rather than overwhelming.

At the provider level, clinicians may lack training in caring for adults with intellectual and developmental disabilities, and some may hold assumptions about the value of preventive care for this population. Studies cited in the review suggest that some clinicians believe screenings are less important for adults with disabilities, an assumption the researchers argue is both incorrect and harmful. Clinician education and awareness are essential to correcting these assumptions and ensuring that all patients receive the same standard of care.

At the health system level, the barriers are structural. Adults with intellectual and developmental disabilities are more likely to be covered by Medicaid, which reimburses providers at lower rates than private insurance. This creates a financial disincentive for providers to accept these patients, and the researchers argue that reimbursement reform is essential to addressing this structural barrier. The system also lacks low-stimulus clinic environments and other accommodations that would make routine care feel manageable for adults with sensory sensitivities.

The consequences of these barriers are serious. Adults with intellectual and developmental disabilities who go without routine cancer screenings are diagnosed at later stages, when treatment is less effective. The researchers argue that this is a preventable form of harm, and that simple accommodations and system reforms could eliminate it. The review also documents disparities in immunization rates, with adults with disabilities less likely to receive routine vaccines than the general population.

The researchers propose a range of solutions. At the patient level, they recommend low-stimulus clinic environments, clear communication, and additional time. At the provider level, they recommend clinician education and awareness. At the health system level, they recommend reimbursement reform and the creation of accommodations that would make routine care feel manageable for adults with sensory sensitivities. They also recommend the creation of low-stimulus clinic environments and other accommodations that would make routine care feel manageable for adults with anxiety about medical procedures.

The review also highlights the importance of the patient-provider relationship. Adults with intellectual and developmental disabilities who have a trusted provider are more likely to receive routine preventive care. The researchers argue that building these relationships is essential to eliminating disparities, and that simple accommodations, such as additional time and clear communication, can make routine care feel manageable rather than overwhelming.

The researchers argue that the failure to provide preventive care to adults with intellectual and developmental disabilities is a systemic problem that requires systemic solutions. They argue that simple accommodations and system reforms could eliminate a preventable form of harm, and that the time to act is now. The review serves as a call to action for clinicians, health systems, and policymakers to eliminate disparities and ensure that all patients receive the same standard of care.

The clinical vignette that opens the review is worth pausing on, because it illustrates how small, inexpensive accommodations can determine whether a person receives care at all. The sister with Down syndrome went roughly two decades past the recommended start of cervical cancer screening before a specialized gynecological clinic used picture-based explanations and carefully timed anxiolytic medication to complete her first Pap smear. The result was normal. Nothing about that outcome required advanced technology or extraordinary resources; it required a clinic willing to adapt its routine. The authors use this example to make a broader point: the gap in preventive care for adults with intellectual and developmental disabilities is not primarily a problem of medical knowledge, since the screening tests themselves are well established, but a problem of delivery.

The epidemiological backdrop reinforces why this delivery gap matters. Life expectancy for people with intellectual disability has improved substantially over recent decades, which means this population now lives long enough to face the same age-related cancer and cardiovascular risks as everyone else. Yet studies cited in the review show that adults with intellectual disability in the United States die at higher rates from conditions that are considered preventable or treatable when caught early. International evidence points in the same direction: a Danish cohort study found elevated potentially avoidable mortality among adults with intellectual disability, and a large Dutch cohort documented higher cancer-related mortality in this population. When screening is deferred or skipped, the predictable downstream effect is later-stage diagnosis, and a population-based study found that adults with intellectual or developmental disabilities are more likely to present with stage IV breast, colorectal, and lung cancers.

The review also situates the problem within the sheer size of the population involved. Data from the Residential Information Systems Project indicate that hundreds of thousands of Americans receive state-funded services for intellectual and developmental disabilities, and broader prevalence estimates suggest millions of adults are affected. Even if the per-person screening gap were modest, the population-level consequence would be substantial. The fact that disparities have persisted across successive waves of the National Health Interview Survey, from 1999 through 2018, suggests this is not a transient artifact of any single policy environment but a durable feature of how care is organized.

One underappreciated dimension the review explores is the role of caregivers and family members. Qualitative work with relatives of women with intellectual disability shows that family members often serve as gatekeepers for screening, sometimes because they underestimate the person’s cancer risk and sometimes because they want to protect them from distressing procedures. Paid caregivers face their own constraints, including limited time, unclear institutional expectations about whose responsibility screening is, and discomfort with assisting with intimate examinations. Because many adults with intellectual disability depend on others to schedule, transport, and support them through appointments, any intervention that addresses only the clinical encounter while ignoring the caregiving context is likely to fall short.

The review’s discussion of alternative screening modalities deserves particular attention. Stool-based colorectal cancer screening, such as fecal immunochemical tests, offers a way to detect colorectal cancer without an invasive procedure, and meta-analytic evidence supports its accuracy as well as its association with reduced colorectal cancer mortality. For patients for whom colonoscopy preparation and sedation are especially burdensome, a stool-based option distributed through a familiar primary care relationship may be the difference between screening and no screening. Similarly, work on accessible breast screening has examined adaptations such as extended appointment times, familiar staff, and visual preparation materials, and the review notes ongoing interest in ultrasound-based approaches for patients who cannot tolerate mammography. None of these alternatives eliminates the need for thoughtful clinical judgment, but they expand the menu of options beyond a one-size-fits-all protocol.

The authors are careful to frame their recommendations as modifiable rather than fixed. Communication research shows that many adults with intellectual disability can participate meaningfully in healthcare decisions when information is presented in accessible formats, and easy-read screening guides produced by public health agencies represent one concrete example of this principle in practice. The barrier, in other words, is often the format of the communication rather than the capacity of the patient. This reframing shifts responsibility from the individual to the system, which is consistent with the review’s overall argument that inequities in preventive care reflect choices about how care is designed and delivered, not inherent limitations of the population being served.

Finally, the review’s timing matters. As the population of adults with intellectual and developmental disabilities continues to grow and age, the volume of preventive care they will need over the coming decades will grow with it. Health systems that invest now in accessible scheduling, trained clinicians, caregiver engagement, and flexible screening pathways will be better positioned to close a gap that has persisted for at least a generation. The alternative, as the evidence on avoidable mortality makes clear, is to continue accepting preventable diagnoses and deaths in a population that, with modest adaptation, could be screened and vaccinated at rates comparable to everyone else.

Subject of Research: Health Disparities and Preventive Care for Adults with Intellectual and Developmental Disabilities

Article Title: Inequities in Preventive Care for Adults with Intellectual and/or Developmental Disability in the USA: A Narrative Review

Article References: Santra, R., Pulukuri, S. V., & Sharma, N. (2026). Inequities in Preventive Care for Adults with Intellectual and/or Developmental Disability in the USA: A Narrative Review. Journal of General Internal Medicine. https://doi.org/10.1007/s11606-026-10807-7

Image Credits: AI Generated

DOI: 10.1007/s11606-026-10807-7

Keywords: health disparities, preventive care, cancer screenings, intellectual disabilities, developmental disabilities, immunizations, Medicaid, clinician education, low-stimulus clinics, health system reform, Inequities, Preventive