By Ellie Kraichely
Acute care settings can be frightening for anyone, with loud monitors, unfamiliar faces, urgent decision-making, and fast-paced workflows that can create stress for patients and families alike. For individuals with intellectual and developmental disabilities (IDD/DD), these same environments often present an invisible barrier: communication that doesn’t truly fit their needs. And yet, while the healthcare system has made progress in supporting patients who speak different languages, such as providing interpreters as standard practice, it is still lagging in serving individuals who speak the same language but process it differently.
This gap in communication isn’t a minor inconvenience. Research shows that communication difficulties are highly prevalent among people with IDD, with many experiencing challenges that impact their ability to engage with healthcare professionals, understand medical information, and participate in decisions about their care. Despite this, many healthcare practitioners report feeling unprepared and uncomfortable when caring for patients with IDD/DD, largely because their training has not adequately prepared them for communicating across neurodiversity. These care gaps contribute to poorer health outcomes, longer hospital stays, and unmet needs: outcomes no healthcare provider wants their patients to experience.
We often think of “communication accessibility” in acute care as language interpretation. For example, helping someone with limited English proficiency understand what’s happening. That’s critical, and it’s rightly a standard of care. But what about patients who share the same spoken language, yet process it differently due to cognitive, developmental, or neurological variations?
For individuals with IDD, communication can include simple or literal language processing, non-verbal communication methods, alternative communication systems (visual symbols, gestures), or needs for extra processing time or repetition. These differences are NOT deficits. They are diverse ways of thinking and communicating. Yet, many clinicians have not been trained to recognize or adapt for these differences, leading to frustration, misunderstanding, and, sometimes, worse outcomes. Studies looking at nurses’ experiences in acute care settings reveal that communication challenges are among the most frequently cited barriers when caring for people with IDD/DD, and that many clinicians feel uncertain where to start when they encounter these scenarios.
Why does this matter? Answer: The stakes are high. Across multiple studies, adults with intellectual disabilities have been found to:
Experience poorer health outcomes and higher mortality rates than the general population when hospitalized, due in part to unmet communication and care needs.
Report higher anxiety and stress during hospitalization, linked to unfamiliar routines and difficulties understanding what is happening.
Often not be fully informed about their condition, treatment, or procedures, even when caregivers are present.
These are not abstract statistics. They translate into real experiences of fear, confusion, mistrust, and sometimes preventable complications. Additionally, when caregivers do serve as interpreters or advocates (as families often must), their insights are not consistently solicited or valued, which further erodes trust and can compromise care.
Here, I propose considerations and offer a framework for better communication in acute care. Improving communication with individuals with IDD/DD doesn’t require complex solutions. It begins with intentional, patient-centered practice. Here’s a practical framework clinicians can use:
Identify and Prepare
Begin with a thorough chart review to identify any history of IDD/DD. This should trigger a proactive plan for communication assessment, not a passive assumption that communication will “just happen.” If an individual is known to have IDD/DD, flagging this early helps the care team anticipate adjustments.
Engage, but talk to the patient first
When family members or caregivers are present, they are often invaluable supports, especially in interpreting communication preferences and comfort strategies. But it’s critical to remember:The patient is the patient. Even non-verbal individuals deserve direct communication about what’s happening to them.
Ask the patient (and caregiver) about their preferred method of communication (e.g., plain language, visual supports, gestures, notes on a tablet, etc.)
Avoid speaking about the patient while ignoring the patient. Engagement is both respectful and clinically necessary
Caregivers’ insights should inform, not replace, the conversation with the patient.
Establish clear, accessible communication
Once preferences are known:Build rapport before diving into medical information. A calm introduction helps reduce anxiety.
Use plain, simple language, even when the patient is verbal.
Avoid jargon and complex explanations.
Allow extra time for processing and questions.
Provide written or visual handouts that match the patient’s comprehension needs.
Consider augmentative communication tools where needed.
Accessible communication is not “extra.” It’s an ethical requirement of clinical care.
Practice strengths-based, person-centered care
Approach every patient interaction with a strengths-based mindset
Focus on what the person can do, rather than perceived limitations.
Validate attempts at communication, even if they’re non-traditional.
Follow the patient’s pace, don’t rush.
Patients who feel seen, respected, and understood are more likely to be comfortable and engaged, which supports better clinical outcomes.
One major contributor to communication challenges is a lack of training. Many clinicians report minimal education on caring for patients with IDD/DD, which correlates with lower confidence and preparedness. Healthcare education at all levels must strengthen training around neurodiversity, adaptive communication, and disability-affirming care. This includes not just what to communicate, but how.
Accessible communication is not optional. It’s a fundamental component of equitable, ethical healthcare. Practitioners and health systems must educate themselves and colleagues on IDD/DD communication needs, adapt clinical environments and workflows to support diverse communicative styles, respect patient autonomy and dignity (regardless of cognitive or communicative differences), and collaborate with caregivers, family members, and interdisciplinary teams.
Every patient deserves to feel heard, understand their care, and participate in decisions. By broadening our definition of communication accessibility beyond language fluency alone, we can begin to make acute care settings safer, more inclusive, and truly patient-centered for individuals with intellectual and developmental disabilities.
References:
Ailey, S. H., Brown, P. J., & Ridge, C. M. (2017). Improving hospital care of patients with intellectual and developmental disabilities. Disability and Health Journal, 10(2), 169–172. https://doi.org/10.1016/j.dhjo.2016.12.019
Goh, T. J., Lim, T., Foo, M., Ong, S. K. A., Aishworiya, R., Nair, T., Kang, Y. Q., Agarwal, P. K., & Sung, M. (2020). Supporting individuals with Autism Spectrum Disorder in medical settings during COVID-19. Asian Journal of Psychiatry, 54, 102441. https://doi.org/10.1016/j.ajp.2020.102441
Lewis, P., Gaffney, R. J., & Wilson, N. J. (2016). A narrative review of acute care nurses’ experiences nursing patients with intellectual disability: Underprepared, communication barriers and ambiguity about the role of caregivers. Journal of Clinical Nursing, 26(11–12), 1473–1484. https://doi.org/10.1111/jocn.13512
Lunsky, Y., Lake, J. K., Durbin, J., Perry, A., Bullock, H., Morris, S., & Lee, J. S. (2015). Understanding and improving care for individuals with intellectual and developmental disabilities in the emergency department. In I. Brown & M. Percy (Eds.), A comprehensive guide to intellectual and developmental disabilities (pp. 3–18). Academic Press. https://doi.org/10.1016/B978-0-12-800278-0.00001-4
McCoy, J. O., & Holt, M. (2020). Hospitalized adults with intellectual and developmental disabilities: Confronting challenges. Journal of Acute Care Physical Therapy, 11(4), 191–200. https://doi.org/10.1097/JAT.0000000000000136
