How the Health Literacy Crisis affects people with disabilities
Can you read an important prescription label? Do you understand a complicated diagnosis? Can you follow a doctor’s instructions? Health literacy is often discussed as an individual person’s ability to do these things. That definition is no longer sufficient.
Today, health literacy is understood as both a personal and organizational responsibility. In fact, the CDC provides two updated definitions for both:
Personal health literacy is “the degree to which individuals can find, understand, and use information and services to inform health-related decisions and actions for themselves and others,”
Organizational health literacy is “the degree to which organizations equitably enable individuals to find, understand, and use information and services to inform health-related decisions and actions for themselves and others.” (CDC, 2024)
These distinctions help patients and providers understand what is expected of them when it comes to communicating and understanding health-related information. Both types of health literacy are incredibly important for people with disabilities. More than one in four U.S. adults report living with a disability. This includes over 70 million adults in the US. Disabilities can affect a person’s hearing, vision, mobility, cognition, self-care, or capacity for independent living.
Health communication barriers are created when doctors, pharmacists, and health systems communicate as though every patient receives, processes, and uses information in the same way. The health literacy crisis is not only about the reading level of people receiving health information. It also includes whether people with disabilities can understand health information. A literacy crisis is defined as widespread struggles with reading, writing, and information comprehension skills. These struggles can affect a person’s education, economic opportunities, and health. Often low literacy comes from a lack of access to resources. The current health literacy crisis has three main drivers:
- Important information is not made available in a way people can access
- Healthcare professionals fail to communicate with everyone effectively
- Health systems failing to remove barriers to care for those who need it
Inaccessible information causes gaps in health literacy
Health information is everywhere:
- patient portals to access personal health plans and diagnostics
- medication instructions
- Public health websites
- consent forms that ask people to agree to receive care
- screening recommendations for preventing long-term health conditions and illness
- discharge paperwork for leaving a hospital or procedure visit
- online videos, resources and social media
- Even AI chatbots are focused on health
It’s nearly impossible to make it through the day without consuming information that impacts your health. However, this oversaturation of information does not necessarily mean all of it is accessible.
A person who is blind or low vision may be trying to access test results from a care portal website from their doctor that does not work properly with a screen reader. A person who is Deaf or low hearing may struggle when a new provider fails to provide proper accommodations like an ASL interpreter during an appointment. Someone with an intellectual or cognitive disability may be given medical information full of complicated words, long sentences, or abstract concepts without an alternative that is more understandable to him. A person with a communication disability may know exactly what they want to communicate but may not have an effective way to talk with their doctor about symptoms or ask questions regarding care. These examples all point to real accessibility barriers facing the disability community that could result in gaps in health literacy.
These communication gaps can be significant and life-altering. A systematic review examined adults with lifelong communication disabilities. The review highlighted the lack of representation of many disabled adults in health literacy research efforts aimed at understanding their experiences. It also examined how effective communication interventions are when they are designed to support those with disabilities. The review showed reduced rates of health literacy led to poor outcomes in healthcare settings and inadequate interactions with healthcare providers. This can be a barrier for the person with a disability throughout their lifespan if not addressed and overcome by both the provider and the patient.
Another review, focused specifically on disability-related health knowledge, concluded that much of the existing knowledge-translation (KT) research is directed toward healthcare professionals rather than directly toward the people living with disabilities themselves, who need the information the most. KT is designed to be tailored to meet the accessibility needs of the end user. If these health literacy tools are not designed to support people with disabilities, the gap will widen further between patient and doctor when it comes to understanding health information provided to them.
Health literacy is more than just reading ability
It is important not to frame current health literacy problems as only affecting people with disabilities. Health information can be difficult for anyone to process. This is especially true when a person is sick, scared or anxious, in pain, or diagnosed with something they do not know much about. It is important that all people navigating health information and interactions, regardless of ability, can fully understand medical information from providers.
The CDC notes that health literacy problems can occur when organizations provide information that is too difficult to understand or makes health services unnecessarily complicated to navigate. In other words, the problem can and does exist within the system, not simply within the individual.
This matters because people with disabilities already experience many barriers to everyday life and healthcare. The CDC recognizes many related factors that contribute to health disparities for people with disabilities:
- facilities and equipment that are inaccessible
- provider knowledge about people with disabilities that is inadequate or outdated
- transportation access issues
- higher rates of poverty
Communication accessibility is equally important. Healthcare professionals need to be prepared to communicate effectively with people who have hearing, vision, speech, intellectual, and other disabilities. The entire healthcare environment should be designed to empower people to access what they need to take part meaningfully in decisions about their health.
Digital healthcare access has created solutions and barriers
Technology has potential and opportunities to improve health literacy. Online patient portals like MyChart and Epic, telehealth appointments, accessible educational videos on many platforms, and phone apps can help people obtain information without traveling to a healthcare facility. However, digital health is only truly beneficial to those with disabilities when it is accessible.
A poorly designed website, an inaccessible PDF, videos without captions, images without alt text, hard-to-navigate patient portals, or apps and programs that cannot be navigated using assistive technology create more layers of exclusion. While advancements in technology are often welcome and celebrated, the growth of digital healthcare programs can make accessibility both a technology problem as well as a problem of health literacy.
Recent research using the 2024 Health Information National Trends Survey (HINTS) highlights the continuing importance of accessible health communication for people with disabilities. The study showed that multiply disabled people were the most likely to report frustrations with accessing health information. Researchers note that differences in access to necessary health information, use of technology to help understand information received, and greater communication needs can contribute to health inequities. Experts agree that changes are needed to move from health literacy to health literacy equity.
What are some of the changes needed?
The WHO asserts that addressing the health literacy crisis requires shifting responsibility from individuals alone to healthcare organizations, public-health agencies, technology companies, educators, and policymakers. This shift can help create bridges where there were once barriers.
First, all health information should be created with accessibility in mind from the start. Plain language, a system for making documents and other communication tools more accessible, ought to be the standard for healthcare systems. However, plain language should not be mistaken for comprehensive accessibility. Accessibility includes tools like real-time captions, written transcripts, individualized audio formats, large-print versions of texts, screen-reader compatibility, proper visual supports, appropriate sign language interpretation, easy-read formats, or other individualized accommodations.
Second, healthcare professionals need stronger training in disability-inclusive communication. Providers should ask patients what communication methods work best for them rather than making assumptions about what they can or cannot understand. When healthcare providers know better, they can do better, and more professional development opportunities must be available as well. Disability is woefully under-studied in medical schools, and a change is needed in curriculum as well as practice. Project DIME is an initiative advocating for the mandatory training of clinicians to prepare them to serve people with disabilities.
Third, healthcare organizations should use techniques to ensure decision-making is shared between the provider and the patient in medical settings. These techniques include teach-back and shared decision-making. Healthy People 2030 finds checking patient understanding and involving patients in healthcare decisions as important health-communication goals to help move from a literacy crisis to an equity environment.
Fourth, to create truly accessible communication materials, the whole spectrum of disabilities needs a seat at the table. Research on disability and health knowledge found the need for more inclusive approaches to knowledge translation. Accessible information should not simply be created for those living with disabilities; people with disabilities should have meaningful opportunities to help create, assess, and evaluate the tools to ensure that nothing about us is created without us. Efforts at co-designing health communications initiatives have shown the emergence of these methods, though there is room to improve the involvement of disabled participants at all stages of a communications project, including through the final assessments of effectiveness.
Finally, more disability-focused research is needed across all areas of healthcare systems and communication. A 2026 systematic review of Easy Read health information for people with intellectual disabilities found substantial variation in how the materials are developed and evaluated. The review concluded that standardized resources and stronger research are needed to figure out what approaches are genuinely effective. It is no secret that the disabled community is under-studied and under-valued in research, and if we’re truly going to move to health literacy equity, researchers must start looking to those who need the supports the most.
Moving from the health literacy crisis to health literacy equity
The current health literacy crisis affecting people living with disabilities is ultimately one of equity. People with disabilities should not have to work harder than everyone else to understand a diagnosis, find a healthcare provider, communicate symptoms, or take part in decisions about their own bodies. Accessibility should not be an optional feature added after health information has already been created. It should be part of the design.
Healthy People 2030 recognizes that organizations themselves have a responsibility to allow individuals with disabilities to properly find, understand, and use health information and services. This helps pave an important path forward.
Improving health literacy for people with disabilities means creating healthcare environments where information is understandable, communication is accessible, technology is usable, accommodations are available, and patients are respected as active participants in their own care. The goal of health literacy is not simply to teach people with disabilities how to navigate a complicated healthcare system. The goal should be to build a healthcare system that is truly accessible to the people it serves. By investing in resources that help the disability community access the care they need, healthcare systems and organizations can truly move the needle toward health literacy equity. The crisis in health literacy is one that can be overcome when organizations come together to better meet the needs of everyone, regardless of ability.