Health Literacy

Is “health literacy” in your student’s IEP? It should be. In order to take charge of health and wellness, youth need to learn the “language of health care,” and know how to access and understand the health care system.


Q: What is health literacy?
A: 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.


Q: Why does health literacy matter?
A: People with disabilities experience significant health disparities from typically abled people, including worsening health, depressive symptoms, diabetes, stroke, visual impairment, difficulty with activities of daily living, obesity, lack of physical activity, and low workforce participation. In addition, many people with disabilities do not receive basic primary and preventive care, including weigh‐ins, preventive dental care, pelvic exams, X‐rays, physical examinations, colonoscopies, and vision screenings. The Center for Disease Control (CDC) estimates that inadequate health literacy is associated with annual health care expenditures approximating $172 billion.


Q: What are the problems?
A: One of the biggest barriers—faced by people with and without disabilities alike—is that health information is too complex. According to a paper by the AAHD, 9 out of 10 adults struggle to understand unfamiliar health information. According to the CDC, health professionals often use too much jargon or scientific data, and rely too much on printed information. Often, there is a lack of diversity in the message delivery methods, and too much focus on conveying information rather than encouraging actions on the part of the patient.


Q: What can be done to improve health literacy?
A: Every organization responsible for disseminating health information should take an inclusive approach when developing and disseminating information about health issues. Providers can take time to learn more about effective communication with diverse populations, including people with learning, intellectual and developmental disabilities. (See the Resources section for an article from the CDC)


Schools can do their part by providing direct instruction in health literacy and including goals and objectives in transition IEPs for students ages 14 and over.
Navigating the Health Care System is a four-unit health literacy curriculum. Designed by Nemours Children’s Health, it helps prepare teens to be responsible for managing their health care. The curriculum is available nationwide at no cost, with new content added regularly. The four-module lesson plans include a facilitator’s guide and interactive web-based activities.

Click here to access the Nemours Children’s Health curriculum, Navigating the Health Care System.

How can teens take charge of their medical care? Check out the English and Spanish versions of Nemours Take Charge resources:

How Can I Take Charge of My Own Medical Care? in English.


¿Cómo puedo hacerme cargo de mi propia atención médica? en español.

(See the rest of the RAISE August 2022 Newsletter)

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