Blind and Low Vision Persons' Right to Health Care Information in Alternative Formats
Federal law requires health care information to be provided in a way that a person with low vision, hearing loss, or cognitive difficulties can understand it.
Federal laws, including the Americans with Disabilities Act, prohibit health care providers from discriminating against people on the basis of disability. If you are blind or have low vision, this means that, among other things, you have a right to receive health care information in “alternative formats” that you can read. The most common alternative formats are Braille, large print, audio recording, e-mail, and electronic or digital documents (which are accessible using a personal computer equipped with “screen reading” software).
Why Alternative Formats Are Important
Blind and low vision people often receive many types of important health care-related information in standard print, which they can’t read. This includes:
- medical exam, test, and lab results
- information explaining diagnoses or treatment of an illness or disease
- prescription medication instructions, dosage information, and food or drug interaction warnings
- explanations of informed consent or end-of-life policies and procedures
- physical therapy instructions and instructions for the management of chronic conditions, such as diabetes or hypertension
- childbirth preparation resources, prenatal care materials, and birth plans for pregnant women and new moms with visual disabilities
- educational materials for health care classes
- appointment reminders, and
- information about benefits eligibility (including cancellation notices), security and privacy rights, and billing and other medical records.
Access to this information is essential to everyone's health and well being, including people with visual disabilities. Without access to this information, people with visual disabilities face significant difficulty obtaining health care, don’t receive the same level of care as sighted individuals and, under certain circumstances, are denied health care services all together.
What the Law Requires
Fortunately, federal law requires that health care facilities give people with vision disabilities access to the same information everyone else gets, so that blind and low vision people should receive care as effective as that provided to others. This applies to nearly all health care providers, including hospitals, private doctors' offices, health clinics, diagnostic centers, physical therapy centers, psychological and psychiatric service providers, and nursing homes. It applies whether the health care facility is privately owned and operated or administered by a state or local government.
The Americans with Disabilities Act (ADA) was signed into law by President George H.W. Bush in 1990. The ADA requires health care facilities to ensure that no one with a visual disability is excluded, denied services, segregated, or otherwise treated differently than other individuals because of the absence of “auxiliary aids and services.” Offering reading material in alternative formats are one kind of legally required auxiliary aid or service.
Under the ADA, health care providers must offer such aids and services to patients, their companions, and visitors with visual disabilities and ensure effective communication between provider staff and patients. In order to be effective, the health care provider must furnish the alternative accessible formats in a timely manner, and in such a way as to protect the privacy and independence of the individual with a disability. The provider gets to make the ultimate decision about what format to offer, but only if it actually results in effective communication. A provider should consult with the blind or low vision individual whenever possible to determine what type of alternative format is needed to ensure effective communication.
Health care providers that don’t provide information in an alternative format that blind or low vision people can read are violating federal laws that prohibit discrimination against people with disabilities. A health care provider cannot require a blind person to bring someone with them to interpret or facilitate communication, and cannot rely on a blind person’s companion to interpret or facilitate communication.
Noncompliance With the Law
Unfortunately, in spite of the law, the reality on the ground is that people with visual disabilities still face significant barriers in accessing even the most basic—and, for people without disabilities, routine—health care services and information.
For example, people with visual disabilities frequently report that prescription information is rarely accessible. This makes it difficult, if not impossible, for many blind or low vision people to distinguish one medication from another, or to identify the expiration date and recommended dosage. This, in turn, can result in erroneous dosing or dangerous drug combinations. One woman with low vision reported that she learned only after years of taking her thyroid medication at dinnertime that taking the medication with food weakened the drug’s effects, which may have compromised her treatment.
In spite of the obvious need for access to prescription information, according to a 2011 report by the Equal Rights Center, only 1% of pharmacies and retailers offer prescription info in alternative accessible formats. In addition, health care providers almost never have accessible versions of intake forms, health questionnaires, or other paperwork. When a blind or low vision individual is forced to ask for help filling out such paperwork, staff often refuse, or ask “Why didn’t you bring someone with you?” Even when help is provided, it’s commonly provided in the lobby, waiting room, or some other public space. Many blind individuals report feeling frustrated and embarrassed after being forced to reveal their confidential financial information or details about highly personal and private physical and mental health concerns out loud in public in front of strangers.
Examples like these illustrate the kind of stark disparities that blind and low vision individuals commonly face in the health care setting. Fortunately, disability rights advocates, government agencies, and community groups are increasingly working to ensure equal access to health care for blind and low vision individuals. Nevertheless, there remains a dramatic need to improve delivery of care to people with visual disabilities nationwide.
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