Caregiver Rights to Receive Accessible Information Under the ADA
by Audrey Demmitt, R.N. and VisionAware Peer Advisor
Does a Caregiver Who Is Visually Impaired Have the Right to Receive Accessible Information?
Recently, I presented a workshop at my state Council of the Blind convention on being a caregiver who is blind or visually impaired. Someone asked, “What are the rights of a caregiver who is visually impaired when it comes to getting accessible information from health care providers regarding their loved one?” It is a great question, and as someone who is visually impaired and a caregiver for family members, I wanted to know too. While I am no legal expert, I will briefly summarize what I learned on the question that was posed.
The ADA National Network
First, I went to the ADA National Network’s website and found a toll-free number (1-800-949-4232) to speak to an Americans with Disabilities Act (ADA) specialist. This network has regional centers throughout the U.S. to provide information, guidance, and training on the ADA. The agent directed me to the relevant terminology and sections of the ADA document. He sent me an excerpt of the ADA text, and we talked through some legal definitions. I asked my questions and found this service very helpful. Keep in mind, the Americans with Disabilities Act exists to ensure no one with a disability is excluded, denied services, segregated, or treated differently than someone without a disability.
Effective Communication Required by Law
The ADA requires that Title II entities (state and local governments) and Title III entities (businesses and nonprofit organizations that serve the public), known collectively as “public accommodations,” communicate effectively with people who have disabilities, including vision, hearing, and speech. The goal is to ensure that communication with people with these disabilities is equally effective as communication with people without disabilities. In short, this means public accommodations must provide a way for an individual with vision loss to receive and give information in his/her preferred format which could be audio, large print, braille, or electronic via the computer. This rule applies not only to the patient who is disabled, but to any family member, companion, or caregiver who is disabled representing the patient.
Auxiliary Aids and Services Must Be Offered
Public accommodations must offer “auxiliary aids and services” when necessary to accomplish effective communication unless:
- it would fundamentally alter the nature of goods, services, or privileges or
- it would cause undue difficulty or expense to the public accommodation.
Types of Aids
In the context of health care, this aid might simply be a staff member who reads a surgical consent form or written informational material to a patient’s companion who is blind and acting as the patient’s health care surrogate. Or perhaps the patient’s next of kin is visually impaired and needs to help the patient with post-op instructions given by medical personnel. A braille, large print, or electronic version of these instructions could be requested by the patient’s representative.
The types of aids and services will vary, but the key is for health care providers to consider the nature, length, and complexity of the information; how the disabled individual prefers to receive information; and the context in which the communication is taking place. ADA requires, “In order to be effective, auxiliary aids and services must be provided in accessible formats, in a timely manner, and in such a way as to protect the privacy and independence of the individual with a disability.”
In summary, if you are a person with vision loss and are accompanying someone to a medical care facility as their companion, family member, friend, or representative for treatment or services, you are entitled to the same “effective communication” that would be given to a person who is not disabled, and the medical facility must offer appropriate “auxiliary aids and services” to accomplish this.
Learn More About the ADA Rules on Effective Communication and Other Aspects of the Law
- Visit the ADA website section on communication for a full explanation of these provisions and rules.
- Use the ADA National Network site as a resource to better understand your rights under the ADA and advocate for yourself.
- For comprehensive information on the ADA, visit the ADA website.
Here’s to “equality of opportunity, full participation, independent living, and economic self-sufficiency for individuals with disabilities,” the stated mission of the Americans with Disabilities Act.