A health appointment is most helpful when a person can understand what is happening, ask questions, express concerns and participate in decisions about their care.

For people with communication disabilities, being able to participate may require more than simply speaking louder or repeating a question. Some individuals may communicate best with plain language, pictures, writing, a communication device, an interpreter, extra processing time, a familiar supporter, or other individualized accommodations.

Communication access starts before the appointment begins.

Why Communication Needs Should Be Documented

In October 2026, researchers published the protocol for the Documentation of Communication Disability Collection and Accommodations in Primary Care Settings (DECA) study. The pragmatic trial is planned to involve 10 clinics across five health systems.

Researchers will evaluate strategies for documenting communication-disability status and accommodation needs in electronic health records and then providing requested accommodations.

It is important to understand what this publication does and does not show. The article describes what researchers plan to study. It does not yet provide results showing that the intervention worked or improved patient outcomes.

The study highlights an important issue: knowing that someone has a communication disability is not necessarily the same as knowing how that person communicates best.

A Diagnosis Does Not Tell You How Someone Communicates

Many people with communication disabilities may have to explain their needs repeatedly when meeting new professionals.

Important information can be lost during scheduling, intake, rooming, an examination, or follow-up. A family member or caregiver may be asked to answer questions even when the patient can communicate with the right support.

A medical record may identify a diagnosis without explaining what actually helps that individual participate.

Useful documentation can make that information more practical.

For example, it might note that a person:

• Uses augmentative and alternative communication (AAC)
• Benefits from questions being asked one at a time
• Understands information better when visual choices are provided
• Reads written information more easily than processing spoken instructions
• Needs additional time to respond
• Wants a trusted supporter present for part of the appointment

These details can help a care team prepare before the person arrives.

At the same time, documentation should never become a permanent assumption. Communication needs and preferences can change because of fatigue, stress, illness, sensory conditions, the environment, or the topic being discussed.

The best approach is to document helpful information while continuing to ask the person what they need.

A Simple Communication Preparation Framework

Families, caregivers, supporters, and healthcare professionals can use four simple questions before an appointment.

1. How does the person understand information best?

Consider whether the person benefits from:

• Plain language
• Pictures or visual choices
• Written instructions
• Demonstrations
• Sign language
• Extra processing time
• Information presented in smaller steps

2. How does the person express choices, questions, discomfort, or consent?

Communication may include:

• Speech
• Gestures
• Facial expressions
• Pointing
• Typing
• A letter board
• A speech-generating device
• Other AAC methods
• A combination of communication methods

The goal is not to identify one “correct” way to communicate. The goal is to understand how this individual communicates.

3. What environmental changes make communication easier?

The environment can affect communication, too.

A person may communicate more comfortably with:

• A quieter room
• Less visual clutter
• Reduced background noise
• Fewer people in the room
• Predictable steps
• Appropriate lighting
• Additional time to respond

Small changes can sometimes make it easier for a person to participate.

4. What is the support person’s role?

A family member, caregiver, or support professional may help explain unfamiliar communication, operate equipment, provide relevant history, or help the person prepare for the visit.

But support should not automatically mean speaking for the person.

Whenever possible, healthcare professionals should continue addressing the patient directly and give the person an opportunity to respond.

Consider Creating a One-Page Communication Profile

A short communication profile can help important information travel with a person across different settings.

With the individual’s permission, it might include:

• Preferred name and how the person wants to be addressed
• Communication methods and equipment
• How the person communicates yes, no, stop, pain, or “I don’t understand”
• Helpful pacing or environmental supports
• The role of family members or support staff
• Important follow-up information
• A reminder to confirm preferences directly with the individual

Keep the information current and protect private information.

A communication profile should support conversation, not replace it.

Questions Families Can Ask Before an Appointment

Families and patients may want to ask the healthcare office:

• Can communication needs be added to the scheduling or medical record?
• Can the office provide additional time if needed?
• What accommodations are available?
• Can written or visual instructions be provided?
• Who should receive a communication profile before the appointment?
• Can a support person participate, and what will their role be?
• How can the patient’s communication preferences be confirmed when they arrive?

These questions can help move communication access from something addressed at the last minute to something the care team prepares for in advance.

Supporting Communication Across the Care Journey

For people receiving Regional Center services, families may also wish to discuss communication goals and support needs with their Service Coordinator and other relevant professionals. Services, funding and authorization vary, so individual decisions should be based on current official guidance.

In-home support can also help a person maintain familiar routines, organize appointment materials and prepare communication tools when those activities are consistent with the individual’s care plan and preferences.

Respect Starts With Asking, Not Assuming

No diagnosis tells a healthcare team exactly how a person communicates.

Some autistic people prefer identity-first language, while others prefer person-first language. Some people use speech and also benefit from AAC. Some want a family member involved in appointments, while others prefer greater privacy.

There is no one communication approach that works for everyone.

The most respectful starting point is to ask.

When communication preferences are understood before an appointment, patients have a better opportunity to participate in conversations about their health and care.

At ComForCare Home Care North & East San Diego, we believe personalized support begins with understanding the individual, their routines, preferences, communication style and goals. When appropriate, our caregivers can provide non-medical support that helps individuals and families prepare for everyday activities and appointments while respecting the person’s choices and independence.

Medical information note: This article is for educational purposes only and does not replace advice from a physician, speech-language pathologist, or other qualified healthcare professional.

Sources

• Oshita J, et al. “Implementation of Communication Disability Documentation and Accommodations in Primary Care: A Pragmatic Type III Hybrid Implementation-Effectiveness Trial Protocol.” Journal of Speech, Language, and Hearing Research. October 13, 2026. https://pubmed.ncbi.nlm.nih.gov/42826165/

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