Tips for Facilitating Effective Communication Between Caregivers and Individuals with IDD

The Americans with Disabilities Act (ADA) and Section 504 of 1973’s Rehabilitation Act requires that physicians and all other health care providers effectively communicate with people with disabilities. Individuals with an intellectual or developmental disability (IDD) may have communication barriers that need to be overcome. These communication barriers typically affect every aspect of the person’s life.

Effective Communication Can Greatly Improve a Patient’s Life

The language and communication skills of each person with an intellectual disability (ID) are unique; therefore, caregivers and health care providers need to provide each person being served with individualized treatment and support. In 2013, the American Association on Intellectual and Developmental Disabilities indicated that an individual’s level of life functioning improves when the correct personalized supports are regularly provided. Furthermore, the 2016 book entitled Communication Interventions for Individuals with Severe Disabilities: Exploring Research Challenges and Opportunities summarizes studies conducted over the past two decades related to the positive effects attained when improving the communication skills of individuals with a severe IDD.

Despite Barriers, Effective Communication is Possible

Unless an individual with an IDD displays an obvious communication barrier, caregivers should never assume one exists. Even if an individual displays difficulty communicating, the type of barrier and ways to address it often varies from one person to the next.

When an individual does have communication barriers, caregivers should keep several things in mind:

• Communicating with people with mild, moderate and severe communication difficulties will differ greatly; therefore, assessing the language skills of each person helps caregivers use an appropriate level of language.
• Additional time for information exchange may be necessary.
• Many individuals can understand what is being communicated to them easier than they can express themselves. On the contrary, sometimes individuals’ expressive speech gives the impression that they comprehend something better than they actually do; therefore, caregivers need to take the time to ensure the individual truly does understand.
• Some people with disabilities may find it difficult to give an accurate picture of how they are feeling and what symptoms they are having (e.g., feeling anxious, tired, hungry, the need to urinate, etc.). New caregivers should speak with others who are familiar with the individual as this may assist the caregiver in understanding the person being cared for; however, caregivers must continue focusing their communication efforts on the individual.
• Some people with intellectual and developmental disabilities are delayed when responding to questions; this delay may be significant.

10 Tips for Effective Verbal Communication

1. Simplify Communication

Use simple sentences, speak slowly and pause frequently.

2. Avoid Using Jargon

In this case, jargon refers to terms used in the medical profession that others may have difficulty understanding.

3. Use Concrete Language Instead of Abstract Language

All concrete terms should be accompanied by a gesture.

Concrete language terms include:

• “Show me.”
• “Do this.”
• “Tell me.”

Concrete Language Vs Abstract Language

• Concrete language: “Are you sad (happy, upset, angry, etc.)?”
• Abstract language: “How do you feel?”
• Concrete language: “Put your shoes on.”
• Abstract language: “Get ready to go.”

4. Do Not Shout

5. Listen Intently

• Caregivers need to:
  • Allow enough time for the person to respond.
  • Remain sensitive to the nonverbal cues and person’s tone of voice. Muscle tone differences can complicate a caregiver’s ability to read an individual’s body language or facial expressions; therefore, caregivers need to check/validate their perceptions.
  • Inform the person when they do or do not understand something.

6. Clear Explanations are Essential

Before performing a task, explain what is being done and why: Demonstrate the action before performing the task.

• A caregiver that is going to comb/brush a person’s hair should:
  • State: “I need to comb/brush your hair” while mimicking this action on himself/herself. “After I finish combing/brushing your hair, your hair will look nice.”

7. Ensure Understanding of What was Said

If the person being cared for can speak in sentences, ask him or her to repeat what was just said. If about to perform a task, caregivers should ask the individual what is about to be done and why the caregiver is doing it.

8. Avoid Interrupting or Finishing Sentences

9. Ask for Clarification

When unsure, it is appropriate for a caregiver to repeat what a person with disabilities says for verification purposes. If necessary, a caregiver may request that the person communicates in a different manner (e.g., writing as opposed to speaking, etc.).

10. Complete One Topic Before Moving On to Another

Language/Communication is Not Necessarily Verbal

Language/Communication encompasses much more than speech alone. Augmentative communication is another form of language that people with intellectual disabilities (like an autism spectrum disorder) can use to communicate what they want or need. Augmentative communication includes sign language, gestures and the use of pictures.

Effective Silent Communication

Caregivers can also communicate:

• Using visual aids, such as pictures and diagrams.
• By acting or using demonstrations.
• With gestures.
• In writing, when applicable.

The Picture Exchange Communication System (PECS)

The PECS communication method uses applied behavior analysis principles to teach individuals (frequently children) with under-developed verbal abilities to communicate using pictures. Over time, the individual learns how to use pictures as a means to express his or her thoughts and desires; moreover, he or she learns how to create sentences and answer questions using multiple pictures.

Augmentative communication does not necessarily replace speech; children with autism spectrum disorders (ASDs) still learn to talk: Evidence suggests that the use of the Picture Exchange Communication System may actually stimulate the child to learn speech because they already understand what symbolic communication entails.

Take Advantage of Individualized Education Programs (IEPs)

When applicable, caregivers and health care providers should take the time to review a copy of each individual’s Individualized Education Program. IEPs are ideal for determining what a person’s interests and strengths are, thus, providing the information necessary to emphasize these areas and create opportunities for the person to be successful.

The National Dissemination Center for Children with Disabilities (NICHCY) offers advice to teachers: This advice may also be beneficial to caregivers and health care providers. The NICHCY states that communication should include several approaches; for example, use a picture in conjunction with relaying new information verbally. Furthermore, instead of just showing a picture, use a hands-on approach, providing materials, experiences and an opportunity to try new things.

Completing a New task

• New tasks should be broken down into small steps.
• The caregiver should demonstrate the steps first.
• The individual receiving care should then complete the steps (one step at a time).
• When necessary, the caregiver should be ready to provide assistance.
• Offer feedback immediately.

Caregivers should regularly share information about progression with the parents/guardians and teachers of the person receiving care.

These tips are just a guideline: Caregivers and health care providers will need to adapt these tips based on the needs and abilities of each individual.