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Some people with intellectual or developmental disabilities (IDD) have communication difficulties. People with intellectual disabilities or those whose disabilities directly affect speech, hearing, or sight are more likely to have communication difficulties. Unless a communication barrier is obvious, it is best not to assume one exists unless the patient, a family member, or other caregiver tells you about the barrier. Even when a communication difficulty exists, the exact barrier and the best way to address it often varies.

When a person with a disability does have difficulty with communication, it may be helpful to keep the following in mind:

Allow additional time to exchange information.

An assessment of language skills helps to choose the level of language you use. Talking with someone with a mild communication difficulty is very different than talking with a person with a moderate or severe communication difficulty.

Many people have stronger receptive (understanding) communication skills than expressive skills.

Conversely, a person's expressive speech may sometimes give an impression of better comprehension than is actually the case, so check the patient's understanding.

Some people may be delayed in responding to questions; so much so that answers may seem to "come out of nowhere."

Some people with severe disabilities may also have difficulty giving you an accurate picture of their feelings and symptoms because of limitations in interpreting internal cues (e.g., need to urinate, anxiety). Involving caregivers who know the patient well may help you to better understand his/her experiences. However, as much as possible, continue to focus your communication efforts on the patient.

If you are in a busy area with many distractions, consider moving to a quieter location.

ESTABLISHING
RAPPORT

Speak directly with the patient

Avoid talking to an adult as if he/she were a child

Consider not wearing the white coat.

Speak directly to the patient, not to his/her caregiver(s).

Ask the patient: "Do you want your support worker/caregiver to stay here for this visit?"

Ask simple introductory questions (e.g., name, reason for visit).

Explain the process and purpose of the visit in simple terms.

Gain the patient's attention and eye contact, if possible, by using his/her name or by touching his/her arm prior to speaking.

Determine how the patient communicates: " How do you say Yes? No?" " Do you use a device? Can you show me how to use this book/machine?"

If the patient uses a communication technique or device, involve a caregiver who is familiar with it.

Show warmth and a positive regard.

Encourage the use of "comforters" (e.g., favorite item the patient likes to carry, or a preference for standing and pacing rather than sitting).

For individuals with autism and related disorders, respect the preference to avoid eye contact.

Use positive comments and positive reinforcement.

Focus on the patient's abilities rather than disabilities.

Use plain language. Avoid jargon.

Use short, simple sentences.

Use concrete as opposed to abstract language, for example: "Show me"; "Tell me"; "Do this" with gesture; "Come with me"; "I'm going to..."

Say "Put your coat on" instead of "get ready."

Say "Are you upset? Are you sad? Are you happy?" instead of "What are you feeling?"

To make the concept of time more concrete, use examples from daily and familiar routines (e.g., breakfast-time, lunchtime, bedtime).

LISTENING

Listen to what the patient says

Allow enough time

Let the patient know when you do and do not understand.

Be sensitive to tone of voice and nonverbal cues.

Differences in muscle tone for some individuals may complicate reading their facial expressions or body language. Check/validate your perceptions.

Be aware that the visit will likely take more time than usual.

Several consultations may be required to complete a full assessment.

EXPLAINING CLEARLY

Explain what will happen before you begin

Tell and show what you are going to do and why

Speak slowly. Do not shout.

Pause frequently, so as not to overload the patient with words.

Give the patient enough time to understand what you have said and to respond.

Rephrase and repeat questions, if necessary, or write them out, if the patient is able to read.

Checking for understanding is essential. For patients who can speak in sentences, ask questions such as: "Can you tell me what I just said?" "Can you tell me what I am going to do and why?"

COMMUNICATING WITHOUT WORDS

Use visual aids

Act or demonstrate

People with limited language ability and understanding rely on familiar routines and environmental cues to understand or anticipate what will happen next.

Use simple diagrams and gestures.

Use pictures when communicating; find signs in the patient's communication book or point to familiar objects (e.g., "It looks like...")

Some people with IDD may express themselves only in writing.

When possible and safe, allow the patient to handle and explore equipment.

Point to body parts and act out actions or procedures (e.g., checking ears).

Legal Obligations to Patients with Disabilities

The Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act of 1973 (Section 504) require doctors and other health care providers to ensure effective communication with patients with disabilities. This obligation includes providing auxiliary aids and services to assist with communication.

These federal laws require health care providers to provide and pay for auxiliary aids/services necessary for effective communication. These laws prohibit health care providers from passing costs of auxiliary aids/services to their patients.

Whether a patient needs an auxiliary aid/service and, if so, what aid/service will vary from individual to individual. Examples of auxiliary aids/services include but are not limited to the following:

Sign language interpreters

Braille materials

Simplified language documents

Computer Assisted Real Time text (CART)

Large print documents

Keep in mind that if a patient with a disability is accompanied by a companion who has a disability that affects communication, the ADA and Section 504 require medical providers to ensure effective communication with that companion, if he or she is an individual who is involved in the patient's care.

Remember that these tips are general guidance and will need to be adapted depending on the abilities and needs of your individual patient. Your goal should be to treat people with disabilities just as you would other patients while respecting any disability-related needs those patients may have.

References

1. Bradley E, Lofchy J. Learning disability in the accident and emergency department. Advances in Psychiatric Treatment 2005,11:45-57.

2. Chew KL, Iacono T, Tracy J. Overcoming communication barriers - working with patients with intellectual disabilities. Aust Fam Physician 2009 Jan-Feb;38(1-2):10-14. www.racgp.org.au/afp/200901/200901chew.pdf. Accessed November 2017.

3. Lennox N, Beange H, Davis R, Survasula L, Edwards N, Graves P et al. Developmental Disability Steering Group. Management guidelines: Developmental disability. Version 2. Victoria, Australia: Therapeutic Guidelines Limited, 2005.

4. McCreary BD. Developmental disabilities and dual diagnosis: A guide for Canadian psychiatrists. Kingston, ON: Developmental Consulting Program, Queen's University, 2005.

5. McCreary BD, Jones, J. Developmental Disabilities and Dual Diagnosis: A Clinical Guide for Healthcare Professionals of All Disciplines. Montreal, QC: McGill-Queen's University Press, 2013.

6. Citation for ADA is 42 U.S.C. §§ 12101 et seq.

7. Citation for Section 504 is 29 U.S.C. § 794

Original tool: ©2011 Surrey Place Centre.
Developed by Sullivan, W & Developmental Disabilities Primary Care Initiative Co-editors. Funded by the Ontario Ministry of Community and Social Services and Ontario Ministry of Health and Long-Term Care, Surrey Place Centre and the Surrey Place Centre Charitable Foundation.

Modified with permission of Surrey Place Centre. This tool was reviewed and adapted for U.S. use by physicians on the Toolkit's Advisory Committee; for list, view here.

Additional reviewers were Lynne F. Harmon, MA, CCC-SLP, President/Co-Director, Parent-Child Services, Knoxville, TN, and Martha M. Lafferty, JD, Managing Attorney, Disability Law & Advocacy Center of Tennessee, Nashville, TN.

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Communicating Effectively with Adults with Intellectual and Developmental Disabilities

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Some people with intellectual or developmental disabilities (IDD) have communication difficulties. People with intellectual disabilities or those whose disabilities directly affect speech, hearing, or sight are more likely to have communication difficulties. Unless a communication barrier is obvious, it is best not to assume one exists unless the patient, a family member, or other caregiver tells you about the barrier.

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Someone with intellectual disability has limitations in two areas. These areas are:

Intellectual functioning. Also known as IQ, this refers to a person’s ability to learn, reason, make decisions, and solve problems.

Adaptive behaviors. These are skills necessary for day-to-day life, such as being able to communicate effectively, interact with others, and take care of oneself.

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There are many assisted living facilities for adults with Intellectual Disabilities. As a father, I think it would be beneficial for him and his daughter to have a nanny or a professional to help with the day to day stuff. iDevices is a resource that has apps that helps with home living tasks, such as how to dress for certain days and how to cook, with videos, pictures and explicit instructions. Audio books and E-texts will also help with reading and comprehension, especially when reading with his daughter.

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Sam Dawson has the mental capacity of a 7-year-old. He works at a Starbucks and is obsessed with the Beatles. He has a daughter with a homeless woman; she abandons them as soon as they leave the hospital. He names his daughter Lucy Diamond (after the Beatles song), and raises her. But as she reaches age 7 herself, Sam's limitations start to become a problem at school; she's intentionally holding back to avoid looking smarter than him. The authorities take her away, and Sam shames high-priced lawyer Rita Harrison into taking his case pro bono. In the process, he teaches her a great deal about love, and whether it's really all you need.