Child Whisperer Series: Intellectual and Developmental Disabilities

“Can you help me? I have a patient who is what I like to call, a kid at heart,” asked one of our ED adult nurses. As we walked to the adult side of the ED the nurse let me know that this patient had intellectual and developmental disabilities (IDD). The adult patient required IV access and had already been poked a few times. Although I do not often work with adults, I knew that remembering a few key Child Life principles could help us care for the patient.

According to The Arc, persons with IDD can have a below-average cognitive ability with 3 characteristics:

1. Intelligence quotient (IQ) between 70-75 or below
2. Significant limitations in adaptive behaviors (the ability to carry on everyday activities such as self-care, socializing, communicating, etc.)
3. The onset of the disability occurs before age 18

When we walked into the room the nurse said, “Mr. J this is my friend Kristen and she is really good at helping support people when they have to go through hard things in the hospital”. Mr. J smiled at me and patted the bed for me to sit next to him. I sat down on the side of the bed, and we held hands and talked while the nurse was able to place the IV.

Not all experiences with persons with intellectual and developmental disabilities go as according to plan. Here are a few things to keep in mind while you are preparing to work with persons with IDD:

1. Utilize Caregivers

Try to speak and ask questions directly to your patient. If you find that your patient is a limited historian, ask the caregiver for help with the best ways to communicate and provide information to the patient. Remember to involve the patient as much as he or she is able, and avoid over relying on the caregiver and ignoring the patient. If the patient is alone, ask if they have representative (social worker, parent, etc.) who they would like you to contact.

2. Communication

• Break ideas into concrete thoughts. For example, if a patient is anxious about a procedure, you could say “You may start to feel like your stomach is hurting or you have butterflies in your stomach. This could mean that you are nervous.”
• Do not assume that your patient will understand verbal dialogue and try to use pictures when possible. However, the face pain scale can be difficult for persons with IDD to understand. A caregiver can help define what real pain is to your particular patient.
• Try to assess your patient’s level of understanding, particularly when refusing treatment. Do they understand if their blood sugars are high they could be at risk for getting seriously ill?

By remembering these principles and being respectful of Mr. J and his abilities, the nurse and I were able to make his ED visit a more successful experience for him.

Helpful Links

1. Office of Developmental Primary Care at UCSF Department of Family and Community Medicine
2. What I wish my doctor knew about non-traditional communicators
3. What I wish my doctor knew about people who accompany us to OUR medical appointments

Thank you to Jennifer Dresen, MSW, MPH at ARC San Francisco for the helpful hints for working with adults with IDD. Thanks also to the ODPC at UCSF for permission to share website information.

Editor:
Dr. Matthew Klein (@MKleinMD)

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