Developed by the University of Alaska Anchorage Student AADMD Chapter and the

UAA Alaska LEND without Walls.

This kit contains:

1. Facilitator guide

2. Link to presentation (Google doc)

3. Link to training video (YouTube)

4. Health Literacy Activity Handout

5. Slides (PDF)

6. Slides Handout (PDF)

7. Evaluation form

8. Sample flyer

This project is/was supported by the Health Resources and Services

Administration (HRSA) of the U.S. Department of Health and Human Services

(HHS) under grant number 5T73MC206630500, Leadership Education in

Neurodevelopmental and related Disabilities Training Program, for

$515,401.00 of federal funding (07/01/2014–06/30/2015). This information or

content and conclusions are those of the author and should not be construed as

the official position or policy of, nor should any endorsements be inferred by

HRSA, HHS or the Government.

Funding was also provided by and the WITH Foundation (7/1/2014-6/30-2014)

Partners in Health: Communication Tips for Working

with People with Intellectual Disabilities Event Kit

(for healthcare pre-professionals and professionals)

Partners in Health: Communication Tips for Working with People with Intellectual Disabilities

Facilitator Guide: 45 minutes (including activity and discussion)

Developed by the University of Alaska Anchorage Student AADMD Chapter and the

UAA Alaska LEND without Walls

Description: Are you in social work, pre-med, nursing, oral hygiene, or other health related fields?

Come and learn how you can work better with and improve the health outcomes for your future

patients that experience intellectual and developmental disabilities (IDD).

Learning objectives:

1. Explain the importance of person-first language and provide examples

2. Describe some of the health disparities and barriers people with Intellectual and

Developmental Disabilities (IDD) face

3. Practice using plain language in an activity

4. Review strategies to improve communication with patients with IDD

Time

(min)

Description: Access the PowerPoint here. Slides

2 Welcome, safety announcements in case of emergency, location of bathrooms,

introduction of speaker.

2 Speaker shares briefly their experience/interest with the topic and goes over learning

objectives.

1–2

2 People first language and examples 3-4

4 Health disparities for people with IDD/Why this is important 5–6

12 This video will show evidence based strategies to improve care with people with

IDD, and includes what self-advocates want from their healthcare providers.

7

10 Activity: Have people work in pairs for about 5-8 minutes answering the questions in

the slide, using the “AADMD Health Literacy Activity” handout. Facilitate a brief

discussion: What did you notice made something harder or easier to explain? When

you picture working with patients, how can you use this plain language approach?

8

8 Tips summary 9–11

2 Briefly share about the AADMD club and upcoming events/opportunities. 12

3 Questions and closing. Training evaluation.

Resources for this training:

Powerpoint and video, AADMD Health Literacy Activity, Event Evaluation, AADMD Student

Club Flyer (samples below)

Additional activity (adds 10–15 minutes): Bring a self-advocate who experiences IDD to co-lead

the training, and ask them to share a positive and a negative experience s/he had with health care

providers. Practice in advance with the self-advocate so that his/her stories compliment the training

teach points, and can be shared in a set amount of time.

http://www.uspharmacist.com/content/s/273/c/44469/

Notes

All sites listed accessed February 2016. Created by UAA AADMD* for use in Partners in Health: Communication Tips for Working with People with Intellectual Disabilities training. *University of Alaska Anchorage American Academy of Developmental Medicine and Dentistry

http://www.slideshare.net/awakush/prediabetes-awadhesh-med

http://blog.mvhpayson.com/blog/2015/04/16/prediabetes-vs-type-2-diabetes/

http://www.ketogenic-diet-resource.com/pre-diabetes-symptoms.html

http://allbestof2.blogspot.com/

Partners in Health: Communication Tips for Working with

People with Intellectual Disabilities

Developed by the University of Alaska Anchorage Student

AADMD Chapter and the UAA Alaska LEND without Walls

Learning Objectives

Explain the importance of person-first

language and provide examples

Describe some of the health disparities and

barriers people with Intellectual and

Developmental Disabilities (IDD) face

Practice using plain language in an activity

Review strategies to improve communication

with patients with IDD

People First

Language

“Disability is only part of who we are.”

People First Language

4

Don’t use Do use Disabled A person with a disability

Handicapped; wheelchair bound A person who uses a wheelchair

Retarded A person who has cognitive disabilities

Crippled, impaired A person who is unable to walk

Deaf/dumb A person who is hard of hearing

Psycho A person who has schizophrenia

Health Disparities for People who

Experience IDD

Lower life expectancy than non-disabled individuals:

• Barriers to communication

• Lack of time

• Poor continuity of care

2002 Surgeon General’s report “Closing the Gap”

highlights disparities such as:

• Likelihood of living in low-income communities

• Inadequate experience of health care providers

• Difficulty accessing health care

(Stief & Clark, 2013)

Additional Barriers to Health Care

• Healthcare providers presume patients

with IDD are incompetent to participate

• Inadequate training of healthcare staff on

how to best support/include people with

IDD

• Insufficient visit time

• Inability to communicate effectively with

healthcare staff regarding their

healthcare needs

(Lewis & Stenfert-Kroese, 2009)

Tips for Providers

https://www.youtube.com/watch?v=OKyZcui0dqc

Health Literacy Practice Look at the handout with examples of information about pre-

diabetes, and answer the following questions with a partner:

1. Which examples are in plain, easy to understand

language?

2. Circle words or sentences that are hard to understand.

3. Discuss with your partner how you would say those

complex ideas in a plain and simple way.

Plain language helps all people understand better, especially

people with intellectual disabilities, people who speak

English as a second language, and elders.

Do

Speak directly to the patient.

Speak normally. Treat them like adults. Be respectful.

Respect and use patient’s communication system

Watch for signs of confusion or comprehension. Provide clarification, when needed

Make language visible. Use gestures, pictures, and objects in the room to support what you are saying.

Repeat important ideas different ways.

Limit the amount of information shared at one time.

(Zangari, 2012)

Don’t

Don’t avoid the patient & speak to caregivers instead.

Don’t talk about the patient to others without permission.

Don’t speak louder or use an exaggerated tone.

Don’t ignore signs of confusion, fear, & anxiety.

Don’t use the term “mental retardation” or “retarded”

Don’t use medical language or jargon. Don’t ask “Do you understand?” (Use open-

ended questions instead.)

(Zangari, 2012)

Supporting Communication

Consider:

Speaking a little more slowly

Using simple, direct statements

Using the ‘Teach-Back’ strategy

Limiting information and repeating

important concepts

Developing and using visual supports

and strategies

(Zangari, 2012)

Get involved! UAA Student

Chapter of AADMD

American Academy of Developmental

Medicine and Dentistry

References

A Survey of Patients, Families and Providers about Care of

Patients with Intellectual Disabilities Posted on 29. Dec, 2013

Heather Douthitt Stief, BS, Medical Student, Medical College of

Wisconsin Michael Clark, MD; Ministry Medical Group Accessed

at http://aadmd.org/articles/survey-patients-families-and-

providers-about-care-patients-intellectual-disabilities 6/5/15

Carole Zangari, Ph.D., CCC-SLP, Patient Communication

Presentation, Physician Education in Developmental Disabilities

Webinar Series, August 7th, 2012

Video Clips from UAA LEND Training Video Communicating

Effectively with Individuals with Intellectual/Developmental

Disabilities which will be available August 2015.

Lewis, S., & Stenfert-Kroese, B. (2009). An intervention of

nursing staff attitudes and emotional reactions towards

patients with intellectual disability in a general hospital

setting. Journal of Applied Research in Intellectual Disabilities,

23, 355-365

Sponsors

This training was developed by the University of Alaska

Anchorage (UAA) Leadership in Education in

Neurodevelopmental and related Disabilities (LEND),

through the UAA Center for Human Development.

It was also supported by the Special Hope Foundation.

This project is/was supported by the Health Resources and Services Administration (HRSA) of

the U.S. Department of Health and Human Services (HHS) under grant number

5T73MC206630500, Leadership Education in Neurodevelopmental and related Disabilities

Training Program, for $515,401.00 of federal funding (07/01/2014–06/30/2015). This

information or content and conclusions are those of the author and should not be construed as

the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the

U.S. Government.

This project was also supported by the Special Hope/WITH Foundation to the Center for Human Development-University of Alaska-Anchorage, (7/1/2014-6/30/18).

9/22/2016

1

Partners in Health: Communication Tips for Working with

People with Intellectual Disabilities

Developed by the University of Alaska Anchorage Student

AADMD Chapter and the UAA Alaska LEND without Walls

Learning Objectives

Explain the importance of person-first

language and provide examples

Describe some of the health disparities and

barriers people with Intellectual and

Developmental Disabilities (IDD) face

Practice using plain language in an activity

Review strategies to improve communication

with patients with IDD

9/22/2016

2

People First Language

4

People First

Language

“Disability is only part of who we are.”

Don’t use Do use

Disabled A person with a disability

Handicapped; wheelchair bound A person who uses a wheelchair

Retarded A person who has cognitive disabilities

Crippled, impaired A person who is unable to walk

Deaf/dumb A person who is hard of hearing

Psycho A person who has schizophrenia

9/22/2016

3

Health Disparities for People who

Experience IDD

Lower life expectancy than non-disabled individuals:

• Barriers to communication

• Lack of time

• Poor continuity of care

2002 Surgeon General’s report “Closing the Gap”

highlights disparities such as:

• Likelihood of living in low-income communities

• Inadequate experience of health care providers

• Difficulty accessing health care

(Stief & Clark, 2013)

Additional Barriers to Health Care

• Healthcare providers presume patients

with IDD are incompetent to participate

• Inadequate training of healthcare staff on

how to best support/include people with

IDD

• Insufficient visit time

• Inability to communicate effectively with

healthcare staff regarding their

healthcare needs

(Lewis & Stenfert-Kroese, 2009)

9/22/2016

4

Health Literacy Practice

Look at the handout with examples of information about pre-

diabetes, and answer the following questions with a partner:

1. Which examples are in plain, easy to understand

language?

2. Circle words or sentences that are hard to understand.

3. Discuss with your partner how you would say those

complex ideas in a plain and simple way.

Plain language helps all people understand better, especially

people with intellectual disabilities, people who speak

English as a second language, and elders.

Tips for Providers

https://www.youtube.com/watch?v=OKyZcui0dqc

9/22/2016

5

Do

Speak directly to the patient.

Speak normally. Treat them like adults. Be respectful.

Respect and use patient’s communication system

Watch for signs of confusion or comprehension. Provide clarification, when needed

Make language visible. Use gestures, pictures, and objects in the room to support what you are saying.

Repeat important ideas different ways.

Limit the amount of information shared at one time.

(Zangari, 2012)

Don’t

Don’t avoid the patient & speak to caregivers instead.

Don’t talk about the patient to others without permission.

Don’t speak louder or use an exaggerated tone.

Don’t ignore signs of confusion, fear, & anxiety.

Don’t use the term “mental retardation” or “retarded”

Don’t use medical language or jargon. Don’t ask “Do you understand?” (Use open-

ended questions instead.)

(Zangari, 2012)

9/22/2016

6

Supporting Communication

Consider:

Speaking a little more slowly

Using simple, direct statements

Using the ‘Teach-Back’ strategy

Limiting information and repeating

important concepts

Developing and using visual supports

and strategies

(Zangari, 2012)

Get involved! UAA Student

Chapter of AADMD

American Academy of Developmental

Medicine and Dentistry

9/22/2016

7

Sponsors

This training was developed by the University of Alaska

Anchorage (UAA) Leadership in Education in

Neurodevelopmental and related Disabilities (LEND),

through the UAA Center for Human Development.

It was also supported by the Special Hope Foundation.

This project is/was supported by the Health Resources and Services Administration (HRSA) of

the U.S. Department of Health and Human Services (HHS) under grant number

5T73MC206630500, Leadership Education in Neurodevelopmental and related Disabilities

Training Program, for $515,401.00 of federal funding (07/01/2014–06/30/2015). This

information or content and conclusions are those of the author and should not be construed as

the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the

U.S. Government.

References

A Survey of Patients, Families and Providers about Care of

Patients with Intellectual Disabilities Posted on 29. Dec, 2013

Heather Douthitt Stief, BS, Medical Student, Medical College of

Wisconsin Michael Clark, MD; Ministry Medical Group Accessed

at http://aadmd.org/articles/survey-patients-families-and-

providers-about-care-patients-intellectual-disabilities 6/5/15

Carole Zangari, Ph.D., CCC-SLP, Patient Communication

Presentation, Physician Education in Developmental Disabilities

Webinar Series, August 7th, 2012

Video Clips from UAA LEND Training Video Communicating

Effectively with Individuals with Intellectual/Developmental

Disabilities which will be available August 2015.

Lewis, S., & Stenfert-Kroese, B. (2009). An intervention of

nursing staff attitudes and emotional reactions towards

patients with intellectual disability in a general hospital

setting. Journal of Applied Research in Intellectual Disabilities,

23, 355-365

1) What does it mean to use person-first language?

2) Name one reason it is important to use person-first language?

3) True or False? Circle one for each statement.

a. Communication challenges with healthcare providers is one main

reason people with IDD have a lower average life expectancy than peers without IDD.

True

False

b. Most healthcare providers receive specific training for working with people with intellectual and developmental disabilities. True False

c. Using plain language and adjusting the speed of speech based on the patient’s level of understanding can improve communication between healthcare providers and their patients with IDD. True False

4) I am satisfied with the training received.

Circle one: 4=Strongly Agree 3=Agree 2=Disagree 1=Strongly Disagree

5) As a result of this training, my knowledge of things I can do to improve communication with future

patients with IDD has increased.

Circle one: 4=Strongly Agree 3=Agree 2=Disagree 1=Strongly Disagree

6) What did you like about the training?

7) What didn't work as well?

Developed by the Alaska LEND without Walls at the University of Alaska Anchorage Center for Human Development. Visit us at www.alaskalend.org.

Partners in Health: Communication Tips for Working with People with Intellectual Disabilities

Training Evalution

Lunch & Learning Event 3/1/16

As part of the Spread the Word to End the Word campaign, AADMD will host

the program described above, as well as the opportunity to sign the pledge to

end use of the “R-word.”

The AADMD was organized in 2002 to provide a forum for healthcare professionals who provide clinical care to people with IDD. Our mission is to improve the quality of healthcare for individuals with intellectual and developmental disabilities.

Are you in social work, pre-med, nursing, oral hygiene, or other health

related fields? Come and learn how you can work better with and improve the

health outcomes for your future patients that experience IDD. After a brief

video, a self-advocate with IDD will share his experiences.

Pizza will be served.

Tuesday 3/1/16 12–1:30

Lyla Richards Conference Room in

Student Union

Communication Tips for Healthcare Providers with Patients with IDD and Respect Campaign