Posted on April 24, 2019 by Angela Rapp Kennedy, CQL Vice President of Training and Learning Initiatives

There’s one question we receive more often than others at CQL | The Council on Quality and Leadership, and it’s a common issue that human service organizations face across the globe – how do you gather information about quality of life outcomes from people who do not use words to communicate? More specifically at CQL, we are asked how do you apply the Personal Outcome Measures® discovery process to people who communicate through non-verbal methods?

Whether it’s a recent webinar or an on-site training option, we’ve worked to provide guidance about this issue, and given the importance of the topic we feel it’s important to expand upon it in this edition of Capstone. As is our typical approach with these articles, we first look at data to see what this tells us about the impact on people’s lives. Then, we share some practical information and specific strategies to support organizations in their efforts. If you have your own ideas to add to this ‘conversation’ we encourage you to visit our Facebook E-Community and contribute to our new post about communication strategies.

Disparities In Outcomes And Supports

By Carli Friedman, CQL Director of Research

Utilizing data from approximately 1,500 Personal Outcome Measures® interviews collected through the CQL PORTAL Data System from 2018, we analyzed where there were disparities in personal outcomes for people who primarily communicated through facial/body expressions compared to people who primarily communicated though other means (e.g., verbal communication, sign language, communication devices).

Findings revealed statically significant disparities in seven outcomes. People who primarily communicated through facial/body expressions were less likely to have the following personal outcomes present:

• People live in integrated environments
• People interact with other members of the community
• People perform social roles
• People choose where and with whom they live
• People choose where they work
• People choose personal goals
• People realize personal goals

Disparities in Personal Outcomes

In large part, the disparities people who primarily communicated through facial/body expressions faced were due to a lack of individualized organizational supports from human service organizations. In fact, people who primarily communicated through facial/body expressions were significantly less likely to receive organizational supports in the following areas:

• People live in integrated environments
• People interact with other members of the community
• People participate in the life of the community
• People have friends
• People perform different social roles
• People choose where and with whom they live
• People choose where they work
• People choose personal goals
• People realize personal goals

Disparities in Organizational Supports

The lack of organizational supports people who primarily communicate through facial/body expressions receive is particularly concerning as organizational supports facilitate the achievement of personal outcomes. According to our analyses, the more organizational supports people who primarily communicate through facial/body expressions have in place, the more personal outcomes they have present, regardless of their impairment severity (see figure below). For example, a person who primarily communicates through facial/body expressions who receives 12 out of the 21 organizational supports is expected to have 11.8 personal outcomes present, whereas someone who receives 16 out of the 21 organizational supports is expected to have 15.2 personal outcomes present.

The Relationship Between Organizational Supports and Personal Outcomes For People Who Primarily Communicate through Facial/Body Expressions

The Power of the Personal Outcome Measures®

By Leanne Mull, CQL Quality Enhancement Specialist

In working as a CQL Quality Enhancement Specialist, there have been many opportunities to witness the power of the Personal Outcome Measures® (POM) interview in action. On two of those occasions it was used with people who communicate without using words. The power of the tool became evident to the interviewer, the support staff, and the observer almost immediately in both cases. The people being interviewed were also able to experience the difference in their lives stemming from the information gathered during the interview. The examples below are just two stories of how the tool positively impacts people. (All names have been changed to protect privacy.)

Helping Improve Harry’s Happiness

Harry is a handsome man who is around forty years-old and lives in a large ICF/DD. Harry has a 1:1 support staff person who is required to provide arms-length supports for all waking hours. Harry needs this support because, left alone, Harry will eat his clothes.

As the interview started, with the support of his 1:1 staff, Harry sat quietly and every minute or so would pull at a thread, tear his shorts, and try to eat the fabric. Harry’s 1:1 staff would take the small piece of fabric and say “Harry, stop eating your clothes.” The interviewer, speaking directly to Harry asked him about his family, and Harry’s 1:1 staff answered and spoke about the fact that Harry’s dad visited a couple of times a week and his mom and brother visited every other week. She spoke about how happy Harry is to see them. While she was talking about his family and their visits, Harry continued to pull at his clothes, but instead of trying to eat the threads he would blow them with a little puff and watch them float. This continued throughout the interview as his 1:1 staff relayed information she knew, while the interviewer asked the questions directly to Harry.

Toward the end of the interview the 1:1 staff person shared that Harry’s favorite thing to do was to bounce on a giant yoga ball, but that Harry fell off of the ball a couple of weeks ago and was no longer allowed to use it. As she was relating the story, I am sure you can guess what happened, Harry started eating his clothes again! The interview wrapped up and immediately upon exiting the room the interviewer and the observer discussed the fact that a chair could be purchased to make the yoga ball more stable. Harry got his yoga ball back the next day. Harry’s life is better because of what was learned in his POM interview.

Stephanie Finds Her Voice

Stephanie, who is in her fifties and has a beautiful smile, had as the result of an an emergency, unexpectedly came to live in a group home just two weeks before her Personal Outcome Measures® interview. All of Stephanie’s paperwork said that she was “non-verbal.” In fact, when Stephanie’s family member/guardian was contacted for permission to conduct the interview she confirmed that as far as she knew Stephanie did not communicate with words and she wondered whether any information would be gathered.

As the interview began the interviewers asked some ‘getting to know you’ questions before delving into the POM questions and, having only known her for two weeks, support staff were struggling to help. When they asked Stephanie her favorite color, she said “Purple.” Once the interviewers overcame the shock of hearing her speak, they continued the interview and Stephanie was able to participate. When they shared the fact that she could talk with her guardian, the guardian began to cry. Stephanie had been in full life service for over thirty years and, at some point, had been labeled “non-verbal.” A follow up with the interviewers revealed that “she has not stopped talking since the interview and is very good at making her needs and wants known … LOUDLY!”

The power of the POM tool is not just the tool, it is the time invested in learning from each person, what, as far as they are concerned, will make their lives better. Sometimes it is a yoga ball, sometimes it is a voice.

Guidance For Encouraging Communication

By Vickie Overpeck, CQL Quality Enhancement Specialist

Observation is the first step. It’s important to observe people’s body language including excitement, anxiety, frowning, smiling, withdrawing, shutting down, lighting up, and then reflect that “feeling” back to them:

• Are you sad?
• Are you excited?
• Are you thinking about something fun?

Visual cues and tools can be used when talking about topics, such as sharing pictures of food while discussing dinner or having photos of places when deciding somewhere that people might like to go. Pictures should be simple and clear. Using professional advertising icons that are created by expert designers can be useful, as they are recognizable and help us associate imagery with places, things, or concepts. For example, most kids learn to recognize the McDonald’s arches long before they can say “McDonalds” – same goes for other well-known icons that can be used in conversations about places to go or things to do.

Photos of others the person lives, works, or spends time with can be helpful in interactions and discussions by asking questions like “Who is this?” or “Do you know this person? Point to her/him and ask “Who is a friend of yours?” or “Who would you like to go to the movies with?”

Gestures and natural signs can accompany verbal communication, as they help people visualize what you are saying. Encourage them to use these signs too, like making a cup with your hand to talk about drinking something or putting both hands to one side of your head, tilting your head, and closing your eyes to talk about going to sleep.

Video recordings can by used by filming activities and then talking about it – if the person isn’t too shy or self-conscious for this approach. For others who are a bit of a “ham,” even using a microphone might encourage them to speak more.

Picture albums will assist you in discussing interests, activities, and more, as they will encourage people to talk about the fun times they experienced. You can also use cookbooks with a lot of pictures to prompt people to talk about their favorite food, which is something that most everybody likes to talk about!

Preference testing can encourage communication. In this method you present two items in the same ‘category’ – like two colors, two pictures, two shirts, two kinds of cereal – and ask, “Which one do you like better?” Then pay attention for a reaction such as a look, a head nod, a pointed finger, and acknowledge that choice, with responses such as “Did you pick the blue one?” or “I see you like Rice Krispies better than Corn Flakes – is that right?” After a while you can try three objects in the same category.

Expect the unexpected and get ready to be surprised when people communicate in new ways. Have high expectations for people and be prepared to be quiet, patient, and to listen with all your senses.

Have fun! Some people communicate best during engaging activities. I watched a group of adults who did not have effective communication skills play an exciting game of Yatzee – and, boy were they communicating during that game and everyone had a good time!

Objects can be used to learn about topics. For example, when exploring grooming and personal care, you could fill a box with a hairbrush, toothbrush, small mirror, deodorant, wash cloth, bar of soap, comb – and so on. Then ask someone to take one item out of the box and show or “tell” how you would use the item. Encourage all efforts to communicate about the use of the item. One organization used this technique to teach people more about their rights.

Augmentative Alternate Communication (AAC) may be helpful. You can try different forms of AAC such as simple pictures, flash cards, or electronic devices with buttons that says things like “Yes” and “No” when pushed. iPads and other tablets have all sorts of apps available to help people express themselves. CQL has developed The CQL POST App, a user-friendly app that provides a snapshot view of a person’s quality of life, which can be completed either independently by the person receiving services or with support by others.

Tips For Gathering Information and Using It Effectively

By Gretchen Block, CQL Director of Partner Engagement

1. Interviewers should always talk to more than one person who knows the individual well. Sometimes people suggest things that they think would or should be important to the individual vs. what the individual truly wants or needs.
2. You shouldn’t assume because something was important at one time in a person’s life, that it is important today. Our opinions and interests change over the years. Our past is part of our story, but it might not be the most important thing presently.
3. Like Vickie referenced above, interviewers can be a detective of sorts, by observing body language, gestures, facial expressions, etc. You can ask to see the person’s personal space such as an apartment, bedroom, etc. It might be helpful for people to share their photo albums, class yearbook, scrapbooks, etc.
4. In identifying the location for the interview, the interviewee might want to choose their favorite place to hang out. Can the POM interview happen there? It’s a great way to ensure you are in an environment that is comfortable for the person!
5. A great activity for DSPs and people they support is to make a collage poster/book of all of the things that are important to the person before the POM interview and ask them to bring it to their interview. CQL has developed a free Person-Centered Plan Template that could be used for this purpose.
6. One POM ‘Golden Rule’ is to always ask the question. You should never let a lack of words affect your ability to get the right answer.
7. People receiving supports should be supported and encouraged to try new and different things. For example, vanilla ice cream might be someone’s favorite but only because no one ever offered them mint chip. Everyone needs experiences, education, and exposure to the world around them in order to make informed decisions about what’s important, how to spend their time, who to spend their time with, etc. For people who do not use words to communicate, make sure to take note of their reactions to each of these new experiences.