Feature Issue on Person-Centered Positive Supports and People with Intellectual and Developmental Disabilities
10 Ways to Respond to Meaning-full Behavior
What follows are 10 things you can do to support a person with intellectual or developmental disabilities whose behavior is troubling you. It is not a list of “quick fix” strategies for stopping unwanted behavior. It is a list of ideas for uncovering the real things that a person might need so that you can be more supportive
1. Get to know the person.
The first step almost seems too obvious to state: Get to know the person! It is too often the case that people who develop interventions do not know the person in any meaningful sense. They know the person as the sum total of his or her labels, but know little about the person as a “whole” human being.
Make a point of spending time with the person in places that he or she enjoys, during times of the day that he or she chooses. At a time that feels right (you will have to trust your intuition on this one), tell the person about your concerns and ask for permission to help (it’s rude not to). If the person has no formal means of communication, ask anyway. Sometimes people understand what is being said, but they have a difficult time letting others know that they understand.
2. Remember that all behavior is meaning-full.
Difficult behaviors are “messages” which can tell us important things about a person and the quality of his or her life. In the most basic terms: Difficult behaviors result from unmet needs. The very presence of a difficult behavior can be a signal that something important that the person needs is missing (see chart below).
Obviously there are many needs that a person may be conveying with behaviors. A single behavior can “mean” many things. The important point is that difficult behaviors do not occur without reason. All behavior, even if it is self-destructive, is “meaning-full”
Here are some examples of the kinds of messages a person may be conveying with his or her behavior:
I’m lonely. | Michael’s brother was invited to a friend’s house for a sleep over. Michael is never invited to the homes of children because he goes to a “special” school 35 miles from his neighborhood. Michael has no friends to play with. |
|---|---|
I'm bored. | Roberta works at a sheltered workshop where she packages plastic forks and knives all day. Roberta is bored and she wants a real job. Her case manager says she “daydreams too much.” |
I have no power. | John’s mother is bossy and he sometimes sits down on the grocery store floor to let her know he is angry and fed up. |
I don’t feel safe. | Conrad often refuses to use the restroom. He was attacked in a restroom when he was younger and he is afraid. |
You don’t value me. | Gloria has a reputation for engaging in troubling behaviors, but few know that she is an avid supporter of environmental issues and a loving aunt. Gloria resents the way others see her. |
I don’t know how to tell you what I need. | June is not able to use words or signs to communicate. What “works” in the institution that she lives in is to bite her arms when she needs something different to happen. |
I don’t feel well. | Walter hits his ears with his fists. He has chronic ear infections but it is assumed he hits his ears to “get attention.” What he needs is a doctor’s attention. |
3. Help the person to develop a support plan.
Instead of a behavior plan to “fix” the person, help the person to develop a support plan that reflects a real and authentic life. John and Connie Lyle O’Brien (1987) suggest the following questions for building a support plan:
- How can we help the person to achieve health and wellbeing?
- How can we help the person to broaden and deepen his or her relationships?
- How can we help the person to increase his or her presence and participation in everyday community life?
- How can we help the person to have more choices in life?
- How can we help the person to learn skills that enhance his or her participation in community life?
- How can we help the person to make a contribution to others?
4. Develop a support plan with and for the person’s supporters.
Take time with your colleagues to develop support plans for each other. For example, what can you do to increase each other’s level of safety and comfort when someone is behaving dangerously? What can you do to have more fun at work? How can you have more control over your schedule and input into decisions? How can managers better support you?
5. Don’t assume anything.
It is easy to make the mistake of underestimating a person’s potential because of her labels or because he has failed to acquire certain skills. This is a tragic mistake. Start with the assumption that the person can understand you. You will be right more often than you think.
6. Help the person to develop positive and enduring relationships.
Ours is a social brain. We are hardwired to belong. Sadly, many people with intellectual and developmental disabilities live lives of extraordinary isolation. In my experience, it is not a person’s experience with disability that is at the root of his or her suffering, but rather the isolation that often results from that experience. If you want to help people, help them to form positive and enduring relationships.
7. Help the person to make a contribution to their community.
A powerful strategy for helping people to form positive and enduring relationships is to help them find a way to make contributions to others. Remember, it is important to overcome the belief that the person has nothing to share. It takes time and determination to help the person and others to see strength and the capacity to give when deficits were all that anyone ever saw before.
8. Instead of ultimatums, give choices.
Choice is a powerful alternative topunishment. If the person’s behavior challenges you, help find more desirable ways to express the needs underlying the behaviors. Instead of ultimatums, give choices (e.g., “Bill, I know you’re upset. What would help? Would you like to go for a walk? or take a ride? You need a chance to calm down.”)
Help the person to make choices all day and make sure there are always desirable outcomes to choose from. Norman Kunc has said that:
1 option = tyranny
2 options = a dilemma, and
3 or more options = a real choice.
9. Help the person to have more fun.
Fun is a powerful antidote to problem behaviors. People with intellectual and developmental disabilities often live lives devoid of joy. Many must endure reward schedules for “good behavior.” Help the person to add to his or her list of interesting (and really fun) things to do. Spend time in regular community places where people hang out. Make joy the goal.
10. Establish a good working relationship with the person’s primary health care physician.
Many people who exhibit difficult behaviors do so because they don’t feel well. The sudden appearance of behavior problems may be a signal that the person does not feel well. Illnesses as common as a cold or ear ache can result in behaviors as inconsequential as grumpiness or as serious as head banging. Help the person to achieve a sense of wellness through healthy habits and regular visits to medical professionals who understand the issues of disability.
References
O’Brien, J., & Lyle, C. (1987). Framework for accomplishments. Lithonia, GA: Responsive Systems Associates.