www.dimagine.com Things You Can Do 10 to Support A Person With Difficult Behaviors

David Pitonyak

Supporting a person with difficult 1. Get to know behaviors begins when we make a commitment to know the person. Sadly, the person. it is often the case that the people who develop an intervention to stop The first step in supporting someone from engaging in difficult a person with difficult behaviors do not know the individual in behaviors almost seems too any meaningful sense. Instead, they see obvious to state: get to know the person! the person as a someone (or something) It is too often the case that p eople who that needs to be fixed, or modified. But develop interventions to eliminate attacking a person’s behavior is usually unwanted behavior do not know the ineffective and always disrespectful. person in any meaningful sense. They know the person as the sum total of his Think about someone you know who or her labels, but know little about the engages in difficult behaviors. Ask person as a “whole” human being. yourself, "What kind of life is this person living?" Consider how you Make a point of spending time with the would feel if you lived the person's life. person in places that he or she enjoys, How would you behave? during times of the day that he or she chooses. It should be a comfortable What follows are 10 things you can do place where both of you can feel safe to support a person whose behavior is and relaxed (e.g., a quiet room, a nice troubling you. It is not a list of "quick restaurant, a walking trail in a nearby fix" strategies for stopping unwanted park). behavior. It is a list of ideas for uncovering the real things that a person At a time that feels right (you will have might need so that you can be more to trust your intuition on this one), tell supportive. 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

Version 20 January 2002 David Pitonyak—1 www.dimagine.com It’s almost too obvious to state: spend time with the person

others know that they understand. Roberta's sister is a doctor at the local The important point, always, is to ask hospital. She has her own house and is the person for permission to stick your her parent's pride and joy. Roberta nose into their business, even at the works all day at a sheltered workshop risk of seeming silly in front of people where she packages plastic forks and who think the person cannot knives. She lives at home and is tired understand up from down (they’re of packaging. She wants to get a real usually wrong). job. Roberta's case manager says she day dreams too much. 2. Remember that all "I have no power." behavior is meaning- John likes to sit down on the sidewalk when the bus arrives to take him to full. school. His mother becomes very angry and tells him that there will be Difficult behaviors are "messages" no dessert when he gets home. John which can tell us important things laughs when the bus driver threatens about a person and the quality of her him with time out. life. In the most basic terms: difficult behaviors result from unmet needs. The very "I don't feel safe." presence of a difficult behavior can be Conrad uses a wheelchair and is not a signal that something important that able to defend himself adequately from the person needs is missing. Here are attacks by another man. Conrad some examples of the kinds of the worries that he will be hurt and often kinds of messages a person may be cries when left alone. Staff think he conveying with his or her behavior: has a psychiatric illness.

“I’m lonely.” "You don't value me." Michael’s older brother was invited Gloria has a "severe reputation." over to a friend's house for a sleep People from all over the state have over. Michael is never invited to the heard stories about her terrible homes of children because he goes to tantrums. No one knows that she is a a "special" school 35 miles from his very caring person who worries about neighborhood. Michael has no friends environmental issues. The only part of to play with. Gloria people pay attention to is her problem behaviors. "I'm bored."

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"I don't know how to tell you know what he or she needs and a stranger thinks you should stop. what I need." feels? Is the person experiencing It can be difficult enough to stop June does not know how to use physiological or psychological behaviors we choose to stop (e.g, words or sign to let other people distress? What kinds of smoking, excessive eating)! know what she was thinking. She medications is he or she taking? lives in an institution where she Do they help? Instead of a behavior plan to learned that the best way to get "fix" the person, help the person people's attention was to bite Finally, if you’re stumped, ask, and the person's supporters to your arms. It hurts, but it is the “Are there times when the develop a support plan that only thing that "works." person exhibits this behavior reflects a real and authentic life. frequently?” and “Are there times John and Connie Lyle O'Brien "My ears hurt." when person exhibits this suggest the following questions Walter hits his ears with behavior infrequently or not at for building a support plan. Note his fists. His job coach all?” Answering these two how different these questions are wants to stop and wrote a questions can tell you a great deal from those we typically ask, such behavior plan for "not about the meaning of the as "How can we reduce this hitting." Weeks later, at a person’s behavior. With time, person's problem behaviors?" or scheduled doctor's you should be able to see a "How can we manage this appointment, it was learned that discernable pattern. behavior?" Walter had a low-grade ear infection. Anti-biotics cleared up For example, you might find that 1. How can we help the person to the infection and Walter has the person engages in the achieve health and wellbeing? stopped hitting his ears. difficult behavior in the morning 2. How can we help the person to hours, but rarely in the afternoon. maintain his or her relationships and Obviously there are many needs Ask, “What happens in the make new ones? that a person may be conveying morning that might cause the 3. How can we help the person to with her behaviors. A single person to behave this way?” or, increase his or her presence and behavior can "mean" many conversely, “What is happening participation in everyday community things. The important point is in the afternoon that causes the life? that difficult behaviors do not person not to behave this 4. How can we help the person to have occur without reason. All way?” (Hint: it often has more choices in life? behavior, even if it is self- something to do with the things a 5. How can we help the person to destructive, is "meaning-full." person is being asked to do, and/ learn skills that enhance his or her or who is asking the person to do participation in community life? Ask the person (and/or the it). 6. How can we help the person to make person’s supporters) what he or a contribution to others? she needs to be happy. Find out 3. Help the person who he or she counts on in a The team can ask, "Is our vision pinch. How o ften does he or she to develop a support for the person similar to the see loved ones and friends? vision we hold for ourselves and plan. each other? When we think What are his or her favorite activities? Where does he or she about what the person needs, do People who exhibit difficult we focus on "fixing" deficits or like to go? Ask the person what behaviors are usually subjected to leads to unhappiness. Who are do we think about supporting the a behavior plan at some point in person in achieving a real life?" the people who the person does their lives. It is rare that they are not like? How often does he or asked if they want a plan, let she see them? What are the alone invited to the meetings person’s least favorite activities? where one is developed. Instead, 4. Develop a support Since many people are a plan is developed by strangers plan for the person's experiencing physical and/or (e.g., the agency behaviorist who psychiatric distress, it’s also has spent less than two hours supporters important to know something "observing" the person). about the person’s physical and Just as it is simplistic to treat a emotional health. Does the Think about how difficult it person's behavior without person have a way to let others would be to stop a behavior that understanding something about

Version 20 January 2002 David Pitonyak—3 www.dimagine.com the life the person lives, it is excessively controlling and community. One hundred and simplistic to develop a support resistant to change. They begin twenty thousand people who plan without considering the to believe that individuals are were assessed "unemployable" needs of the person's supporters. worthy of their labels and because of the severity of their "beyond hope." They may even disability now work and pay taxes Many of our school and human resort to forms of punishment thanks to supported employment service delivery systems are based procedures that the average services. on the idea that a few people citizen would find repulsive and with greater knowledge and unacceptable. The very definition of mental power should bestow care and retardation itself has changed in skills to a larger number of Take time with your colleagues to recent years. The American people with lesser knowledge and develop support plans for each Associ ation for Mental power. "Success" is based on other. For example, what can Retardation (AAMR) has recently complian ce or obedience. A you do to increase each other's overhauled the definition. Gone person who engages in difficult level of safety and comfort when are pessimistic predictions that behaviors presents a real threat to someone is behaving saw little hope for the "severely a care-giver or teacher whose dangerously? What can you do retarded" and "profoundly competence is being judged by to have more fun at work? How retarded." The new definition this "compliance/ obedience" can you have more control over eliminates such terms altogether yardstick. The caregiver often your schedule and input into and emphasizes the importance expends great energy trying to decisions? How can managers of our supports. In short, an suppress the person's behavior in better support you? individual's potential depends order to maintain largely upon the adequacy of his/ "competence" (in many of our A fundamental question is, "If you her supports rather than some workplaces it is acceptable to stopped responding to the inherent flaw or "defect." share knowledge but not to share person's difficult behavior the power). way you do now, who Always remember that would you be?" people are people first. Punishment or the fear of Labels tell us nothing (in punishment (coercion) may be 5. Don't any real sense) about how the primary means of we can be supportive. We "motivating" staff. Many assume need not forget the person's approach each day with a mixture problem behaviors, but we of fear and dread. If they make a anything. must understand that people mistake, they could be "written have gifts and capacities that up," demoted or fired. If they try It is easy to make the eclipse our labels (or, as Herb something new, it may violate a mistake of Lovett has said, our "clinical policy or procedure. The underestimating a person's accusations.") Always remember unspoken message is "do as you potential because of her labels or to speak directly to the person are told" or suffer the because she has failed to acquire and explain things as clearly as consequences. Many of our certain skills. This is a tragic you can, even if the person's human services environments are mistake. labels suggest that he cannot "toxic" with fear. understand (at the very least the I have worked in the field for 15 person will understand the tone It is in this context that human years and am less confident in my of your voice). Never speak services workers are "told" to be ability to predict how much a about the person as if he were supportive. Workers are trained person understands with every not in the room. in positive approaches when the passing day. Recent developments make clear the underlying organizational 6. Relationships message is "maintain obedience." folly of making predictions about Under the deadening weight of a person's potential on the basis make all the these systems, even the kindest of diagnostic labels or past

and most respectful of caregivers performance. Hundreds of difference. may begin to exhibit their own thousands of people deemed difficult behaviors. They become "unfit" for society have left our Loneliness is the most significant institutions and now live in disability of our time.

Version 20 January 2002 David Pitonyak—4 www.dimagine.com find a way to help. Make sure Many people with disabilities, We all need to be needed. there are at least three desirable young and old, live lives of outcomes to choose from. As extraordinary isolation. Some Help the person to find a way to Norman Kunc has said 1 option depend entirely upon their make a contribution. Start when = tyranny; 2 options = a dilemma; families for support. A brother or the person is young if you can. 3 or more options = a real choice. sister or mom or dad are the only Giving is a lifelong endeavor. source of company. Friends are Things as simple as helping with Don't assume that helping the often absent altogether. household chores or helping out person to have more choices at church can teach the person means letting him do whatever he All too often, the only that she can make a contribution. wishes. Limit-setting is an relationships people have are with important and fair part of any paid staff. Although staff can Pour over the newspaper and find relationship. The real question is offer a great deal, they change the "Volunteers Needed" section. who is setting the limits and why. jobs frequently or take on new Talk to the person about joining If limits are imposed upon the responsibilities. The resulting an organization with you or with a person without their input, and if instability can be devastating to friend (e.g., Habitat for Humanity, the limits are part and parcel of a someone who is fundamentally a local food shelter, an life in which the person is alone. environmental group). powerless, even your best advice may even be interpreted as one Remember that there are many Help the person to learn how to more statement of "do it my way people in the community who will support friends (e.g., an invitation or else." You can expect a general benefit from knowing the person. to a sleep over, birthday cards, disregard for your advice if the Chances are the person has learning to ask "How are you person on the receiving end of the already made someone's life fuller. doing?" or "What's new?"). advice is "out of power." Be confident that she or he will make someone's life richer again Remember that it is important to Make a sustained commitment to and again. overcome the belief that the the person and to "fairness" in the person has nothing to share. It relationship. If the person has Learn more about personal takes time and determination to been on the outside of power for futures planning and other help the person and others to see too long, you may need to bend person-centered approaches to strength and the capacity to give more often than not for awhile. planning. when deficits were all that anyone The goal is to teach the person ever saw before. that giving is a two-way street. 7. Help the person to develop a positive 8. Instead of identity. ultimatums, give choices. John Bradshaw writes, " Our identity is the difference about us Choice is a powerful alternative to that makes a difference." punishment. If the person's behavior challenges you, help him Many people with disabilities to find more desirable ways to develop identities as "problem express the needs underlying the people." They are segregated into behaviors. Instead of ultimatums, "special" programs where they are give choices (e.g., "Bill, I know treated as people who have little you're upset. What would help? to offer. Soon their "treatment" Would you like to go for a walk? 9. Help the person becomes a kind of cage to protect or take a ride? You need a chance to have more fun. them from themselves and others. to calm down."

The real danger is that if enough Fun is a powerful antidote to people begin to think of the Allow the person to make problem behaviors. person as a "problem," she will decisions throughout the day. If

begin to believe it too. he has trouble making choices,

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People with significant disabilities Many people who exhibit often live in ghettos of reward. difficult behaviors do so because Indeed, it is often this poverty of they don't feel well. The sudden reward, not a lack of skills, that appearance of behavior problems keeps people separate from other may be a signal that the person community members. Many does not feel well. Illnesses as must endure reward schedules common as a cold or ear ache

for good behavior. The very few can result in beh aviors as

things that they enjoy are used inconsequential as grumpiness or contingently to reinforce as serious as head banging. compliance (talk about spoiling a good thing!). It is important to establish a working relationship with a good Count the number of things the primary health care physician. person enjoys, the number of Although this is easier said than places she likes to go. Compare done, the person will, especially if this to the number of things he has difficulty communicating, other people enjoy, the number need a doctor who can help him 10 Things You Can Do To of places other people go. Ask to stay healthy and well. Support A Person With yourself, "Is the person having Difficult Behaviors appeared fun? Is she experiencing enough Remember that physicians, like in the Summer/Fall 1997 issue joy? Is this an interesting life many other people who grew up of The Community Journal. with things to look forward to?" in our "separate" society do not always understand (and may even Back issues of the Journal can Help the person to add to her list fear) a person with substantial be downloaded from the of interesting (and really fun) disabilities. Commonwealth Coalition for things to do. Spend time in Community’s web site: regular community places where Don't be afraid of telling the www.commcoal.org people hang out. If you feel person's doctor that you don't

compelled to take data on understand a recommendation or You can also subscribe to the something, take data on the finding. It is important to get a Journal FREE of charge by amount of fun you find. Make clear and straightforward answer sending your name, full fun a goal. to all of your questions. address, zip code, Email

address (optional) and phone Remember too that it is 10. Establish a good number (optional) to: important to go beyond a

concept of health as the absence working The Community Journal of a disease or illness. "Feeling PO Box 10704 relationship with the well" and "being healthy" Blacksburg, VA 24060-0704 involves everything from a person's primary balanced diet to a good night's Or subscribe online at: health care sleep. Help the person to achieve www.commcoal.org a state of "wellness." physician.

I can be reached at Imagine, Mark Durand has said, "People 3694 Mt. Tabor Road, tend to get immature when they Blacksburg, VA. 24060 (w: 540- don't feel well." How often have 552-5629) or Dimagine@aol. you experienced a general decline com. in your mood or your ability to empathize with the needs of You can also visit my web site: others when you don't feel well? www.dimagine.com When we are sick, we are not ourselves.

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