Have you ever been faced with a task that you didn’t want to begin, or been in the middle of an activity you didn’t feel like completing? Chances are you were able to postpone or abandon the activity entirely.
For some individuals with intellectual disabilities, however, communicating their desire to refuse, postpone, or end a task or activity may be extremely difficult, if not impossible. Even if they are able to effectively communicate, they may still be expected to comply with the demands placed upon them. This can lead to problematic behaviors such as aggression, self-injury, and property destruction as the individual tries – sometimes desperately – to escape.
As family, friends, and providers of children and adults with intellectual disabilities, we sometimes feel that it is our job to make sure the people we support live “normal” lives. We want them to participate in the kinds of activities we participate in, complete the same chores we complete, exercise as much and as often as we do, and develop the skills we think are meaningful.
The problem is, we often avoid or escape our own tasks, opting to watch just 15 more minutes of television, or to ride a bike instead of walk, or do the laundry tomorrow, not today. This is an unfair double standard.
Our job should be to encourage participation in meaningful activities, facilitate learning and skill development, promote independence, and provide opportunities to build relationships with others. But if the individual in our care does not want to participate in the activities we are offering, then he or she should be able to refuse, or at least be offered an alternative option.
As a clinician working with adults in residential and day rehabilitation programs, I find that activity schedules can be an effective way to promote on-task behavior. Although I understand the importance of staying on task, each schedule I create has intrinsic flexibility and can be changed if that is what the individual wants. Prior to the start of any activity, I let the individual know that he or she can postpone the activity, stop the activity at any time, or skip to the next activity on the schedule without consequence. This offers him or her a level of control and makes it unnecessary to act out in order to escape.
Although I highly recommend this type of negotiation, I understand that there are some activities and tasks that are non-negotiable because they concern someone’s health and safety. For example, an individual cannot refuse to evacuate the home if there is a fire. For adults in residential programs, this type of refusal most likely requires a behavior support plan, to guide caretakers through effective interaction styles and ways to address the behavior. This may include overcoming resistance and physically escorting the individual to a safe place. If this is the case, appropriate consents must be obtained from guardians or family members approving the use of any type of physical intervention.
But, for the most part, plans and programs designed to help individuals with intellectual disabilities learn new skills and develop relationships should include opportunities to refuse, postpone, or terminate activities they do not wish to participate in.
We all deserve the right to exercise control over our own lives. When we honor this right for people with special needs, we can decrease the likelihood that they will engage in problematic behaviors and help them feel respected, important, and heard.
Teka J. Harris is the clinical director for the Western Massachusetts division of the May Center for Adult Services. She can be contacted in West Springfield, (413) 734-0300, ext. 261 or by email to firstname.lastname@example.org.
May Institute is a national nonprofit organization that provides educational, rehabilitative, and behavioral health services to individuals with autism spectrum disorders and other developmental disabilities, brain injury, mental illness, and behavioral health needs. The May Center for Adult Services in West Springfield provides day and residential services to adults with developmental disabilities living in Western Massachusetts. For more information, call (800) 778-7601, or go online to www.mayinstitute.org.