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Issue 8: Person-Centered Planning
What Is Person-Centered Planning?
The most important thing to know about people who have experienced a brain injury is that each person is different (just as each was, prior to injury). Each person has different goals, different capabilities, different challenges, different resources ... Differences abound. But people with brain injuries are very similar to each other in that each is likely to experience strong frustration whenever he or she encounters others who seem to be trying to help but do so by trying to fit him or her into a mold. For example, in a health care setting, a therapist or doctor might tell you what you ought to want to do with your life or what people like you want to do. Something similar may happen in a vocational rehabilitation agency, in a waiver program or in any of the variety of agencies that people with brain injuries have to deal with in trying to get their needs met. A common reaction is "I'm not 'people like me', I'm me! Don't treat me like everybody else. Treat me like the person I am."
However, it often is hard for health professionals and others in helping agencies to understand that what they have to offer may not be what the person with a traumatic brain injury (TBI) really needs and wants. Their training or the rules of the agency in which they work tell them that "one answer fits all" or "my goal for the client is the only one that makes sense." It is sometimes hard for professionals to see the person with TBI as an individual first and as a person-with-a-disability second. It is equally hard for them to see that real help may not focus on disabilities at all, but may focus on the person's capabilities as the basis for shaping a new life, when the old life is disrupted by brain injury.
To counter the difficulties that professionals experience in seeing people with TBI as individuals, methods have been developed over many years that can help them make the switch, so that they learn to place the person with TBI at the center of planning. This means that the person now is asked, What do you want to accomplish? What are your goals, and how can we help?
Methods for doing person-centered planning began about 30 years ago in the worlds of developmental disabilities and mental health. The idea was to use techniques of planning that respected the needs of people with these disabilities. And, if one is to respect the needs of a person, the person has to be a full participant in planning for their own lives. Respect requires that the individuality of the person be honored.
Many methods for doing person-centered planning have emerged over the years, but they have certain common elements (adapted from Reference 1, below):
- First, planning involves not just the person with TBI (who we will call the focal person), but also friends, family members, and others who are identified by the focal person as important to his or her life. This is often called "the circle of support."
- Second, the basic principle underlying all planning activities is respect for the focal person: it is his or her life, and it is his or her voice that has primacy in all activities of the circle of support.
- Third, a focus on capabilities and strengths replaces the usual "tunnel vision," in which only the person's deficits and challenges are seen and then get defined as "what gets worked on." The focal person's challenges are not ignored, but they are not set at center stage.
- Fourth, the focal person's hopes and dreams for the future are the starting point for goals to be developed in the planning circle. A positive vision of the future is insured.
- Fifth, the plan that emerges from the circle of support (with the focal person still at the center) is a statement of priorities, with small action steps defined, as well as commitments from members of the circle of support. The focal person is alone neither in planning nor in carrying out the plan.
We have been involved since 1993 in developing and evaluating methods specifically for doing person-centered planning with people with TBI. We worked with Dr. Beth Mount in adapting techniques and materials she and colleagues had developed (see Reference 2) for use with individuals with developmental disabilities. The adaptation was necessary as people with TBI who want to engage in person-centered planning differ in many ways from people with developmental disabilities. A key difference is that people with TBI who want to move on after injury have to deal with "Who I was" in addition to "Who I want to be."
We published two basic tools for engaging in person-centered planning in 1998; they were revised in 2003 with support from the State of Minnesota. These materials can either be used within an agency's planning efforts for people with TBI who they are trying to serve, or they can be used by people with TBI who, with a circle of supportive people, want to develop a plan for "Moving On" after TBI. The first tool is a workbook (Reference 3) that people with TBI can use to engage in person-centered planning; the second is a manual (Reference 4) for any person who takes on the role of facilitating the circle of support. These materials were revised in 2003 and can be downloaded at no cost at www.tbicentral.org.
What Can I Do to Start Planning My Own Life?
If you are a person with TBI who wants to plan a future for yourself, you can start by downloading the "Moving On" workbook or by requesting a copy. You can review the basic ideas discussed in the workbook about planning for a better future, either alone or with a friend/family member. This review will give you a better sense of what person-centered planning is like and a sense of whether it fits you. If it does, you have two choices:
- Phone your state Brain Injury Association (get the phone number from the national Brain Injury Association Web site at www.biausa.org). Ask them what agencies in your area might work with you in developing a plan. Call the agency or agencies they suggest to see if they will help you with person-centered planning. If they are willing, take the workbook with you when you visit the agency.
- If an agency is not available or is not willing to participate in person-centered planning, you can explore in your family and friend network whether someone will be willing to commit to work with you to develop and carry out your plan. Ask that person to read the Facilitator's Manual which can be downloaded or is available upon request; this will give him or her a better sense of what you are asking him or her to do.
What Can an Agency Do to Develop Person-Centered Planning?
From Mount Sinai Medical Center. www.mssm.edu.
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