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Building Authentic Visions: How to Support the Focus Person in Person Centered Planning

Research to Practice 15

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Originally published: 3/1998

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Introduction

The importance of self-determination for young people with disabilities has become an increasing priority for young people, families, and professionals. Person centered planning has emerged as one mechanism for young people to build self-determined futures with the help of a supportive group of people.

In general, person centered planning encourages an individual to involve personal and community networks in planning for the future. The process includes articulating a vision and coordinating resources and supports to make the vision a reality. Therefore, the effectiveness of planning depends on the support of significant others who assist in problem solving and resource development. Equally important in determining the success of a planning process is considering how facilitators, family members, and other members of the person's social network influence the focus person's participation.

This summary is meant as a resource for facilitators, family members and friends who are invited to be part of a person centered planning process. Recommendations are made to challenge planning team members to think about how their own behavior influences the participation of the focus person.

Methodology

This summary was developed from research conducted at the Institute for Community Inclusion between June 1996 and June 1997. The research examined student participation in Whole Life Planning and involved:

The researchers:

Findings

1. Factors that encouraged participation from the focus person:

1a. Speaking directly to or directing questions toward the focus person. This encourages the student to answer and discourages other participants from answering for them. This can be challenging for families from cultures in which an elder traditionally answers questions. In all situations, negotiate ways in which the focus person's voice can be heard.

1b. Verifying or checking with the focus person on the meaning of his or her answers, responses and suggestions before moving on. Make sure that he or she understands and agrees with the contributions of others. This creates an opportunity to draw the focus person back into the discussion if he or she becomes quiet or withdrawn.

1c. Speaking at the focus person's language level. By rephrasing words or concepts that were abstract, the focus person participates more productively and remain engaged in conversation.

1d. Waiting for a response from the focus person. When the facilitator allows the focus person time to formulate and produce an answer, other family members and friends are less likely to jump in, and the focus person is less likely to rely on them for answers.

1e. Using accommodations to support the focus person's understanding and communication. These include pictures, visual or auditory clues, technology, or any other concrete techniques that facilitate communication.

1f. Following the focus person's lead to change the subject, take a break or talk more about a topic.

1g. Setting and maintaining a positive tone. A positive tone can be maintained by reframing negative comments and addressing concerns in the establishment of action steps after the vision is completed.

1h. Setting aside fears and concerns while the vision is developed. When parents and others feel that their fears and concerns will be addressed during action planning the focus person can be encouraged to speak about their plans for the future and expand upon them during the building of the vision.

2. Factors that decreased participation:

2a. Using jargon. Words or phrases that were unclear to the focus person.

2b. Using the third person. Speaking about the focus person to the group.

2c. Using patronizing language. Correcting or talking about the focus person in a way that causes the student to lose face or become embarrassed.

3. Factors that were important for the group process:

3a. Writing suggestions or statements made by group members on flip charts or meeting notes. This provides a visual record of the discussion, increases the amount of shared information, and reinforces group participation.

3b. Using good group facilitation skills. For example: setting and maintaining the group tone, not letting one person dominate, responding to the group as a whole, eliciting input from quiet participants, keeping track of time and taking breaks, and encouraging participants to speak directly to other members of the group.

3c. Actively involving the focus person in the group process. As the group process moves along participation opportunities for the focus person may be lost. Ways to insure the involvement of the focus person in the group process include: Using pictures instead of written notes and teaching the focus person group participation and leadership skills.

Conclusion

When asked to facilitate, organize, or participate in a person centered planning process, it is important to consider how to maximize the leadership of the focus person. The goal of any person centered planning process is to develop a clear vision for the future built on the hopes and dreams of the focus person and to determine the supports and steps necessary to achieve the vision. The role of the group participants is:

  1. To support and be a resource to the focus person.
  2. To express their genuine concern and a personal relationship with the focus person.
  3. To make sure that the plans and visions come from the focus person and reflect what he or she wants from life.

In order to play these roles well, it is important for each member of a planning group to consider the following:

  1. Make sure the focus person drives the discussion and planning.
  2. Leave pre-conceived notions and expectations about the focus person's future at the door.
  3. Use multiple modes of communication throughout the planning process (written, pictures, objects, etc.).
  4. Help the focus person learn group process, decision making, and problem solving skills.

Maintaining a balance between one's own participation and the focus person's can be challenging. One set of parents in the study put it beautifully. The father said, "this has to come from Andrew." "I know," said Andrew's mother, "I'm trying so hard to sit on my hands!"

Resources

Butterworth, J., Hagner, D., Heikkinen, B., Faris, S., DeMello, S., and McDonough, K. (1993). Whole life planning: A guide for organizers and facilitators. (Available from The Institute for Community Inclusion (UAP); Boston, MA: Children's Hospital and University of Massachusetts at Boston)

Butterworth, J. (Producer). (1994). More Like a Dance: An Introduction to Whole Life Planning. (Videotape available from the Institute for Community Inclusion (UAP), Children's Hospital, 300 Longwood Avenue, Boston, MA 02115)

Mount, B., Beeman, P., and Ducharme, G. (1988) What are we learning about circles of support: A collection of tolls, ideas, and reflections on building and facilitating circles of support. Manchester, CT: Communitas, Inc.

Pierpont, J., O'Brien, J., and Forest, M. (1993). PATH: A workbook for planning positive futures. Toronto, Ontario, Canada, M6H 2S5)

Smull, M., and Harrison, S.B. (1992). Supporting people with severe reputations in the community. Alexandria, VA: NASMRPD. (NASMRPD, 113 Oronoco Street, Alexandria, VA 22314)

Vandercook, T., York, J., and Forest, M. (1989) The McGill Action Planning System (MAPS): A strategy for building the future. Journal of the Association for Persons with Severe Handicaps , 14(3), pp. 205-215.

Acknowledgements

This brief reflects the contributions of staff at the Institute for Community Inclusion and the Natural Supports Project, in particular John Butterworth, Noreen Donnelly, Sherill Faris, Katherine Honey, Deirdre Shaw and the families, students and school personnel who participated in the research.

For further information on this study, please contact Jean Whitney-Thomas, (617) 287-4300; (617) 287-4350 (TTY); ici@umb.edu

Institute for Community Inclusion (UAP)
Research and Training Center on Promoting Employment
University of Massachusetts Boston
100 Morrissey Boulevard
Boston, MA 02125
(617) 287-4300; (617) 287-4350 (TTY);
ici@umb.edu www.communityinclusion.org

This research was supported, in part, by a cooperative agreement, H133A30036, from the Administration on Developmental Disabilities. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration on Developmental Disabilities policy.

ICI: promoting inclusion for people with disabilities