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The Most Important Member: Facilitating the Focus Person's Participation in Person Centered Planning

Research to Practice 14


Originally published: 3/1998

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The transition from school to adult life represents a period of enormous change for young people and their families. Adolescents must begin to determine future goals and dreams and struggle with decisions around achieving them. For the adolescent with a disability, this period of transition requires a crucial planning process.

A variety of person centered planning models for transition have been developed that hold promise for strengthening the role of adolescents in preparing for their adult life. Person centered planning maintains an explicit emphasis on empowerment of and primary direction from the individual for whom the planning is being conducted. In order for person centered planning to achieve its mission, the focus person must participate fully in the process. As person centered planning becomes increasingly prevalent in the context of disability-related services, it is important to examine how individuals participate when they are at the center of the process. As a result, the Institute for Community Inclusion conducted research to understand the participation of young people as they transition from school to adult life using Whole Life Planning (Butterworth, Hagner, Heikkinen, Faris, DeMello and McDonough, 1993). Following a review of the major findings of this study, implications for practice are explored that focus on recommendations for increasing student participation.


Data for this research were collected using observations and semi-structured interviews. Specifically, 34 observations took place in organizational and planning meetings held in a variety of locations and with a variety of attendees. In addition, 15 interviews took place between the researcher and the students, parents, and facilitators involved in each planning process. Analysis involved coding and organizing data into emerging themes.


Four communities in Massachusetts participated in the study: Dartmouth, Fitchburg, Milton and Winthrop. These towns have schools which serve a diverse community of students including varying student body sizes, economic levels, and ethnic and cultural backgrounds. In each of the four communities, three students were asked to participate. Due to a small drop-out rate, however, data were collected on ten students who actually participated in the Whole Life Planning processes. These students ranged in age from 18-21 years, had a variety of developmental disabilities (e.g., down syndrome, cerebral palsy, autism), and communicated verbally and non-verbally. The students were from Latino (n=3), White (n=6) and Asian-American (n=1) families.


1. Students demonstrated four distinct types of participation: Active, Controlling, Limited, and Absent.

1a.Active participation occurred when the students:

1b. Controlling participation occurred when the students:

1c. Limited participation occurred when the students:

1d. Absent participation occurred when the students:

2. Student participation was influenced by the student's personal style, the size of the meeting, and the level of abstraction in the conversation.

2a. Personal style: definition

The student's personal style was defined as conversational style or preferred patterns of communication not specifically related to individual disabilities. Two distinct groups of students with unique conversational styles were observed. One group could be characterized as gregarious, and the other more withdrawn/low key. Behavioral examples of each group are shown in Table 1.

Table 1: Personal and Conversational Style

Group: Gregarious - Behavioral Examples: Enjoyed storytelling - Told/laughed at jokes - Greeted and interacted with others comfortably - Requested large meetings

Group: Withdrawn/Low Key - Behavioral Examples: Demonstrated shy behaviors - Hid face in pillows/arms - Turned face away from others when questioned or approached

Participation increased when:

Participation decreased when:

2b. Size of meeting: definition

Another factor contributing to the level of student participation was the number of individuals present for the gathering. The relationship between student participation and size of meeting seemed dependent on the student's personal style and the meeting purpose.

Participation increased when:

2c. Level of abstraction: definition

The level of abstraction was defined as the ability of the student to comprehend obscure or complicated information. For example, topical areas and discussion content specifically around planning and visions had a high level of abstraction. Level of abstraction was found to be the strongest predictor of active student participation.

Participation increased when:

Participation decreased when:

Additional examples of the relationship between the level of abstraction and student participation:

Participation was higher when abstraction levels were lower. There was high participation when discussions revolved around (1)what students do in their current jobs, classes, and highly preferred activities, and (2) deciding who will attend the upcoming planning meeting. Participation was lower when discussions revolved around (1) talking about the purpose of upcoming planning meetings, and (2) brainstorming about the future with meeting participants, especially when suggestions came out of context.

Implications and Recommendations

The intention of person centered planning is to be maximally individualized and build on the dreams and wishes of the focus person. The facilitator can help to insure that the planning process is truly reflective of a unique vision that the focus person actively drives. The following considerations may assist the facilitator in increasing student participation:

1. To prepare in advance, the facilitator can:

2. In the first few meetings, the facilitator can:

3. During the more abstract planning sessions, the facilitator can:


Through careful attention to the focus person's preferences in terms of style and structure, meaningful participation by the young adult can be achieved. The facilitator can place the primary emphasis on allowing the focus person to control both the structure and content of the planning process. Open-mindedness and creativity on the part of the facilitator will ultimately allow the person centered planning process to enhance participation from, and be more useful for, its most important member, the individual.

Helpful Resources

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

Butterworth, J., Hagner, D., Heikkinen, B., Faris, S., DeMello, S., and McDonough, K. (1993). Whole life planning: A guide for organizers and facilitators. Boston, MA: Institute for Community Inclusion, Children's Hospital.

Butterworth, J., Whitney-Thomas, J., and Steere, D. (1996). Using Person Centered Planning to Address Personal Quality of Life. In R. Schalock (Ed.), Quality of life: Its application to persons with disabilities, (pp. 5-24). Washington, DC: American Association on Mental Retardation.

Hagner, J., Helm, D., and Butterworth, J. (1996). "This is your meeting": A qualitative study of person-centered planning. Mental Retardation, 34(3), 159-171.

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

Mount, B., and Zwernik, K. (1988). It's never too early, it's never too late: A booklet about personal futures planning. Mears Park Centre, MN: Metropolitan Council. (Available from: Metropolitan Council, Mears Park Centre, 230 East Fifth St, St. Paul, MN 55101)

O'Brien, J., and Lovett, H. (1993). Finding a way toward everyday lives: The contribution of person-centered planning. Harrisburg, PA: Pennsylvania Office of Mental Retardation.

Pierpoint, J., O'Brien, J., and Forest, M. (1993). PATH: A workbook for planning positive futures. Toronto: Inclusion Press. (Inclusion Press, 24 Thome Cres., 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), 205-215.

Whitney-Thomas, J., Shaw, D., Honey, K., Butterworth, J. (1997). Building A Future: A Study of Student Participation in Person Centered Planning Processes. Boston, MA: Institute for Community Inclusion, Children's Hospital.


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 Jaimie Ciulla Timmons at the below address and number.

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;

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