Person-Centered Planning: Research, Practice and Future Directions. S. Holburn and P. Vietze (Editors). Baltimore: Brookes, 2002.
Although the concept of person-centered planning is broadly accepted, like the broader paradigm shift in supports for individuals with developmental disabilities, there remains a wide gap between rhetoric and reality. In this book the authors both highlight progress and establish challenges for research and implementation of person-centered planning. Holburn and Vietze raise two seemingly simple questions: “Does person-centered planning really work? and “How can we best adopt person-centered planning to maximize its effectiveness “(p. xxiv)?
In her foreword, Mount notes the importance of person-centered planning as “both a philosophy and a set of related activities that lead to simultaneous multi-level change” (p. xxi). She notes that such planning is not a process that can be “reduced to or measured by its smallest parts.” The authors in this book spend relatively little time defining or assessing the component parts of person-centered planning approaches they use. This, in all fairness, reflects the state of the art, but the lack of attention to defining methodology makes it difficult to answer Holburn and Vietze's first question. Can we ask whether person-centered planning works if we are not in agreement about what it is? On the other hand, the authors make a substantial contribution to establishing a conceptual framework for considering the components and placing person-centered planning in a larger context of behavioral research. The second contribution of the book is a clear presentation of the importance of a holistic and organizational/cultural look at change and change process that needs to surround a commitment of person-centered planning.
Person-Centered Planning on an Individual Level
Agreeing on what person-centered planning is, is by no means a simple task. In his chapter, Wehmeyer highlights the subtleties of understanding the interaction between method and values. He identifies the potential conflict between engaging significant others in planning while simultaneously promoting self-determination, and more of this type of detailed analysis would have been welcome. The chapters vary in the locus and scope of change that their authors focus on. This variation reflects fundamental questions about the role of person-centered planning in systems and the current state of the art. The focus of change efforts vary from creating a more person-centered culture in congregate living settings to design of an individual lifestyle using microboards. The processes used vary from a long-term individualized planning process to a short-term structured preference assessment. Tied together by the thread of promoting person-centeredness in supports, the chapters beg for discussion about what the parameters of person-centered planning are and what outcomes we should expect.
The book provides multiple perspectives on understanding individual choices and the effectiveness of the process. The chapters in Section III (“Preference Assessment and Program Evaluation”), in particular, help frame issues in our understanding of goals such as choice-making and hope for the future. Dumas et al., for example, found that individuals had little understanding of the planning process and little belief that change was possible. In fact, even simple goals like buying vacuum cleaner bags were major systemic obstacles. Nevertheless, they noted that despite delays and frustration, individuals in their study had a more positive outlook on the future tied to their goals. Reid and Green raise questions about the accuracy of our understanding of choices, particularly for individuals with communication challenges. They identify the importance of multiple approaches to assessing our understanding of preferences while raising the need for continued research in preference assessment in which investigators are able to address larger (lifestyle) choices rather than merely simple choices, such as what food to eat.
Finally, the book's authors collectively raise questions about the anticipated outcomes of person-centered planning. A subtext debate in the book is the role of person-centered planning in facilitating gradual versus more radical lifestyle change. The authors of these chapters took fundamentally different paths, reflecting perhaps the variation of the system's readiness for change and differing assumptions about what is possible within the context of a specific system. The debate is illustrated in subtle ways in the development of preference inventory approaches. Davis and Faw developed a preference assessment as a strategy for better matching individuals to settings. Although contributing to a more direct understanding of the individual's preferences, this approach is inherently boundaried by the questions selected for an inventory and the choices that responses are matched to, boundaries that many will construe as antithetical to person-centered planning. On an individual level, the research also illustrates the ability of individual level change to affect the larger culture of a system. Holburn and Vietze note positive changes in organizational responsiveness, team effectiveness, and staff attitudes as a result of facilitating change over time for an individual with significant challenging behaviors.
The authors raise concerns about the effectiveness of current planning initiatives, although they do an effective job of framing the need for a systems level understanding of person-centered planning. Amado and McBride, along with other authors, note that the process is difficult to implement. “In many cases, planning groups did not generate desirable futures for individuals with disabilities that stretched beyond current service system options to live as full community citizens. Many changes were at “level one—increased choices and better life experiences within the same models of service delivery” (p. 369). Butkus et al. illustrate the scope and complexity of the change initiative needed for systems level change at the state level, incorporating a new cadre of facilitators, funding policy, performance measurement, and a broad training and technical assistance initiative. Sandserson emphasizes the importance of addressing team culture, processes, and opportunities for reflection. Finally, Malette's chapter reflects the importance of a deeper exploration of roles and relationships as part of person-centered planning. Malette discusses the group's conversation about the blurring of lines between support and friendship, and the focus on the individuals' preferred types of relationships. The discussion reminded me of O'Brien and O'Brien's warning in their introductory chapter that the early demonstration of person-centered planning was not just the development of a toolbox of techniques, but that it came from a community of practice that challenged our large world view of supports and systems. This focus on sustaining a community of practice is an important lesson as we expand use of an approach that is not easily understood.
Research and Measurement Considerations
The research reported in this book reflects the difficulty the field faces in establishing methodology that matched the fluidity and creativity of the approach. The qualitative approach used by Malette and others seems to best address individualized and often unanticipated outcomes. The chapter authors also provide useful models for action research at the local level as an approach to facilitating change (cf. Sanderson).
Authors, including Wagner, do an effective job of arguing for the compatibility of applied behavior analysis and person-centered planning measurement issues, suggesting that alternative methodologies may still develop. Wagner notes that person-centered planning and behaviorism are both essentially environmental in approach, with a focus on changing environmental conditions. A significant remaining challenge is our approach to measuring outcomes. The authors highlight the need for a longitudinal perspective if we are going to focus on broad life style changes as central outcomes of our work. Reid and Green also note concern that preferences are rarely specified in plans with enough clarity that they are testable for validation purposes. At the same time, they suggest that requiring that all preferences be operationally (behaviorally) defined may cause team members to focus on those life areas that can be specified, de-emphasizing goals that may be more central to a person's happiness.
There are few definitive answers in this book, but it raises many useful questions about the goals of our work, the role of person-centered planning and related strategies, and the systems challenges inherent in promoting true person-centered and person-directed lifestyle change. We have not achieved the goal of identifying critical components. On an individual level the authors raise questions about the critical components of planning, including how do we ensure genuine choices? How do we prevent support givers and family from misinterpreting or shaping a team's understanding of choices? What planning approach should we adopt? Smull and Lakin note that available planning processes have varying strengths. There is little research or information on making choices between approaches.
On a systems level, how do we support the expansion of person-centered planning while keeping facilitators grounded in a community of practice that can address the complexity and subtlety of the process and the shifting roles a facilitator must assume? What is the role of person-centered planning in structured systems, such as large residential facilities? What supports and resources need to be in place to maintain fidelity to the approach and its values?
Does person-centered planning work? The results reported in this book suggest that the approach creates hope, and there are substantial examples of positive impacts on an individual's lifestyle, activities, and opportunities. This book throws down the challenge to raise the bar for person-centered planning research and, perhaps, to change the questions.