Copyright © 2002 Paul H. Brookes Publishing Co. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.

It should be noted that research that uses systematic preference assessments with person-centered planning is still in its initial stages. Additional investigations are needed to more definitively determine how to accurately identify the most important preferences of people with severe multiple disabilities as part of person-centered planning. When proceeding with research in this area, as well as in person-centered planning in general, several additional considerations warrant attention if person-centered planning is to truly enhance the lives of these people.

Careful Specification of What “Preference” Means

One problem that occurred repeatedly in our research was that a reported preference was not always well specified. What an individual was perceived to like by support team members frequently was not specified to a degree that could be validated by using preference assessments. For example, some plans reported that individuals liked anything social. What was meant by social — in terms of how to actually support a person — was not clear. Lack of specification led to different interpretations across support team members regarding what should occur when implementing person-centered plans; social activities meant different things to different team members.

At this point, it is not clear why some preferences identified in various person-centered plans lack sufficient specification to allow careful validation or implementation. Potential reasons for problems with specification include varying skills among support team leaders in facilitating person-centered planning meetings, differences in the efficacy of the various planning procedures used to identify preferences, and variations in skills and commitment among support team members within the planning process. The degree of severity and complexity of disabilities across focus individuals may also be a factor. Nevertheless, the primary point is that an important step in ensuring that truly valid preferences are identified, as well as appropriately attended to by support personnel while implementing person-centered plans, is to carefully articulate an individual’s preference. It would be useful for investigations to demonstrate specific procedures within the person-centered planning process that result in clearly identified preferences of individuals with severe multiple disabilities.

Emphasis on a Focus Person’s Most Important Preferences

When considering the precise identification of preferences in person-centered planning as just summarized, a caution warrants mention. By requiring careful specification of preferences to allow validation through systematic preference assessments, a risk exists that person-centered plans will begin to focus on preferences that readily lend themselves to specification. Correspondingly, there may be a de-emphasis on what is most important for overall quality of life for the individual. In this regard, behavioral research that developed the assessment technology has been characterized as focusing on preferences that affect relatively small aspects of life for individuals with severe disabilities (cf. Newton, Ard, & Horner, 1993). Such research has tended to emphasize preferences for specific leisure items (e.g., Roane, Vollmer, Ringdahl, & Marcus, 1998; Zhou, Goff, & Iwata, 2000) or individual snack and food items (Roane et al., 1998; Roscoe, Iwata, & Kahng, 1999). Although these items are important, other areas can have a broader or perhaps more powerful impact on overall life quality, such as one’s preference for where and with whom to live and how to spend one’s day. The latter preferences are often reflected in person-centered plans of individuals with mild or moderate disabilities. Yet, plans for people with severe multiple disabilities sometimes lack these types of preferences or include them with questionable accuracy.

There are several reasons why the behavioral literature has not focused on assessing more life-encompassing preferences, relative to the typical focus on leisure and food items, among people with severe multiple disabilities. For one, the original intent of developing preference assessment procedures was to identify reinforcing items to use in programs to teach adaptive skills. In this area, the behavioral preference assessment research has been quite successful. Discrete items or snacks that are identified as preferred frequently have been used successfully as reinforcing agents in teaching and related programs (Green, Reid, Canipe, & Gardner, 1991; Green et al., 1988; Pace et al., 1985; Ringdahl et al., 1997). Another reason why the behavioral assessment literature has not targeted more life-encompassing preferences is that a technology for assessing and validating these types of preferences among people with severe multiple disabilities has not been developed. The latter preferences, ranging from with whom to live to where to obtain supported employment, do not readily lend themselves to the systematic, repeated presentation trials that are common in the behavioral research on preference assessment.

Using situational preferences as an alternative means of assessing and validating preferences may lend itself to more global preferences. Situational assessments involve arranging for people to experience different situations, such as going to various restaurants, and closely observing how they respond to each situation or asking them which situations they liked the most (Everson & Reid, 1997). As of 2002, most reported situational assessments have not involved people with severe multiple disabilities. As indicated next, however, initial research does suggest that situational assessments may also be used to verify global preferences identified in person-centered plans by focusing on indices of happiness and unhappiness.

Several investigators have evaluated preferences across different situations among people who have severe multiple disabilities by systematically observing indices of happiness (Favell, Realon, & Sutton, 1996; Ivancic, Barrett, Simonow, & Kimberly, 1997). To obtain information about which situations individuals enjoy, indices of happiness — which generally involve responses such as smiling or laughing — are behaviorally defined and systematically observed as the individuals participate in different situations. Happiness indices have been shown to occur more frequently with activities that have been validated as preferred through systematic preference assessments relative to activities that have been systematically assessed as being nonpreferred (Green, Gardner, & Reid, 1997). In addition, support personnel who are familiar with an individual tend to report that the person likes activities if the individual shows the specified happiness indices during the activities (Green & Reid, 1996). Nevertheless, using happiness indices for situational preference assessments has been investigated infrequently, particularly for helping to ensure the validity of global preferences identified in person-centered plans.

Considerable research is needed on how to accurately identify preferences that affect comprehensive aspects of the lives of individuals with severe multiple disabilities. Given the existing state of preference assessment technologies, cautious reliance on the consensus of support team members currently appears to be the best available approach for determining life-encompassing preferences within person-centered planning. In some ways, the behavioral preference research supports such a conclusion. Although investigations have repeatedly shown that the opinions of support personnel are not very accurate for identifying various preferences, the research has shown that opinions of support personnel are rather accurate for identifying the strongest preferences of a respective individual (Green et al., 1991; Parsons & Reid, 1990). That is, when faced with numerous items and activities, support personnel experience difficulty in accurately ranking the items and activities but they are usually accurate in identifying items and activities that are the most liked. Consequently, with respect to preference validity, an important part of person-centered planning for people with severe multiple disabilities is forming a consensus among support team members regarding an individual’s strongest preferences.

Procedural Practicality

As recommended previously in this chapter, person-centered planning with people who have severe multiple disabilities should be supplemented with systematic preference assessments to ensure the validity of reported preferences, at least for those preferences that lend themselves to such assessments. A potential problem with this recommendation is that by adding systematic preference assessments to person-centered planning, the process requires more effort and time. Increasing the effort and time necessary to develop and implement person-centered plans can reduce the likelihood that the process will be conducted adequately by support team members. It is well established that the more effortful or time consuming a work responsibility becomes (e.g., implementing components of person-centered plans), the less likely it is that the work responsibility will be fulfilled adequately (Everson & Reid, 1999; Reid, Parsons, & Green, 1989). Hence, consideration should be given to the practicality of including preference assessments as part of the person-centered process.

Directing attention to the practicality of fulfilling work expectations of human service staff can be somewhat controversial when considering responsibilities associated with person-centered planning. Support teams involved in person-centered planning should be comprised of people who have a close relationship with the focus person and a sincere interest in supporting the individual in fulfilling important dreams and desires (Lyle O’Brien, O’Brien, & Mount, 1997). It is assumed that the relationships with and interest of support team members provide motivation to develop and implement a plan to make the focus person’s dreams and desires a reality (cf. Everson & Reid, 1999). In some ways, relying on the special relationship between support team members and a focus person to motivate successful development and implementation of a plan represents the purest form of a person-centered approach. In actual application, however, person-centered planning is not conducted in its purest form in many human service agencies.

As discussed in the next section, the environments in which people with severe multiple disabilities frequently live, work, and play tend to mitigate against providing person-centered supports and services. In those environments, special care must be taken to ensure that person-centered planning occurs in the intended manner. Paramount to the approach’s successful application is a work environment that maximizes the probability that support team members adequately fulfill their duties associated with implementing person-centered plans. As noted previously, the more complex or cumbersome staff responsibilities become in conducting person-centered planning — such as by adding systematic preference assessments to the planning process — the less likely it is that the responsibilities will be fulfilled and the process will occur as intended. Hence, concern is warranted regarding how efficiently preference assessments can be conducted.

Although some attention has been directed to conducting preference assessments in a time-efficient manner (e.g., Roane et al., 1998; Windsor et al., 1994), the process typically requires support personnel to give relatively significant time and effort. The amount of time involved in conducting preference assessments can be a particular issue when considering the large number of preferences reported in many person-centered plans. In an attempt to keep staff work expectations at a reasonable level when supplementing person-centered planning with systematic preference assessments, Green and colleagues (2000) developed a brief, embedded assessment process. In this approach, the assessment is embedded into the individual’s daily routine during the implementation phase of person-centered planning. Items and activities that are reported in the plan as being preferred are provided during the day, and a quick assessment of how the person responds to each item and activity is conducted. By observing whether the individual approaches or avoids the first daily presentation of each item and activity, a valid assessment of whether the item or activity is truly desired can be completed in only a few minutes.