Positive Behavior Support and Quality of Life

Excerpt from Magito McLaughlin, D. & Smith, C.E.(2017). Positive behavior support. In J. Matson (Ed.),Handbook of Treatments for Autism Spectrum Disorder (pp. 437-457) Switzerland: Springer.

 In 2002, Carr et al. published a key article in the Journal of Positive Behavior Interventions entitled, “Positive Behavior Support: Evolution of an applied science.” This paper outlined nine “critical features”of Positive Behavior Support that now define this body of work. The nine critical features included (1) comprehensive lifestyle change and quality of life, (2) lifespan perspective, (3) ecological validity, (4) stakeholder participation, (5) social validity, (6) systems change and multicomponent intervention, (7) prevention, (8) flexibility with respect to scientific practices, and (9) multiple theoretical perspectives. In the two decades since the paper was published, there have been many contributions to the PBS literature that have illustrated and elucidated these features. A review of this progress will be featured in this year’s newsletters. Each month, we will address one critical feature of PBS. We will define the feature and illustrate it
by using case studies and research examples from the literature. In addition, a discussion of measurement will be presented within each feature to highlight the new data collection strategies that have evolved in order to capture the broader concepts of PBS. While this information is by no means exhaustive, it is meant to provide an overview of the work that has been done to advance this relatively new field of endeavor.

Comprehensive Lifestyle Change
Comprehensive lifestyle change is the first critical feature of PBS and is aimed at
improving a variety of quality of life dimensions. These can include improvements in social relationships (e.g., friendship formation), personal satisfaction (e.g., self-confidence, happiness), employment (e.g., productivity, job prestige, good job match), self-determination (e.g., personal control, choice of living arrangements, independence), recreation and leisure (e.g., adequate
opportunities, good quality of activities), community adjustment (e.g., domestic
skills, survival skills), and community integration (e.g., mobility, opportunities for
participation in community activities, school inclusion). The person’s daily routines, schedules, and social interactions are thus important considerations. Outcome success emphasizes improvements in family life, jobs, community
inclusion, supported living, expanding social relationships, and personal satisfaction.

Turnbull and Turnbull (1996) offered an example of lifestyle change in their discussion of JT, a 26-year-old man with autism and behavioral challenges. Here, the goals of intervention were not limited to behavioral change per se but
were rather focused on lifestyle change. Treatment objectives were to have JT continue his paid work at a university as a clerical aide; to support JT in living in a home of his own, with room- mates (university students) who were available
to meet his personal support needs; to assist JT in using local public transportation to and from work; and to support JT in maintaining friendships and community connections at his favorite community spots–a local bakery, two jazz clubs, restaurants with live music, a church, a neighborhood grocery store, and a fitness center. The authors noted that for JT, the criteria for “assess- ing success” constantly changed in response to the complex ecology of his
emerging lifestyle. Following a 6-year planning process referred to as Group Action Planning (Turnbull & Turnbull, 1996), JT worked a total of 30 hours per week at the university as a clerical aide; he moved to a home of his own along
with two roommates from the university who each provided him with 12–15 hours of support; he learned to take public transportation to work; he joined a fraternity; and he made several friends in the community with whom he
maintained regular contact.

In a second example, Malette, Mirenda, Jones, Bunz, and Rogow (1992) presented a series of case studies that evaluated lifestyle changes associated with a Lifestyle Development Planning Process for four individuals with severe
disabilities and challenging behavior. The five-step lifestyle planning process included vision planning, assessing and remediating barriers to participation, assembling meaningful routines and schedules, developing specific intervention
strategies, and evaluating effectiveness by way of developing a monitoring system. Following intervention, all four participants engaged in a greater number of integrated activities during the mid- and post- intervention periods, compared with baseline. Three of the four participants experienced gains of more than 200% in the number of preferred, integrated activities they performed at the end of the intervention period. The two adults in the study were engaged in the first integrated work opportunities of their lives and two children participated to various degrees in regular classroom activities in their neighborhood schools. Furthermore, all four participants experienced at least slight increases in their unpaid social networks and performed a greater number of integrated activities with people who were not paid to spend time with them.

Finally, all four participants showed evidence of improved behavior and
communication skills over the course of the intervention. In an effort to evaluate lifestyle change, the field has seen an emergence of empirically validated measures designed to capture this complex ecology. For example, the Resident Lifestyle Inventory (Wilcox & Bellamy, 1987) measures the types of activities that are performed by an individual, how often each activity occurs, where each
activity typically occurs, which activities are preferred, and the level of support needed for participation. The Social Network Analysis Interview (Kennedy, Horner, & Newton, 1990) elicits information about the persons who are socially
important in the life of the target individual and the types and frequencies of activities in which persons in the social network typically engage with the individual. The Program Quality Indicators Checklist (Meyer, Eichinger, & Park- Lee, 1987) identifies the “most promising practices” in educational programs for persons with severe disabilities, as gleaned from a literature review and survey of nationally recognized experts in the field. It can assess the content of a
plan’s goals and objectives and track changes over time. The Ecocultural Family Interview (Weisner, Coots, & Bernheimer, 1997) assesses resources in the home environment, family connectedness, social networks, and leisure activities. Taken together, these tools represent a growing body of research aimed at measuring lifestyle change as an important feature of PBS.