As advocacy and self-advocacy for individuals with developmental disabilities increased, professionals recognized the importance of empowerment and ...
Journal of Behavioral Education, Vol. 7, No. 4, 1997, pp. 519-528
Using a Person-Centered Approach in Community-Based Instruction for Adults with Developmental Disabilities Diane M. Browder, Ph.D.,1,4 Linda M. Bambara, Ed.D.,2 and Phillip J. Belfiore, Ph.D.
Instruction is a variable that has enhanced community access for adults with developmental disabilities. Community-based instruction emerged as an especially useful format to teach individuals daify living and work skills in the settings where skills would be used. As advocacy and self-advocacy for individuals with developmental disabilities increased, professionals recognized the importance of empowerment and self-determination in gaining community access. Adult education that incorporates the values of person-centered planning will evolve beyond what has traditionally been viewed as community-based instruction. This article describes the characteristics of community-based instruction designed to enhance not only community access, but also the participant's overall quality of life. KEY WORDS: community-based instruction; person-centered planning; self-determination; adult living.
Through the litigation and advocacy of the 1970s, community access became a priority for adults with developmental disabilities. One important professional response was to develop methods to teach daily living and work skills in community contexts. This community-based instruction methodology was developed for a wide variety of skills and contexts and has been summarized in research reviews (Martin, Rusch, & Heal, 1982; Snell
'Professor, College of Education, Lehigh University, Bethlehem, PA. Professor, College of Education, Lehigh University, Bethlehem, PA. 3Associate Professor, Division of Education, Mercyhurst College, Erie, PA. 4Correspondence should be directed to Diane M. Browder, College of Education, Lehigh University, 220A lacocca Hall, 111 Research Drive, Bethlehem, PA 18015. 2Associate
519 1053-0819/97/1200-0519$ C 1997 Human Sciences Press, Inc.
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& Browder, 1986) and in guidelines for practitioners (lest & Spooner, 1996). The profession might be criticized for overreliance on instruction to achieve community inclusion. For example, earlier research focused almost exclusively on skill deficits (e.g., Aveno, 1987; Crnic & Pym, 1979). Important progress was made when instruction was designed that was relevant to the community and the participant's chronological age. But, when professionals assumed that community access depended on skill mastery, they inadvertently adopted a readiness model. Adults with developmental disabilities were considered ready for community opportunities when they mastered the skills typically used in these settings. By contrast, many adults gained community access through advocacy, natural supports, and a good environmental match without acquiring all essential skills. The analysis of research on community living, conducted by Nisbet, Clark, and Covert (1991), also found that community living success was dependent on setting and social variables, not just individual performance. With this growing awareness of the multiple variables that effect community access, Smull and Bellamy (1991) challenged professionals to shift their focus from the limitations of individuals to the constraints of environments. The growing focus on natural supports (e.g., Nisbet, 1992) illustrated the shift toward understanding and modifying environmental constraints to gain community access. One method that emerged to overcome environmental constraints was "person-centered planning" (Mount, 1994). In this approach, advocates or professionals work with the individual with developmental disabilities to identify meaningful goals and to create action plans to reach these goals. This process has also been called "lifestyle planning" (O'Brien, 1987). With the growing emphasis on person-centered planning for lifestyle enhancement, the focus of community-based instruction needs further development to reflect the values of this approach. Individualized habilitation plans for adults that focus only on instruction and contain no action plan to increase social networks and overall community access fall short of essential outcomes targeted by person-centered planning. Community-based instruction that is a component of person-centered planning should not be viewed as compulsory, but rather as a continuing education opportunity. Lifelong learning can be a powerful form of support for all adults, including individuals with developmental disabilities. Lifelong learning provides not only a means to master new skills, but also a forum for leisure and social pursuits. Additionally, lifelong learning can be a method for coping with the challenges and stresses of life. As a form of lifelong learning, community-based instruction will be most relevant with a focus on lifestyle enhancement. For community-based
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instruction to be compatible with a person-centered planning focus, guidelines are needed that combine the values of lifestyle enhancement with the methodology of instructional support. O'Brien (1987) has defined five essential outcomes for person-centered planning for lifestyle enhancement: (a) competence, (b) community presence, (c) community participation, (d) respect, and (e) choice. By using these outcomes as the focus of community-based instruction, we can develop new directions for planning. These lifestyle outcomes will be reviewed to consider their implications for planning community-based instruction. Examples from the research literature are offered to illustrate how to develop these qualities.
PERSON-CENTERED PLANNING AND COMMUNITY-BASED INSTRUCTION COMPETENCE Community-based instruction has traditionally focused on increasing learner competence in daily living and work activities. The shift that is needed as individuals cease to wait for community access is to identify which competencies enhance participation now rather than focusing on skills needed for some future opportunity. The primary question in person-centered planning for competence is, "What would it take to increase the person's competence in more valued activities?" (O'Brien, 1987, p. 182). One way to increase competence quickly is to focus on partial participation through selection of active versus passive responding and to enhance the person's image and interdependence in activities (Ferguson & Baumgart, 1991). For example, an individual who is nonverbal and cannot yet use an augmentative communication system, may be able to socialize by smiling, sitting with others, and sharing materials. These skills may be achievable within a short time frame. To increase competence, we should teach in ways that empower adults to learn from themselves and their surroundings. Several important examples have emerged on teaching adults with developmental disabilities to self-manage their activities and learning. These have included teaching (a) the use of lists of "things to do" (Lovett & Haring, 1989), (b) picture charts to facilitate time management (Bambara & Ager, 1992), (c) self-verbalizations (Rusch, Morgan, Martin, Riva, & Agran, 1985), and (d) problem solving strategies (Hughes & Rusch, 1989). To empower adults to learn from their surroundings, we should teach responding to the cues in these environments, and to decrease dependence on instructional staff. Ford and Mirenda (1984) have described the importance of teaching individuals to respond to natural cues and consequences and have provided strategies to do so. For example, the instructor might
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accentuate natural cues such as pointing out the displayed price on a cash register. Some community opportunities provide instructors or guides (e.g., classes or tours). However, to learn from community instructors, individuals may temporary need coaches or peer support to participate. For example, in a study on fitness training, King and Mace (1990) used a personal coach to teach adults with mental retardation to follow an aerobics instructor. Similarly, when an individual begins taking community college classes, craft classes, or joins a club, they may need to learn the expected social behavior and to respond to the instructor's group lecture format. An alternative to introducing a coach in the context is to teach or encourage peers to provide support. For example, Likins, Salzberg, Stowitschek, Lignugaris-Kraft, and Curl (1989) taught food service co-workers to teach trainees with mental retardation food preparation skills by interspersing brief episodes of systematic instruction with their own work. The goal of competence, then, is not approached through amassing skills related to the participant's environments. Rather, competence is encouraged through instruction to empower the individual to learn from general adult education contexts, from natural cues, and from him- or herself. In this way, self-reliance for lifelong learning increases.
COMMUNITY PRESENCE AND PARTICIPATION Community presence is the sharing of ordinary places that are part of life in the community (O'Brien, 1987). Person-centered planning for community presence focuses on increasing access to, and participation in, current and new sites. The importance of providing instruction in community settings to obtain generalization has been well described (Nietupski, Hamre-Nietupski, Clancy, & Veerhusen, 1986). What has been less often considered in community-based instruction is the impact this form of instruction has on social integration. Does teaching adults in public stigmatize them? Wolfe's (1994) research began to address this issue by identifying community-based instructional strategies that were socially acceptable to the general public. Using instructional strategies discretely so that they are unobservable to the general public may be the best means to avoid stigmatizing the participant. Sometimes socialization is as important, or more important, than skill performance for community participation. For example, at some community laundromats, adults use the time waiting for clothes to be washed to socialize and help each other with their laundry. For such contexts, commu-
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nity-based instruction may focus on enhancing social support. Newton and Homer (1993) described how a social guide may be beneficial as a form of social support. Haring (1991) recommended using "template matching" to design instruction, to generate the skills to be taught from the social milieu itself. For example, Hoier and Cone (1987) used this method by having peers rate social attributes as "like my friend" or "not like my friend" and then using the preferred attributes as target skills for instruction for students with social deficits. Another way to incorporate the value of enhanced community presence in community-based instruction is to use private tutoring to minimize the need for public instruction. Simulations can be designed to replicate training conditions (Homer, McDonnell, & Bellamy, 1986). Through simulated instruction, staff may be able to utilize minimal instructional assistance in the community site where instruction, or the occurrence of an error, could lead to social embarrassment. For example, through private tutoring, an adult might learn to cash a check and use social greetings. When going to the bank, the person who provides instructional support may stand in line to cash a check or make an inquiry, minimizing or obscuring any instructional prompts that need to be offered. Using socially acceptable, nonintrusive instruction, encouraging social support, and including private tutoring are three ways to enhance community presence while training skill competence. To some extent, tension will always exist between enhancing social integration and teaching new skills in community contexts. Callahan (1992) has described this tension as the balance between the natural validity of a training approach and its instructional power. Community-based instruction needs to include enough assistance to be effective without interfering with the typical activities, assistance, and socialization of the site.
RESPECT Respect is often obtained through providing important community services or holding valued community roles. In person-centered planning, roles are identified that allow the person to express individual gifts or talents. Consideration is also given to decreasing the stigma the person experiences (O'Brien, 1987). Sometimes opportunities need to be created for the person to use talents for the benefit of others. Within the realm of education, respect may be obtained by attending a valued educational setting such as a popular continuing education class. Respect may also be increased by achieving skills that are valued by society for economic reasons
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(e.g., working for a well-respected company) or humanitarian reasons (e.g., providing volunteer services within a hospital). In contrast, instructional programs for adults with developmental disabilities have sometimes focused on issues that society devalues. For example, most adults without developmental disabilities manage incontinence through the use of sanitary products rather than by participating in toilet training programs or using guided assistance in public restrooms. To encourage respect for the individual served, we need to consider instructional planning secondary to overall lifestyle planning. Opportunities for the person to use talents as a contribution to society can be explored. Then, with an overall plan of action for personal empowerment, the role of instruction to encourage respect can be identified. For example, if the overall plan is for the person to gain a better paying job with benefits in an office setting and to be a contributing member of a civic organization, instruction might focus on image enhancement. The participant might receive community-based instruction on selecting flattering clothes and using the services of a hairstylist. Some private tutoring might be used to teach interview skills and social behavior in meetings. Some specific contribution for the civic organization might also be targeted, such as instruction in how to sort materials for a recycling project.
CHOICE The importance of choice and decision-making has become well recognized (Bannerman, Sheldon, Sherman, & Harchik, 1990; Brown, Bellz, Corsi, & Wenig, 1993; Guess, Benson, & Siegel-Causey, 1985). The primary difference in American society between learning experiences of adults versus school-aged individuals is that education is required for children, but not for adults. Adult learning experiences are chosen, and adults can choose not to participate in educational experiences. Although a choice not to continue learning may affect quality of life, the freedom to self-determine one's lifestyle is cherished by most adults. In American society, adult educational programs rely on careful marketing to entice adult learners to invest their time and money to enroll in the experience (e.g., college recruiters or advertising brochures for a recreational program). In contrast, many learning experiences for adults with developmental disabilities have been by-products of a service delivery system that requires an individualized habilitation plan to meet licensure regulations. To transform such plans into vehicles that support values like respect and individual choice, we may have to reorder the focus of such planning. First and foremost, any individual plan for an adult should be led by the
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individual and should focus on defining what the participant wants. Second, the plan needs to become an "action plan" versus a traditional teaching plan. This action plan will include commitments to make contacts or perform other activities to help accomplish the desired outcomes. For example, participants in the planning meeting might commit to finding a course on pet care, contacting the humane society about volunteer options, and obtaining job procurement services. Finally, the individual, with the planning committee's assistance if needed, identifies instructional objectives that support the priorities of the action plan and preferences for how these will be learned. For example, the individual might choose community-based instruction to learn the public transportation system to a volunteer site but rely on other volunteers in the humane society to teach the pet care routine. If an individual has not had many opportunities to make these types of choices, instruction in choice-making itself may be important (Bambara & Koger, 1996). For example, adults may benefit from learning how to make selections and to self-schedule activities (Bambara & Ager, 1992).
GUIDELINES FOR RESEARCH AND PRACTICE Fifteen years ago, community-based instruction was often planned by a professional focusing on skills needed to "survive" in the community. Few differences were notable in the instructional format used for adults in the community versus children in a classroom. Instructors might even carry clipboards and give loud, directive prompts. In the late 1990s, the person with developmental disabilities will first and foremost decide what settings and activities are preferred. Professionals offer various forms of support to create access to these settings including community-based instruction as one form of support. Instruction will still typically use the direct and systematic strategies found effective in research (e.g., task-analytic instruction with prompting), but it will be unobservable to the general public, respectful of the individual, and focused on enhancing the person's self-determination and lifelong learning. To plan community-based instruction from a person-centered perspective, we can use the guidelines described in Table 1. These guidelines focus on improving the lifestyle outcomes of community presence, competence, respect, and choice. First, an action plan is used to determine ways to increase community presence and participation. Careful planning, advocacy, and other actions encourage community access and minimize the need for instruction. To respect adult choice, we should provide individuals the opportunity to direct this action planning for themselves and to select the type of instructional support desired. Some adults may want to master an
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1. Develop Action Plans for Community Access First Use person-centered planning meetings for the adult to identify life goals and actions needed to achieve these priorities. Instruction can be an important component of this action planning, but cannot replace it. 2. Ask Individuals What They Want to Learn Adults have the right to choose what and when to learn, and they may choose not to participate in community-based instruction. 3. Offer Instruction That Increases Competence Now Community-based instruction is designed to increase participation NOW, not to get individuals ready to participate. 4. Offer Instruction That Enhances Self-determination Teaching self-management skills and self-advocacy can enhance adults' ability to pursue their life choices for themselves. Some adults may benefit from instruction in how to make choices. 5. Offer Support to Learn In Inclusive Settings Community colleges, recreational facilities, churches, hospitals, and other organizations offer continuing education for adults. Community-based instruction, if needed and desired, may take the form of personal assistance to participate in these settings. 6. Enhance Natural Supports and Social Networks The natural support in a setting may be the only instruction necessary. Be careful not to impose unnecessary assistance. Support may be indirect by encouraging social networks versus providing direct instruction; or, instruction may focus on social skills enhancement. 7. Respect Individual Privacy and Avoid Stigmatizing Avoid community-based instruction methods that stigmatize the person in public. Instruction should be discrete and unobservable by the general public when possible. When observable, the methods used should be socially valid (e.g., acceptable to employers). Sometimes private tutoring is preferable to public instruction. 8. Offer Instruction In Skills That Enhance Respect Instructional support can enhance an individual's ability to offer their contribution to society (e.g., as a volunteer) or societal status (e.g., in a highly valued job).
entire routine such as purchasing groceries, some may prefer to focus on a specific aspect such as using a money access machine or credit card, and others may prefer to participate with no instruction. If individuals choose instructional support, instructors can encourage competence through focusing on the essential aspects of participation, enhancing self-determination skills, and encouraging natural supports. To enhance respect, the instruction should be designed to preserve the individual's privacy and to avoid stigmatizing the person in public. Finally, respect is also enhanced by focusing on skills that are valued for adults.
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New research in community-based instruction is needed to incorporate these guidelines. Some of the research questions that might be addressed include: (a) How can community-based instruction be designed to enhance both social integration and personal competence? (b) What types of community-based instruction are acceptable or unacceptable to self-advocates? (c) What types of private tutoring enhance community participation? (d) How can individuals with more severe disabilities increase self-determination in community contexts? and (e) What outcomes are derived from a longitudinal community-based instruction program? In summary, community-based instruction has been an important form of support in creating community access for adults with developmental disabilities. However, professionals need to consider how community-based instruction fits into the overall context of person-centered planning so that this effective technology is used to enhance respect, competence, community presence, and self-determination.
REFERENCES Aveno, A. (1987). A survey of activities engaged in and skills most needed by adults in community residences. Journal of The Association for Persons with Severe Handicaps, 11, 85-91. Bambara, L. M., & Ager, C. (1992). Using self-scheduling to promote self-directed leisure activity in home and community settings. Journal of The Association for Persons with Severe Handicaps, 17, 67-76. Bambara, L. M., & Koger, F. (1996). Providing opportunities for choice making throughout the day. Innovations. Washington, DC: AAMR, 11-30. Bannerman, D. J., Sheldon, J. B., Sherman, J. A., & Harchik, A. E. (1990). Balancing the right to habilitation with the right to personal liberties: The rights of people with developmental disabilities to eat too many doughnuts and take a nap. Journal of Applied Behavior Analysis, 23, 79-89. Brown, F., Belz, P., Corsi, L., & Wenig, B. (1993). Choice diversity for people with severe disabilities. Education and Training in Mental Retardation, 28, 318-326. Callahan, M. J. (1992). Job site training and natural supports. In J. Nisbet (Ed), Natural supports in school, at work, and in the community for people with severe disabilities (pp. 257-276). Baltimore: Brookes. Crnic, K. A., & Pym, H. A. (1979). Training mentally retarded adults independent living skills. Mental Retardation, 17, 13-16. Ferguson, D., & Baumgart, D. (1991). Partial participation revisited. Journal of The Association for Persons with Severe Handicaps, 16, 218-227. Ford, A., & Mirenda, P. (1984). Community instruction: a natural cues-and-corrections decision model. Journal of The Association for Persons with Severe Handicaps, 9, 79-87. Guess, D., Benson, H. A., & Siegel-Causey, E. (1985). Concepts and issues related to choice making and autonomy among persons with severe disabilities. Journal of The Association for Persons with Severe Handicaps, 10, 79-86. Haring, T. G. (1991). Social relationships. In L. H. Meyer, C. A. Peck, & L. Brown (Eds.). Critical issues in the lives of people with severe disabilities, (pp. 195-218). Baltimore: Brookes.
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Homer, R. H., McDonnell, J. J., & Bellamy, G. T. (1986). Teaching generalization skills: General case instruction in simulated and community settings. In R. H. Homer, L. H. Meyer, & H. D. B. Fredericks (Eds.), Education of Learners with Severe Handicaps (pp. 289-314). Baltimore: Brookes. Hughes, C, & Rusch, F. R. (1989). Teaching supported employment employees with severe mental retardation to solve problems. Journal of Applied Behavior Analysis, 22, 365-372. King, D., & Mace, F. C. (1990). Acquisition and maintenance of exercise skills under normalized conditions by adults with moderate and severe mental retardation. Mental Retardation, 28, 311-317. Likins, M., Salzberg, C. L., Stowitschek, J. J., Lignugaris-Kraft, B., & Curl, R. (1989). Co-worker implemented job training: the use of coincidental training and quality control checking on the food preparation skills of trainees with mental retardation. Journal of Applied Behavior Analysis, 22, 381-393. Lovett, D. L., & Haring, K. (1989). The effects of self-management training on the daily living of adults with mental retardation. Education and Training in Mental Retardation, 24, 306-323. Martin, J. R, Rusch, F. R., & Heal, L. W. (1982). Teaching community survival skills to mentally retarded adults: A review and analysis. The Journal of Special Education, 16, 248-267. Mount, B. (1994). Benefits and limitations of personal futures planning. In V. J. Bradley, J. W. Ashbaugh, & B. C. Blaney (Eds.), Creating individual supports for people with developmental disabilities, (pp. 97-108). Baltimore: Brookes. Newton, J. S., & Homer, R. H. (1993). Using a social guide to improve social relationships of people with severe disabilities. Journal of The Association for Persons with Severe Handicaps, 18, 36-45. Nietupski, J., Hamre-Nietupski, S., Clancy, P., & Veerhusen, K. (1986). Guidelines for making simulation an effective adjunct to in vivo community instruction. Journal of The Association for Persons with Severe Handicaps, 11, 12-18. Nisbet, J. (1992). Natural supports in school, at work, and in the community. Baltimore: Brookes. Nisbet, J., Clark, M., & Covert, S. (1991). Living it up!: An analysis of research in community living. In L. H. Meyer, C. A. Peck, & L. Brown (Eds.), Critical issues in the lives of people with severe disabilities (pp. 115-144). Baltimore: Brookes. O'Brien, J. (1987). A guide lo life-style planning. In B. Wilcox & G. T. Bellamy (Eds.), A comprehensive guide to The Activities Catalog, (pp. 175-190) Baltimore: Brookes. Rusch, F. R., Morgan, T. K., Martin, J. E., Riva, M., & Agran, M. (1985). Social validation of a program to reduce topic repetition in a nonsheltered setting. Education and Training in Mental Retardation, 15, 208-215. Snell, M. E., & Browder, D. M. (1986). Community-referenced instruction: Research and Issues. Journal of the Association for Persons with Severe Handicaps, 11, 7-11. Smull, M. W., & Bellamy, G. T. (1991). Community services for adults with disabilities: Policy changes in the emerging support paradigm. In L. H. Meyer, C. A. Peck, & L. Brown (Eds.), Critical issues in the lives of people with disabilities (pp. 527-536). Baltimore: Brookes. Test, D. W., & Spooner, F. (1996). Community-based instructional support. Innovations. Washington, DC: AAMR, 5-16. Wolfe, P. S. (1994). Judgement of the social validity of instructional strategies used in community-based instruction sites. Journal of The Association for Individuals with Severe Handicaps, 19, 43-51.
