Inclusive and Supportive Education Congress International Special Education Conference Inclusion: Celebrating Diversity? 1st - 4th August 2005. Glasgow, Scotland

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So Now They Have a Job But Do They Have a Life?
Exploring How Individuals with Significant Disabilities Use Their Leisure Time

Margaret Hutchins, Ph.D.
Department of Special Education
Illinois State University
Campus Box 5910
Normal, IL 61790-5910
USA
mphutch@ilstu.edu

Adelle Renzaglia, Ph.D.
Department of Special Education
University of Illinois, Urbana-Champaign
288 Education Bldg.
1310 S. Sixth
Champaign, IL 61820
USA
 renzag@uiuc.edu

            One of the most valued educational outcomes in North American, and seemingly in additional international cultures as well, is successful employment. Having a job is often thought to lead to increased independence, self-esteem, autonomy, opportunity, and personal freedom. As a result of such thinking and the social validity of employment in many societies, the past 40 years have witnessed the initiation and continued efforts to document and disseminate effective strategies that contribute to employment outcomes for individuals with disabilities (e.g., Brooke, Inge, Armstrong, & Wehman, 1997; Hutchins & Renzaglia, 2002; McLoughlin, Garner, & Callahan, 1987; Moon, Inge, Wehman, Brooke, & Barcus, 1990). A wide array of research-based literature has focused on employment models (e.g., Obermayer, 1999; Schalock & Kiernan, 1997), policies (e.g., Simon, & Halloran, 1994), instruction and intervention methodologies (e.g., Mitchell, Schuster, Collins, & Gassaway, 2000), and program evaluation (e.g., Wehman, West, & Kregel, 1999) that are related to promoting community-integrated employment for persons with disabilities.

            The assumption then seems to be, that if an individual is successful in the work place then other domains of his or her life, such as leisure, independent living, and social relationships will fall into place as well. Additionally, for many years, professionals have explored interventions that offer individuals with disabilities increased competence in many of these areas to contribute to additional successful outcomes. There is substantial documentation of successful methods for assisting persons with disabilities to achieve recreation (e.g., Modell, & Valdez, 2002), domestic (e.g., Bauman, & Iwata, 1977; Cuvo, Jacobi, & Sipko, 1981; Schloss, Alper, Watkins, & Petrechko, 1996), and community skills (e.g., Branham, Collins, Schuster, & Kleinert, 1999; McDonnell, & Ferguson, 1989; Morse, Schuster, & Sandknop, 1996) as well increased social integration (e.g., Chadsey, & Shelden, 2002). Therefore, the combination of specific efforts that focus on the facilitation of employment outcomes and instruction of additional life skill areas should result in a well-rounded lifestyle.

            However, during the past decades in which we, as researchers, were developing and validating strategies that concentrated on promoting desired employment outcomes for youth with significant cognitive and multiple disabilities, we witnessed many successes within the vocational realm but began to wonder about what an individual’s life was like outside of work. The result of many informal inquiries suggested that, although many youth with developmental disabilities were successfully working in their communities, they had minimal social outlets and relationships and were not participating in desired recreational outcomes. The informal findings led to an interest in furthering an investigation regarding the leisure aspects of the lives of those individuals with disabilities who were successfully maintaining a job. The purpose of these proceedings is to 1) describe briefly two related research studies that explored the use of leisure time by several individuals with significant disabilities, 2) share the findings of those studies, and 3) discuss the implications for professionals and service providers.

Methodology

Description of Participants

            Six individuals who had been diagnosed with moderate to severe cognitive disabilities participated in the two research studies. Local special education professionals were recruited to help identify persons who fit three selection criteria that included 1) being employed at least 10 hours per week, 2) completion of their educational program within the past 3 years, and 3) currently living in the community. In Study 1, two of the young men who participated lived with their families. The third young man who participated in Study 1 lived in a home left to him by a family member but was within 2 blocks of his immediate family. In Study 2, one young man lived with his family, and the other two young men lived in their own homes in the same community as their families. Because the purpose of the second study was to identify individuals who were perceived to be experiencing successful leisure outcomes and compare the findings in order to explain differences in outcomes, an additional criterion for participant selection in Study 2 was the perception of successful involvement in leisure and recreation activities.

Description of Communities of Residence

            The three participants in Study 1 resided in one state within the Midwestern region of the United States; the three participants in Study 2 resided in a different state but still within the Midwestern United States. The communities were similar in the types of community service agencies that existed, and each had many opportunities for recreation. Both communities were of similar population size.

Description of Services

            In both Study 1 and Study 2, the participants had attended public education programs and had received special education services throughout their school years. In these education programs, there was an emphasis on transition to adult life outcomes as the individuals reached 14 years of age and above. Both educational programs that served all six of the participants focused on providing community-based experiences and instruction across life domains including employment, leisure, independent living, and use of the community. However, individuals in Study 1 could only participate in public education programs through the age of 21 years. Case management and other adult service support beyond the age of 21 years was provided if requested by the individual or family and within the scope of services offered by the local community agency. Individuals in Study 2 were able to receive public education support until the age of 26 years, and services were constructed and implemented using a collaborative model involving personnel from all agencies identified in the transition planning process.

Data Collection

            Both research studies were conducted using a qualitative methodology that included a review of records and interviews of the participants, their families, special education personnel who had provided educational services at the secondary level, and adult service providers who were responsible for case management services. Study 1 was completed prior to the initiation of Study 2, and then a comparison of findings was conducted.

            Individualized Educational Plans (IEP’s), transition planning documents, annual progress reports, and Individual Habilitation Plans (IHP’s) at the adult services level were reviewed for each participant. The number and type of IEP and IHP objectives as well as leisure activity preferences that were documented for the previous 5 years were noted.

            Interviews were conducted with each participant, one or both of the individual’s parents, and involved special education and case management personnel using an identified protocol. In order to maintain a thorough and accurate record of the interviews, each one was tape recorded and then transcribed.

Data Analysis

            After all interviews were transcribed, questions and responses were sorted and general themes were identified. We independently sorted the data across the themes and reviewed our agreements and disagreements. A consensus was reached for each disagreement initially discussed. Upon the completion the analysis of data collected during Study 2, a comparison of themes was made to those from Study 1 to identify those themes that were supported and those which should be revised, and those that were unique to Study 2.

Results

            The analysis of the document review and interview data regarding the individuals who participated in the two research studies revealed a series of themes that were found to be common across both studies and all six persons, several themes that were supported in Study 1 but unsupported or revised in Study 2, and a few themes that were unique to Study 2.

Summary of Themes Common Across Studies

            Several themes were identified from Study 1 and supported by the findings in Study 2.

1. One of the themes was that leisure and recreation did not appear as important as other curricular areas. Based upon written records and interviews, other curricular areas (e.g., vocational, academic) appeared to be more often emphasized or given more for attention by teachers and service providers.
2. A second theme supported by both studies indicated that the approach to leisure and recreation skills was informal in such a way that opportunities provided to the individuals with disabilities were more experiential and involved minimal instruction on specific objectives.
3. A third theme common to both studies included the assessment by service providers of leisure activity preferences of families and individuals in order to specify recreational opportunities that are enjoyed currently or may be of future interest.
4. The final theme supported by both studies focused on the lack of skills or competence of the individual with disabilities to initiate leisure activities or strategies for gaining access to activities. Although some instruction of specific recreation skills was implied, no evidence was revealed that confirmed a sense of competence to create a “leisure calendar” or independently initiate desired recreational choices.

Themes Supported by Study 1 and Unsupported and Revised in Study 2

            For some themes that were revealed in Study 1, there appeared to be no similar evidence in Study 2, and in fact, the same themes were unfounded.

1. One finding in Study 1 that was not supported in Study 2 was the lack of formality in the approach to leisure instruction such that minimal support was actually provided to individual participants in leisure activities. Individuals in Study 1 had very little support during the educational process or from the community adult service agency to engage in any type of individualized leisure activities. However, participants in Study 2 were provided as much support as necessary to involve them in recreational activities during their “free time”.
2. A second discrepancy between the two studies involved the types of activities in which the participants were engaged. In Study 1, there was little overlap between leisure activities supported in school and those enjoyed by the individual after graduation.   Community-based activities were primarily conducted with family members and not peers, and the community service agency involved two of the participants in a scheduled social activity with peers one to two times each month. However, the participants in Study 2 were engaged in numerous activities with peers, if so desired, supported by personnel of the community service agency, and a definite overlap between school and post-school activities was evidenced.
3. Although in Study 1, families perceived a lack of involvement of their children in recreational activities, the families of participants in Study 2 perceived involvement of their children in leisure opportunities.
4. Study 1 revealed that participants had minimal contact with peers of the same age. However, in Study 2 the theme was somewhat revised to indicate that there was minimal contact with former friends but that paid companions who provided support in day to day activities were peers of the same age. In addition, families of participants in Study 1 expressed regret about such little peer contact, but the same theme was not supported by the respondents in Study 2.
5. Responses from Study 1 indicated a feeling of lack of ownership of service providers for the lack of involvement by individuals with disabilities in leisure activities. It seemed that families felt it was up to them to do more and often expressed disappointment in themselves that they were not doing enough. Service professionals appeared to echo such a perception by indicating that it was not a professional responsibility to create leisure opportunities for the participants. However, in Study 2 in which there appeared to be satisfaction with the level of leisure involvement of the participants and a collaborative model of service delivery, ownership did not seem to be an issue. The theme of family responsibility was revised to indicate that the level of involvement was great, but the roles of the family members were to orchestrate and monitor the participation of the individual with a disability, not to be the primary support to engage in an opportunity.
6. The final theme that appeared to differ between Study 1 and Study 2 concerned the family’s initiation of activities for the individual and their expression of desire for the individual to take initiative in accessing recreational opportunities. In Study 1, the family interview data indicated that all planning was assumed by the family members and that they would like for their child to have gained skills to initiate interest and desired participation in preferred recreational opportunities. However in Study 2, the families directed and initiated with the service providers rather than the individual. They appeared to feel that there was no need for the individual to initiate desired leisure activities, yet in these examples the family member was not the sole source for planning participation in recreational activities.

Themes Unique to Study 2

            The results of the data analysis of Study 2 revealed a few unique themes that had not appeared in Study 1.

1. One of the new themes was the fact that all individuals with disabilities had participated in a futures planning activity which was conducted by one of the collaborating community service agencies.
2. A second theme exclusively expressed in Study 2 was that families perceived a lack of school involvement, specifically, in planning for leisure activities. The data indicated that personnel from community service agencies were more involved in the leisure planning and implementation than educational staff.
3. Finally, apparent in Study 2 was that services were available which was the key to facilitating recreational involvement for individuals with disabilities, no matter if the persons were residing with or nearby family members.

Discussion of the Findings

            The resulting themes of the studies that were conducted offered qualitative evidence to suggest some similarities and differences in the participation of leisure activities by young adults with disabilities. A finding shared by both studies indicates that individuals with disabilities may be participating in leisure activities as a component of their educational program but that the effort does not appear to systematically focus on the acquisition of specific leisure competencies nor on the skills necessary for persons to initiate access to desired recreational opportunities.

            However, the differences between the findings of the two studies could be attributed to the differences in the manner in which educational and habilitation services were provided to the participants. Participants in Study 2 were enrolled in education programs until 26 years of age, and their schedule of activities in the latter part of their educational program were designed to resemble as closely as possible the schedule that they would maintain after they aged out of the public education system. The careful and systematic attention to transition needs and adult life may have resulted in leisure outcomes that matched more closely those that were desired. In addition, support was provided via a collaborative network of agency personnel in which different persons assumed supervision and/or instructional responsibilities across all life domains. The role of families seemed not to be the “doers” but rather the monitors and the common thread that kept the schedule going and energy flowing. Such shared responsibility of offering services certainly could contribute to a wider array and more individualized services than the service delivery model identified in Study 1.

            Finally, perceptions concerning peer interactions and relationships differed across the findings as well. Although responses indicated that all participants had little contact with former friends, the data in Study 2 suggested that peer involvement was acceptable and not perceived as problematic as the support personnel were within the same chronological age range as the individuals they were assisting in leisure activities. Even though the companions were paid for their services, families seemed to be satisfied with the level of peer interaction since the paid providers were age appropriate peers.

Implications

            Although the results of these qualitative studies cannot be generalized to all individuals with disabilities and there were differences in the findings which can be interpreted in relation to differential services offered, there are many implications for professionals who serve individuals with disabilities in order to enhance or promote more effective leisure outcomes. Certainly attention to the suggestions described below that can be derived from the results of these studies are worthy of consideration and further systematic implementation.

            Adult services must be accessible and in place to facilitate increased involvement in leisure activities. A valid need for adult services appears to exist consisting of services that support the individualized needs of persons with disabilities in the area of leisure outcomes. Once educational services have been terminated, individuals may require assistance from community agency personnel to facilitate and transition persons with disabilities to chosen leisure activities. Exploring and presenting adult service options to individuals and their families to allow the selection of services that represent the values and desired outcomes identified by the individual is the responsibility of educational personnel.

            Individualized support must be provided. In order to truly represent the individual preferences in the use of leisure time, persons with disabilities must be permitted to develop their interests over time. They need to be able to indicate the support that would be beneficial for maintaining the preferences that are identified. Services need to move away from a “group” orientation in which the expectation is for individuals to participate in the programs that are established and exclusively offered as the only options. Choice is critical and models of service delivery that support choice and individual preferences are needed.

            Futures planning needs to be implemented. As a part of education program development and implementation, strategies need to be conducted that promote a futuristic vision of how an individual will be spending leisure time. Such a vision and targeted outcomes related to recreation should be consistently reviewed and revised as an individual develops increasing skills and interests. Futures planning should encourage the development of a repertoire of recreational choices in order to promote options that are socially valid and age-appropriate. An increased emphasis on leisure should be viewed as part of the transition process (Bedini, 1993).

            Educational services should offer an emphasis on leisure/recreation and promoting transitions to desired adult leisure opportunities. Systematic planning and curriculum development should occur with respect to the identification of meaningful leisure programming and experiences. It is not an area to be dismissed or assumed to be less important given the hours of free time that have been cited for individuals with disabilities (e.g., Dattilo, 1991). The value of satisfactory leisure involvement is important to the well being of all persons (Mahon & Bullock, 1992), and recreation is an essential part of an individual’s education (e.g., Ashton-Shaeffer, Johnson, & Bullock, 2000).

            Community service providers, families, and educational personnel must value recreation as a legitimate transition outcome and be actively involved in the process of developing and maintaining successful leisure outcomes. Collaboration among service providers, families, and individuals with disabilities is a critical component of facilitating successful leisure outcomes. As in all other areas of transition planning, communication and coordination among providers and families is imperative to insure the support necessary to actualize preferred recreational choices for an individual. Not only is it important for the knowledge about recreational needs, interests, and experiences to be understood (e.g., Mactavish & Schleien, 2000) but it is equally important to effectively advocate and serve individuals with disabilities in relation to leisure outcomes. Service providers must understand and value the role of recreation in the lives of individuals (e.g., Ashton-Shaeffer, Johnson, & Bullock, 2000).

            There is a need to move toward instruction of self-determination skills in leisure contexts that empower the individual with disabilities to choose, initiate, access, as well as participate in leisure opportunities. Historically, the literature indicates that individuals can acquire recreation skills. More recently, increased documentation has demonstrated successful outcomes in teaching individuals with disabilities self-determination skills and has advocated for expanded opportunities for them to demonstrate self-determined decision-making and choice. To apply the concept of self-determination to leisure outcomes is not only appropriate but a “good fit”. Certainly, one measure of a successful leisure life is the ability to initiate preferred activities, with friends, at desired times, to take place wherever desirable. It is one life domain in which choice and empowerment is a defining component. Leisure education programs must include not only specific recreation skills, but must also target developing competence in knowledge and use of leisure resources, social interactions and friendships, and leisure decision-making skills (Dattilo & Jekubovich-Fenton, 1995).

            The purpose of these two studies was to explore examples of leisure outcomes for a small sample of young adults with disabilities, to identify factors and variables that contributed to a perception of a quality leisure life, and to highlight the implications for service providers. Much has been written to support the idea of providing effective and longitudinal recreation programming. Advocates of leisure education have communicated repeatedly that there is substantive value in supporting the recreation needs of individuals with disabilities. The findings of these two investigations suggest the probability that leisure planning and education is not receiving deserved attention in many educational and habilitation services. It is with a renewed emphasis that the findings and discussions shared in these proceedings suggest that continued efforts must be made concerning the use of free time to realize a difference in the quality of lives for persons with disabilities.

References

Ashton-Shaeffer, C., Johnson, D. E., & Bullock, C. C. (2000). A survey of the current practice of recreation as a related service. Therapeutic Recreation Journal, 34(4), 323-334.

Bauman, K. E., & Iwata, B. A. (1977). Maintenance of independent housekeeping skills using scheduling plus self-recording procedures. Behavior Therapy, 8, 554-560.

Bedini, L.A. (1993). Transition and integration with leisure for people with disabilities: research update. Parks & Recreation, 28(11), 20-24.

Branham, R.S., Collins, B.C., Schuster, J.W., & Kleinert, H. (1999). Teaching community skills to students with moderate disabilities: Comparing combined techniques of classroom simulation, videotape modeling, and community-based instruction. Education and Training in Mental Retardation and Developmental Disabilities, 34, 170-181.

Brooke, V., Inge, K., Armstrong, A., & Wehman, P. (1997). Supported employment handbook: A customer-driven approach for persons with significant disabilities. Richmond, VA: Virginia Commonwealth University, Rehabilitation Research & Training Center on Supported Employment.

Chadsey, J., & Shelden, D. (2002). Social life. In K. Storey, P. Bates, & D. Hunter (eds.), The road ahead: Transition to adult life for persons with disabilities, pp. 137-156. St Augustine, FL: Training Resource Network, Inc.

Cuvo, A. J., Jacobi, E., and Sipko, R. (1981). Teaching laundry skills to mentally retarded students.   Education and Training of the Mentally Retarded, 16, 54-64.

Dattilo, J. (1991). Recreation and leisure: A review of the literature and recommendations for future directions.   In L.H. Meyer, C.A. Peck, & L. Brown (Eds.), Critical issues in the lives of people with severe disabilities (pp. 171-193). Baltimore: Paul H. Brookes.

Dattilo, J., & Jekubovich-Fenton, N. (1995). Leisure services trends for people with mental retardation.  Parks & recreation, 30(2), 46-52.

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Modell, S. J., & Valdez, L. A. (2002). Beyond bowling: Transition planning for students with disabilities. Teaching Exceptional Children, 34(6), 46-53.

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