Quality of life of 76 school-age children with identified disabilities receiving special education services in public schools was compared to quality of life of 64 students without disabilities enrolled in Grades K-12. The Quality of Student Life Questionnaire (QSLQ) was used. Results indicated that the scores of students with disabilities were lower on all scales. The differences were significant in three of the four quality of life factors of the QSLQ scales: Satisfaction, p < .001, Well-Being, p < .01, Social-Belonging, p < .001, and total QSLQ scores, p < .001. Findings suggest that we have not yet achieved parity in quality of life for children with disabilities. The concept of quality of life is discussed in the context of needs for future intervention.
Editor in charge: Steven J. Taylor
Quality of life has been considered an important aspect in planning, delivering, and evaluating services for people with disabilities (Dennis, Williams, Giangreco, & Cloninger, 1993; Schalock, Keith, Hoffman, & Karan, 1989). Legislation, policies, movements, and programs have been initiated with the intention of enhancing the lives, personal satisfaction, personal success, community membership, and participation of people with disabilities. The quality of life theme is reflected in procedural protections of the Individuals With Disabilities Act (IDEA) in the requirement that children be served in the least restrictive environment and that they be provided with necessary related services and with Individualized Education and Transition Plans (IEPs and ITPs). This theme has emerged in the principle of normalization (Nirje, 1976; Perske, 1972; Wolfensberger, 1977) as well as in the Regular Education Initiative—REI (Will, 1986) and the inclusion movement (Lipsky & Gartner, 1987, 1992; Stainback, Stainback, & Jackson, 1992).
Quality of life—success and satisfaction with one's experience—is a common human goal. The term quality of life is used to describe contentment and happiness with one's social, emotional, physical, professional, and financial aspects of life (Coulter, 1990; Stark & Goldsbury, 1990). It can be measured by satisfaction with one's overall life experiences: the sense of belonging to the community and feelings of competence, productivity, empowerment, and independence (Schalock & Keith, 1993; Stark & Goldsbury, 1990). The quality of life of a person is also closely related to the quality of life of others who are part of that person's environment (Goode, 1990). Although there are many ways to define quality of life, and Schalock (1996) has suggested that we might be better off without a single definition, there seems to be a consensus on core quality of life dimensions: emotional well-being, interpersonal relations, material well-being, physical well-being, social inclusion, self-determination, and human rights (Hatton, 1998; Schalock, 1996).
Quality of life of people with disabilities has the same components as the quality of life of people without disabilities (Keith, 2001) and can be experienced by a student with disability when he or she is provided with the same opportunities as others to make choices and accomplish personal goals (e.g., friendships) in the major life settings of home, community, school, and work (Schalock, 1997; Snell & Vogtle, 1997; Wehmeyer, 1996). Various authors have stressed the significance of connecting the quality of life of individuals with disabilities to that of people without disabilities (e.g., Goode, 1997; Goode & Hogg, 1994; Keith, 1990; Kozleski & Sands, 1992; Schalock & Keith, 1993). Quality of life for students with disabilities can be translated as the level of satisfaction student have with their own life in those four major settings. For school-age children, this satisfaction is usually related to social relationships, ability to participate in a variety of activities in the school and community, and the freedom to make choices (Janney & Snell, 2000; Snell & Vogtle, 1997). Quality of life for school-age students encompasses a feeling of happiness, well-being, social belonging, and empowerment/control.
Quality of life is, without doubt, a significant outcome of services, including education, delivered to people with disabilities (Schalock, 2001), and it is, therefore, important that planning and delivery of services be responsive to individual students' goals, strengths, and needs (Blackorby & Wagner, 1996). Those involved in the child's education must be trained to assess his or her unique experiences, strengths, and needs and to consider long-term quality of life issues to better plan, deliver, and evaluate quality services (Shapiro & Lentz, 1991).
It is evident that quality of life is a major goal of services delivered to people with disabilities; however, little is known about the quality of life of school-age children with disabilities as measured by quality of life scales. Investigators studying quality of life of individuals with disabilities have focused primarily on adults. As a consequence, practitioners in the special education field have often not been trained to use the context of quality of life issues to make decisions about programming services for school-age children with disabilities. However, with the paradigm shift to equity, inclusive education, and the transition services requirements by IDEA, the current literature on “best practices,” especially in the fields of mental retardation and severe disabilities, shows an increased effort in program planning based on the concept of quality of life. For example, (a) leisure education programs for youth with mental retardation have been implemented and studied by Dattilo and Hope (1999); (b) the Choosing Options and Accommodations for Children (COACH) system developed by Giangreco, Cloninger, and Iverson (1993) identifies “valued life outcomes” and includes family members, professionals, and students with disabilities to assess and plan a student's IEP; (c) the positive behavioral support approach suggested by Janney and Snell (2000) is a team approach that not only targets increasing a student's social behavior and social–communication skills, but the student's overall quality of life, including relationships, health, and autonomy; (d) the American Journal of Mental Retardation (Crocker, 2000) dedicated an entire issue to happiness, a critical quality of life dimension; and (e) scholars have explicitly stated in recent textbooks the need to include “quality enhancers” in students' IEPs (Snell & Brown, 2000; Westling & Fox, 2000).
Despite the current interest in enhancing the quality of life of students with disabilities by promoting quality of life dimensions in their educational program, relatively few educators are actually including those skills (e.g., self-determination) in students' IEPs (Agran, Snow, & Swaner, 1999). Unfortunately, many educators often develop IEPs to comply with the requirements of IDEA, without addressing the individualized needs of each student (Espin, Deno, & Albayrak-Kaymak, 1998; S. Smith, 1990). Research is needed to (a) determine the effects of services provided to school-age children with disabilities on the quality of their life and (b) seek ways to train preservice and inservice teachers to acquire and develop the skills necessary to better plan, provide, and evaluate quality services for children with disabilities. Our aims in this study were to (a) investigate the quality of life of a group of school-age children with disabilities receiving special education services in public schools, (b) examine the relationship between quality of life and type of disability, and (c) describe differences in quality of life between students with disabilities and a control group.
Participants were 76 students with identified disabilities and 64 students without identified disabilities (67 males, 73 females) enrolled in Grades K through 12 in 25 different schools within two Nebraska public school districts. These school districts provide well-rounded continua of services to students with disabilities. The mean age of students in both groups was 11.1 years (range = 5 to 19 for those with and 6 to 19 for those without disabilities). The distribution of ages and school grade levels appears in Table 1. The participants were students served by preservice teachers receiving practicum and student-teaching experiences supervised by the researchers. Each preservice teacher was asked to select at least 2 students with disabilities who could be interviewed and whose parents were willing to give consent for an interview. Types of disabilities were considered in the selection of participants to provide a balanced representation of special education students, and students with disabilities in this study received services in a variety of placements: inclusive settings, pull-out programs, combinations of pull-out and in-class, and in a special program for students with severe behavioral/emotional problems. A convenience sample of age-matched students without disabilities from the same schools was selected and interviewed in the same way as the control group.
We used the structured Quality of Student Life Questionnaire—QSLQ (Keith & Schalock, 1995) in this investigation to facilitate comparison of results and potential replication. The QSLQ is comprised of four factors: Satisfaction, Well-Being, Social Belonging, and Empowerment/Control. Each factor contains 10 items, each scored on a 3-point Likert scale. The questionnaire is reliable, unobtrusive, and nonclinical and is appropriate for use with students with and those without disabilities. A brief description of the factors and sample items are presented in Table 2. The QSLQ is considered appropriate for assessment of educational needs and for program outcome assessment; was normed on K through 12 and college-age samples; and includes discussion of construct, content, and face validity (Keith & Schalock, 1995). Test–retest coefficients for the QSLQ range from .72 to .92 for school-age students on individual scale and total scores, with Cronbach alpha coefficients from .76 to .91 for the four scales (Keith & Schalock, 1995).
Data were collected from QSLQ interviews with students who had identified disabilities and those who did not. After informed consent was obtained from each student's parent or guardian, interviews were conducted by preservice teachers with whom the students were familiar. Preservice teachers followed the QSLQ manual procedural guidelines, and they received instructions from one of the QSLQ authors prior to interviewing the students. They interviewed only students with whom they were working during that semester. Each interview required approximately 15 to 20 minutes, and interviews were conducted during instructional time only if the interviewing process assisted students in practicing pragmatic communication and social skills; otherwise, students were interviewed during noninstructional time.
We compared measured quality of life of identified students with disabilities receiving special education services and students without disabilities, using a t test for independent samples, for each of the QSLQ scales. A summary of the data appears in Table 3. The scores of the special education students were lower on all scales. The differences were significant for Satisfaction, t(136) = 3.72, p < .001, Well-Being, t(140) = 2.95, p < .01; Social-Belonging, t(139) = 4.02, p < .001; and for total QSLQ scores, t(139) = 4.19, p < .001. The difference found for Empowerment/Control scores was not statistically significant.
A one-way analysis of variance was calculated to assess differences among total QSLQ scores of four subgroups of the special education sample (learning disability, behavioral disorder, mild–moderate mental retardation, and other health impairments). The mean scores were 87.05 for the learning disability group, 84.31 for the behavioral disorder group, 88.27 for the group of students with mental retardation, and 82.75 for the other health impairment group. No significant differences were found among these groups. Analysis of total QSLQ scores of these students also showed no significant differences between male and female students.
Finally, in order to evaluate the possibility that QSLQ scores might be correlated with age, we calculated Pearson product-moment correlation coefficients for age and total QSQL scores for both the special education and the general education students. Both groups showed statistically significant, but very modest, positive relationships between age and QSLQ scores: special education group, r(74) = .38, p < .01, and general education group, r(62) = .30, p < .05.
Quality of life is linked to a person's social inclusion, the feeling of belonging, independence, well-being, self-determination, satisfaction with life, and rights (Felce & Perry, 1996; Schalock, 1996; Snell & Vogtel, 1997). People with disabilities often encounter barriers in their lives that impact their quality of life and produce unpleasant experiences and negative perceptions. These subjective experiences will be reflected in an individual's satisfaction with quality of life (Taylor & Bogdan, 1996). Students with disabilities in this study scored significantly lower in three of the four factors used to evaluate quality of life than did the students without disabilities. The three factors—Satisfaction, Well-Being, and Social Belonging—are significant to the lives of people with disabilities and to outcomes of program planning.
Previous studies of the quality of life of adults with mental retardation (Keith, 1986; Keith, Schalock, & Hoffman, 1986; Kixmiller, Keith, & Schalock, 1991; Otrȩbski, 2000; Sands & Kozleski, 1994) have produced results similar to those of the present study. Although investigators studying adults (e.g., Keith et al., 1986; Schalock et al., 1990; Schalock & Keith, 1993) have suggested that measured quality of life is inversely related to level of need, data required to complete such analyses were not available for this study. We did not, however, find significant differences in quality of life among disability groups. Further research with larger and more broadly representative samples, including other states and school districts, is necessary to explore possible differences among levels and types of disabilities; and, although the QSLQ is a useful research tool, its practical relevance to educational planning has not been demonstrated.
Quality of life is significantly influenced by social and emotional relationships with people from our daily context—for example, school, work, or home (Stark & Faulkner, 1996). Unfortunately, many students with disabilities have experienced repeated failures (Hickson, Blackman, & Reis, 1995), have a negative attitude toward school-related activities (Smith, 2001), and may not see the relationship between their own efforts and social and academic success (Friend & Bursuck, 1999). These difficulties affect how students relate to family members, teachers, and peers. Consequently, these variables need to be addressed in the students' educational programs.
Students with disabilities in the present study received special education services in a variety of placements, yet lower scores on three of the four quality of life factors (Satisfaction, Well-Being, and Social Belonging) persisted. No statistically significant difference was found for the fourth factor, Empowerment/Control—a dimension found previously to be associated with age in adolescence (Keith & Schalock, 1995). Students with disabilities were, however, less satisfied with their current life and school-related activities (Satisfaction), had less positive feelings about their life and relationships (Well-Being), and felt less included than did their peers without disabilities (Social Belonging). These results suggest the magnitude of the challenge presented to educators and inclusive thinkers. These data support earlier studies in which investigators reported students with disabilities experiencing more loneliness, depression, dissatisfaction with their social lives, and lower peer acceptance rates than did students in matched control groups (Heiman & Margalit, 1998; Vaughn, Elbaum, & Schumm, 1996; Williams & Asher, 1992). Remedies will be neither immediate nor simple. Quality of life issues for this population are insidious, prevalent, and persistent.
Although administrators of existing programs competently aim to meet individual academic needs of students, they may not address the comprehensive structure of student needs as they relate to outcomes linked to quality of life. Perhaps they cannot. Quality of life is not a synonym for quality of services; however, quality of life factors can provide a basis for programming and evaluating services and should direct the development of educational plans and delivery of services (Dennis et al., 1993). Service providers will need to consider how to create support and assistance for students with disabilities to enable them to achieve these indicators of quality of life. Thus, the quality of life of students with disabilities is directly related to the quality of their educational plans.
In the paragraphs that follow, based on the results of our study and on the current literature on best practices, we suggest effective ways to address, through teacher training, the four components of quality of life measured in this study: Satisfaction (personal opinions reflecting satisfaction with current circumstances, emphasizing school and school-related activities); Well-Being (general view of the person's feelings regarding his or her life circumstances, including personal problems and family); Social Belonging (participation in activities, social contacts, and relations); and Empowerment/Control (opportunity to exert control over one's life and to make choices).
If planning is significantly related to students' quality of life outcomes, teachers need to be specifically trained to use “person-centered/family-centered plans” that can improve students' legally required plans, IEPs, and to focus on quality life outcomes. There are several planning programs available that are based on person-centered/family-centered planning. Some examples of these planning strategies are Making Action Plans, Group Action Planning, Essential Lifestyle Planning, and Personal Futures Planning. One recommended program is Choosing Options and Accommodations for Children (COACH) (Giangreco et al., 1993), a well-designed and structured approach to assessing students' needs and to planning a comprehensive educational program. This program is based on six critical premises: (a) Valued life outcomes should be the goal of a student's education; (b) the family must be involved in the pertinent and longitudinal planning; (c) collaboration among family members and professionals is essential to quality education; (d) planning should be coordinated and shared among all disciplines; (e) problem-solving methods must be used to create effective plans; and (f) special education is a service, not a place. The components of the COACH educational program include family-centered priorities that are translated into IEP goals; the Breadth of the Curriculum, which includes general education, cross-environmental, and environment-specific objectives; and the General Supports the student will need for access to general education.
Working in collaborative teams toward a common goal, educators, family members, the student with disabilities, and other professionals (e.g., paraprofessionals and speech and language pathologists) can develop, implement, and monitor appropriate programs (Snell & Janney, 2000). Collaborative skills must be part of preservice and inservice training of all those involved in the education of students with disabilities if our goal is to provide educational programs that address quality of life outcomes.
Collaborative teams can aim to address the four quality of life components measured in this study by fostering social skills, communication skills, self-determination skills, and by promoting memberships. Teacher-training curricula must include those skills. Snell and Vogtle (1997) stressed the importance of facilitating children's social relationships in school. They recommended that social skills be taught through direct instruction and in context and include students with and those without disabilities, thereby promoting horizontal relationships. The target social skills should focus on prosocial skills (getting along with others) and self-management skills (self-management of emotions and behavior) (Janney & Snell, 2000). Schnorr (1997) suggested that if educators want to foster those horizontal relationships, they must facilitate interactions by sensitively assisting the student in communicating with peers, by considering the student's physical location in the classroom, and by encouraging the student's participation, among other things. Snell and Vogtle also brought to our attention the notion that children must learn how to deal with rejection, suggesting that schools may only affect school-centered relationships and, for more complete success, students may need to interact more effectively with other social services, parents, and extended families. A collaborative problem-solving approach that stresses prevention of problem behaviors and aims to teach students alternative behaviors will support and provide for better quality of life outcomes.
Behavioral problems usually interfere with relationships and affect how one feels about oneself. Teacher-training programs need to prepare teachers to use positive behavioral approaches that focus on quality of life outcomes. One example of such an approach is the Positive Behavioral Supports program (Janney & Snell, 2000), in which the aim is not only to decrease or eliminate inappropriate behaviors, but to help students develop new skills, form more positive relationships with peers and adults, and be more actively involved in their classrooms, schools, and communities.
Self-determination is another skill that needs to be included in a student's educational plan. Self-determination skills include decision-making skills that lead to empowerment/control, satisfaction, and happiness with one's life. Students with disabilities must be taught to communicate their needs and wants appropriately. They must be provided with options in order to learn to make responsible choices. Decision-making skills are critical to successful social inclusion, interpersonal relationships, employability, and self-determination (Khemka, 2000; Martella, Marchand-Martella, & Agran, 1993).
In conclusion, the findings of this study suggest that we have not yet achieved parity in quality of life for children with disabilities, and continued research on school-age children's quality of life issues is needed if educators are to use these themes to plan and evaluate student programs and to enhance eventual positive outcomes for adults with disabilities. The need to design and implement educational plans that address these quality of life outcomes—satisfaction, well-being, social belonging, and empowerment/control—is evident.
Authors:Silvana M. R. Watson, PhD, Assistant Professor, Special Education, Child Study Center, Old Dominion University, Norfolk, VA 23529 (firstname.lastname@example.org). Kenneth D. Keith, PhD, Professor and Chair, Department of Psychology, University of San Diego, 5998 Alcala Park, San Diego, CA 92110 (kkeith@ acusd.edu)