Keeping Current #96-2

What adolescents with disabilities want in life: Implications for service delivery

Gillian King, Thames Valley Children's Centre, London, Ontario, and Neurodevelopmental Clinical Research Unit (NCRU)*, McMaster University
Tamzin Cathers, Thames Valley Children's Centre, London, Ontario

^{©1996 King, G., & Cathers, T.; Published and distributed by the Neurodevelopmental Clinical Research Unit (NCRU)
*As of Oct. 1, 1998, the NCRU is called CanChild Centre for Childhood Disability Research}

Please note that this Keeping Current focuses on adolescents with average cognitive ability. Individuals with developmental delays may face quite different issues.

Quality of life, success in life, and happiness

Contrary to popular opinion, adolescence is not a time of turmoil and strife for most individuals. When the environment meets the psychological needs of adolescents, who are asserting their independence in all ways (physically, socially, cognitively, and emotionally), adolescence can be a relatively "smooth" period of transition between childhood and adulthood (Eccles et al., 1993). During late adolescence, most young people with average cognitive ability start careers or begin higher education, move away from home, develop their personal relationships, and consolidate their identities (Hallum, 1995). These developments ultimately affect their quality of life, success in life, and happiness.

This Keeping Current provides information about life today for adolescents with disabilities. It discusses how they fare in the external, interpersonal, and personal spheres of life and what they want in life. Our thorough review of the literature raises these key implications for service delivery for this group:

• A whole person orientation to services is essential.
• We can learn a great deal by listening to adolescents themselves.
• Adolescents with disabilities have the same desires and aspirations as other adolescents.
• Eliminating barriers in the physical, social, and institutional environments is essential.

Definitions

Quality of life refers to how an individual's total existence is perceived. It is often associated with success, wealth, productivity, and happiness (Lindstrom & Kohler, 1991) and with the notions of resilience, coping, and adjustment (Brooks, 1994). Quality of life reflects a holistic, broad view of health encompassing experiences in three spheres of life (Lindstrom & Kohler, 1991):

1. the external sphere (i.e., employment, education, and independent living)
2. the interpersonal sphere (i.e., marriage and relationships), and
3. the personal sphere (i.e., self-esteem and self-concept)

Success in life is traditionally defined as the completion of a series of transitions in life (Clark & Hirst, 1989) and as the attainment of certain socially-expected life outcomes. For older adolescents, successful community adjustment involves finding employment, living independently, and having adequate social and interpersonal networks (Halpern, 1985). Success in life also has a subjective component and means different things to people (Miller Polgar, King, MacKinnon, Cathers, & Havens, 1996).

Happiness is a state of well-being and contentment. It is an important outcome in the eyes of clients-themselves and for evaluating the effectiveness of rehabilitation services (Fuhrer, 1994; Miller Polgar et al., 1996).

What faces adolescents with disabilities now and in the future?

External and interpersonal spheres
Little is written about life outcomes for adolescents with disabilities. Studies of adults with disabilities tell us about what adolescents may face in the future. The research shows that adults with disabilities experience less success than able-bodied individuals in the external and interpersonal spheres. Compared with Canadian adults without disabilities, those with disabilities are less involved in personal relationships (more likely to be divorced, separated, or widowed), and are not as satisfied with their jobs, economic situations, relationships, and life overall (Hammoud & Grindstaff, 1992). Adults with disabilities are less likely to have social networks and friends, participate in recreational activities or date, attend college, hold a full-time job, live independently, and marry (Fuhrer, 1994; Ireys, Werthamer-Larsson, Kolodner, & Gross, 1994; Kokkonen, Saukkonen, Timonen, Serlo, & Kinnunen, 1991; Parmenter & Knox, 1991). These studies indicate that only 30 to 50 percent of adults with physical disabilities are engaged in paid employment and no more than 40 to 45 percent live apart from their parents. Thus, adults with physical disabilities face both social and economic disadvantage (Doyle, Moffatt, & Corlett, 1994; Hallum, 1995).

Personal sphere
On the personal level, research clearly shows that adolescents who have disabilities are at risk for social isolation (Hallum, 1995). Their leisure pursuits tend to be passive and solitary (Pollock & Stewart, 1990). In a number of studies, females with physical disabilities have rated themselves as particularly low in social acceptance (Resnick & Hutton, 1987; King, Shultz, Steel, Gilpin, & Cathers, 1993), which may lead to social isolation and feelings of loneliness. However, they have adequate self-esteem, contrary to popular opinion (Arnold & Chapman, 1992; Hallum, 1995). The reasons for this are many: (1) there are positive aspects to having a disability; (2) having a disability is only one aspect of a person's self; and (3) people use various psychological mechanisms (such as social comparison with others who are less well off) to maintain positive self-esteem (Arnold & Chapman, 1992; Specht, King, & Cook, 1996).

What do adolescents themselves tell us?

The literature provides very little information about adolescents' personal reflections, opinions, and perceptions of what constitutes and contributes to success in life. It is a risk to assume that service providers (or even parents) know what adolescents with disabilities want. For instance, McGavin (1996) reported that adolescents and their parents had very different issues concerning what they wanted from rehabilitation. Unintended negative consequences may arise if we assume that individuals with disabilities have needs that are different from those of other adolescents. Such assumptions may lead to low expectations, which then affect how young people view themselves.

Few studies have asked adolescents what they want in life. In a recent, comprehensive review article of issues in the transition to adulthood, Hallum (1995) cites studies indicating that adolescents feel they are often treated as socially inferior and vocationally undesirable. McGavin (1996) found that adolescents were concerned about having only a few friends. Although the barriers they face may elicit unique concerns for these adolescents, the few studies done in this area suggest that they want the same things in the future that all teenagers generally look forward to: jobs, marriage, and families (Arnold & Chapman, 1992; Blum, Resnick, Nelson, & St. Germaine, 1991).

In a recent exploratory qualitative study, 11 adolescents with non-progressive physical disabilities were asked how they define success in life and what they identify as precursors for present and future success (Millar Polgar et al., 1996). The themes brought up by these adolescents touched on each of the external, interpersonal, and personal psychological dimensions, indicating that these adolescents took a holistic view of their lives. For them, success meant "being happy" (and happiness meant getting and doing what one wants in life). They said that being successful meant having a job, getting an education, and living on one's own. However, they indicated that it was most important to do what one wants in life and to be happy.

The adolescents in this study also indicated that being believed in was a key factor in being successful. They felt that others' expectations of them were too low and limited their opportunities. The literature consistently shows that support, guidance, and encouragement from significant others are critical to success in life (Spekman, Goldberg, & Herman, 1993). The adolescents also indicated that being accepted by others is important. Like all adolescents, those with disabilities want to be accepted and be part of the group. One of the most pervasive barriers faced by individuals with disabilities is others' negative attitudes (Doyle et al., 1994; Law, 1993). Prejudice affects all aspects of their lives, from forming friendships to being hired for a job. Being believed in and being accepted by others give them the strength needed to cope with adversities in life (Brooks, 1994).

Where do we go from here?

Most adolescents with disabilities want what all adolescents generally want in life--happiness, meaningful occupation, fulfilling relationships, independence, being believed in, and being accepted by others. However, they will have difficulty in attaining these goals due to prejudice, lack of skills, and our current weak economic climate.

This review raises a number of implications for service providers:

• Take a whole person orientation to services.
  Adolescents want to accomplish things in life (such as completing an education and getting a job). They also want happiness, to belong, and to be believed in by others. Services therefore need to be holistic and to address educational, vocational, recreational, and psychosocial goals. Specific services needed include: recreation and leisure services, advice on independent living, prevocational training, vocational and career counselling, coaching in decision-making and problem-solving, social support and mentoring services, and parent education (Brooks, 1994; Spekman et al., 1993). Moreover, it is best if adolescents' goals in different spheres of life are addressed in an integrated manner, focusing on life as a whole rather than addressing each type of goal separately. For example, employment could be considered in conjunction with independent living and building leisure and social networks for adolescents with disabilities (Pollock & Stewart, 1990). Such a broad-based, life-centred approach may be most effective in meeting adolescents' needs and goals in life.
• Listen to adolescents themselves.
  We need to work in partnership with adolescents and listen to their concerns and needs. Thus, as well as providing specific types of services, we need to ensure that services are provided in a style that is family- or client-centred. Two of the key principles of family-centred service are that clients should: (1) lead the decision-making process concerning the type and amount of support and services they receive, and (2) be treated with respect (Rosenbaum, King, Law, King, & Evans, 1996). We need to continue to work on humanizing service delivery by being continually aware of the aspirations and needs of those receiving the services.
• Remember that adolescents with disabilities are adolescents first.
  Like everyone, adolescents want to be happy. It is a myth that adolescents with disabilities (as a group) have different desires in life. For instance, Arnold and Chapman (1992) reported no differences in the expectations and aspirations of adolescents with and without disabilities. Adolescents with disabilities may not attain all their goals in life, but it is important for them to try, and for them to understand the obstacles they face. Service providers can help to provide this knowledge and guidance.
• Eliminate barriers.
  Rather than trying to "fix" adolescents so that they can meet the expectations of society, we should focus on eliminating barriers in the physical, social, and institutional environments. This involves activities such as educating others and working to change attitudes so that individuals with disabilities are believed in and are accepted by others, as well as advocating for physical accessibility and progressive employment criteria and practices. Partnerships need to be fostered between rehabilitation professionals and community groups (such as attendant care, supportive volunteer groups, transportation services) to address these issues. Thus, we should accommodate their abilities and needs by working to change disabling environments (Law, 1993). Disabilities are only limiting to the extent that constraints are imposed in the physical and social environments (Schlaff, 1993). We need to apply this philosophy to all the rehabilitation services we provide.

References

Arnold, P., & Chapman, M. (1992). Self-esteem, aspirations and expectations of adolescents with physical disability. Developmental Medicine and Child Neurology, 34, 97-102.

Blum, R. W., Resnick, M. D., Nelson, R., & St. Germaine, A. (1991). Family and peer issues among adolescents with spina bifida and cerebral palsy. Pediatrics, 88, 280-285.

Brooks, R. B. (1994). Children at risk: Fostering resilience and hope. American Journal of Orthopsychiatry, 64, 545-553.

Clark, A., & Hirst, M. (1989). Disability in adulthood: Ten year follow-up of young people with disabilities. Disability, Handicap & Society, 4, 271-283.

Doyle, Y., Moffat, P., & Corlett, S. (1994). Coping with disabilities: The perspective of young adults from different ethnic backgrounds in inner London. Social Science and Medicine, 38, 1491-1498.

Eccles, J. S., Midgley, C., Wigfield, A., Buchanan, C. M., Reuman, D., Flanagan, C., & MacIver, D. (1993). Development during adolescence: The impact of stage-environment fit on young adolescents = experiences in schools and in families. American Psychologist, 48, 90-101.

Fuhrer, M. J. (1994). Subjective well-being: Implications for medical rehabilitation outcomes and models of disablement. American Journal of Physical Medicine and Rehabilitation, 73, 358-364.

Hallum, A. (1995). Disability and the transition to adulthood: Issues for the disabled child, the family, and the pediatrician. Current Problems in Pediatrics, January, 12-50.

Halpern, A. S. (1985). Transition: A look at the foundations. Exceptional Children, 51, 479-586.

Hammoud, A. M., & Grindstaff, C. G. (1992). Socio-demographic characteristics of the physically disabled in Canada. Canadian Journal of Public Health, January-February, 57-60.

Ireys, H. T., Werthamer-Larsson, L. A., Kolodner, K. B., & Gross, S. S. (1994). Mental health of young adults with chronic illness: The mediating effect of perceived impact. Journal of Pediatric Psychology, 19, 205-222.

King, G. A., Shultz, I. Z., Steel, K., Gilpin, M., & Cathers, T. (1993). Self-evaluation and self-concept of adolescents with physical disabilities. American Journal of Occupational Therapy, 47, 132-140.

Kokkonen, J., Saukkonen, A. L., Timonen, E., Serlo, W., & Kinnunen, P. (1991). Social outcome of handicapped children as adults. Developmental Medicine and Child Neurology, 33, 1095-1100.

Law, M. (1993). Changing disabling environments for children with physical disabilities: A research study completed with Participating Families - Cambridge. University of Waterloo: Working Paper Series No. 31.

Lindström, B., & Köhler, L. (1991). Youth, disability and quality of life. Pediatrician, 18, 121-128.

McGavin, H. (1996). Planning rehabilitation: Issues for parents and adolescents (Project Report - May 1996). Hamilton, ON: McMaster University and Chedoke-McMaster Hospitals, Neurodevelopmental Clinical Research Unit.

Miller Polgar, J., King, G., MacKinnon, E., Cathers, T., & Havens, L. (1996). How adolescents with physical disabilities view success in life. Manuscript in preparation.

Parmenter, T. R., & Knox, M. (1991). The post-school experiences of young people with a disability. International Journal of Rehabilitation Research, 14, 281-291.

Pollock, N. & Stewart, D. (1990). A survey of activity patterns and vocational readiness of young adults with physical disabilities. Canadian Journal of Rehabilitation, 4, 17-26.

Resnick, M. D., & Hutton, L. (1987). Resiliency among physically disabled adolescents. Pediatric Annals, 17, 796-800.

Rosenbaum, P., King, S., Law, M., King, G., & Evans, J. (1996). Family-centred service: A conceptual framework and research review. Manuscript in preparation.

Schlaff, C. (1993). From dependency to self-advocacy: Redefining disability. The American Journal of Occupational Therapy, 47, 943-948.

Specht, J., King, G., & Cook, P. (1996). Strategies for maintaining self-esteem in adolescents with physical disabilities. Manuscript in preparation.

Spekman, N. J., Goldberg, R. J., & Herman, K. L. (1993). An exploration of risk and resilience in the lives of individuals with learning disabilities. Learning Disabilities: Research & Practice, 8, 11-18.