Managing service delivery systems and the role of parents during their children's transitions

Journal of Rehabilitation, April-June, 2004 by Jaimie Ciulla Timmons, Jean Whitney-Thomas, James P. McIntyre, Jr., John Butterworth, Deborah Allen

Adolescence is a time of rapid change for young people and their families. It is a time of physical maturation, psychological growth, and the development of life plans. Teenagers must cope with a variety of adaptive tasks during this transition including the emergence of increasing self-direction and independence from family, the creation of an expanded self-concept, the development of social and romantic relationships, the definition of an occupational identity and the pursuit of vocational interests (Germain, 1991). This role change from adolescent to adult often includes graduation from school, employment, greater responsibility, and becoming more economically and socially independent.

Adolescents with disabilities face the same multitude of changes, yet encounter additional challenges making this transitional period more troublesome. Recent studies have shown that outcomes for young adults with disabilities fall significantly short of their non-disabled peers. These outcomes include higher drop out rates (U.S. Department of Commerce, Bureau of the Census, 1995), low attendance rates in post secondary schools (Horn & Berktold, 1999) and high unemployment (Louis Harris & Associates, 1998). In addition, youth with disabilities may rely more on family members rather than peers for social interaction (Dane, 1993). Limitations in social activities may ultimately affect self-esteem and self-concept in a negative way and thus create social isolation (McGraw-Schuchman, 1994). Finally, research indicates that individuals with disabilities also demonstrate low levels of self-determination (Wehmeyer, Agran, & Hughes, 1998).

This enormous period of change has an impact not only on the young adult with a disability, but also on their families. This particular research chose to focus on the role of family members, specifically parents, during their young adults' transitions. Since the 1980s, research has helped rehabilitation professionals to understand the nature of the transition process for youth with disabilities and their families. The often-cited research by Ferguson, Ferguson, and Jones (1988) identified three simultaneous transition processes that families experience as their children with disabilities planned to leave high school. These included (a) the bureaucratic transition defined as the change from the special education system to the adult community service system; (b) the family life transition defined as the disruption of established routines needed to accommodate the changing life of the individual; and (c) the status transition, which involves all of the cultural implications that accompany the move from child to adult (Ferguson et al., 1988).

The convergence of changes in personal status, family life, and systems relationships (Ferguson et al., 1988) makes the transition from school to adult life a time when family members explore and adopt a variety of unique roles. Through an extensive review of the literature, Hanley-Maxwell, Pogoloff, and Whitney-Thomas (1998) found that family members often take on the roles of organizational member and political advocate, service developer, the recipient of professional decisions, teacher and learner, family member and decision maker, and their child's problem source. Parents have also been found to continue in a nurturing role as they facilitate the transition from school-to-work by proactively engaging in work readiness activities, supporting education through interaction with school, and promoting good work values (Way & Rossman, 1996). Lehmann (1998) found that mothers of students with disabilities played a much more active role in the lives and transitions of their children and that they did not see their support roles as diminishing over time, compared to mothers of children without disabilities. Finally, Thorin, Yovanoff, and Irvin (1996) found that parents of young adults with disabilities wanted to create opportunities for independence while assuring safety and wanted to provide stability and predictability while remaining flexible to meet the child's ever changing needs. In addition, findings indicated that parents sought to create a separate social life for their child while needing to be involved in the facilitation of it and wanted to avoid burnout while feeling they needed to do everything for the young adult. The literature suggests, therefore, that while normative expectations for decreased family involvement exist, parents of youth with disabilities often struggle with conflicting roles. This conflict is especially true in the face of the bureaucratic transition that does not often exist for youth without disabilities (Whitney-Thomas & Hanley-Maxwell, 1996).

While many studies have solicited families' perspectives q of their roles, research appears to fall short when examining the role of parents specifically within the context of the bureaucratic transition process. Parents must manage the broad range of supports from schools including post-secondary education options and vocational training. This management may be complicated by the combination of community services that provide independent living or community participation supports. In addition, parents must begin establishing linkages with agencies and organizations that provide adult supports. The current study examined the role of parents of young adults with disabilities as they negotiate child and adult service systems and learn to manage new rules during this bureaucratic transition. The following research questions were addressed: