American Journal on Mental Retardation, 2001, Vol. 106, No. 2, 173–188
Transition to Adulthood: Mental Retardation, Families, and Culture Jan Blacher
University of California-Riverside
A conceptual model was proposed guiding a study of mental retardation and family well-being during the transition from late adolescence into young adulthood. The developmental period from about age 18 to 26 is critical, in that formal schooling ends and changes in residential, vocational, and social status are likely. Furthermore, the proposal was made that the success of transitional experiences in these three realms will influence family wellbeing, an outcome of primary interest at this stage of the lifecycle of the family. Individual characteristics, environment and culture, and family involvement with programs are hypothesized to influence family well-being, but primarily through their impact on transition success.
My purpose in this paper is to propose a
conceptual model for investigating the transition to adulthood in young adults with mental retardation. Although there have been many previous studies of transition, this model considers transition from a family perspective, with family well-being as the primary outcome of interest. Early studies of families and mental retardation concentrated on the childhood years, as if the emotional consequences of the diagnosis and initial coping efforts tell the whole story. This may have related somewhat to service practices, where the diagnosis often led to lifelong institutional placement and detachment from the family. Today, people with mental retardation are living longer, often into old age; the service delivery system has provisions across the lifespan, and families often stay involved (Blacher, Baker, & Feinfield, 1999). Family researchers now embrace a lifespan perspective (Gore, Aseltine, Colten, & Lin, 1997; M. Seltzer & Ryff, 1994). Most research findings, however, are de-
rived from two ends of this continuum— childhood and old age. There is a wide gap in the middle. I propose that researchers ‘‘fill the gap’’ in the literature by examining the critical transition period for persons with mental retardation and their families from late adolescence to young adulthood. This period, designated here as ages 18 through 26, is of particular developmental significance because it encompasses the launching phase into young adulthood (Corbett & Barton, 1992; Marshak, Seligman, & Prezant, 1999; McCullough & Rutenberg, 1989). Surprisingly, this transitional period has not received systematic study that incorporates both individual and family perspectives. The transition to adulthood is a time of heightened opportunities but also of new risks. These challenges relate to the individual, the family, and the social service system. For example, the individual with mental retardation may seek in-
�American Association on Mental Retardation
creased independence. Indeed, vocational and adaptive programs for high school students with severe disabilities often reflect goals of autonomy and self-determination (Wehmeyer, 1996). Yet, this is also a time when the young adult is at heightened risk for behavioral and psychiatric disturbances. In the normative case the family system changes as well, as other children, without mental retardation, go off to college or jobs and usually move out of the family home (Bramston & Cummins, 1998). Perhaps most critical during this period is that public school funding ceases, and the quest for appropriate programs begins anew. Thus, this period is marked by growth and change but also by increased uncertainties and challenges, and it is important to better understand the experience of persons and families going through this transitional period. Sherrod, Haggerty, and Featherman (1993) noted that the rate of change during adolescence may create ‘‘special vulnerabilities and opportunities for intervention’’ (p. 218). Empirical study of family experiences, problems, and needs should ‘‘fill the gap’’ in the transition to adulthood theoretically and lead to more responsive services.
Conceptual Model The overarching emphasis here is on the impact of transitions on the family. There are, of course, multiple influences on family well-being. This is evident in the cautious note expressed by Ferguson, Ferguson, and Jones (1988), who studied parents’ perspectives on the transition process: ‘‘Successful program outcomes did not guarantee successful outcomes for family life’’ (p. 183). Family research in mental retardation has typically embraced Hill’s (1949) ABCX model, or some variant thereof (Bristol, 1987; McCubbin & Patterson, 1982; Orr, Cameron, Dobson, & Day, 1993). In these models, family outcome (X)—usually a measure of stress—is influenced by characteristics of the child 174 AJMR, Volume 106, No. 2
as stressor (A), the family’s resources (B), and the ways in which family members view and cope with the stressor (C). These models have been fruitful in helping researchers to conceptualize and organize variables, although there have been some issues that have made comparisons across studies difficult. Here, four issues are noted: (a) Some family variables, such as marital adjustment, are included as the outcome variable of interest in some studies and as a resource variable in other studies. (b) Analyses often have been limited to main effects, without considering the mediating or moderating role that some variables play. (c) Although these models imply a process that unfolds over time, most applications have not involved longitudinal analyses. (d) Using these models, researchers do not often pay sufficient attention to the availability and adequacy of helping services. I have included transition success as another domain that may be especially influential in accounting for X (family well-being) during the developmental period under study. The conceptual model proposed here for understanding family well-being during the transitional years is shown in Figure 1. The primary outcome domain is family well-being, which parallels the ‘‘X’’ in the ABCX model (Hill, 1949). Well-being will be an aggregate of positive and negative indicators of individual, dyadic, and family adjustment. The secondary outcome domain is transition success. I hypothesize that during this period, a major influence on family wellbeing is the extent to which transition outcomes are viewed by individuals served and their family members as positive and successful. It is important, then, to identify factors that influence transition success, as well as factors that, beyond transition success, influence family well-being. Consistent with most models, this one embraces the hypothesis that individual characteristics of the child with mental retardation affect both transition success and family well-being, although the characteristics considered to include
Figure 1. Conceptual model of the transition to adulthood: Mental retardation, families, and culture.
the critical one of psychiatric status has been broadened; individual characteristics would embrace the ‘‘A’’ or ‘‘child as stressor’’ concept in Hill’s (1949) model. Also, consistent with most models, the hypothesis was made that family resources (‘‘B’’ in earlier models) are important predictors of transition success and family well-being, although the conceptualization of these has been broadened to include other considerations of environment and culture. Also recognized is the importance of family coping strategies (‘‘C’’ in earlier models), but given my concern with transition success, I focus on one such type of coping: family involvement with, or detachment from, the child with mental retardation and his or her services (Blacher & Baker, 1994a; Blacher et al., 1999; Bruns, 2000).
Issues of Model Specification Although the model proposed is merely conceptual, and intended to
guide investigators as they venture onto this fairly new terrain, methodological specificity could be added in a number of ways. For example, the unit of analysis presented here is the individual family. This does raise some issues as to the mix of embedded-individual versus family-systemic approaches to the measurement of constructs. Although dimensions such as depression or health are usually reported by individuals (in this case, mother and father, and potentially siblings), one could ultimately construct a composite ‘‘caregiving burden’’ or ‘‘positive impact’’ aggregate score. Another approach might be to measure variance or differences across family members, providing an indicator of family consensus on such constructs as impact, satisfaction, or even depression. The model depicts several simultaneous transition processes operating over time. These transitions may occur in different orders and at different times over the life stage; thus, a panel observational design is probably most approTransition to Adulthood
priate for research on this topic. Panel observation allows for change in the independent variables to be observed both as a result of maturation, and as a consequence of earlier outcomes. Although the figure itself is clearly a simplification of these suggested processes, it does point to effects that are both direct and indirect (i.e., partially mediated by other variables). As one example, individual characteristics of the young adult (maladaptive behavior) are proposed to influence transition success, which in turn affects parents’ well-being. Similarly, one might anticipate some moderators or buffers (e.g., successful transition may have no effect on parents’ well-being if family members are completely uninvolved or ‘‘detached’’ from the young adult). Finally, the model is predominantly prospective, intended to guide us in understanding the impact of these specific domains on family well-being over time. Of course, each of the elements of the model might feed back or have some impact on earlier elements. For example, once transition events have occurred, they could become sensitive to further changes in individual factors and family involvement. I refrained from using arrows or otherwise indicating the direction of events for every variable or domain because this is mainly an heuristic model. However, I agree with Mitchell (1999), who noted that transition is ‘‘a complex, involved process, which evolves over a period of time’’ (p. 753). In the following sections, I expand upon the model, beginning with the main outcome, family well-being. Working backwards, each of the proposed influences on family well-being (individual factors, environment and culture, involvement/detachment, and transition success) is considered.
Family Well-Being A central question is: How is family well-being affected by experiences during the transition period? Despite the nu176 AJMR, Volume 106, No. 2
merous studies of adjustment and coping in families with younger children with mental retardation, and a growing body of literature on transitions, parental wellbeing during this period has received little attention. Investigators have noted that parents and families, not just the individual with mental retardation, are affected by transition and should be major partners in the transition process (Morningstar, Turnbull, & Turnbull, 1996; Szymanski, Hershenson, & Power, 1988). This model characterizes family well-being as including domains that have been typically measured: stress or negative impact (Crnic, Friedrich, & Greenberg, 1983), caregiver burden (M. Seltzer & Krauss, 1994), and depression (Blacher, Shapiro, Lopez, Diaz, & Fusco, 1997; Kobe & Hammer, 1994). These measures generally show a moderately strong interrelationship. Consideration of well-being, however, must include more than the absence of maladjustment. There is an important trend in mental retardation family research to examine not just stress but coping and not just negative impact but positive impact (Glidden & Johnson, 1999; Glidden, Valliere, & Herbert, 1988; Singer & Irvin, 1989; Turnbull et al., 1993). Perceptions of positive impact are not necessarily the reciprocal of negative impact; in some reports, the two domains are hardly related (Donenberg & Baker, 1993). Of course, transitions such as a move into the community might affect the stress and well-being of the individual with mental retardation as well, especially as he or she negotiates different aspects of transition. Although not the emphasis in this proposed model, interviewing young adults undergoing transition might be particularly useful if the individuals studied do not have severe disabilities (e.g., function in the mild range of intellectual disability) and are able to respond to measures and converse with interviewers. A good example of such an approach is a study by Bramston and Cummins (1998), who followed four individuals as they moved into the
community, three from the parental home and one from a group living situation. Although these authors had hypothesized high stress (thus, lower wellbeing) in coping with such a major transition, three out of the four individuals experienced relatively low stress levels at the time of the move and as a result of the move. A related issue is when, during the transition process, well-being is best measured: before, during, or after transition. This proposed model allows for measurement at all three points, and different findings might be anticipated for a family with an 18-year-old as opposed to a 26-year-old. Families and the transition period. Throughout adolescence, there is a sharpening contrast between the child’s increasingly adult body and continuing immature functioning across cognitive, communicative, and social domains (Rowitz, 1988). There are many implications. An adolescent with severe disabilities may lack the skills to participate in age-appropriate leisure activities, caregiving demands may increase, and respite and socialization programs may be more difficult to locate (Cheseldine & Jeffree, 1981). Parents whose coping has been ‘‘one day at a time’’ begin to feel pressure to look more to the future, to become involved in transition planning (Wehman, Hess, & Kregel, 1996). Expectations of full independence now may need to be adapted to more realistic goals (Marshak et al., 1999; Seligman & Darling, 1989). The future, when parents seriously begin to think about it, approaches with a barrage of challenges. Approximately 2 decades ago, Suelzle and Keenan (1981) examined changes in available family support networks over the life cycle of persons with mental retardation. They found that parents of older children, ages 19 to 21, were less supported, more isolated, and more in need of expanded services than parents of younger ones. This finding was consistent with earlier conclusions of Farber (1959) and Birenbaum (1971), who also recognized the increasing care-
giving difficulties faced as sons or daughters with severe mental retardation grew chronologically older. Today, however, parents of adolescents and young adults will experience the transition from school to work, or from home to community living, as normative. We would expect generational differences in family stress during this developmental period (Baker, Blacher, Kopp, & Kraemer, 1997; M. Seltzer & Ryff, 1994) as well as heightened stress during transitions (Wikler, 1986). However, Ferguson et al. (1988) postulated that parents raising their children prior to P.L. 94–142 experienced less stress during transition years—because they had fewer services overall, they came to expect less. This does not imply that these older parents experienced no stress, because as Neugarten (1976) pointed out, the absence of culturally normative transitions creates its own stress. In conceptualizing transitions, Ferguson et al. (1988) distinguished between (a) status transition, events directly involving the son or daughter with mental retardation, such as turning 21, leaving high school, getting a job, moving out of the parents’ home; (b) family life transition, changes or disruptions in the family’s established routines and responsibilities that make daily life manageable; and (c) bureaucratic transition, the shift from public school special education services to the adult service delivery system. Ferguson et al.’s (1988) parents accepted status transitions readily: The more pragmatic concerns of how the family will cope (family life transitions) and who will be there to help (bureaucratic transitions) seemed ultimately much more revealing of how families really differ in their approaches to the post-school lives of their children. (Ferguson et al., p. 185)
Even in the new millennium, parents of young adults with mental retardation are among the earliest generation to expect their youngsters to attain this bureaucratic transition, despite their seTransition to Adulthood
vere disabilities. Ferguson et al. (1988) identified this period as uniquely stressful for parents due to the spotty and uncoordinated array of services available post high-school and cultural norms that dictate far less parent involvement in the life of an adolescent/young adult.
Transition Success There is no singular definition of successful transition outcome in the literature, though there are many overlapping dimensions. These may best be summarized as being any desired outcome in the areas of residence, education, employment, or social environment (e.g., social support, personal satisfaction, friendships) (Chadsey-Rusch & Heal, 1995; Halpern, 1994; McGrew, Johnson, & Bruininks, 1994; Tisdall, 1994). Thus, the model contains four indicators of transition success, derived from reported findings in the literature. It may not be necessary, however, for an individual to attain ‘‘success’’ in all four areas. Although the zeitgeist is for young adults to live independently in the community, it is easy to imagine a young adult with severe mental retardation who continues to live at home, but who has a job, ready opportunities for socialization, and a quality of life perceived as high by parents or caregivers. Furthermore, it is an empirical question as to which of these elements of transition success (if any) carries more weight in parents’ judgment of transition as successful. Some purport that successful transition outcomes would all fit under the broader rubric, quality of life (Halpern, 1994; Hatton, 1998; Schalock, 1990, 1996). Following Halpern (1985, 1994), one might view transition as multidimensional. As such, there is need to track residential, school, work, and social experiences of adolescents and young adults as they transition from one setting to another and to assess satisfaction with transition not only from parents and siblings but, where possible, from the individuals 178 AJMR, Volume 106, No. 2
served. To date, most studies of transition for persons with severe mental retardation have been focused on employment outcomes, often in comparison to other young adults who have less pervasive need for ongoing support on the job (Mank, Cioffi, & Yovanoff, 1998). As the adolescent transitions into young adulthood, he or she will experience many changes in support services. Two key service issues are the termination of public school funding and the increased likelihood of out-of-home placement (Blacher, 1994; Marshak et al., 1999). Typically, public school services end when an individual with mental retardation reaches age 22; if this occurs during a school year, the individual may complete that year. However, there is a clear need to shift to other types of programming and funding services during this transition period. Perhaps the most salient transitional outcome is leaving home. We have had a continuing interest in residential placement. As with other mental retardation issues, investigators have focused on the two ends of the lifespan, with virtually no attention to placement during the transition period of concern here. With young children, normalization theory would not support the practice of out-ofhome placement and rates have decreased (Amado, Lakin, & Menke, 1990). The risk of out-of-home placement is heightened, however, when children with severe disabilities reach adolescence (Blacher & Hanneman, 1993; Meyers, Borthwick, & Eyman, 1985). Often, the daily care needs of children with severe disabilities become more intense in adolescence due to the child’s physical development and maturation (Blacher, 1994a). These, too, can lead to increased stress in families (Farber, 1975; Shapiro, 1988) and an increased need for out-ofhome placement (Blacher & Bromley, 1990; Kobe, Rojahn, & Schroeder, 1991). Even throughout the 1990s, it was not uncommon among older parents for the adult son or daughter (e.g., age 30 or older) to reside in the parents’ home
(Aquilino, 1991). M. Seltzer and Krauss (1994) have reported positive benefits of coresidence for both the caregiver (generally mother) and the individual with mental retardation. However, these adult sons or daughters with mental retardation were raised mostly prior to the passage of P.L. 94–142 in 1975, with its emphasis on mainstreaming, schooling, vocational and work placement, and community integration. There may be strong cohort effects in the relationship between out-of-home placement and family well-being. Life-long coresidence may be salutary for aging caregivers (M. Seltzer & Krauss, 1994), but a less frequent choice and of less benefit for younger, post-P.L. 94–142 parents. Indeed, Blacher and Baker (1994b), studying families who recently placed children and adolescents, reported that although placement of a child is an intensely emotional experience, almost all families indicated that, in balance, there was an increase in parental and family well-being. Family well-being after placement was also focused on by Bruns (2000) in her qualitative study of out-of-home placement. These families will likely look to a more normalized life for their sons or daughters and be anticipating services in the community. Thus, a direct relationship between transition success and family well-being is proposed here. In several recent studies of the transition process, researchers examined parental perspectives (Hanley-Maxwell, Whitney-Thomas, & Pogoloff, 1995; Lehmann & Roberto, 1996; Thorin, Yovanoff, & Irvin, 1996; Zetlin & Turner, 1985) and student perspectives (Morningstar et al., 1996). Using focus group methodology for the most part, these studies provide insightful comments from parents about their expectations for their children’s employability and residential placement as well as student perspectives on their family’s involvement. Several authors noted the ambivalence and tension parents and students alike feel about autonomy and independence, which sometimes contradict the need for
ongoing family involvement and support (Hanley-Maxwell et al., 1995; Thorin et al., 1996). These small-sample focus group studies have heuristic value in suggesting issues to study more systematically. However, Hanley-Maxwell et al. (1995) concluded that ‘‘in-depth interviews and observations conducted at multiple points across time might reveal patterns of behavior and changes in attitude as they occur throughout the transition period’’ (p. 14). An additional argument would be the benefits of larger samples, more quantitative methodology, and a clear differentiation among samples. For example, most of the studies just noted involve verbal, fairly high-functioning individuals with mental retardation. Young adults who have pervasive support needs (Luckasson et al., 1992) or even more profound mental retardation, using the ‘‘old’’ terminology (Grossman, 1983), would not be active participants, which further highlights the need for parental perspectives. As others have argued (Gortmaker, Perrin, Weitzman, Homer, & Sobol, 1993), I believe that the relative importance of factors enhancing transition success versus factors diminishing transition success should be examined. Satisfaction with transition experiences and placements will likely bear a strong relationship to family wellbeing during this developmental period (Farmer, 1993).
Correlates of Successful Transition and Family WellBeing Individual characteristics. For youngsters with mental retardation, the developmental tasks of adolescence (emancipation, self-concept, use of leisure time, sexuality, vocational preparation, independent living) will be, to varying degrees, compounded by their disability and the fact that they will not achieve many of the cognitive, communicative, social, and behavioral milestones typically evidenced by peers withTransition to Adulthood
out handicaps. The developmental tasks of typical adolescence may be an ongoing struggle throughout the transition to young adulthood (Marshak et al., 1999). Transition success is likely influenced by a number of individual characteristics, including age, gender, physical health, cognitive functioning, adaptive behavior, and maladaptive behavior or psychiatric status. There is evidence that adaptive behavior, especially appropriate social behavior, relates to indices of transition success for adolescents (Kraemer, Blacher, & Marshal, 1997) as well as young adults (e.g., employment or vocational) (Hanley-Maxwell, Rusch, Chadsey- Rusch, & Renzaglia, 1986; Wehman, 1996). Moreover, as the individual moves toward opportunities for greater independence, the onset of psychiatric disorder and, more generally, maladaptive behavior, may take on central significance. Indeed, Gore et al. (1997) suggested that the degree of change taking place after high school, and the required adjustment to that change, can be expected to affect the mental health of youth without disabilities as well. Individuals with mental retardation are estimated to be at least twice as likely as persons without mental retardation to have a diagnosable psychiatric disorder (Menolascino & Fleisher, 1991; Nezu, Nezu, & Gill-Weiss, 1992; Pfeiffer & Baker, 1994). Studies of such dual diagnoses suggest that persons with mental retardation are vulnerable to the full range of psychopathology that occurs in the general population (Campbell & Malone, 1991; Eaton & Menolascino, 1982; Galligan, 1990). Although there has been little study of how specific psychiatric disorders relate to age in persons with mental retardation, in the nonhandicapped population the age period of interest here (18 to 26) represents a high-risk period for the onset of many disorders (American Psychiatric Association, 1994). Whether this heightened risk holds up cross culturally is not known, although it probably does. For example, rates of psychiatric disorder in adults 180 AJMR, Volume 106, No. 2
without mental retardation are similar across Hispanics and Anglo-Americans (Karno et al., 1987; Vernon & Roberts, 1982). However, the literature does not contain any studies of dual diagnosis in Hispanic adolescents. The heightened risk of psychiatric disorder has been variously attributed to the individual with mental retardationâ€™s associated medical, physical, or sensory handicaps; difficulty in processing information; poor social judgment; poor ability to communicate; inability to self-regulate; and inability to reason beyond the here and now (Menolascino & Fleisher, 1991). As the young adult transitions out of school and into work and social settings that go beyond the familyâ€™s purview, intellectual and adaptive behavior demands increase as do sanctions for maladaptive behavior. Research on dual diagnosis has been primarily epidemiological, with scant attention to the effects of psychiatric disorder on the individualâ€™s life. There is some evidence that suitable services are difficult to find for persons with dual diagnosis (Baker, Blacher, & Pfeiffer, 1993, 1996; Szymanski, 1987) and that these individuals are more likely to fail in community residential and work placements (BorthwickDuffy & Eyman, 1990; Campbell & Malone, 1991; Galligan, 1990; Shoham-Vardi et al., 1996). It seems likely that individuals with psychiatric disorder or other behavior problems will fare considerably less well with transitional period tasks associated with residential, work, and social environments. This is an important issue for more study, as such a relationship would have implications for public policy regarding mental health services. Environment and culture. Important considerations in predicting transition success are the resources available to the family system and the social cultural contexts in which they operate (Harrison, Wilson, Pine, Chan, & Buriel, 1990; McAdoo, 1993; Rueschenberg & Buriel, 1989). One resource domain is interpersonal support, and there is evidence that the several types of support
(being married, spousal support, marital adjustment, extended family support, global support) play significant main, moderating, and/or mediating roles in the relationship between child or adult as stressor and the outcome of parental well-being (Cohen & Wills, 1985; Li, Seltzer, & Greenberg, 1997; Magan ˜ a, 1999; Suarez & Baker, 1997). Another resource variable is socioeconomic status (SES), which actually represents a collection of resources and plays a predictable role in family well-being. There are at least three other characteristics of the environment or culture that appear to be important to transition success, although they have received little study in this context: (a) service supports, (b) acculturation for ethnic minority families, and (c) religious and cultural beliefs and practices. By service supports, both the programmatic options available and the extent to which the individual’s actual programs support transition goals are considered. For example, supports might be available through the residential environment (either in the family home or other living settings if the young adult has moved out), inclusion practices (promoted at school and/or work); training experiences, and parental knowledge of available opportunities, policies, and prevailing practices. I hypothesized that policies and practices regarding schooling, work, residential, and other community experiences would affect transition, which, in turn, would affect family wellbeing. Although it is axiomatic that ‘‘culture matters,’’ until the 1990s, most mental retardation research had been conducted without regard to cultural differences. There is now an ongoing interest in how families cope with mental retardation in the Hispanic, or Latino, culture (Blacher, Shapiro et al., 1997). The extent to which research findings on families and disability that are based primarily on Anglo samples will be applicable to Latino families is not currently known. Several investigators have found that Latina mothers, like their Anglo counter-
parts, experience increased burden of care (Heller, Markwardt, Rowitz, & Farber, 1994; Shapiro & Tittle, 1990). It is not known, however, whether the increased stress and threat to well-being found in Anglo mothers is similar in this population of Latina mothers (Breslau, Staruch, & Mortimer, 1982; Bristol, Gallagher, & Schopler, 1988; Harris & McHale, 1989; Walker, Ortiz-Valdes, & Newbrough, 1989). Moreover, it is unclear whether Latinos face the same types and degree of transition challenges (Atkins, 1992) or whether they even view behavior challenges in their children the same way (Chavira, Lopez, Blacher, & Shapiro, 2000). The same could be said for other ethnic groups (e.g., African American and Asian cultures), for which studies of cultural perspectives on the use of formal and informal support (Okano, 1993) or the transition of ‘‘launching’’ young adults after high school are, for the most part, lacking. Survey research has shown that minority status can serve as an obstacle to successful transition, as demonstrated by typically lower employment rates and wages in minority young adults with (Blackorby & Wagner, 1996) and those without (Kantor, 1994) mental retardation, but the contributing factors require more study. One approach is to assess the extent to which the family has adopted the practices and beliefs of the majority culture, or the degree of acculturation (Marı´n & Marı´n, 1991; Zuniga, 1992). Another is to examine beliefs, attitudes, and practices related to a specific culture or religion that might be compatible or incompatible with transition interventions and goals (McAdoo, 1995; Rogers-Dulan & Blacher, 1995). In Latino families, for example, cultural values of familism relate positively to maternal well-being (Magan˜ a, 1999). However, familism (e.g., interdependence among family members lending support) as well as family cohesion may conflict with policies promoting community inclusion (Blacher, Lopez, Shapiro, & Fusco, Transition to Adulthood
1997). Russell (1999) recently reported demographic data indicating that a higher percentage of Hispanic families than Anglo or African American families (63% vs. 50% and 46%, respectively) had children still at home. Thus, values such as cohesion or familism may be affecting the rate that Latino youth without disabilities are transitioning out of the family home. Also, for Latinos, family- or group-oriented interventions may be more acceptable than individually oriented programs and transition programs. (Szymanski, 1994). Cultural practices related to religion may also influence transition goals or success. For example, religious connectedness was a predictor of maternal wellbeing in African American families who had children with mental retardation (Rogers-Dulan, 1998). Thus, it is conceivable that religious beliefs and behavior would buffer stress related to transition as well. Family involvement. The final domain in our model of transition success and family well-being is family involvement. I hypothesized that family planning and decision-making about transitional services, as well as family involvement with the child and the service agencies, are primary factors in transition success. Young adults with mental retardation often rely on the support of families and significant others well into adulthood (Steere, Rose, & Gregory, 1996). As the individual progresses through the transitional period, community-based living away from the family home becomes more normalized, and parents themselves may view the son or daughter moving out at this time less as ‘‘placement’’ or ‘‘leaving’’ and more as ‘‘launching’’ (Blacher et al., 1999). There is little known about parents’ involvement during these years. However, there are data from children and adolescents to suggest that preplacement involvement in decision-making may predict postplacement involvement (Baker & Blacher, 1993). However, research with aging par182 AJMR, Volume 106, No. 2
ents of older adults with mental retardation indicates that they are often reluctant to plan such transitions (Freedman, Krauss, & Seltzer, 1997) or to approach the service system for help in finding residential placement before there is a crisis (Smith, Tobin, & Fullmer, 1995). This lack of planning has deleterious effects for the placed adult. Gordon, Seltzer, and Krauss (1997) examined the health and functional abilities of adults with mental retardation who had been placed either before, or after, the death of a parent. They found improved well-being in the placed adult when placement occurred prior to parental death, suggesting the importance of the family support system in postplacement adjustment. However, many aging caregivers lack plans for residential placement or financial arrangements (Heller & Factor, 1991), and one study indicated that planning related to future community living arrangements was a concern of persons with mental retardation themselves (Campbell & Essex, 1994). Active parent or family involvement is also needed to access services and appears to be critical to successful transition for young adults with mental retardation (Nisbet, Covert, & Schuh, 1992; Wehman, Moon, Everson, Wood, & Barcus, 1988). This argument derives from studies that have examined parental involvement following one major transition—out of home placement. When parents place a child or adolescent, they do not usually do so as a result of weakened attachment (Bromley & Blacher, 1991). Moreover, evidence suggests strong ties to the child once placed, which bodes well for parents who worry about disengaging from their young adult once a move into the community occurs. The literature on children and adolescents does not provide evidence for the type of ‘‘detachment’’ that might be expected from other separation experiences (e.g., divorce) once placement occurs (Blacher & Baker, 1994a). Thus, we are particularly interested in longitudinal study of parents’ behavioral, cog-
nitive, and emotional involvements over time following residential placement or other transitions (Blacher & Baker, 1994a), especially as they impact the well-being of the parents and of the young adult with mental retardation. Sibling involvement, too, is likely to be a critical factor, both in transition success and parental well-being. Siblings without disabilities play an important role in providing support to a brother or sister with mental retardation (Krauss, Seltzer, Gordon, & Friedman, 1996) and to the caregiving parents (G. Seltzer, Begun, Seltzer, & Krauss, 1991; M. Seltzer & Krauss, 1993). Most late adolescent siblings express considerable concern about the future of the child with mental retardation and their own roles and responsibilities in it (Blacher, 1993; Eisenberg, Baker, & Blacher, 1998). Yet, during this transition period, brothers and sisters who previously helped with social and caregiving routines often leave home and take with them an important source of daily assistance and support (Carney, 1991). The role of these siblings in families, and the notion of codependence of parents and siblings, has not yet been investigated during the period of development captured in late adolescence/ young adulthood.
Summary Much of what we know about mental retardation and families comes from the study of young children or older adults. Yet enlightened policy and services to families will depend, in part, upon a better understanding of impact and coping across all stages of the life course. The developmental period of transition from late adolescence to young adulthood is a time of very significant change for individuals and their families. Research is needed to assess transition success and uncover its strongest predictors, examining characteristics of the person with mental retardation, available resources, cultural attitudes and beliefs,
and the involvement of family members. Most important, research is needed on the extent to which well-being of the family during this developmental period is influenced by successful transition of the child with mental retardation. Systematic and longitudinal study of transitional experiences will help to fill this gap, providing information that can be utilized by policymakers and service providers, especially to facilitate parents’ planning for the future.
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