Work adjustment of people with congenital disabilities: a longitudinal perspective from birth to adulthood.

Work Adjustment of People with Congenital Disabilities: A Longitudinal Perspective from Birth to Adulthood

Lifespan intervention from birth through adulthood for children and adolescents with mild and severe disabilities has been made possible by recent amendments in special education and rehabilitation legislation. The 1986 Education of the Handicapped Act (EHA) Amendments extended special education services downward to birth and provided transitional services to post-secondary education, training and employment [Sec. 101 & 306]. Rehabilitation legislation has also reflected concern for school-to-work transition (Szymanski, King, Parker, & Jenkins, 1989) and has recently, through the 1986 Rehabilitation Act Amendments, extended employment options to individuals with more severe disabilities by establishing supported employment options as an acceptable outcome of rehabilitation services (Wehman, 1988; Menchetti & Rusch, 1988).

Career development and work adjustment of people with congenital disabilities is a developmental process that begins at (or before) birth. Critical incidents in the early years are considered to have profound implications for later career development of persons without disabilities (Osipow, 1983; D. Brown, Brooks, & Associates, 1984). And, although there is little research to date, it is logical that such incidents are equally or potentially more potent in affecting the career development of people with congenital disabilities (Britton & Thomas, 1973; Wright, 1983).

The purpose of this paper is to present a longitudinal perspective of potential determinants of work adjustment of persons with disabilities from infancy through adulthood. Dependence at birth leading to independence at adulthood is the typical developmental progression. A lifelong intervention goal for all individuals with disabilities should be to provide them with the necessary skills and attitudes for independence (Haley, Hallenborg, & Gans, 1989). In this paper, we will discuss: (a) the development of work adjustment, (b) early interactions affecting work adjustment, (c) possible interventions from early childhood through adolescence, (d) principles for selection of interventions, and (e) implications for special education and rehabilitation.

The Development of Work Adjustment

"Career development is, for most people, a lifelong process of getting ready to choose, choosing, and typically continuing to make choices from among the many occupations available in our society" (D. Brown & Brooks, 1984, p. ix). Work adjustment, a related construct, is the sequential and interactive development of three domains: work personality, work competencies, and work goals (Hershenson, 1981). Work personality can be described as one's self concept as a worker or one's personal system of motivation for work. This domain sets the stage for development of work competencies and work goals, although the latter two domains also influence the continued development of work personality. Work competencies consist of work habits, physical and mental skills applicable to jobs, and work related interpersonal skills (Hershenson, 1981). Work adjustment and career development are related and intertwined concepts, which will be used together to examine the longitudinal aspects of employment preparation of people with congenital disabilities.

Due to its sequential and interactive nature Hershenson's work adjustment model provides a conceptual framework from which to view the development of critical determinants of positive career development from birth through adult life. Work personality develops during the preschool years and is primarily influenced by the family; work competencies develop in the school years as a result of successes and failures. Work goals, which develop during the later school years and continue to develop in adulthood, are influenced by peer and reference groups and reflect available opportunities and options (Szymanski, Hershenson, & Power, 1988). For persons with disabilities, it is likely that the development of work personality will extend into the school years and interact significantly with the development of work competencies.

The process of work adjustment begins early in life. From birth onward, child-adult interactions and child experiences are believed to affect later attitudes toward work and leisure time activities (D. Brown, Brooks, & Associates, 1984; Osipow, 1983; Szymanski, Hershenson, & Power, 1988; Zunker, 1986). Children with disabilities may have limited ability to affect what, how, and why things happen to them. Child needs may be attended to with little attention to child preference, thus providing limited opportunity to learn decision making skills. Play activity and interaction with same-aged peers are restricted, with restrictions increasing with the severity of the disability (Guralnick, 1980). This lack of early play experiences may limit early work role fantasies (e.g., playing fireperson, playing house) and the development of interpersonal skills. In addition, the child with a disability may have fewer opportunities to participate in family chores, thus limiting the development of a sense of work responsibility.

The principles of Hershenson's theory of work adjustment (1981) and some career development theories (e.g., Ginzberg, Roe, and Super cited in Zunker, 1986) place considerable value on early interactions and experiences. These theories suggest that limitations in early experiences may constrain the career development and ultimate work adjustment of persons with congenital disabilities. Indeed, both Conte (1983) and Curnow (1989) have identified limited early experiences as major obstacles in the career development of people with congenital disabilities. Hershenson's (1981) model illustrates how earlier experiences and interactions can influence later work adjustment. We believe that early interactions of children with disabilities with significant others (e.g., parents, caregivers, non-disable siblings and peers) are critical determinants of work personality. Such interactions, which will be discussed in the next section, either enhance or constrain the child's self concept as a worker and, thus, enhance or constrain the child's eventual work adjustment.

Early Interactions Affecting Work

Adjustment

Work adjustment begins in infancy. Parental reactions to having a child with a disability and their expectations of the child's present and future abilities influence their behavior toward the child, which in turn influences the child's behavior and the child's development of self concept (Mahoney, Finger, & Powell, 1985; Wright, 1983). Parents' adjustments to the abilities of their infants may present emotional challenges, which are similar to those faced by individuals in adjusting to adventitious disabilities (Wright, 1983).

The problems of parental adjustment may be compounded by communicative difficulties. Full term infants' behaviors including crying, facial expressions, and body movements are much easier for parents to interpret and respond to than preterm infant behaviors (Barnard, Bee, & Hammond, 1984; Field, 1979; Goldberg, Brachfeld, & DiVitto, 1980). Similarly, behaviors of infants with cognitive disabilities (Mahoney, Finger, & Powell, 1985), physical disabilities (Gallagher, Jens, & O'Donnell, 1983), and sensory disabilities (Als, Tronick, & Brazelton, 1980) are more difficult for parents to interpret and respond to than behaviors of full term, non-handicapped infants. Thus, the parent's responses to the infant are affected by the infant's developmental status and the parent's skills and attitude in understanding the infant's behaviors (Baird, 1987). Poor parent-infant communication can lessen opportunities for the child to manipulate and control the physical and social environment (Baird, 1987; Field, 1983) and thus potentially impair cognitive and social development, critical ingredients of work adjustment.

Problems of parental adjustment to their child's disability and communicative difficulties may be further complicated by deficit-centered prescriptive intervention models. Such models, while attempting to address specific disabilities and resultant limitations, can obscure the total child and family needs and interactions (Ensher & Clark, 1986). Further, prevalent multidisciplinary (as opposed to transdisciplinary) approaches and consequent lack of interdisciplinary communication (Orelove & Sobsey, 1987) can result in family lives revolving around treatments rather than treatments supporting family life. Interventions are often targeted solely to deficit reduction rather than enabling individual functioning in environments and circumstances natural for nonhandicapped individuals of the same age (Campbell, Leib, Vollman, & Gibson, 1989). Such interventions can serve to further isolate children with disabilities and their families (Orelove & Sobsey, 1987), and, logically, are likely to interfere with the development of a positive work personality.

Positive work adjustment can further be impeded by the process of establishing eligibility for and delivering special education services. Eligibility for educational intervention (i.e., special education services) is predicated on either established developmental/educational deficits (EHA, 1975) or potential deficits (EHA Amendments, 1986). Physicians frequently present a "worst case scenario" to the parents regarding their child's future developmental and educational outcomes (Ensher & Clark, 1986). Thus a combined medical and educational focus on "what the child cannot do" (i.e., deficit focus) and "attempting to do for the child" (i.e., dependency orientation) is frequently established in infancy and continues through adulthood for people with disabilities.

Passive programming, that is interactions in which stimulation is done to the child as contrasted with those interactions which respond to child initiation, poses additional threats to positive work adjustment. Downing (1988) found that as the severity of the mental, physical, sensory, and medical impairments increased for students with disabilities so did the percentage of passive versus active programming. Students classified as having severe disabilities have few opportunities to express preferences and make choices (Guess, Benson, & Siegel-Causey, 1985). Furthermore, when they do initiate behaviors, instructional staff have a very low rate of responding, especially in unstructured conditions (Houghton, Bronicki, & Guess, 1987). The predominant use of passive programming, few opportunities to express preferences, and lack of response by adults, all mitigate against students with severe disabilities developing desirable work personalities and work competencies in preparation for school to work transition. It is likely that similar forces are at work with children with mild disabilities, albeit to a lesser extent.

It is obvious that many of the early experiences that are thought by theorists to contribute to individual work adjustment can be altered significantly by disability. The longitudinal nature of career development is such that few studies study of the effects of disability have been conducted (Conte, 1983). Nonetheless, the importance of the eventual work adjustment of persons with congenital disabilities is such that immediate research as well as preventative action is imperative. We leave research as a topic for future endeavors and address potential interventions based on work adjustment theory in the next section.

Possible Interventions from Early

Childhood through Adolescence

Fortunately, opportunities exist for families and enlightened education and rehabilitation professionals to facilitate rather than thwart the work adjustment of people with congenital disabilities. Possibilities for enhancing work adjustment are presented according to the following life stages: (a) early childhood, (b) primary and middle school years, and (c) junior and senior high school.

Early Childhood

The emphasis on parental involvement and the extension of services downward to birth in the 1986 Special Education Amendments (Sheehan, 1989) can provide opportunities to affect the work personality during the most critical formative years. In birth through age two interventions, the infant-parent interactions are becoming a primary focus for intervention especially when turn taking patterns between the infant and the adult are out of balance (Odom & McConnell, 1989). The importance of turn taking is that it allows the infant important opportunity to control the pace and nature of interaction and thus to have some control of the environment. Controlling ones' environment is important in preventing "learned helplessness". Seligman's (1975) learned helplessness theory postulates that when individuals are exposed to experiences in which they have little or no control, they give up trying to affect their environment; this in turn promotes dependent rather than independent behavior. Such dependence no doubt contributes to problems in the realm of work adjustment.

Another factor in the development of work adjustment, play, is critical not only to cognitive development (Shelton, 1989), but also to development of interpersonal skills (Sparks, 1989), and the fantasy stages of career development, e.g., playing firefighter, playing house (Osipow, 1983). Children with disabilities may have limited play opportunities due to physical or cognitive limitations, parental expectations, or societal prejudices (Guralnick, 1980; Guralnick & Groom, 1985). A wide range of play-oriented interventions are possible at this time, including, but not limited to: technological adaptations (e.g., modified switches) to allow children with physical disabilities to control toys, arrangement of opportunities for play with same aged nondisabled peers, and provision of early social skill training to promote acceptance by playmates (Strain & Odom, 1986) Cleaning up after play and doing simple chores in the home also provide experiences in work related behaviors (e.g., getting materials, following directions, completing tasks) associated with early school success (Vincent, Sailisbury, Walter, P. Brown, Gruenwald, & Powers, 1980).

Hershenson's theory of work adjustment (Hershenson, 1981; Szymanski, Hershenson, & Power, 1988) posits that the foundation of work personality is laid during the preschool years and heavily influenced by family interactions. Educators can consult individually with parents or arrange for rehabilitation counselors to meet with groups of parents to discuss vocational options for persons with disabilities. Parents can be informed that work possibilities exist for most individuals with disabilities, even those with the most severe disabilities (Wehman & Moon, 1988) and that they have a great influence on the development of their child's self concept as an individual and later as a worker (i.e., work personality).

Primary and Middle School

Hershenson's work adjustment model posits that work competencies (i.e., work habits, physical and mental skills applicable to jobs, and work-related interpersonal skills) develop as a result of successes and failures in the school years and that work personality continues to develop during these years (Szymanski, Hershenson, & Power, 1988). During these years, families and teachers continue to profoundly influence the potential work adjustment of children with disabilities. Play continues to stimulate career related fantasy (Osipow, 1983), work competencies, and the development of critical interpersonal interaction skills (Vincent et al., 1980). Responsibilities and natural consequences in the classroom and at home help to promote the development of good work habits (e.g., completing tasks, cleaning up one's work or play area). Functional skills can be infused into curricula to provide students with competencies for their future roles in the daily living, personal-social, and occupational domains. Brolin's Life-Centered Career Education Curriculum delineates 22 major competencies that can be infused into K to 12 curricula to address these three major life domains (Brolin & Gysbers, 1989).

At the primary and middle school levels future employment may not be a major consideration fo families or teachers of children with disabilities. Inclusion of content related to career development and work adjustment of students with disabilities in preservice special education courses and dialogue between special education techers and graduate trained rehabilitation counselors can add a work directed focus to special education. Special education and rehabilitation professionals can continue regular contact with families reinforcing the role of the family in the development of work personality and work competencies.

Junior and Senior High School

According to Hershensonhs model work goals, which develop during the later school years, reflect the influence of peer or reference groups and available options (Szymanski, Hershenson, & Power, 1988). Recent curricular models for students with severe disabilities, which focus on competencies needed for adult functioning in the community (L. Brown et al., 1980), reflect both the continued importance of the work competencies domain and the importance of the work goals domain in the later school years. In describing the underlying logic of such curricular models, Hanley-Maxwell (1986) suggested that curricula should be unique to each student's particular situation and should be developed around competencies needed for functioning in three domains (employment, residential/domestic, leisure/recreation) and four settings (home, school, place of employment, and community).

Two additional considerations are of particular importance for special educators and rehabilitation counselors at this stage of work adjustment. First, the family must be considered as integral members of habilitation/rehabilitation planning teams (Szymanski, Hershenson, & Power, 1988). And, second, traditional, static models of assessment are not adequate for the challenges of preparing students with disabilities for employment. Rather, an ecological model incorporating consideration of individual characteristics, environmental characteristics, perceptions by the individual and significant others, and interactions is recommended. Interventions are determined on the basis of analyses of the discrepancies between current functioning and requirements of future environments (Parker, Szymanski, & Hanley-Maxwell, 1989).

Principles for Selection of Interventions

Interventions can have good or bad results, and whether results are considered good or bad may depend on the philosophical orientation of those involved. A variety of interventions can be considered from birth through transition from school to work (or post-secondary education) in order to facilitate the work adjustment of people with congenital disabilities. While a longitudinal frame of reference is paramount, so too are guiding principles to ensure that interventions are planned to enable and ntegrate rather than handicap and segregate people with disabilities. Interestingly, it appears that both L. Brown's curricular principles of partial participation, (Baumgart et al., 1980) and the criterion of ultimate functioning (L. Brown et al., 1980), and Parker, Szymanski, & Hanley-Maxwell's (1989) supported employment related intervention guidelines of maximal individual control, independence and autonomy, lease intrusive, and most natural interventions are applicable for work adjustment interventions throughout the life-span. Following is an overview of these principles and their application to facilitating the work adjustment of people with congenital disabilities from birth thrugh adulthood.

Partial Participation

Full participation in age appropriate environments and activities is the ideal goal. But when full participation is not possible, partial participation is far better than exclusion from such environments and activities (Baumgart et al., 1980, p. 158). Instruction and environmental adaption should be used as necessary to enable participation. While participation is important, so too is consideration of the choices of the individual (Guess, Benson, & Siegel-Causey, 1985). For example, having a child simply put toast into the toaster is less meaningful than having the child choose between toast and waffles and then put the chosen item into the toaster.

The Criterion of Ultimate Functioning

The criterion of ultimate functioning means that interventions must be designed to prepare an individual "to function as productively and independently as possible in socially, vocationally, and domestically integrated adult community environments (L. Brown et al., 1980, p. 6). Interventions should be regularly reviewed for this principle and should be discontinued if they are not contributory to the criteria of ultimate functioning.

Maximal Individual Control

Interventions should be designed to be maximally under the control of the individual rather than others (Parker et al., 1989). For example, toys, should be adapted for direct use by children with physical disabilities; monitoring of classroom chores should be under control of those students responsible; and self-monitoring of work rate is preferable to job coach monitoring.

Independence and Autonomy

Interventions should be designed to facilitate individual independence and autonomy (Parker et al., 1989). Parental encouragement of child interactive play, classroom responsibilities and natural consequences, and multiple community work experiences are interventions that are though to lay foundations for independence. Segregation and limited environments, lack of participation in responsibilities of the home and classroom, and too much or poorly designed support in job training can mitigate against the development of independence and autonomy. Professionals are reminded of their ethical responsibilities to "recognize both clients' preferences and experiential limitations... and to promote the development of autonomy through experiences which can facilitate client competence" (Patterson, Buckley, & smull, 1989).

Least Intrusive Interventions

The least intrusive means that are still effective should be used (Parker et al., 1989). Professional interventions should be limited when family interventions are feasible. Pull-out interventions (e.g., going to the special classroom) are more intrusive than the provision of consultation by specialized professionals in the natural environment (Orelove & Sobsey, 1987). And, similarly, verbal prompts are often less intrusive than physical prompts (Moon, Goodall, Barcus, & Brooke, 1986).

Most Natural Interventions

Interventions should be designed to be as natural as possible for the environment (Parker et al., 1989). A pocket notebook for work or chore tasks can be more natural than a large clipboard. And coworker supports can be more natural than the conspicuous presence of a job coach (Nisbet & Rogan, & Hagner, 1989).

Implications for Special Education and

Rehabilitation

Work adjustment of people with congenital disabilities must be viewed from a longitudinal frame of reference. Implications for special education and rehabilitation are bidirectional in nature. Henshenson's model of work adjustment provides a longitudinal conceptual framework for the career development of people with congenital disabilities from birth through adulthood. And, as we have demonstrated through the above discussion, this framework can be used to conceptualize educational and rehabilitation interventions from early childhood through school to work transition.

Ecological approaches, which have emerged in special education (D'Alonzo, Arnold, & Yuen, 1986; Wallace & Larsen, 1978) and rehabilitation (Scofield, Pape, McCracken, & Maki, 1980; Szymanski, Dunn, G. Parker, 1989; Szymanski, Hanley-Maxwell, & Parker, in press), have expanded the focus of assessment and intervention within specific time-frames of the lives of individuals with disabilities. What has yet to occur, however, is the development of a longitudinal ecological frame of reference. Our professional orientations and service delivery systems are so segmented by the chronological age of consumers, that we rarely look at how interventions during one life stage (e.g., early childhool) can influence potential and opportunity at another life stage (e.g., school to work transition).

Lifespan intervention for individuals with disabilities is a concept that neeeds to be implemented yesterday. Unfortunately, this concept may not become a reality for a number of years due to the number of barriers that exist. Birth through two programming is a brand new concept to a majority of the states. Supported employment involving persons with severe disabilities is a relatively new concept to rehabilitation. Merging special education and rehabilitation programs has happened at the federal level and is happening in some universities, but there is a long way to go in providing lifespan education/rehabilitation concepts. Research of a longitudinal nature is scarce, and as funding priorities shift, cross-sectional rather than longitudinal research prevails.

despite the numerous barriers to longitudinal thinking, it is imperative that special educators and rehabilitation counselors begin to view the individuals with whom they work in the context of a life-long process of work adjustment. In this way, special education interventions can be designed to promote eventual work adjustment. Similarly, rehabilitation interventions can be planned to address some of the experiential deficits which may have limited the development of a strong foundation of work personality and work competencies on which to build work goals. In any event, it is clear that rehabilitation counselors and special educators must begin to work teogether to enable rather than constrain the work adjustment of people with congenital disabilities.

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