Qualitative research methods were used to examine transition experiences of (a) 9 young adults with severe disabilities during their last year of high school, (b) their parents, and (c) professionals from schools and adult service agencies. Students were remarkably articulate about plans following graduation but had few opportunities to meaningfully fulfill them. Parents hoped their child's talents and abilities would allow them to achieve fulfilling adult lives, but faced uncertain outcomes and unfamiliar procedures. Professionals managed the process and approached transition by matching needs to available programs; however, these programs fostered dependency and denied students a genuine opportunity to achieve full adult status. Although both parents and professionals worked for the betterment of young adults, the inability to recognize diverse perspectives seriously impeded the quality of the transition process.
Editor in charge: Dianne Ferguson
Policy guidelines for transition have been instituted to ensure that youth with disabilities would advance smoothly from school to adulthood (Individuals With Education Act, 1990, 1997; Will, 1984). Transition teams, consisting of school and adult service agency professionals, parents, and youths with disabilities, are charged with mapping out a comprehensive plan so that soon to graduate young adults can access the supports and services they will need to engage in a purposeful adult life. Although the intent of these policy directives is to reinforce a seamless movement from high school to adulthood, significant evidence exists that transition activities do not function as intended. Transition plans are often in name only, many are ineffective, and some may thwart the goals of young adults (Gallivan-Fenlon, 1994; Wehman, 1992).
Transition policy, an outgrowth of disability policies, assumes that young adults with disabilities “require extraordinary support and are likely to be an economic liability to the public” (Mallory, 1995, p. 215). The programs available for young adults after graduation reflect these social policies. Eligibility to receive services is contingent upon regulations that limit placements for most individuals with disabilities to social systems that too often foster dependency while denying adulthood (Biklen, 1988, 1992; Palmer & Wehmeyer, 1998).
The transition social system promotes clienthood rather than adulthood. Clienthood is a role of dependency. Our society and its formal social support systems have effectively denied full adulthood by approaching it in a way that allows no depth or variation to the means by which people with even the most severe disabilities achieve such status (Ferguson & Ferguson, 1993, pp. 597–598).
Service providers and other professionals “often lack an understanding and insight into the characteristics and experiences of families” (Traustadottir, 1995, p. 62). Sources relate that professionals will frequently adopt a clinical–analytical stance when planning with families (Featherstone, 1980; O'Connor, 1995), creating circumstances that make it difficult for families and professionals to come together to develop mutual goals and to collaborate on strategies. This dissimilarity between families and professionals can, at least in part, be attributed to differing structures and purposes. Familial interactions during transition are “functionally diffused,” intimate, and deeply connected while professional activities are “functionally specific” in nature (Lightfoot, 1978) and characterized by technical competence and status. Because transition-planning activities are guided by social policy and regulated by professionals, significant differences arise between what services families want and what services they get. The unfortunate outcome is that families, and their young adult children, experience a loss of empowerment when their goals are not acknowledged nor acted upon effectively.
Development from adolescence to adulthood typically occurs concurrently in at least two areas. The first involves the naturally occurring developmental milestones we all experience. These are the biological and physiological changes that happen automatically whether one chooses them or not. Although age progression from puberty to adulthood provides access to adult legal privileges, biology alone does not assure that a young adult with disabilities will become a fully functioning adult member of society (Ferguson & Ferguson, 1993). A second area of life transition occurs with situational changes: when youth exit one institutional environment to enter another. These social changes mark one's achievement of full adult status. In our society, youth are given prominence in the adult world based on their institutional associations, and, subsequently, the decisions made during transition planning form the basis for future institutional activities and the future status of all young adults, including those with disabilities (Mallory, 1995).
A number of studies have indicated that an atmosphere of a shared and open dialogue among all parties is an essential component for transition-planning activities to be effective. The ideal team relationship, equally balanced among team members who work together to develop a collective perception of adult status, then becomes the reference point to formulate a transition plan (Ferguson, Ferguson, Jeanchild, Olson, & Lucyshyn, 1993). If participating parties do not establish an atmosphere of shared meanings, or if their relations deteriorate in other ways, transition becomes “more of a promise than a reality” (Lehmann, Bassett, & Sands, 1999, p. 168). Ferguson et al. (1993) examined relationships among adult planning-team members and concluded that all too often the professional–parent–young adult relationships were imbalanced. This research presented evidence suggesting that professionals and parents lacked an established atmosphere of shared meanings. The authors reported that professionals perceived parents as coming between themselves and the young adults, whereas parents perceived professionals as having too much influence and control by imposing professional standards on familial values. Young adults, in these situations, either functioned tangentially, or were left out of the process altogether.
In this study I examined the perspectives of transition team members—young adults, parents, and professionals—to better understand how these perspectives influenced the overall quality of the transition experience for young adults with severe disabilities. The study is unique because it builds upon a growing body of research in which the value of examining multiple perspectives of key participants in order to add dimension and insight to the transition process has been recognized (Ferguson et al., 1993; Gallivan-Fenlon, 1994; Lehmann et al., 1999). This approach can be used to view how the differences in attitudes, goals, and strategies each stakeholder brings to the transition table affects the quality of the process and how this quality indicates whether transition is functioning as intended.
Because my objective in this study was to understand transition from the perspectives of primary participants, the design was based on the premise that the dialogues and activities of participants would provide the greatest insight into their experiences. Exploring the process of transition from the perspectives of young adults, parents, and professionals required my gaining access to their environments and culture. I chose to use qualitative research methods because I wanted to discover how events contributed to the formation of viewpoints and, in turn, affected the activities of the primary participants (Bogdan & Biklen, 1992; Taylor & Bogdan, 1984). People act on the basis of their interpretations. As a researcher, my role was to “discover the nature of these interpretations” (Biklen & Moseley, 1988, p. 156) and to determine their contextual significance.
My interest in this study grew from my earlier experiences with transition for youth with disabilities as a high school special education teacher and transition coordinator. It was during this time that I encountered many young adults and families who were unable to secure supports and services that they believed essential for a smooth movement from high school to adult life. These families seemed to have few options available and, consequently, were obligated to work with adult service agency systems that were unfamiliar and inflexible. Being a professional influenced some of my initial perceptions about the young adults participating in the study. There were times when I was too quick to disregard some of the things that they had to say about their lives, concluding that certain comments were insignificant or unrealistic. It was some time before I realized I had missed a great deal of the implied meanings of conversations (Goode, 1992; Moseley, 1990). For example, their conversations about work meant more than just having a job. Work was a metaphor for autonomy that allowed both an outlet for self-expression and symbolized achievement of adult status.
The study was completed in two phases. Each phase took one school year, and young adults were examined in their final year of school. During the first year a group of 4 young adults with severe disabilities and their families participated. Using purposeful sampling (Bogdan & Biklen, 1992), I selected a second grouping consisting of 5 additional young adults and parents. I tried to ensure that participants represented the 1% to 3% of the student population categorized as “severely disabled.” In all, 5 male and 4 female young adults participated. Access to these youth was gained through my connections as a former teacher in a nearby locale, having taught 3 of the participants in prior years. Three lived in a small-sized urban community of 35,000, and 6 were from surrounding rural townships. Educational settings varied. Six attended a community-based life skills classroom; 2, rural high schools; and 1, the local urban central high school. Of the 9 young adult respondents, 7 were able to articulate their experiences fluently, whereas 2 expressed themselves using one- or two-word utterances. Eight of the 9 parents were interviewed at home at least once and also participated in informal discussions prior to, during, and after transition meetings. One parent was unable to be formally interviewed due to illness but did participate in transition meetings and informal conversations. Professional respondents were selected based on their relationship as a stakeholder in the transition of the participating young adults. Some overlap of educational and adult agency professionals serving the soon-to-be graduates reduced the total number of interviews. Overall, 7 teachers and 8 adult agency professionals were interviewed. Six agreed to in-depth, tape-recorded interviews; the others participated in informal discussions.
Over 125 hours were spent in the field generating just over 1,000 pages of transcripts and fieldnotes. I also gathered an additional 100 pages of document data, such as Individual Educational Plans (IEPs), transition plans, and vocational assessment information, which supplemented interviews and fieldnotes.
I elected to use an open-ended approach for interviews. In the early phase of the study I asked parents and professionals to tell me about their goals for these young adults and how they planned to achieve them. Later on, after I established a more familiar rapport with these participants, parents were quite open about why they chose to act in particular ways, discussed their rationale for certain types of supports, and why they refused some proffered program options. They were questioned about their experiences with school districts and agencies and about the factors that may have influenced their participation in their child's transition. I also gained access to the behind-the-scenes activities that often transpired among professionals from several adult agencies who collaborated to come up with a workable plan.
Understanding the communication of the young adults whose experiences were uniquely different from my own posed certain challenges (Ferguson, Ferguson, & Taylor, 1992). I felt the need to try to comprehend the perspective of the recipient of the services in order to understand their views on the transition process. Language is a central part of qualitative research because it enhances our insight into symbolic understanding (Biklen & Moseley, 1988). Young adults were asked what they wanted to do after graduation, what type of jobs they would like to have, and where they would live. They were also asked about friendships and social activities. By gradually developing familiarity and intimacy with these youth, I acquired a more accurate description of their perceptions, which led me to a better understanding of what it means to be a recipient of transition services (Moseley, 1990).
The combination of participant observation and interviews provided a great deal of insight into the meanings of information that might otherwise have gone unexplained and also helped me to connect what was said to earlier incidents (Becker & Geer, 1957; Moseley, 1990). Observational data were collected in the classrooms, during community outings, at vocational training sites, and during graduation ceremonies. Students, parents, and professionals participated in anywhere from two to five transition-planning meetings during their last year of school.
Data were sorted for each participant category: professionals, parents, and young adults. During the initial reading of the data, I developed a list of preliminary codes that represented regular patterns in the form of phrases, topics of discussion, points of view, and activities common across several individuals (Bogdan & Biklen, 1992; Taylor & Bogdan, 1984). Here, it became evident that the backgrounds and attitudes of primary participants shaped the perceptions of other participants and directly affected how they viewed the transition process and subsequently acted during it. This insight was consistent with the conclusion of others; for example, Lehmann et al., 1999) reported that the involvement between professionals and parents during transition was intertwined with how they viewed the transition process. This understanding assisted in the development of coding categories.
Data were reread and each chunk assigned a code either from the preliminary list or a new code that I deemed more appropriate. Code types included context codes, situational codes, perspectives held by participants, activities and events, strategies, and relationships (Bogdan & Biklen, 1992). Many data chunks had more than one code. File cards were used to index codes, which facilitated my sorting them under common themes.
Initially, the young adult category had 33 codes. These were then collapsed and organized under two themes: perceptions of the future—work, social relations, living arrangements—and independence. All themes had subcategories. For example, the social relations category was further subcategorized into friends and family. There were 47 original parent codes now organized under three themes: views, promise for the future, and perspectives on transition. The professional category started with 45 codes, which were also organized under three themes: perspectives on young adults, choosing viable options, and coping strategies.
Young Adult Perspectives
Young adults articulated their postgraduation plans remarkably. Although often apprehensive about facing an unknown future, they were excited by the possibilities of becoming active adult members of their society and exhibited a zest for achieving this status. Most of the topics of conversation with soon-to-graduate young adults revolved around what they wanted to do for a job and how they would spend time with friends and family. These major themes are organized under two headings: aspirations for the future and in pursuit of independence.
Aspirations for the future
By far, work was the most dominant topic in my conversations with young adults. After that, discussions about present and future social relationships assumed great importance, and many, although not all, of them also wanted to have a place of their own. For young adults, these were the benchmarks of adult status and included all the privileges that accompany this social rank. Employment, the first benchmark, entitled them to gain access to a status exclusive to the adult world. It offered challenge yet fulfillment. Having a job also provided economic autonomy.
One of the young adults told me that he wanted to find a job as a cook in a restaurant kitchen. With prompting, he showed thoughtful consideration to where he might be able to work, having already checked out at least one potential site, a restaurant down the street from where he lived: “Maybe Beef World. I work, me. Easy, cutting roast beef machine. Me on wrapping too. Its easy!” Although all young adults were explicit that their first priority was to find a job, a few were less sure about what type of work they would do:
I'm 20 now and I'd like to get a job. Maybe I'll try woodworking. I saw the counselor to see if he could help me. I'd [also] like to work in a garage, working on cars. I'd even sweep floors. But I don't know. The counselor told me they have some in woodworking. I'll be able to earn my own money, but I don't know if I can get it. I guess I'll just have to wait and see what comes up.
During our interviews several young adults expressed a desire to be paid for working. Students complained about not receiving wages for their work at vocational training sites. On occasion a few of the students asked staff members whether training activities were “real or pretend,” indicating confusion about whether what they were asked to do was an actual task or role play. One participant elected to stop going to his vocational training site because he was annoyed, having worked at numerous training sites throughout his high school years without compensation. “For now, I do school work and sometimes go to the gym. But, I'm not going there (the vocational site) any more! What I'd really like is get a real job where I get paid.”
The next benchmark of adulthood for young adults involved spending time with friends and family. Friendships provided both enjoyment and emotional support. Family would be there when they needed extra help and to share in cultural experiences. Participants often discussed how they would spend time with friends. One young woman described her vision: “Sometimes they will come over to my house for supper. And, sometimes we can play games, sometimes. I'd also like to go to Luann's (her friend's) house to visit.” Another was concerned about losing touch with her friends after graduation: “I'm not going to be happy without seeing them. I don't know. I feel sad and lonely without talking to them. I'm afraid. I'm afraid they won't see me again. I really want to spend time with my friends.”
Generally, young adults acknowledged the importance of needing help from parents and friends as sources of both emotional and physical support. One young woman explained how it would be important for her to live near her family to ensure they'd be able to offer this support: “Yeah, sometimes. My family—my family will help me a lot, I think, when I get an apartment, and go to my job. My family, they'll help.” A young man also voiced similar concerns: “Me need help sometimes. My mom and dad—they'll help a lot.”
A place of one's own, or a personal space at home, marked the third benchmark of achievement of adult status for young adults. During both formal interviews and informal conversations, many young adult participants explained how they wanted to have the freedom to come and go and to have a place that was uniquely their own. This meant independent living arrangements for some. Being able to choose how to live one's life in a way consistent with personal values and preferences was their primary concern. One respondent explained: “I'd like to move into an apartment, or a dorm, or something and then I'll move out of my house, I'd like to move away and be on my own.” Two of the young adult men were planning to rent a house together with two other roommates. One family was building a separate in-law type apartment for their daughter in their house. Others were not so quick to set up separate housing. A private space in their family's home or respect for privacy sufficed for the present. However, most participants also discussed the possibility of eventually having their own place in the not too distant future.
In pursuit of independence
Young adults often discussed how they would finally be able to make their own decisions once they achieved adult status. An especially prominent desire was for other adults to recognize that they could make reasonable choices and act responsibly. One young adult provided insight into some of the difficulties experienced by youth trying to become more independent. He was annoyed with both his mother and his teacher for telling him that he would be working at a particular job:
I was ready to blow a fuse. I was ready to blow a fuse. So, I said, “Goodbye.” Yup, “Goodbye, I don't want to listen to you.” I don't want to work there anymore. I was sick of it! They were going to make argue, argue, argue. Yup, “Goodbye (laughing), see ya!”
A young woman wanted to move away from her parents so she could do more of the things she wanted: “I want them to stop crying over me. When I move away then they can come over and that will make them happy because I'd like to do more of those things myself.” Independence from authority figures characterized one area for those young adults who felt ready and capable to make consequential decisions regarding their future. This desire was voiced by one of the young men: “If they'd just let us, we'd do the right thing.”
Parents' goals for their young adult child included achieving a sense of fulfillment through the use of talents and abilities, contributing to the greater community, and keeping him or her safe from harm. Although parents and children did not always agree on how to achieve these objectives, and although the level of young adult participation varied by family, parents sought children's input when planning how future goals would be reached. Parent perspectives are arranged under the following theme headings: views of children, promise for the future, and perspectives on transition.
Views of children
Rather than make assumptions about children based on societal images of disability (Biklen, 1988; Ferguson, Ferguson, & Jones, 1988; O'Connor, 1995; Lehmann & Roberto, 1996), parents emphasized their child's strengths and capabilities and pointed out that his or her personality traits and accomplishments were indicative of a promising adulthood. “He never gives up,” “She's a good decision maker and she'll follow through,” or “She's dependable at home” indicate some of the ways parents described their child as they sought transition objectives that optimized these distinct capabilities.
Families approached transition planning inductively. They emphasized the importance of children leading purposeful lives through the application of attributes and skills to career goals and lifestyle preferences. Throughout the study families frequently offered insights into how to best utilize children's strengths to attain goals. One of the fathers explained how to create opportunities for his daughter during one of their transition-planning meetings:
As I see it, it's important for us to build on her strengths. Working with people and continuing with her reading are things that will be important for her down the road. We should be approaching Carol's future using these as our lead. If we can find her a job at a nursing home she'd be happy just to work where she's helping people. We want her to be doing the things she likes and that she's good at.
Promise for the future
Mastery of tasks denoted a milestone confirming a child's promise. Parents commonly featured these accomplishments at meetings as reminders of what children could do. For example, while speaking to professionals during a transition meeting, a mother offered her daughter's earlier progress as evidence of what the future will be: “Everything from learning how to ride a bike to riding the Metro bus were important accomplishments in her life. She has done so many different kinds of things and will continue to do so.” Another mother, also during a transition meeting, used her son's accomplishments to convey his potential:
You know, he taught himself to fold those boxes. And, he's worked every summer too. Like the job he had at Central High. He loved working at Central. They even had to cut his hours the second year because he was too fast delivering the mail.
Most of the parents I interviewed told me that they were well aware that children would require specialized programs and supports to achieve their goals. If their children had difficulty with certain tasks, parents attributed it more to inadequacies in the program and ineffective supports, and not to children's shortcomings. They became seriously concerned when their child was perceived as incapable or if it was suggested that they were not being realistic.
Many parents pointed out that the program options they were offered did not allow for the full use of children's potential, and they were rarely offered a chance to contribute positively. This was illustrated by one of the mothers as she described her son:
And with Ed, he's so solid and stable. You know he's always known what he wanted and he's a hard worker. With all his capabilities, I think if he had more opportunities he would have been involved in so many more things, but he's never been given the chance.
Another mother responded to my inquiry after a transition meeting, where it was alluded that it would be better for her son to work in a sheltered workshop:
When I think of Paul at the workshop I think to myself, “What a waste, what a waste.” Every time I hear about it I come home and stew to Frank [her husband]. It blows my mind to imagine that he could end up there. Nobody's doing anything there—all they do is sit around and sort screws. It's so frustrating to hear these things when I know Paul can do so much more.
Perspectives on transition
One of the more troublesome experiences related by parents was having to learn the ins and outs of an unfamiliar system. They did not know how the adult agency support system functioned and were uncertain about where they fit in. Several complained that they were treated like “foreigners” at transition meetings. One parent, a teacher herself, described how she felt inadequate at meetings attended by large groups of professionals:
I go to these meetings, and even being a teacher and knowing all the jargon, you are here and there's 13 other people on the other side of the table. Then, you think everything's going fine and all of a sudden they throw something in from left field. Like this is happening or that won't happen. And I think to myself, “How am I going to deal with this?” It's like they speak in a foreign language.
Uncertain outcomes, unfamiliar transition terms and procedures, and unexpected barriers all contributed to feelings of powerlessness. One of the mothers stated that if professionals did not follow-up on assignments or were late getting back to her, she experienced additional anxiety:
It seems I'm always on the edge of my seat waiting to hear from them. Can you believe it, no one's called me back. I keep wanting to call but then it's just so frustrating never knowing where I stand.
A few parents felt so alienated that they wondered whether transition planning had any validity at all. A mother offered her viewpoint: “It doesn't mean a thing to me. It's just something that they have to do. And whether it amounts to anything at all—It's a charade. That's all it is, a big charade!”
Professionals from schools and various adult service agencies formally planned and implemented each young adult's transition. Charged with the task of providing supports and services to young adults and their families, professional interventions were guided by regulations for school transition and adult services for young adults with disabilities. Planning and implementation strategies reflected their efforts to provide adequate transition supports from a distinctly different vantage point than the young adults or parents. Major themes representing professional perspectives are: perspectives on young adults, viable options, and coping strategies.
Perspectives on young adults
During interviews and observations of participating professionals, it was evident that they approached transition planning deductively. They evaluated young adults using both professional standards and personal experiences. Planning and placement decisions were nearly always set within a context of the effect of the person's disability. Once a context was established, they prescribed programs with practical interventions designed to improve the deficit. One of the professionals explained their rationale:
What I find is that they tend to focus on how they can't do a task because they have much more difficulty. Especially, when you have people that have a hard time functioning. It's not uncommon for people that are mentally retarded to have a life that is more limited and we have to pretty much comply with what their limitations are.
Opinions varied by individual and situation, but, for the most part, they were couched in conversations that revealed a basic skepticism for young adults with severe disabilities to reasonably achieve the transition goals. The key factors influencing the formation of these attitudes seemed to be a professional's preference for specific outcomes and the method of evaluation. For example, there were more than a few instances when either education or adult agency professionals second-guessed young adults, wondering if they had hidden motives or were playing tricks to conceal abilities. One of the teachers explained how one of the young adults could do more than she let on:
I go through the same thing every time. I just don't know if they can do it on their own or not. Like Carol. I can't tell if she's faking or if she can really do it. A few weeks ago she got the wrong cheese and I didn't interfere. She knew the kind she needed and when it was time for her to get on the bus to leave she said to me, “I got the wrong cheese.” Can she do it or not?
Once a context was established, professionals applied deductive reasoning to determine an appropriate program. Tasks were analyzed for suitability, and if a student was not able to perform a prescribed task adequately, some of the professionals questioned its viability for the student. During one of my observations, I noticed a student having trouble figuring out a restaurant tip. The teacher pulled me aside wondering, “Does it make sense for him to work on that goal? He's topped out. It makes you wonder, Is he ever going to master it anyway?” Yet on another day, I was surprised to see the same student at a vocational site looking through the sports page in a newspaper for the TV airing time of his favorite basketball team. After finding the time, he told it to a coworker. When program options were later discussed at the young adult's transition-planning meeting, professionals focused on his need to learn how to count money. No mention was made of his ability to find a TV listing.
Most transition activities focused on finding suitable supported employment, making referrals for a sheltered workshop, and determining appropriate supports for recreational activities. Generally, professionals focused their energy on placements that best suited their assessment of an adult skill level. A “fit” between presumed skill and program was repeatedly referred to as a “viable option” for the young adult. My observations indicated similar patterns for most planning meetings. Professionals first assessed skill level and offered a broad recommendation for the types of programs that would provide the best match. They then selected specific programs based on whether the student met the criteria for eligibility requirements. Finally, they sought parental and young adult approval.
Professionals offered a variety of insights into why they made their selections. Some considered it important that prerequisites be met before formulating the plan. Others stressed the importance of both young adults and parents being realistic about matching available programs with what young adults would be able to do. One adult agency professional told me that she felt it was essential for young adults to understand what they could and could not do so they would be able to make a suitable selection:
They should know that what you can't do is just as important as knowing what you can do. Some say they want to do something but don't realize what they have to do to get there. And so I say, “Let's look at this realistically.
A teaching professional was more direct: “There has to be some kind of reality about what he will ever do. It's doubtful whether he'll ever be independent. Realistically, he'll most likely end up at the sheltered workshop or in day treatment.”
After a lengthy discussion of potential options and making a selection of what they felt to be the best choice, professionals made their recommendation to the parents and the young adult. They asked whether their program recommendation was acceptable, “Is this the way you'd like us to go?” These requests often required parents and young adults to compromise their original requests. If these compromises were significantly different from the original request, and if parents were reluctant to accept them, then the task fell to parents to find a new option to explore. In one case a professional asked, “We've only got a few months before he graduates, where would you like us to go with this?” These communication patterns emphasize the dilemmas parents face when they are presented with preselected options with equally problematic outcomes (Thorin, Yovanoff, & Irvin, 1996).
Most program plans for adult agency supports required a final approval from supervisors prior to implementation. Periodically, a plan was rescinded by a supervisor who cited it for not meeting eligibility criteria or when specialized funding was unavailable. Several of the agency professionals I spoke with said that the unusual circumstances of each service plan developed during transition meetings had them feeling uneasy while they waited for a final approval. Reacting to a rejected service plan, a professional responded in frustration to an alternative that was proposed by his supervisor: “You know, we aren't really even needed. Our bosses should just get together and do the plan themselves!” Another revealed her strategy for working with parents because she was well aware that plans would often not materialize:
For a long time I tried to promise too much. I say, “Oh yes, we can do that.” I think that's something we can get trapped into a lot of the time, and I'm trying not to do that. Now, what I've learned to say is something like, “We'll see what we can do “or “We'll take a look at it.” If you promise parents too much then they think it's a done deal and it's going to happen.
Discussion and Implications
The perspectives presented here are not intended to be representative of all professionals, parents, and young adults who participate in transition because the study sample was a small group of participants who represented selective viewpoints. The findings are, however, important indicators of some of the prevailing patterns that exist during transition activities, and they aid in understanding the process and quality of relations that can exist among key participants.
Bound to Clienthood
A critical difference between what most graduating students experience and the experiences of the young adults in this study was that transition was done to them (Wehman, 1992; Wehman, Moon, Everson, Wood, & Barcus, 1988). Young adults were explicit about how they intended to become fully functioning adults, yet they fell victim to a transition process burdened with unhelpful services, were relegated to a status of clienthood, and were often denied any real chance of life-long growth.
Parents and professionals conspire (usually with benevolent intentions) to create a façade of independence for adults with severe disabilities by allowing them trivial, secondary, or coerced choices instead of self-determination. Most [young] adults with severe disabilities remain on the threshold of adulthood in a kind of liminality—suspended in social space, where they are no longer seen as children nor yet adults. Transition to adulthood is a ritual that once never began and now seldom ends. (Ferguson & Ferguson, 1993, p. 595)
The efforts of both young adults and parents seemed little more than futile attempts to influence a process that expected them to comply with policy procedures. What they wanted was not out of the ordinary: honest work, the freedom to spend time with friends and family, and personal living space. What they encountered were policy guidelines that restricted necessary services. What they were offered were manufactured programs unsuited to their individual needs. Below, I review some of the factors that influenced transition outcomes for participating young adults and examine why fundamental requirements went unrecognized.
Paradox of Parent and Professional Perspectives
Although both the parents and professionals in this study worked for the betterment of the young adults, there were marked differences in their perspectives and their approaches. Parents discussed a future for their child that included fulfillment and security. Professionals approached transition through programming needs, available resources, and viable options. Whereas parents presented children in terms of strengths and potentials, professionals chose to examine areas of discrepancy and relied on professional and personal experience to assess limitations and match needs to situations. Parents sought adult status for children based on social attributes, while professionals represented clinical perspectives and promoted preexisting organizational structures (Gallivan-Fenlon, 1994). Yet, these differences were not acknowledged by either party.
Get them placed! Most often, programs were offered without a careful consideration to the context in which perspectives were shaped. Professionals often made inaccurate or oversimplified assumptions about young adults. Rather than evaluating their activities in light of a broader social system, specific and immediate behaviors were used to classify and place them. Professional assessments wavered and largely depended on an interplay of the context and implied purpose (Furney, Hasazi, & Destefano, 1997; Mest, 1988). When young adults' behaviors were inconsistent with professional expectations, this only confirmed their need for a specific type of programming. One can conclude that such practices tell us more about the professionals themselves than about how to best meet the needs of young adults with severe disabilities (Kett, 1977; Skrtic, 1995).
There were many indications that professionals do have a sincere interest in seeing families and young adults transition successfully to adulthood. However, the complexity of modern delivery systems, ever-increasing demands on their time, and the limitations of available resources all hindered their capacity to efficiently support them. As one professional said, “Today, the task is made much more difficult when you consider all the changes we've had to deal with.”
Who's in charge? Even though many parents were explict about their concerns and requirements, many found the process daunting. The adult agency system was difficult to negotiate and very different from their previous school experiences. Several said that they were uneasy with the distribution of power and the implied message that they were expected to hand over control of their children to “outsider” professionals. In general, parents were overwhelmed as they weighed aspirations for children against concerns for their overall quality of life (Giangreco, Cloninger, Mueller, Yuan, & Ashworth, 1991; Vohs, 1993). The inability to secure the essential supports required to maintain an effective quality of life was very troubling for many. When professionals do not recognize the social and cultural supports that parents require, a parent's ability to cope is seriously undermined (Ferguson et al., 1988; Ferguson & Ferguson, 1993).
Insights from the study indicate a critical need for a transformation in the relationships among young adults, parents, and professionals during transition. Evidence shows they were not communicating effectively. Breakdown in communication may be due, in part, to the differences in family and professional orientation. Meetings were managed by professionals, guided by policy directives, and reflected a professional culture. Formal participation by young adults was inconsistent. Although invited to contribute, this rarely went beyond verification of program suggestions. Although professionals made efforts to accommodate parental requests, parents were either looked to for answers they did not have or their input was disregarded.
Rather than continue with a transition-planning process fundamentally managed by professionals, I suggest changing it to a more collaborative process, where professionals are active partners with parents and young adults (Ferguson & Ferguson, 1987). Envisioned as balanced partnerships, these relationships are characterized by an atmosphere of mutual respect, where key participants meet both on a personal level of openness and honesty and a professional level of sharing skills and information (Davern, 1994; Lightfoot, 1978; Mittler, Cheseldine, & McConachie, 1983).
Having the opportunity to make primary choices for adult life will be essential for young adults to lead purposeful lives where effecting one's life direction is the most critical component (Pain, Dunn, Anderson, Darrah, & Kratochvil, 1998; “Self-Advocates,” 1997). There is a causal link between positive adult outcomes and self-determination (Schloss, Alper, & Jayne, 1993), yet evidence from this study indicated that practices supporting student choice were not integrated into the transition process. A greater propensity for well-being will ensue if genuine opportunities exist for young adults to manage the external forces that determine what will happen in their eventual adulthood. Life choices made under these conditions are much more likely to be longer lasting and more satisfying (Abery, 1994; Wehmeyer & Metzler, 1995; Wehmeyer & Schwartz, 1997).
Author:Bernard F. Cooney, PhD, Assistant Professor and Coordinator of Graduate Special Education, St. John Fisher College, Rochester, NY 14618 (firstname.lastname@example.org)