Abstract
Occupational therapy practitioners are optimally positioned to remediate transition issues and must assert their role in transition planning for youth with IDD.
The Individuals With Disabilities Education Improvement Act of 2004 (Pub. L. 108-446) mandates that transition planning occur for all students in the public school system who have an individualized education program (IEP). This process is required to begin before the student turns 16; however, some states dictate that the transition plan be part of the IEP no later than age 14 (Commonwealth of Pennsylvania, 2020). This transition plan should be individualized and focused on the student's interests and strengths and include opportunities for the student to explore postsecondary education and work options as well as community life (Eismann et al., 2017; Learning Disabilities Association of America, 2019). Although federal mandates have resulted in increased communication between home and school, a substantial discrepancy still exists between federal regulations and the application of those regulations in the education realm (Foley et al., 2012; Hetherington et al., 2010).
Adolescents with intellectual and developmental disabilities (IDD) are typically diagnosed before age 18 yr, have an IQ below 70, and have “significant limitations both in intellectual functioning (reasoning, learning, problem solving) and in adaptive behavior, which covers a range of everyday social and practical skills” (American Association on Intellectual and Developmental Disabilities, n.d., p. 1). Intellectual disability is a type of developmental disability that often co-occurs with other developmental disabilities, such as Down syndrome, cerebral palsy, or autism spectrum disorder. These disabilities are often collectively referred to as IDD. For the purposes of this article, the study population is referred to as “adolescents with IDD” because the majority of participants had a child with a diagnosed intellectual disability, developmental disability, or both.
Compared with their typically developing peers, adolescents with IDD experience unique challenges during their transition to adulthood, including difficulty managing interpersonal, physical, and educational changes; an extended duration of the transition process; and increased stress (Biggs & Carter, 2016; Foley et al., 2012; Hetherington et al., 2010). Prior research has identified predictors of a successful transition (Simonsen & Neubert, 2012; Test et al., 2015; Wehman et al., 2015), including school, adolescent, and family characteristics. Family characteristics—specifically, parental involvement in the transition process—have been identified as a strong predictor of successful transition (Foley et al., 2012; Neece et al., 2009; Underwood, 2010; Wagner et al., 2012).
Additional research has examined how the family of an adolescent with IDD defines a successful transition and how the success of that transition affects the overall well-being of the family as a unit (Henninger & Taylor, 2014; Neece et al., 2009). Research indicates that many parents are dissatisfied with the transition process and has described barriers to transition as identified by parents (Francis et al., 2018; Hetherington et al., 2010). Parents’ main sources of dissatisfaction include “inadequate communication from school staff, frustration with assumptions made about the student, funneling of the student into traditional adult service programs, and a lack of accountability from the schools” (Hetherington et al., 2010, p. 163). Dissatisfaction also lies in the lack of direct engagement of students in the transition planning process (Hetherington et al., 2010).
It is best practice for all members of the transition team to support transitioning adolescents with IDD in building self-determination skills (Foley et al., 2012). Self-determination is the “ability to take primary control of one’s own life and to do so in personally meaningful ways” (Pierson et al., 2008, p. 115), and it has been cited as one of the most essential elements of a successful transition. Self-determination is not simply making choices for oneself; rather, it making choices to the extent to which one desires (Wehmeyer & Abery, 2013). Although self-determination is key to a successful transition for adolescents with IDD, there is a lack of instruction in this area for these students, which often results from an assumption that they are incapable of being self-determined (Foley et al., 2012; Nota et al., 2007; Wehmeyer & Abery, 2013). Even when students are engaged in the process, they experience inadequate transition planning. For example, several participants in a study by Hetherington et al. (2010) reported being present at their IEP meetings but not fully engaged by professionals in the process. According to Grigal et al. (2003), “being present for the meeting does not mean that the student is involved in any meaningful way” (p. 107), indicating that some teams may not be engaging students with IDD in discussion of their own IEP. Students have also reported that the transition services received are not always related to their IEP goals (Hetherington et al., 2010). Areas of unmet student and family need during transition include engagement of the student and family in the transition process; goal setting based on others’ (not the student’s) interests; and securing full participation in employment, postsecondary education, and independent living opportunities (Henninger & Taylor, 2014). Parents have also reported being confused about what services are available during and after the transition because of the aforementioned lack of communication from the schools (Foley et al., 2012).
Occupational therapy practitioners can be critical members of the transition planning team. They can complete individualized, person-centered assessment with adolescents with IDD to help them identify their strengths, needs, and postsecondary goals and support them in building self-advocacy and self-determination skills (Angell et al., 2019; Dean et al., 2015). Eismann et al. (2017) found, however, that only 7.5% of IEP-eligible students with disabilities receive occupational therapy during their transition to adulthood. This area of practice is one of potential growth and advocacy for the profession.
Not enough is known about parent perspectives on the transition process and whether the aforementioned barriers to successful transition have yet been resolved. In addition, literature on transition planning for adolescents with IDD is underrepresented (Foley et al., 2012; Henninger & Taylor, 2014; Hetherington et al., 2010). If occupational therapy practitioners can understand the barriers to a successful transition from the perspectives of parents of adolescents with IDD, they can better advocate for these students and tailor their interventions accordingly. Therefore, the primary aim of this study was to address this gap in the literature by exploring the lived experience of parents of adolescents with IDD participating in the transition process.
Method
We used a phenomenological approach and semistructured interviews to obtain information on the experiences of parents going through the transition process with their adolescent children with a diagnosis of IDD. Under the supervision of the first author (Benson), the second and fourth authors (Tokarski and Geubtner) completed the interviews. They recorded interviews and used field notes to document any relevant information outside of the interview. The semistructured format, which incorporated an interview guide, allowed flexibility while ensuring consistency of topics covered. The interview guide appears in the Appendix. Permission to conduct this study was approved by the Duquesne University institutional review board (IRB) after a full review.
Participants
Purposive sampling—specifically, snowball sampling—was used to recruit participants. Inclusion criteria were as follows: Participants must be the parents or guardian of an adolescent or young adult with IDD, and the adolescent must have an IEP and be between the ages of 14 and 22 yr. Potential participants were contacted using an IRB-approved flyer that was emailed to public and private schools for distribution or physically handed out at IDD events (e.g., conferences). All participants were asked to pass along the researchers’ information to anyone who might also be interested in participating. Informed consent was obtained from all participants. A total of 11 parents of adolescents with IDD participated. All participants were female; the children included 8 girls and 3 boys ranging in age from 16 to 21 yr (Table 1). Three participants reported having a career involving work with people with IDD, such as an IEP facilitator or social worker.
Demographic Characteristics of Participants’ Children
Note. CHARGE = Coloboma of the eye, Heart defects, Atresia of the choanae, Retardation of growth and development, and Ear abnormalities and deafness.
Procedure and Data Analysis
Three interviews took place face-to-face at the participants’ home, and eight took place over the telephone. The second author (Tokarski) completed eight of the interviews, and the fourth author (Geubtner) completed three of the interviews. Interviews lasted between 10 and 35 min. All interviews were recorded and transcribed verbatim. Data analysis used the constant-comparative method, which begins with a line-by-line reading of the text (Glaser & Strauss, 1967). Each unit of text was identified as a data point, and data points were organized into a codebook. Open coding was completed separately by two researchers. Then, the two researchers met to complete axial coding (Glaser & Strauss, 1967). The researchers manually assigned codes to texts in preparation for using NVivo software (Version 12; QSR International, Melbourne, Victoria, Australia). The researchers then searched for trends in the codes across the interviews and began to group the codes, taking notes in the code book to identify the rules for inclusion and proposed names for categories and themes. Using an iterative process, data and codes were revisited a second or third time by the first author (Benson) and second author before finalizing codes and themes to ensure consistency across all data (Glaser & Strauss, 1967). Wherever possible, in vivo codes and themes were used to most closely reflect the data and thoughts of the study’s participants.
Trustworthiness
The second and fourth authors completed the interviews because they had no prior experience with the transition process and therefore few assumptions or bias. Open discussions occurred between the interviewer and first author throughout the data collection process to reflect on the researchers’ experiences and beliefs (Patton, 2002). To ensure the views of participants were fully explored, data analysis began after the completion of the first two interviews and continued throughout. As data analysis progressed, researcher review of emergent themes was used to ensure authenticity. Sampling ended when saturation was reached, although interviews that had already been scheduled were completed (Patton, 2002).
Member checking was completed by providing participants with the transcribed interviews for comment (Patton, 2002). Nine of 11 participants responded to the transcript review and confirmed accuracy. Two participants did not respond to this request. At the conclusion of data analysis, participants were provided with the themes, including a summary that encompassed the essence of each theme. Participants were then provided the opportunity to comment on the results. All of the participants who responded (82%) confirmed the outcomes and added no new information.
Results
Seven final themes emerged from the data. In vivo themes are presented in quotation marks: (a) Finding the Right Fit: the match between client and context; (b) Falling Short: parents’ desire for more from the team; (c) No Progress Without Parents: Parents as the (sometimes reluctant) driving force; (d) “Walking the Path Alone”: Understanding the parent and student perspectives; (e) “A Different World”: building a bridge among client, family, and community; (f) Going Above and Beyond: the relationship between family and professionals; and (g) Steps of the Transition Process. Table 2 presents a brief description of each theme.
Description of Themes
Finding the Right Fit: The Match Between Client and Context
The Finding the Right Fit theme emerged from each of the participants’ discussion of the ways in which the school and its staff were striving to make the transition process match the desires and characteristics of the student, or the ways in which they were failing to do so. Finding the right or appropriate fit for the student included taking into consideration their developmental characteristics and asking them and their family about their preferences regarding vocational alternatives, living situations, and other necessary daily life skills after high school. Participants reported that adolescents tried different vocations presented by the school to see “what fit” for the adolescent (Participant 1); however, some participants reported that the schools were not attempting to find the right fit. Participant 3 described this as being “funneled,” stating that the school “just [said], ‘here are your choices.’” In other words, the school gave the family a limited range of postsecondary options based on their perceptions of the student’s abilities, a menu of preexisting available programs, or both. This theme of Finding the Right Fit describes the two opposing approaches used by schools: (1) finding the appropriate postsecondary fit for the adolescent and (2) funneling the adolescent and failing to treat them as an individual.
Falling Short: Parents’ Desire for More From the Team
All of the participants discussed at least one way in which they felt the team could be doing better for their child. The main concerns that parents expressed were lack of guidance throughout the transition process and disempowerment of the parent and the adolescent. Participant 6 stated, “I mean, they’re the experts. . . .” In addition, parents felt unsupported throughout the process and believed that information was not being provided as frequently as it should have been. Participant 8 shared her emotions regarding the lack of guidance from the school: “So it’s kind of scary with this transition because nothing is . . . written out, you know? There’s just, like, suggestions here and there.” Participants also revealed that schools were not providing them with many resources to help them through the transition process, with Participant 7 stating, “I don’t feel like any school that I have ever been a part of felt like it was their job to provide information.” The three parents who had worked in a related field (2 IEP facilitators and 1 social worker) expressed that their prior experience afforded them a deeper knowledge of what to expect from the transition process. Parents who did not have this additional knowledge were left feeling that, as Participant 2 shared, “[I’m] not entirely sure what comes next.” Parents also felt that service providers who worked for the local Office of Vocational Rehabilitation and other nonprofit provider agencies provided only limited support. Parents felt they must take it upon themselves to understand the transition process and their child’s options, regardless of whether they preferred to do so.
No Progress Without Parents: Parents as the (Sometimes Reluctant) Driving Force
Parents exuded passion when discussing this theme. Most of the participants saw themselves as the main driving force behind achieving milestones and facilitating success during the transition process. They went so far as to describe the transition process as their job. Participant 7 said, “At the end of the day, it’s my job to find them [jobs].” Participant 8 shared that “I have to do it on my own.” Parents saw themselves as the experts on their children; as Participant 10 stated, “We know our kid the best.” Some of the parents discussed informal networks created to pool their knowledge of available resources. When asked about resources that the school had shared with her family, Participant 10 instead credited her parent network with providing her with resources:
We have a network of parents through Special Olympics that, you know, these parents all talk, and “Your kid’s coming up the ranks, and my kid’s . . . a seventh grader, you know, what should I be kind of looking at and thinking about?” And people kind of compare programs, just kind of informally.
Participant 9 shared that “[we] love him more than anybody else and we have the most skin in the game.”
“Walking the Path Alone”: Understanding the Parent and Student Perspectives
This in vivo theme incorporates the words of Participant 3: “I feel like as much as the school gives you options, you kind of feel like you’re walking on the path alone.” This feeling was echoed by most of the parents during their interviews. Parents shared the feeling that they were the only ones responsible for and invested in the success of their child’s transition. As discussed in the Falling Short theme, all the parents reported a significant lack of support and guidance from staff during the transition process. This left them experiencing self-doubt regarding the weight of each decision and fearing missed opportunities. Participant 3 conveyed her self-doubt by saying, “You don't get much help, you feel like you’re just strung out there and you wonder if you are doing the right thing.” Parents were unsure whether these efforts were enough to give their children the best opportunities possible. Part of the difficulty with finding support is that “[the system] is so twisted” (Participant 11).
“A Different World”: Building a Bridge Among Client, Family, and Community
There are few adult services for people with IDD, and the services that do exist can be hard to access because of limited resources and availability and, in some states, long waiting lists (Carter et al., 2012; Certo et al., 2008; Franklin et al., 2019). Families go from having a variety of services to support their child while in school to having few to none in the postsecondary milieu. Participant 8 described this drastic change from the school environment to posttransition as “a different world.” When professionals share community resources, this builds a bridge for the family that eases the adolescent’s transition to adulthood. Schools’ performance in providing community resources varied, but a large majority of the parents indicated that this was a priority for them during transition planning. An issue in finding options for adolescents with IDD after secondary education is the availability and accessibility of community options, specifically for work. In her interview, Participant 7 said, “They talk about transitioning. If there’s nothing to transition to, you know, it doesn’t really matter.” When limited options exist for students after high school, school personnel are challenged to find postsecondary opportunities for adolescents with IDD.
Going Above and Beyond: The Relationship Between Family and Professionals
All but 1 parent described the positive aspects of their relationship with the transition team as well as the relationship between team members and their children. Parents were highly appreciative when the team made the transition planning process more person centered. Participant 2 described how the school kept the family involved in transition planning, explaining that “family input is required and requested.” Participant 6 also described how important it was to the family that the staff have high expectations of her child: “They push her to be at her best.” This participant described the importance of staff in making the transition process successful.
Steps of the Transition Process
All of the parents interviewed discussed the phases of the transition process. One phase they discussed frequently was the opportunity for students to experience different community placements to explore potential jobs. Some parents mentioned a lack of clarity on what was supposed to be happening during this phase. Participant 6 revealed that she had not “been told much about what happens for [her daughter] next year.” Participant 8 described her confusion about what was supposed to happen after her son turned 18. Overall, parents discussed being unclear about what the transition process was supposed to look like, especially regarding education and job placement. This lack of clarity indicates that, for some families, exploration was occurring, but well-executed implementation was not.
Overall Reflections on the Transition Process
At the end of each interview the parent was asked, “How would you rate your overall satisfaction with your child’s school’s transition planning process?” Eight of 11 (73%) reported that they were satisfied with the transition process. Two of 11 (18%) reported dissatisfaction. One participant reported feeling neutral. However, 3 of the 8 participants who were satisfied included stipulations to their level of satisfaction, with Participant 10 saying, “You might have asked me at a time when I would have been like, ‘What? Are you kidding me? This is nuts!’”
Discussion
Stewart et al. (2001) described transitioning from school-based to adult services as being like coming to the edge of a cliff. Parents in this study described feeling isolated, unsupported, and as though they were venturing into the unknown. According to Neece et al. (2009), parents of adolescents with IDD often feel that the systems that were put into place to provide transition services to their children are actually doing the opposite and instead making the procurement of appropriate services and supports more difficult. Some participants felt satisfied with their child’s transition outcome but were not satisfied with the support received during the process. This finding is notable in that Neece et al. found that satisfaction with the outcome of the transition planning process was linked to overall family well-being. By understanding the facilitators of and barriers to a student’s successful transition, occupational therapy practitioners and school personnel can work together to ensure that adolescents with IDD are adequately supported in the transition to postsecondary work, higher education, community and social activities, and living opportunities of their choice.
The findings from this study are consistent with those previously reported in the literature in several important ways. Past studies have identified that adolescents and their parents must advocate for themselves to receive appropriate services (Henninger & Taylor, 2014), consistent with the No Progress Without Parents theme. The participants in Hetherington et al.’s (2010) study used language similar to that of our participants regarding advocating for their children, describing it as a “battle” or a “fight with the school” (p. 167). This is consistent with our theme of Walking the Path Alone. Moreover, the barriers that parents identified in this study are consistent with the barriers identified by Francis et al. (2018) and Hetherington et al., indicating that there has not been a notable change in transition planning in the past decade, despite evidence that it is not satisfying for adolescents and their families.
None of the participants mentioned occupational therapy as a part of their child’s transition process. There currently is a lack of involvement from occupational therapy practitioners in the transition planning process, with occupational therapy providing less than 20% of all transition services to adolescents with IDD (Michaels & Orentlicher, 2004; Spencer et al., 2003). Eismann et al. (2017) verified these findings when they examined national data from IEP-eligible students with disabilities and discovered that only 7.5% received occupational therapy services during their transition process. Occupational therapy practitioners, however, use a holistic, person-centered approach that can be supportive of adolescents with IDD and their families. To develop a transition plan that best supports adolescents with IDD to meet their postsecondary outcomes, we recommend that occupational therapy practitioners and school personnel use a self-directed IEP process that draws on the student’s perspective (Seong et al., 2015). Occupational therapy practitioners can use a variety of person-centered planning and self-determination assessments to support adolescents with IDD in being more self-determined and setting and monitoring individualized transition goals. They can support adolescents with IDD to actively participate in their IEP meetings by helping them prepare ahead of time an agenda that highlights their strengths and preferences. Finally, occupational therapy practitioners can play a vital role in educating and linking adolescents with IDD and their families with inclusive postsecondary education programs, community and social participation opportunities, supported and customized employment services, and unique funding streams through one of Medicaid’s Home & Community-Based Services waivers (https://www.medicaid.gov/medicaid/home-community-based-services/index.html).
Limitations and Implications for Future Research
This study has some limitations, the chief one being that, because of the participants’ lack of geographic, socioeconomic, and educational diversity, the data may not be reflective of the general U.S. population. Future research should include the perspective of people with IDD; additional interview questions on the societal implications of the transition process; and individual and family long-term, rather than immediate, goals for the transition process.
Implications for Occupational Therapy Practice
Occupational therapy practitioners should advocate for continued involvement with students with IDD into middle and high school to support a client- and family-centered transition in the following ways:
Being an active member of the transition team
Conducting person-centered and self-determination assessments and planning to support clients in setting and monitoring individualized transition goals
Supporting adolescents in identifying meaningful social, community, and work occupations and programs that will sustain them into adulthood
Developing programming to support adolescents’ social and community participation, employment, and independent living before and during their transition
Conclusions
Our results indicate that parents identify person-centered planning, guidance from school staff, and resource sharing through organized delivery of information as the most sought-after practices in the transition process. Adolescents with IDD have corroborated and identified person-centeredness and relationships as the most important parts of their transition process (Hetherington et al., 2010; Michaels & Orentlicher, 2004). Occupational therapy practitioners are optimally positioned to contribute to the transition process to increase self-determination and quality of life for adolescents with IDD.
Footnotes
Acknowledgments
This study was funded by the Charles Leach II Foundation. Rachel Tokarski was supported by an award from the Duquesne University chapter of Women in STEM. Portions of these findings were presented in the 2020 American Occupational Therapy Association Virtual Conference Series. We thank the participants of this study for sharing their experiences. We have no conflicts to disclose.