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Transition to adulthood of youth with disabilities: Mapping declared practices to recommended practices

Élody Ross-Lévesque

Élody Ross-Lévesque

Centre for Interdisciplinary Research in Rehabilitation and Social Integration (Cirris), Québec, Quebec, Canada

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Sarah Martin-Roy

Sarah Martin-Roy

Centre for Interdisciplinary Research in Rehabilitation and Social Integration (Cirris), Québec, Quebec, Canada

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Francine Julien-Gauthier

Francine Julien-Gauthier

Centre for Interdisciplinary Research in Rehabilitation and Social Integration (Cirris), Québec, Quebec, Canada

Faculty of education, Université Laval, Québec, Quebec, Canada

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Steve Jacob

Steve Jacob

Department of Political Science, Faculty of Social Sciences, Université Laval, Québec, Quebec, Canada

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Marie Grandisson

Marie Grandisson

Centre for Interdisciplinary Research in Rehabilitation and Social Integration (Cirris), Québec, Quebec, Canada

School of Rehabilitation Sciences, Faculty of Medicine, Université Laval, Québec, Quebec, Canada

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Marie-Catherine St-Pierre

Marie-Catherine St-Pierre

Centre for Interdisciplinary Research in Rehabilitation and Social Integration (Cirris), Québec, Quebec, Canada

School of Rehabilitation Sciences, Faculty of Medicine, Université Laval, Québec, Quebec, Canada

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Noémie Dahan-Oliel

Noémie Dahan-Oliel

Faculty of Medicine and Health Sciences, Shriners Hospitals for Children, McGill University, Montreal, Quebec, Canada

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Marie-Ève Lamontagne

Marie-Ève Lamontagne

Centre for Interdisciplinary Research in Rehabilitation and Social Integration (Cirris), Québec, Quebec, Canada

School of Rehabilitation Sciences, Faculty of Medicine, Université Laval, Québec, Quebec, Canada

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Chantal Desmarais

Corresponding Author

Chantal Desmarais

Centre for Interdisciplinary Research in Rehabilitation and Social Integration (Cirris), Québec, Quebec, Canada

School of Rehabilitation Sciences, Faculty of Medicine, Université Laval, Québec, Quebec, Canada

Correspondence

Chantal Desmarais, School of Rehabilitation Sciences, Faculty of Medicine, Université Laval 1050, ave. de la Médecine, Québec QC, G1V 0A6, Canada.

Email: [email protected]

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First published: 22 February 2024

Abstract

Positive transition to adulthood of youth with disabilities is influenced by the type of support they receive. This study aims to analyse current transition to adulthood practices in the province of Quebec to map them to recommended practices and present an overview of the situation and needs. A multiple case study methodology included focus groups in six schools with 65 participants as well as internet searches and interviews with experts. A thematic analysis within and across cases was used. Results underscore the best practices in place concerning student-focused planning, student development, interagency collaboration and family engagement. They also highlight youths' and parents' opinions about strategies to better support transition. While inspiring practices are present, further efforts with regards to programme structures are required to ensure adequate support for transition to adulthood.

Key points

  • Transition to adulthood is a challenge for all adolescents but it is even greater for youth with disabilities.
  • Evidence-based practices offering a co-ordinated support are needed to facilitate transition to adulthood for youth with disabilities.
  • Absence of a structured programme of transition to adulthood practices to support youth with disabilities compromised their quality.

INTRODUCTION

For all youth, the transition from adolescence to adulthood is marked by rapid physical, emotional and cognitive growth. During this period, adolescents go through rapid changes, while also planning for independence, and developing their own vision of life as adults (Carter et al., 2018; Mazzotti & Plotner, 2016; Murray et al., 2021). In taking steps towards this transition, most youth rely on the support of their network including family, friends, school and the community (Hetherington et al., 2010; Petner-Arrey et al., 2016).

For adolescents with disabilities, the challenge of transition to adulthood is compounded by impairments in areas such as mobility, communication or learning (Bryan et al., 2007; Osgood et al., 2005). Additional support is therefore warranted to optimize this transition. In this study, the term disability refers to difficulties to execute a task or an action, limitation in activities and restriction in participation which may be present in individuals with diagnoses such as autism spectrum disorder, cerebral palsy, intellectual disabilities or language disorders (Maxey & Beckert, 2017; World Health Organization, 2007). To take the specificity of youth with disabilities into account, many countries have implemented tailored programmes to support their transition to adulthood (Carter et al., 2018; Crompton & Bond, 2022; Mazzotti & Plotner, 2016; Test et al., 2009). The term transition to adulthood used in this article thus refers to the purposeful and planned support of the trajectory to adulthood for youth with special needs. The goal of practices of transition to adulthood is to help these youth to reach their full potential in developing their autonomy in the areas such as post-secondary education, employment, independent living, leisure and/or transportation (Goupil et al., 2002; Test et al., 2009).

The literature on recommended transition to adulthood practices suggests that they should consider individualized planning and co-ordination of services by a team including the youth, their family, different professionals and community organizations (NTACT, 2022). Based on available research, Kohler et al. (2016) proposed a framework for integrating the numerous components of an optimal transition to adulthood for youth with special needs: the Taxonomy for transition programming 2.0. This taxonomy integrates, into five primary categories, practices that have been shown to be effective to support youth with disabilities to endorse adult roles. The first practice category is student-focused planning and refers to interventions that encourage students' participation in the development of their individual education plan (IEP). The second, student development, focuses on the youth attaining employment and life skills through learning experiences. The third, interagency collaboration, underscores the development of strategies to deliver services collaboratively, across stakeholders, to facilitate the involvement of schools, community businesses, organizations and agencies in all aspects of transition-focused education. The fourth, family engagement, states the crucial role of family involvement and its contribution in self-determination of the youth in the transition to adulthood process. The fifth, programme structures, relates to allocation of resources, school structures and policies to provide efficient and effective delivery of transition-focused education and services (Kohler et al., 2016; Test et al., 2009). It is necessary to support evaluation of transition to adulthood practices. This taxonomy of transition to adulthood practices (Kohler et al., 2016) was proposed for youth with disabilities who attend high schools in the United States and is based on research mostly carried out in that country. It was also deemed transferable to other settings and used for research in other countries (Beamish et al., 2012). It was thus selected to examine practices in Quebec, Canada in the current study.

The study was conducted in the province of Quebec (Canada) where youth with special educational needs can be schooled until 21 years of age. Over the past 20 years, high schools have developed interventions to support youth with disabilities in the transition to adulthood. However, there is no mandated structured programme that ensures the implementation of evidence-informed practices to support transition to adulthood (Ministère de l'Éducation et de l'Enseignement supérieur, 2018). This was underscored in a provincial general auditor's evaluation in 2020 (Vérificateur général du Québec, 2020). As there is no structured programme, schools lack guidance and each school implements the transition to adulthood practices deemed most appropriate to its context (Jacob et al., 2022). Local adaptation is expected even when a structured programme is in effect. However, in the absence of a structured programme it is likely that there are great disparities in the nature of the transition to adulthood support depending on where a youth with disability lives in the province. In addition to the variability of practices between schools, it is also possible that there is a gap between recommended practices, such as those found in the taxonomy for transition programming (Kohler et al., 2016), and practices in place in the field. This gap between recommended practices and declared practices is frequently reported in areas of intervention that require interdisciplinary and intersectoral resources and collaboration to address complex social problems (Gauthier-Boudreault et al., 2021; Goupil et al., 2002; Jacob et al., 2022). Given its complex nature, this problem must be addressed from a variety of angles (Rittel & Webber, 1973; Schiefloe, 2021).

This project began at the same time as the publication of a recent government guide outlining generally effective practices to support youth with disabilities in their transition to adulthood (Ministère de l'Éducation et de l'Enseignement supérieur, 2018). This guide aligns with some of the recommendations of the taxonomy for transition programming and focuses on individualized planning based on student's needs and collaboration with all partners including parents. Indeed, parental expectations and involvement are well-known predictors of improved postschool outcomes for youth with disabilities (Pleet-Odle et al., 2016; Test et al., 2009). The guide also highlights the need for a structured programme to ensure equity and efficiency of practices in the province. But, in addition to the gaps observed between schools and between recommended and declared practices in the context of a complex problem, little is known about what practices are being implemented and how they meet youth's and parents' needs.

Approaching support of transition to adulthood of youth with disabilities as a complex social problem, the aim of this study is to analyse current transition to adulthood practices in the province of Quebec to map them to recommended practices and present an overview of the situation and needs. The specific objectives are thus to (1) describe transition to adulthood practices in place, (2) identify parents and youth's needs in terms of transition to adulthood and (3) identify the facilitators and barriers to a successful transition from school to adulthood and the strategies to support it.

METHODS

This research used an explanatory multiple case study methodology to describe the transition to adulthood practices currently in place and to analyse whether the characteristics of the declared practices of transition to adulthood correspond to recommended practices. Collecting data over time from multiples sources and in different sites ensured a full illustration of current transition to adulthood practices. It then allowed interpretation of the data to highlight declared practices that are most closely aligned with recommended practices (Creswell, 2014; Yin, 2018). Focus groups were also used to highlight parents and youth's needs and identify facilitators, barriers and strategies to a successful transition to adulthood. Reporting of the methods and results follows the COnsolidated criteria for REporting Qualitative research (COREQ): A 32-item checklist for interviews and focus groups (Tong et al., 2007).

Context of the study

This study was led by the corresponding author and data collection using interviews and focus groups was co-ordinated by the second author. The Internet searches were conducted and analysed by research assistants under the supervision of the corresponding author and second author. The first author regrouped the analyses from the different sources case by case to carry out the within-case and cross-case analyses.

Cases

This study is part of a larger research project on transition to adulthood in Quebec (Desmarais et al., 2020). Prior to the present study, an analysis of governance of transition to adulthood practices was conducted (Jacob et al., 2022). Of ten schools that self-declared practices judged to be promising, six were recruited and participated in the study. It should be noted that the study took place during the Covid-19 pandemic and that four of the schools that had initially been invited declined for logistical reasons. Schools are located in different regions in the province of Quebec to represent urban and rural areas. Table 1 presents the key elements of the six cases.

TABLE 1. Key elements of each case.
Case number Characteristics Documents Participants in the interview Participants in focus group
S1 Urban setting, small sizea Planning document of TAb, advice for parents, evaluation of abilities One TA co-ordinator and one school director 6 school members, 2 health professionals, 1 parent, 2 students
S2 Rural setting, medium size Planning document of TA Development agent 7 school member, 1 health professionals, 1 parent, 1 student
S3 Rural setting, large size Planning document of TA, consent form, resources inventory, advice for parents, evaluation of abilities One school director and one co-ordinator from health care services 5 school members, 5 health professionals, 1 adult education specialist, 1 parent
S4 Urban setting, small size Planning document of TA, consent form, resources inventory, questionnaires, calendar of actions for TA One teacher and one educational counsellor 5 school members, 2 health professionals, 1 adult education specialist, 2 parents, 2 students
S5 Urban setting, small size Planning document of TA, consent form, resources inventory, advice for parents, questionnaires, calendar of actions for TA Teacher 9 school members, 2 health professionals
S6 Urban setting, small size Planning document of TA, consent form, resources inventory, advice for parents, questionnaires, calendar of actions for TA Development agent 3 school members, 1 health professionals, 1 adult education specialist, 2 parents, 2 students
  • a Small size: ≤400 students; medium size: 401–800 students; large size: 801+ students.
  • b Transition to adulthood.

Data collection and recruitment

Data were gathered via three sources: internet searches, key informant interviews and focus groups. All data collection took place between 2018 and 2020. Documents collected and participants in interviews and focus groups are presented in Table 1.

Internet searches

During the 2018–2019 school year, the websites of the six schools included in this study were scanned. The aim was to provide an overview of the transition to adulthood process and programmes that are accessible to the public on the Internet. The contents of the websites pages or hosted documents were extracted in a folder. Snowball sampling was then employed, meaning that we followed links among documents to maximize the information. Additional documents were analysed following recommendations of participants in the interviews and focus group. The 35 documents identified include planning documents for transition to adulthood used in schools, consent forms, resources inventories, advice for parents, questionnaires, calendars of actions for transition to adulthood and evaluation of student abilities.

Interviews

Phone interviews were conducted in the winter 2019 with one or two key informants involved in transition to adulthood practices in each case (e.g., teachers or education professionals, development agent members, transition to adulthood co-ordinators and members of school's direction), for a total of nine informants in six interviews. Informants were identified based on their occupation and responsibility in developing and implementing the transition to adulthood process. They were recruited by email that provided a brief explanation of the study. The interview guide was developed by the second author and revised by the research team. The guide addresses the following themes: actual practices in place, needs met by transition to adulthood practices, collaborators involved, facilitators and barriers of these practices and suggestions for improvement. Prior to the interview, the participants received a translated version of the effective practices presented in the taxonomy for transition programming (Kohler et al., 2016) that was also used to guide the interview. The respondents gave information on each component. The interviews were audio recorded and lasted 23 min on average, ranging from 19 to 28 min.

Focus groups

Focus groups were designed to better understand current practices in Quebec as well as the needs of youth, parents and personnel. They took place in each of the six cases during the 2019–2020 school year. Each group included 7–12 participants for a total of 65. Participants were recruited based on recommendations from the key informants of each case. All focus groups included youth, parents, and school personnel. Of the 9 key informants, 8 participated in the focus groups. In the six cases, the school principal also invited partners who frequently participated in intervention plan meetings, for example, social worker from the local health unit, vocational rehabilitation counsellor from the local adapted employment agency or teacher from the adult education programme. The 2-h-long focus groups were conducted in French and moderated by a member of the research team who used a semi-structured interview protocol aligned with the objectives of the study, yet also allowing the addition of spontaneous questions to clarify and expand comprehension. The interview guide was developed by the second author and revised by the research team. The themes covered were current practices of transition to adulthood, participants' perception of these practices, adequacy of practices in place in relation to needs, facilitators and barriers of a successful transition to adulthood and suggestions for improvement. A second team member audio recorded the meetings and took notes.

Analysis

The analysis began by a within-case analysis of each school followed by a cross-case analysis.

Within-case analysis

For Objective 1, deductive content analysis from all sources was used to map declared practices to the recommended practices in the component of the taxonomy for transition programming (i.e., student-focused planning, student development, interagency collaboration, family engagement, and programme structure). The three sources of each case were analysed separately. For internet searches, data were extracted from the 35 documents and analysed by a single researcher, that is, the second author. For interviews, data were analysed from the transcriptions. The second author and a research assistant compiled the participants responses in an Excel file organized according to the practices from the transition for transition programming (Kohler et al., 2016). A second researcher validated the classification by listening to the recordings, while two other members of the research team reviewed the mapping done. For focus groups, direct data analysis from audio recordings were used as it provides an answer to the research questions and is time and resource-efficient (Clarke et al., 2015; Greenwood et al., 2017; Paillé & Mucchielli, 2016). Notes and short verbatim of relevant statements from the focus group were mapped to the reference framework practice categories in an Excel table by the second author and revised by a research assistant who had listened to the audio recordings. Selected quotes, freely translated from French to English by the first author, were inserted in this article to illustrate the opinions of participants. This analysis resulted in a list of declared practices for each component. For Objectives 2 and 3, analysis from audio recordings were used from the focus groups. Notes and short verbatim of relevant statements from the focus group were identified by the second author and revised by a research assistant who had listened to the audio recordings to list all youth's and parent's needs and facilitators, barriers, and strategies reported by participants.

Cross-case analysis

An inductive thematic content analysis was used by the first author and revised by the corresponding author to identify themes and respond to each study's objectives. First, to describe declared practices of transition to adulthood reported in the six cases (Objective 1), an inductive thematic analysis of the data from all sources was used. Coding was done using the list of practices for each component from the within-case analysis. While we examined multiples sources, it was obvious that the focus group discussions yielded the most information about practices in place. We did not include programme structures in the cross-case analysis since the province does not have a structured government transition to adulthood programme (Vérificateur général du Québec, 2020). To identify themes about youth's and parent's needs and themes related to facilitators, barriers and strategies of a successful transition to adulthood (Objectives 2 and 3), an inductive thematic analysis of the focus groups content was carried out. Coding was done using the list generated from each within-case analysis. Finally, to ensure validity of all the results, we used a double validation procedure as recommended for qualitative research (Creswell, 2014). First, we did a peer-debriefing of the results with all the research team members to ensure that results corresponded to all steps of the project. Second, we validated the results by a seeking participants' feedback, that is, the results were presented in a written report and by conference to the participants to ensure the results matched their vision. In addition to this double validation, results were presented to people blind to the study to make sure that the results reflected transition to adulthood practices in their school. At each of these steps, comments were included in the interpretation of the results. The triangulation of data also strengthened the construct validity of the case study (Yin, 2018).

RESULTS

Within-case results

For Objective 1, results show that the practices in place related to student-focused planning, student development, interagency collaboration and family engagement are similar from one case to another. Table 2 shows the components addressed in each case, based on the multiple sources analysed and according to the taxonomy for transition programming and these four components. However, cases were unique with regards to programme structure. Some programme structure elements were exclusive to one school possibly because of the absence of a structured programme. For example, in Case 3, an intersectoral committee had been created. Case 5 has a committee for transition to adulthood rather than a single co-ordinator, which allowed for shared responsibility. Also, Case 6 established a close link with the school board, which facilitated support for practices. All these initiatives in terms of programme structure facilitate problem-solving and were viewed positively by the school that put them in place. For Objectives 2 and 3, results from the focus groups yielded a list of youth's and parent's need in terms of transition to adulthood, and facilitators, barriers, and strategies to support of transition to adulthood. Each case reported between zero and five needs for the youth and two to six needs for the parents. Also, each case identified four to eleven facilitators, four to thirteen barriers and two to five strategies. To address the second and third objective of this study, cross-case results are reported.

TABLE 2. Within-case result: Themes addressed in each case.
Practice categories Case S1 Case S2 Case S3 Case S4 Case S5 Case S6 Total
Student-focused planning
1. IEP development 6
2. Planning strategies 6
3. Student participation 6
Student development
1. Assessment 5
2. Academic SKILLS 6
3. Life, social and emotional skills 4
4. Employment and occupational skills 5
5. Student support 6
6. Instructional context 6
Interagency collaboration
1. Collaborative framework 4
2. Collaborative service delivery 4
Family engagement
1. Family involvement 6
2. Family empowerment 4
3. Family preparation 6

Cross-case results

Declared practices of transition to adulthood according to the taxonomy for transition programming

For each component of Kohler's taxonomy, two to three themes were identified, for a total of nine (see Figure 1). These themes correspond to declared practices that are most closely aligned with recommended practices.

Details are in the caption following the image
Declared practices in each component of the taxonomy for transition programming.

Student-focused planning

Three themes emerged from analysis in relation to this component. The first theme is planning intervention plan meetings. In most schools, the planning begins when the student is identified as requiring a transition to adulthood process. It was reported that this is often 3 years before finishing high school, when the youth are approximately 18 years old. The intervention plan meetings focusing on transition to adulthood bring together strategic partners including family members and allow for a follow-up of the student's objectives and life project. During these meetings, the objectives are selected according to the various spheres of the student's life and the student's life project, which is central to the transition to adulthood process. The priority objectives are identified. A health professional from S1 explained the process by saying: ‘Ideally, there are three transition to adulthood meetings; 3 years before the end of schooling, 2 years before the end of schooling and 1 year before the end of schooling. Because if we only have one meeting at the end, it becomes a service plan, it is no longer an accompaniment in the transition to active life. […] When we make a service plan, we listen to the needs, and we target the environments’.

The second theme is monitoring the progress of objectives annually. During this follow-up, the transition to adulthood objectives can be modified according to student needs. The transition to adulthood process is based on the student's interests and preferences. This implies that the student is present, active and expresses his opinions during transition to adulthood meetings, or at least that these behaviours are supported and encouraged. A youth from S6 explained how his involvement in the process helped him by saying: ‘It allows us to get to know ourselves. That's why we have the transition to adulthood process, actually. We get better and better’.

The third theme is promoting autonomy and self-determination. If necessary, the student's life plan is reframed to be more easily achievable. The student's interests are explored in class and in community experiences (e.g., volunteer work) to confirm or adjust the intervention plan objectives. While the values promoted in each school were not systematically stated during the focus groups, some schools explained that they approach the transition to adulthood process embracing the youth's participation and with openness as well as a focus on promoting autonomy and self-determination. A parent of a youth with disabilities from S6 highlighted the importance of the promotion of autonomy by professionals by saying: ‘I see him as my child. They really see him as an adult going out into the workplace. They trust him and treat him like an adult, and that's really important’.

Student development

Two themes emerged from analysis. The first theme is assessing youth. At the beginning of the transition to adulthood process, an assessment aims to document the youth's interests, preferences, challenges and objectives to write a joint plan and to guide further interventions. In most schools, the documents used are specifically designed for transition to adulthood and reflect areas of the student's life.

The second theme is developing youth's skills. Based on this assessment, specific skills (occupational, social, communication, domestic, collaborative) are developed in the classroom, in workshops or in school and community work placements. These skills are developed gradually over time in most schools through increasingly more complex experiences and placements. Ideally, the student is supported and monitored by the same transition to adulthood co-ordinator throughout the process. Multidisciplinary work (special education, psychology, social work and vocational training) is favoured and offers a personalized response to student's needs. One of the school members in S5 highlighted the important role of teachers' attitudes in the process by saying: ‘When teachers believe in it, […] I can see the difference. […] It's really the mobilization and the committees that make all the difference’. (School member, S5). Four of the six schools offer the services of a transition to adulthood liaison and co-ordination agent to students. Also, the pedagogical context between the participating schools is heterogeneous. Some schools may offer adapted services, specialized resources and activities, and student life experiences, while others offer students with special needs the opportunity to integrate into the school's regular extracurricular activities.

Interagency collaboration

Two themes emerged from analysis. The first theme is creating collaborations outside the school. Collaboration with health care services was observed in all the schools, although the formal nature of the partnerships differed across settings. A health professional collaborating with S3 reported positive collaboration with school members by saying: ‘What I realized is that all these meetings make us know each other better. We were able to allow educators to come and visit our services. We also went to visit the school services. By really seeing on the ground, we can see if the service corresponds to the needs of the person’. Several schools also collaborated with partners to create a regional resource inventory that facilitated referrals to various agencies offering services to students and families. Furthermore, some schools developed partnerships with community agencies and vocational services to promote work experiences in the community. These partnerships allowed for specific collaboration plans tailored to the needs and goals identified in each student's transition to adulthood process. Another sector that offers developmental support to youth with disabilities in the transition to adulthood process is adult education services. In most participating schools, this avenue was a resource frequently used by schools as a next step for the youth with a disability. Lastly, some schools operate in diverse cultural environments, requiring the collaboration with interpreters.

The second theme is having leadership. The leadership of the transition to adulthood process among the staff working with students varied according to the school (supervision documents on the roles and responsibilities of the staff, presence of an internal transition to adulthood committee and local intersectorial follow-up table). However, a common trend is that communication and collaboration with partners in the health care sector are viewed as promising for ensuring student follow-up.

Family engagement

Two themes emerged from analysis. The first theme is informing parents. In most schools, the family was contacted at the beginning of the transition to adulthood process, that is, generally 3 years before the end of the youth's schooling. Schools relied on a variety of strategies to inform parents and raise awareness of the importance of transition to adulthood and self-determination skills. For example, some schools and school boards provide explanatory documents about the transition to adulthood process, and some ensure that parents are prepared to participle in meetings. Explaining the process to parents was reported as an effective strategy by a school member from S5: ‘What I've noticed is that often parents are resistant, or we find them resistant, but most of the time it's because we haven't managed to explain so that they understand all the issues involved. […] Taking the time to explain can be a winning strategy’.

The second theme is involving parents. The point of view of parents is valued and documented. For example, they are asked about the interests and goals of their child, their perception of their child's autonomy, the history of services received by the student as well as family life. Parent participation in the transition to adulthood meetings is supported and strongly encouraged in the schools.

Parents and youth's needs in terms of transition to adulthood

Parents' needs

As can be seen in Figure 2, the analysis of the list of parents' needs allowed the emergence of five themes: (1) to be supported and to have respite. Parents repeatedly mentioned the need for support and reinsurance from stakeholders and for opportunities to share with other parents in the same situation and need respite (n = 6 schools out of 6), (2) to be informed (n = 5 schools out of 6). Parents need guidance in the transition to adulthood process, that is, to obtain information about the process, the roles of the professionals involved in the process, and about the resources available to support the transition to adulthood. They also want to better understand their child's diagnosis, as well as their needs, strengths and limits, (3) to develop strategies to support their children (n = 4 schools out of 6). They underscored the need to have more strategies to support their child's autonomy and goals. They express the need for professionals to reconcile the needs of the parent and those of the youth, to achieve more easily workable objectives, (4) to receive family-centred care (n = 2 schools out of 6), that is, care that respects their family values and culture and (5) to have access to stable services over time (n = 1 schools out of 6). The need for stability of the professionals was also mentioned in some schools. For example, a parent from S1 said: ‘As parents, it's important to share our concerns. Then the school will support us in this and guide us towards good organization’.

Details are in the caption following the image
Parent's needs.

Youth's needs

Figure 3 shows the four themes that emerged from youth's needs: (1) to develop employment abilities (n = 5), (2) to better understand themselves (n = 4), (3) to be supported in making more achievable choices (n = 4), and (4) to be referred to the right resource when needed (n = 3). In most schools, youths mentioned the need to develop their abilities for employment. They also need to develop their self-knowledge, that is, to recognize their interests, strengths, difficulties and needs and to learn to name them. The support and guidance provided by those who can help the student achieve clear, workable and specific goals is important for these young adults. As reported by a youth from S6: ‘Our teachers help us as we go along, and they take the time to help us’. They also want to be directly referred to the right resource to increase their opportunities and reduce their anxiety about the transition to adult life.

Details are in the caption following the image
Youth's needs.

Facilitators, barriers and strategies of a successful transition from school to adulthood

Facilitators and barriers

Figure 4 shows the three themes that emerged from the analysis of the participants' statements about facilitators and barriers: (1) collaboration, (2) transition to adulthood approach and (3) context. Facilitators and barriers about collaboration and context were reported in the six schools while the facilitators and barriers about transition to adulthood approach were reported in five of the six schools.

Details are in the caption following the image
Facilitators, barriers and strategies of a successful transition from school to adulthood.

First, collaboration, cohesion, teamwork and communication between all the members of the transition to adulthood process (practitioners, youths, parents and partners) promote the smooth running of the transition to adulthood process. A health professional partner from S1 explained the value of collaboration: ‘When we are in a school-to-work transition process, we listen to the strengths, we listen to the difficulties, and we work together to find the appropriate interventions to help the young person move forward’. In the same way, the transition to adulthood process is weakened if all the actors (youths, parents, stakeholders, and partners) are little or not mobilized or involved in the process.

Second, it is crucial that the transition to adulthood approach be explicitly described and well deployed. This ensures a good comprehension of the youth's needs and of the role of each stakeholder and it facilitates the transition to adulthood. For example, the presence of a person acting as a co-ordinator and thus responsible for the follow-ups to the other actors of the process is particularly helpful. It was mentioned that it is easier to start the transition to adulthood earlier than later. Conversely, misunderstandings about the transition to adulthood approach and role of partners can be a barrier to the process as reported by a school member from S4: ‘Everyone had their expectations of who does what. And we realized that it was not shared. It must be agreed upon from the start. And it must belong to someone. There are many people, it touches many stakeholders. When it belongs to everyone, it belongs to no one’.

Third, the context in which transition to adulthood is deployed is important. Being open, flexible and creative as professionals allow the youth to explore several areas of the transition to adulthood. However, staff turnover and the lack of stability in their respective positions of the professionals involved in the transition to adulthood process hinder its successful implementation. In addition, the lack of services in the community, for example, adapted public transportation, access to vocational counselling or limited availability of recreational activities, are barriers to transition to adulthood practices.

Strategies

Mapping the declared practices to the taxonomy of transition programming (Kohler et al., 2016), yielded a list of 25 strategies. Of these, four were highlighted in at least three out of six schools (see Figure 4). First, starting the transition to adulthood process in a timely fashion, that is, at least 3 years before the end of schooling, was identified as a facilitator of the process in five schools. Consequently, identifying students with special needs in advance and setting up a collaboration between the school and the family early on are likely to benefit the transition to adulthood process. As reported by a school member from S3: ‘We can see youth with disabilities arriving earlier than before. We can prepare better. I can already plan transitions and see what's needed’. Second, four schools propose to encourage the development of projects related to transition to adulthood. These included increasing the offer of community services, integrating recreational activities, encouraging the establishment of an after-school link between the student and a school resource person, and holding events with partners. Third, clarifying the steps, roles and responsibilities of the process and designating a person in charge of transition to adulthood could also benefit the transition to adulthood process according to three schools. A school member from S3 said: ‘It takes someone with a clear mandate to deploy this transition to adulthood in the best possible way. It has to be clear who does what’. Last, making the process better known to parents of youth with a disability and providing more information to parents about health care services in relation to the transition to adulthood was viewed as a potential improvement for three schools.

DISCUSSION

Aiming to better understand the complex problem of transition to adulthood services, this study presents an overview of transition to adulthood practices in place in six high schools. Declared practices, parent's and youth's needs, facilitators, barriers and strategies are discussed and mapped to the recommended practices of the taxonomy for transition programming (Kohler et al., 2016). Results show that recommended practices are in place with regards to four of the five recommended categories, that is, student-focused planning, student development, interagency collaboration and family engagement. Many of these practices meet the needs of youth and their parents, and the participants highlighted facilitators and barriers of a successful transition from school to adulthood and strategies to support it. These practices were reported for the six high schools participating in the study and they have been in place for several years. The fact that they have been in place for a long time and that they continue to be deemed satisfactory confirms their feasibility and relevance and further suggests that they can inspire other schools within the educational system to develop and/or improve their transition to adulthood practices.

Student-focused planning is reported by all participants, and they emphasized the central role of the students in the transition to adulthood process. Participating schools promote self-awareness and self-determination of the student and support the student to participate actively to transition to adulthood meetings and decision-making, as well as to gain autonomy. To help youth develop self-determination, transition to adulthood actors teach them to communicate their hopes, dreams, and goals. To do so, some authors suggest the use of technology or other type of adapted assessment that supports youth in clearly expressing their goals and life project (Van Laarhoven-Myers et al., 2016). Also, participants highlight the importance of identifying youth in need of transition to adulthood in a timely fashion. Starting the transition to adulthood process at least 3 years before the end of schooling is recommended (Ministère de l'Éducation et de l'Enseignement supérieur, 2018).

Declared practices for student development are also reported in the participating schools. However, some suggestions to improve practices with regards to student assessment and skills development can be made. The key messages that emerge from our study are to encourage the school personnel who put in place the transition to adulthood process to ensure that they know the student well and provide him/her with the tools and experiences required to develop abilities essential to adult life. Participants expressed the need for youth to develop preparation to employment abilities and self-knowledge. To help them to make more achievable choices, an important recommendation of optimal transition to adulthood practices is to offer varied opportunities for students to explore through work placements, community experiences, fields trips, summers jobs, etc. The support of community initiatives by all partners is therefore encouraged to develop opportunities for youth with disabilities and to improve quality of life (Levy et al., 2020).

All participating schools reported interagency collaboration with health care services and vocational rehabilitation. However, the nature of the partnerships differed from one school to another, and some barriers to collaboration were reported, for example, the need to be referred to the right resources. To ensure a positive collaboration, it is important to develop knowledge of the local resources and partners, ensure that the information about these resources is easily available to youth and their families, formally include partners in the development of the intervention plan and specify roles and responsibilities of each partner involved with the student. To ensure an efficient collaboration, participants suggest identifying a transition co-ordinator, a recommendation also make by several researchers in this field (Crompton & Bond, 2022; Jacob et al., 2022; Lillis & Kutcher, 2021; Noonan et al., 2012; Poirier et al., 2020; Scheef & Mahfouz, 2020; Wagner et al., 2016). For example, this co-ordinator can be a school professional who has the mandate to overview the transition to adulthood plan for a student but who does not necessarily provide direct service to them. The role of the transition co-ordinator is to ensure communication between partners, evaluate transition to adulthood process and provide expertise to all partners (Lillis & Kutcher, 2021; Poirier et al., 2020; Scheef & Mahfouz, 2020).

Family engagement was a priority in all participating schools. Strategies to facilitate parents' participation in the transition to adulthood process via the intervention plan are in place. However, strategies to ensure family empowerment could be further developed. Some recommendations in that regard include facilitating meetings between parents of youth with disabilities as well as meetings with professionals to discuss the youth's life project. This is particularly important because parental expectations and parental involvement are known as predictors of postschool outcomes for youth with disabilities (Crompton & Bond, 2022; Test et al., 2009; Wehman et al., 2015). Despite the efforts made by the various professionals involved, barriers to collaboration with parents were identified and parents reported the need to be better informed and supported to foster their engagement. In addition to communication difficulties, Francis et al. (2019) reported parent exhaustion, disagreements, disappointment and distrust as barriers to parent involvement and collaborative relationships. Pleet-Odle et al. (2016) proposed a to-do list of strategies and activities to use in partnership with families to promote expectations. These strategies highlight the importance of preparing, involving and empowering parents, by inviting them early to participate in decision-making and giving them a lot of opportunities to develop youth's independence (Pleet-Odle et al., 2016). Francis et al. (2019) also encourage professionals to demonstrate commitment and care, to provide emotional support, and more information as well as facilitating family network to support parent involvement and collaborative relationships.

The practice category of programme structures from the taxonomy on transition programming (Kohler et al., 2016) was not documented in this study because there is currently no government mandated programme of transition to adulthood in place in the province of Quebec (Vérificateur général du Québec, 2020). This observation, while surprising, is globally consistent with the situation in other provinces in Canada as confirmed by an informal scan of Government websites in the nine other provinces of the country. One noteworthy and inspiring exception is the province of Ontario where a programme stated the transition to adulthood elements must be included in an individualized education plan for youth transitioning to adulthood (Ministry of Education, Ontario, 2017). Also, while the schools participating in this study did not express a need for a structured programme, it is relevant to underscore some of the potential benefits such a programme may have. Indeed, the implementation of a structured programme of transition to adulthood would allow for better ongoing support of resource allocation and would ensure accountability. It would also help in structuring a global offer of services throughout Quebec and would therefore harmonize services offered to youth with disabilities. Finally, a structured programme would be easier to review and improve. Indeed, regular evaluations of the programme could document its effects and identify possible improvements (Jacob et al., 2022).

Strengths and limitations

This study used a rigorous methodology and a variety of sources of information to paint a complete and authentic picture of current transition to adulthood practices in schools in the province of Quebec that have put an emphasis on transition to adulthood. The results therefore make a significant contribution to the knowledge of transition to adulthood. Nevertheless, we acknowledge some limitations to our study. First, limits about generalization within the case are important to address (Gomm et al., 2009). Results were collected between 2018 and 2020 in the province of Quebec and in schools dedicated to transition to adulthood that declared good practices. Also, generalization to other schools must be done with caution. While results may apply to some other schools in Quebec and to other provinces in Canada, they may only partially generalize to other countries. Also, practices are dynamic and evolve such that a portrait from 2020 may be different a few years later. Second, we chose the taxonomy for transition programming to interpret the results because it is a widely accepted framework for transition to adulthood practices. However, it could also have limited the interpretation of some results that did not fit into Kohler's category. If a structured programme of transition to adulthood were implemented, future studies may seek to examine the impacts of this programme on youth with disabilities.

CONCLUSION

Recommended transition to adulthood practices are reported by school personnel in Quebec with regards to student-focused planning, student development, interagency collaboration and family engagement. Transition to adulthood services are however not organized within a structured programme, a situation that is not considered optimal because it limits resource allocation and programme evaluation. Nevertheless, results show that a dedicated school team, in collaboration with local partners, can offer good support to youth with disabilities in their transition to adulthood.

ACKNOWLEDGEMENTS

The authors acknowledge the numerous participants including school, health services and vocational rehabilitation personnel as well as, most importantly, youth with disabilities and their families for whom this study was conducted and whose contribution was essential. We also thank the research assistants who collaborated in this project: Sarah Beauchesne, Sarah-Ève Poirier, Léonie Proulx and Michelle Tousignant.

    FUNDING INFORMATION

    This research was supported by a grant from the Fonds de Recherche du Québec – Société et culture to Chantal Desmarais (#2019-0HPR-264170).

    CONFLICT OF INTEREST STATEMENT

    The authors declare no conflict of interest.

    ETHICS STATEMENT

    Ethical approval for this research was granted by the Centre intégré universitaire de santé et de services sociaux (CIUSSS) de la Capitale-Nationale.

    DATA AVAILABILITY STATEMENT

    Data not shared.