Transitions

Any transition is a developmental stage that involves significant cultural milestones (Stewart et al., 2001). Some examples of significant transitions are: the transition to elementary school, the transition to high school, the transition to postsecondary education, gaining more autonomy from parents, transition to the workforce, transition to independent living, and the transition from institutional setting (e.g. a hospital) to community life.

Research has shown that children and youth with disabilities have complex journeys, as they often have to navigate new environments with limited guidance, feel pressure to be independent, and lack the resources and supports that make it difficult to prepare for transitions. Research on transition has shown that social support is a critical success factor for any transition. Social support includes family, of course, but also peers, community members and service providers.

Some of the key concepts that need to be studied and considered by anyone working with children and youth with chronic disabilities who are transitioning to a new stage of life includes: the emphasis on a person's lifecourse and the network of relationships, changing roles and expectations over time; building a person's capacity to participate in meaningful activities in their community; helping a person "get ready" for the next stage in life by giving them the "tools" they need; being "interdependent" versus "independent" because person and environment are transactional. These concepts recognized that life is a journey with many transitions.

Historically, therapeutic focus has been oriented on transitioning a person toward adult services and individual independence, but our research advocates a change in direction (Stewart et al., 2001). A lifecourse approach to transition places the emphasis on the natural, developmental transitions that all people experience in life. Furthermore with this approach, there is less focus on individual skills of independence (for example, with dressing or cooking), and more on the term 'interdependence' among many people. This concept recognizes that everyone relies on supports at different stages and transitions in their life.

We have learned a great deal in the past decade or so about some transitions (for example, the transition to adulthood for youth with disabilities) but we still have much more to learn as we adopt a lifecourse approach to services and research in this area. For a synthesis of the current literature on the transition to adulthood for youth with disabilities, please click here to view the article that is posted on the International Encyclopedia of Rehabilitation.

  • Click here for list of references

    Claassen, A. A., Gorter, J. W., Stewart, D., Verschuren, O., Galuppi, B. E., & Shimmell, L. J. (2011). Becoming and staying physically active in adolescents with cerebral palsy: Protocol of a qualitative study of facilitators and barriers to physical activity. BMC Pediatrics, 11, 1.

    Gorter, JW (2011). Build our youth for the future in paediatrics and beyond. Acta Paediatrica, Aug 28, doi: 10.1111/j.1651-2227.2011.02455.x

    Gorter, J.W., Stewart, D., Woodbury-Smith, M. (2011). Youth in transition: Care, health and development. Child: Care, Health and Development, 37(6):757-763.

    Wiegerink, D. J., Stam, H. J., Gorter, J. W., Cohen-Kettenis, P. T., Roebroeck, M. E., & Transition Research Group Southwest Netherlands. (2010). Development of romantic relationships and sexual activity in young adults with cerebral palsy: A longitudinal study. Archives of Physical Medicine and Rehabilitation, 91(9), 1423-1428.

    Young N, Barden W, Mills W, Law M, Boydell K. (2009). Transition to Adult-Oriented Health Care: Key Messages from Youth and Adults with Chronic and Complex Physical Disabilities of Childhood. Journal of Physical and Occupational Therapy in Pediatrics, 29( 4), 345-361.

    Stewart, D. (2006). Transition to adulthood. Physical and Occupational Therapy in Pediatrics, 26(4), 1-103.

    Stewart, D. (2006). Evidence to support a positive transition into adulthood for youth with disabilities. Physical and Occupational Therapy in Pediatrics, 26(4), 1-4.

    Wynn, K., Stewart, D., Law, M., BurkeGaffney, J., & Moning, T. (2006). Creating connections: A community capacity-building project with parents and youth with disabilities in transition to adulthood. Physical and Occupational Therapy in Pediatrics, 26(4), 89-103.

    Young, N., McCormick, A., Mills, W., Barden, W., Boydell, K., Law, M., et al. (2006). The transition study: A look at youth and adults with cerebral palsy, spina bifida and acquired brain injury. Physical and Occupational Therapy in Pediatrics, 26(4), 25-45.

    Stewart, D., Law, M., Rosenbaum, P. & Willms, D. (2001). A qualitative study of the transition to adulthood for youth with physical disabilities. Physical and Occuaptional Therapy in Paediatrics. 2001, 21, 3 - 21

About a Lifecourse Approach

For children and youth with chronic disabilities, the impact of their disabilities is lifelong (Stewart et al., 2001;"Best Journey to Adult Life: for Youth with Disabilities"). A lifecourse approach examines the individual within their environments across time (Irwin, 2001). For those with disabilities, the environments can include social contexts (societal attitudes/the willingness for people with disabilities to participate in meaningful activities), physical contexts (accessibility), and legislative contexts. Not only does the environment influence the person, but the person also influences their environment; therefore, it is important to recognize the transactional nature of the interaction, and not focus on the person with a disability alone.

A lifecourse approach views an individual's life as a journey with many different phases and transitions (Stewart et al., 2009). It allows for the examination of common experiences and characteristics of any transition. For example, the concept of 'interdependence' is emerging as a common experience for all young persons, with or without disabilities, during life transitions (Stewart et al., 2009). Interdependence is a term that focuses on a person's capacities and relationships. For example, when an individual requires assistance with dressing, an interdependent approach focuses on the ability of the individual to self-direct the tasks they require assistance with. Unlike traditional notions of independence, where any assistance is seen as a deficit, interdependence recognizes that assistance with certain tasks is necessary for complete autonomy.

A lifecourse approach allows for the exploration of new concepts and for the development of a body of evidence to provide individuals, their families and communities with guidelines for building future capacity to eliminate many of the barriers facing people with disabilities today.

  • Click here for list of references

    Claassen, A. A., Gorter, J. W., Stewart, D., Verschuren, O., Galuppi, B. E., & Shimmell, L. J. (2011). Becoming and staying physically active in adolescents with cerebral palsy: Protocol of a qualitative study of facilitators and barriers to physical activity. BMC Pediatrics, 11, 1.

    Gorter, J.W. (2011). Build our youth for the future in paediatrics and beyond. Acta Paediatrica,doi: 10.1111/j.1651-2227.2011.02455.x

    Gorter, J.W., Stewart, D., Woodbury-Smith, M. (2011). Youth in transition: Care, health and development. Child: Care, Health and Development, 37(6):757-763.

    Wiegerink, D. J., Stam, H. J., Gorter, J. W., Cohen-Kettenis, P. T., Roebroeck, M. E., & Transition Research Group Southwest Netherlands. (2010). Development of romantic relationships and sexual activity in young adults with cerebral palsy: A longitudinal study. Archives of Physical Medicine and Rehabilitation, 91(9), 1423-1428.

    Young N, Barden W, Mills W, Law M, Boydell K. (2009). Transition to Adult-Oriented Health Care: Key Messages from Youth and Adults with Chronic and Complex Physical Disabilities of Childhood. Journal of Physical and Occupational Therapy in Pediatrics, 29( 4), 345-361.

    Stewart, D. (2006). Transition to adulthood. Physical and Occupational Therapy in Pediatrics, 26(4), 1-103.

    Stewart, D. (2006). Evidence to support a positive transition into adulthood for youth with disabilities. Physical and Occupational Therapy in Pediatrics, 26(4), 1-4.

    Wynn, K., Stewart, D., Law, M., BurkeGaffney, J., & Moning, T. (2006). Creating connections: A community capacity-building project with parents and youth with disabilities in transition to adulthood. Physical and Occupational Therapy in Pediatrics, 26(4), 89-103.

    Young, N., McCormick, A., Mills, W., Barden, W., Boydell, K., Law, M., et al. (2006). The transition study: A look at youth and adults with cerebral palsy, spina bifida and acquired brain injury. Physical and Occupational Therapy in Pediatrics, 26(4), 25-45.

    Stewart, D., Law, M., Rosenbaum, P. & Willms, D. (2001). A qualitative study of the transition to adulthood for youth with physical disabilities. Physical and Occuaptional Therapy in Paediatrics. 2001, 21, 3 - 21

    Iwin, S. (2001). Repositioning disability and the life course: A social claiming perspective. In M. Priestley (Ed.), Disability and the life course: Global perspectives (pp. 15-25). New York, N.Y.: Cambridge University Press.

Best Practice Guidelines

"The Best Journey to Adult Life" for Youth with Disabilities: An Evidence-based Model and Best Practice Guidelines for the Transition to Adulthood for Youth with Disabilities"

© Debra Stewart, Matt Freeman, Mary Law, Helen Healy, Jan Burke-Gaffney, Mary Forhan, Nancy Young, & Susan Guenther, 2009; Published and distributed by CanChild Centre for Childhood Disability Research

The "Best Journey to Adult Life" is a model that represents the dynamic and ever-changing developmental process of a young person's lifecourse, with the transition to adulthood depicted as an important 'journey'. Best Practice Guidelines for the transition to adulthood for youth with disabilities have been written using the words of youth, parents, community members, service providers, educators and researchers in Ontario, Canada. The Guidelines are organized into six main themes that emerged from comprehensive literature reviews, consensus meetings and focus groups with key stakeholders.

  1. Collaborative initiatives and policies are necessary supports for the transition to adult life.
  2. Building capacity of people and communities will enhance transition process.
  3. The role of the "Navigator" within communities facilitates capacity building.
  4. Information and resources are available to all involved in the transition process.
  5. Education is a critical component of any transition strategy.
  6. Ongoing research and evaluation provides the evidence needed for success.

Within each theme, guidelines are provided for three key phases of the transition process: preparation, the journey itself and the landings in the adult world. Specific guidelines within each phase are written for the key stakeholders involved in the transition process. These Best Practice Guidelines are generic and can be used and adapted by different communities and services.

Learn more about the study and download the guideline here

Frequently Asked Questions

I am the parent of a youth in the process of transitioning to adulthood, where can I find a list of local resources in my community?

As a research organization, CanChild does not keep a database of programs available for youth in transition. To find these resources we recommend you contact your local children's treatment centre for community specific information, or use local community databases to find agencies, such as red or blue books. If you live in Ontario, the Door 2 Adulthood website offers a variety of resources for many communities across the province.

I am the parent of a youth in the process of transitioning to adulthood, what resources do you have available to parents?

To assist with planning for transitions, CanChild has developed the The KIT, which stands for Keeping It Together, that offers a place to keep information about their youth and plan for transitions, starting from preschool to elementary school through adulthood, click here for more information.

I read about the Youth KIT on the website, when will it be available?

The Youth KIT is now available here.

I am a parent or youth and I would be interested in participating in research in the future, who do I contact?

Research conducted by CanChild varies by topic area and type of study being conducted. Although we appreciate your interest, CanChild does not keep a database of interested study participants.

In many of your documents, the term capacity is used, what does this mean?

In the past, therapeutic interventions have been focused on individual independence and skills or components needed to complete tasks such as dressing oneself. Rather than focusing on just on skills or components, recent research suggests that it is better to focus on the capacity of the individual to participate in activities that are important of them, and to learn how to direct someone else to support the individual two complete tasks/activities. The ability to direct care is only one component of capacity, other components include: having a social network and supports that can be relied upon; the ability to problem solve and provide solutions to solve problems; and learning how to be "interdependent: rather than "independent".

The individual is not the only focus of capacity. Families and communities also have capacity as well. The capacity of families includes important elements of the relationships, support networks, and for youth in transition to adulthood, it also includes learning to "let go" when appropriate.

Community capacity refers to the resources and supports in place for an individual with a disability to participate fully in that community. Within the context of transition to adulthood, community capacity refers to building supports for youth moving from pediatric to adult services, which can include changing attitudes towards inclusion and becoming more accessible for all persons with disabilities.

Capacity building is a new focus of research, building on what we have learned in the past decade. For more information on our most current research, please see the "Best Journey to Adult Life: Best Practice Guidelines".