Best Practice Guidelines for Transition to Adulthood for Youth with Disabilities in Ontario: An Evidence-based Approach

^{© Stewart, Antle, Healy, Law, & Young, 2007}

Principal Investigators:
Debra Stewart, CanChild Centre for Childhood Disability Research
Beverley J. Antle, The Hospital for Sick Children

Co-investigators:
Helen Healy, Bloorview Kids Rehab
Mary Law, CanChild Centre for Childhood Disability Research
Nancy L.Young, Laurentian University

Introduction

The transition from adolescence into adulthood is an important development stage for all young people (Schulenberg, Bryant, & O'Malley, 2004; Staff & Mortimer, 2003). This period of life transition presents particular challenges for youth with disabilities, their families, the rehabilitation team, and the broader health care system (Blum, Hirsch, Kastner, Quint & Sandler, 2002; Dornbush, 2000). Young people with disabilities face numerous barriers in achieving autonomy and independence, and they often need support from their family and community to make a successful transition into the adult world (Antle et al., 1999; King, Brown & Smith, 2003; Stewart, Law, Rosenbaum & Willms, 2001).

Almost two decades of study indicate that youth with disabilities and chronic health conditions do not have the same outcomes as their peers on such important domains as health status, academic achievement, interpersonal relationships, community participation and employment (Antle et al.,1999; DePoy & Werrbach, 1996; Cadman, Rosenbaum, Boyle & Offord, 1991; Wagner, Newman, Cameto & Levine, 2005). The recent National Longitudinal Transition Study 2 in the United States found that, although youth with special needs entering adulthood had more positive outcomes than 20 years ago, the increase was not statistically significant (Wagner et al.). Young adults, families and professionals have identified the need for greater attention to the factors that support successful transitions to adult life for young people with disabilities (Stewart et al., 2001; Wagner et al.).

During the transition to adulthood, youth with disabilities are 'transferred' from child and family-centred systems, such as school and pediatric rehabilitation centres, into adult systems (Antle et al., Stewart et al.), such as college/university and adult health services. The importance of adequate preparation for youth with chronic health conditions and disabilities as they move towards adulthood is identified by the recent joint consensus statement on health care transitions released by three American professional bodies representing pediatricians, family physicians and internists (Blum et al., 2002). It is also noteworthy that earlier consensus statements focused on transition from pediatric to adult health care institutions (Blum, 1995), and now the current consensus statement reflects a more holistic set of goals highlighting the services needed to maximize lifelong functioning, not just preparation for new health care services (Blum et al.).

There are currently no best practice guidelines for services and community supports for transition to adulthood in Canada. This Summary Report presents the methods and results of a research project that developed best practice recommendations for transition to adulthood in Ontario, Canada. It describes an evidence-based approach to developing best practice guidelines that can be used by communities and service systems.

The Evidence

Best practice guidelines should be based on current evidence. Evidence includes: the best available research findings as published in the literature; perspectives of consumers/clients; and information about the current practice context (Haynes, Devereaux & Guyatt, 2002). The current evidence on transition to adulthood for this project was derived from two primary sources: a) existing research in the published and unpublished literature; and b) current perspectives and experiences of consumers, service providers and policy makers from across Ontario through interviews and focus groups.

In the literature, transition to adulthood often refers primarily to a service perspective that views transition as "…a dynamic, lifelong process that seeks to meet their (youth with special needs) individual needs as they move from childhood to adulthood" (Blum et al., 2002). Recent literature however acknowledges that transition to adulthood is more than just a service approach, as it involves "…a process of gradual adoption of new roles and modification of existing roles" (King, Baldwin, Currie & Evans, 2005) for all youth and their families. A holistic, lifelong view of transition was considered for this project, as it represents current evidence and views.

Most of the literature about transition to adulthood which has been published in the past 10 years is descriptive or conceptual in nature. Although the number of 'studies' about transition services is slowly increasing, very little evidence is available about the effectiveness of specific models of transition. Most of the studies about services identify key principles or factors that support the transition process. Recent studies identified the need for best practice guidelines for transition to adulthood services and supports.

The published literature that was reviewed in this project is from the past six years only, as our knowledge about transition has increased dramatically since 2000. A recent critical appraisal of review articles up to 2005 (Stewart, Stavness, King, Antle & Law, 2006) is summarized along with additional literature published in the year 2006. Unpublished literature, which includes reports, brochures and online information about transition to adulthood, has also increased dramatically in the past few years with the implementation of new services and supports. It would be difficult and time-consuming these days to keep up with all of the unpublished information. In order to use this type of information for developing best practice guidelines, a representation of information from key sources was summarized. Appendix A summarizes the sources of literature and evidence reviewed.

The other important sources of evidence are the current practice context (health care, clinical circumstances) and community/consumer/client perspectives. Focus groups and individual interviews with over 130 people from across Ontario were conducted to gather this type of evidence about transition to adulthood for youth with disabilities in Ontario. Participants included youth with disabilities, parents, service providers from numerous service systems (health, social, education, recreation) and policy analysts from five Ontario ministries. A list of the key themes that emerged from the analysis of this evidence by the investigators of this project is provided in Appendix B.

Many of the findings from the focus groups and interviews were found to be consistent with the literature. These are summarized below.

• Successful transition from youth to adult services in the areas of healthcare, education and employment is thought to result from early planning, often in the years leading up to transition to adult services and environments.
• Programs and resources that facilitate the skills required for youth to function in the adult environment should focus on self-determination, problem-solving, and relationship-building. Environmental supports are also considered to be important factors for a successful transition.
• Capacity building is needed in all adult environments and services. Capacity refers to the assets and abilities of all people and communities, and capacity building takes a strengths-based approach to planning supports and services.
• There exist a number of workbooks and resources online and in hard copy that have been developed in some communities. However there is a need to have these resources organized in a manner that they are easy to find and known to people who need them.
• Clear communication between healthcare providers, educators, policy makers and community must occur to facilitate seamless, successful transition.
• Leadership and supports to aid in the transition were identified, as well as continuing these supports in the adult environment through roles such as case managers, primary care physicians, parent-to-parent networks, community facilitators/navigators and/or peer mentors.
• Flexibility is needed to customize the types of services for each individual along with flexibility as to where and when the services are utilized. The idea of choice in funding models was identified by many people.

Best Practice Recommendations

Our "expert advisory panel" of 4 youth, 5 parents, 3 community members, 9 service providers, 1 consultant and the research team reviewed all of the evidence summarized above at a consensus conference in March 2005. The panel identified four main areas for best practice recommendations at the levels of policy, services and community. These recommendations were founded on some basic principles that the panel members agreed should apply to all transition services and supports:

• Person first, family-centered, culturally sensitive
• Life span philosophy
• Collaborative and interdependent
• Value of citizenship: participation, contribution and belonging
• Individualized choices and options
• Orientation to emerging adults and future
• Focus on strengths and needs, not medical condition.

The four main recommendations are outlined below, with accompanying guidelines for policy, services, support and communities.

• Collaborative initiatives and policies for transition to adulthood are needed in Ontario
  Guidelines:
  • At the provincial/policy level, collaboration through an inter-ministerial team could develop policy around transition. Ministries involved would be (in alphabetical order) Children & Youth Service, Community & Social Services, Colleges & Universities, Education, Health, Health Promotion, Labour, and Transportation. A lead ministry would be needed to champion this effort.
  • At the service level, intersectoral collaboration and communication is essential. Plans for transfer between pediatric and adult service systems should start early and involve all services. Funding of services could be dependent on collaborative efforts.
  • At the community level, identify existing transition community networks, and if not there, create them across the province. A coordinating body, such as social planning councils could standardize this across regions. (An excellent example of a community initiative is the Timmins Transition Committee - see Appendix B).
• Building Community Capacity will enhance the transition process
  Capacity is a term that refers to the assets, abilities and strengths of people and communities.
  Guidelines:
  • Community facilitators or 'navigators' should be created, through multi-ministry funding, to support youth and families in planning for transition and navigating all of the systems and resources out there. They can also help to develop circles of support and networks. The position of a facilitator needs to be unencumbered, i.e., not affiliated with any service system, but rather be part of the community.
  • Work towards "an enhanced capacity for empowerment and self-determination and access to advocates or advocacy when needed". At the community level, employers and other community members need to become aware of the capacity of youth with disabilities to contribute and participate. Families and youth also need support to advocate for inclusion, as it takes a great deal of time and energy.
• Information, Resources and Services need to be accessible and available to all
  Our Vision: "Every community has a visible, regularly used, accessible location where members of the community can get information and resources on transition"
  Guidelines:
  • A single point of access is needed in the province for information, resources, networking and supports along the life-span. The facilitators/navigators could work from this access point. One example is the Integrated Children's Northern Services ICNS - central area to get access to services.
  • At the policy level, consider a mandate requiring access to a location in every community that coordinates transition information. This location would build on existing infrastructure in communities (e.g., libraries) and use a universal design concept so that it's accessible on multiple levels.
  • Governments and service systems should commit to providing information about transition services in clear language as well as evidence of the benefits related to transition to all citizens.
  • At the service level, commit to information exchange among professionals (capacity building among service providers as well as those who could benefit).
  • At the community level, annual transition workshops in different regions, which could be overseen and coordinated by government, as part of the single point of information access described above.
• Education and Research is critical to successful development in this field
  Guidelines:
  • Develop province wide educational strategy related to transition & educate people about the values, needs for supports, benefits of transition strategy and real life outcomes. The focus should be the on importance of transition initiatives.
  • Educate service providers, educators of all levels from elementary to post secondary (this should be mandatory) and students being trained in related disciplines such as doctors, nurses, physiotherapists, occupational therapists, teachers, social workers, and speech language pathologists; as well as the youth themselves, parents, community and employers.
  • Develop educational materials for different audiences. All material should give a vision of the future, steps towards a successful transition plan and offer experiential opportunities for youth.
  • Education of parents by parents is needed in communities.
  • Continuing education courses will help to educate youth and parents so that they can become navigators and peer mentors.
  • Government to invest in infrastructure such as transportation and peer-based initiatives in order for transition initiatives to be successful. Conduct research. Any new transition program should include research and evaluation to demonstrate the benefits of these programs, show how transition programs can be effective, follow youth over time to learn what works and doesn't work. We should begin right away by evaluating training or education models that are in place.
  • Include youth, parents, community, and consumers at the table as part of the research team.
  • Focus transition projects on outcomes of participation, quality of life, opportunities, self determination, self advocacy, self efficacy, as well as an overall cost benefit analysis.

Conclusion

This systematic approach to developing best practice recommendations and guidelines ensures that services and supports are based on current 'best evidence'. It acknowledges that evidence is a combination of published studies and literature as well as information about the current practice context and community/consumer/client perspectives and interests. These guidelines are broad in scope and as such they can now be reviewed, adapted and implemented at multiple levels (provincial, community, service system, family) to work within local contexts. Through the collaborative efforts of all people involved in this field, youth with disabilities can each be supported during the transition to an inclusive and meaningful adult life.

References

Antle BJ, Frazee C, Contaxis G, et al. (1999). Creating a life of your own: Experiences with transition to independence among adults with life-long disabilities - final report of research fellowship in community living. Toronto: West Park Hospital.

Arnett, J. J. (2000). Emerging adulthood: A theory of development from the late teens

through the twenties. American Psychologist, 55 (5), 469-480.

Blum, R. W. (1995). Transition to adult health care: setting the stage. Journal of Adolescent Health, 17 (1), 3-5.

Blum R, Hirsch D, Kastner TA, Quint RD, et al. (2002). A consensus statement on health care transitions for young adults with special health care needs. Pediatrics. 110(6), 1304-1306.

Cadman D, Rosenbaum P, Boyle M, Offord DR. (1991). Children with chronic illness: Family and parent demographic characteristics and psychosocial adjustment. Pediatrics, 87(6):884-889.

DePoy E, Werrbach G. (1996). Successful living placement for adults with disabilities: Considerations for social work practice. Social Work in Health Care, 23(4):21-34.

Dornbusch SM. (2000). Transitions from adolescence: A discussion of seven articles. Journal of Adolescent Research, 15(1):173-177.

Haynes, R.B., Devereaux, P.J., & Guyatt, G.J. (2002). Clinical expertise in the era of evidence-based medicine and patient choice. ACP Journal Club, 136, A11.

King, G. A., Baldwin, P.J., Currie, M., & Evans, J. (2005). Planning successful transitions from school to adult roles for youth with disabilities. Children's Health Care, 34, 193 - 216.

King, G., Brown, E., & Smith, L. (Eds.) (2003). Resilience: Learning from people with disabilities and turning points in their lives. Westport CT: Praeger.

Schulenberg, J., Bryant, A., & O'Malley, P. (2004). Taking hold of some kind of life: How developmental tasks relate to trajectories of well-being during the transition to adulthood. Development and Psychopathology., 16, 1119-1140.

Staff, J., & Mortimer, J.T. (2003). Diverse transitions from school to work. Work and Occupations, 30, 361 - 369.

Stewart D, Law M, Rosenbaum P, Willms D. (2001). A qualitative study of the transition to adulthood for youth with physical disabilities. Physical & Occupational Therapy in Pediatrics, 21(4):3-21.

Stewart, D., Stavness, C., King, G., Antle, B., & Law, M. (2006). A critical appraisal of literature reviews about the transition to adulthood for youth with disabilities. Physical & Occupational Therapy in Pediatrics, 26, 5 - 24.

Wagner, M., Newman, L., Cameto, R., & Levine, P. (June, 2005). National Longitudinal Transition Study2: Changes over time in the early postschool outcomes of youth with disabilities. SRI International: CA

For a copy of the full report with all references of evidence please contact Deb Stewart at CanChild.

This report is dedicated to the memory of Dr. Beverly Antle who worked to support young people with disabilities during their transition to a meaningful and satisfying adult life in inclusive communities.

Appendix A: Overview of Evidence from Literature

Appendix B: Summary of Major Themes from Focus Groups and Key Informant Interviews

• Structure
  Using a Team Approach to Planning and Focusing on Strengths
  Reduce Compartmentalization of Policies
  Greater Integration of Community and Consumer Organizations in Planning
  Service Coordination and Access
  Partnerships: Families, Communities and Services Working Together
  Greater Flexibility in Mandates-Cross Disability Perspective
  Enhanced Mechanisms for Information Sharing
  Choice and Alternatives for Families
• Process
  Navigator or Facilitator for Consumers
  Formalized Support for Peer Networks
  Enhanced Capacity in Schools and Communities
• Outcomes
  Satisfying and Meaningful Life
  Inclusive communities