Transition to Adulthood Services and Supports for Youth with Disabilities in Ontario: Best Practice Guidelines

In Brief © Debra Stewart, MSc OT Reg. (Ont.), CanChild Centre for Childhood Disability Research and Beverley J. Antle, PhD, RSW, The Hospital for Sick Children (SickKids)

Why did we do this study?

There are currently no best practice guidelines in Canada for service planning and delivery that address the transition to adulthood for youth with disabilities. This "In Brief" highlights the recommendations from a research study which used an evidence-based approach to develop such guidelines for services and supports in Ontario.

Who participated in this study?

Focus groups and individual interviews with over 130 people from across Ontario were conducted to gather 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, and recreation) and policy analysts from five Ontario ministries. Twenty five key informants in the field of transition to adulthood, including youth, parents, community members and service providers formed an expert panel at a consensus conference that reviewed the evidence to develop best practice recommendations and guidelines. Feedback from an independent expert from the academic rehabilitation sector was also incorporated into the final report.

What was done?

A team of five researchers and a research assistant first conducted a literature review of published and unpublished literature on this topic. The focus groups and individual interviews with consumers, service providers and policy makers from across Ontario were audiotaped, and then transcribed to text for content analysis by the principal investigators.

All of this evidence was organized into a powerpoint presentation and tables for the consensus conference, and an expert panel identified six key recommendations for best practice.

What was found?

The six recommendations for best practice in the area of transition to adulthood for youth with disabilities are:

  1. Collaborative initiatives and policies for transition to adulthood are needed in Ontario. For example, the different ministries and service systems (health, education, social, etc.) need to work together for positive change.
  2. Capacity Building is a critical element of transition services and supports at all levels (policy, services, communities, and families). Capacity is a term that refers to the assets and abilities that all people and communities have within themselves. Capacity building is a strengths-based approach to transition planning.
  3. Information, supports, and resources for transition need to be readily available and provided in an accessible location with a variety of easy to use formats for all members of the community to be able to use.
  4. Community facilitators or 'navigators' should be made available 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.
  5. A province-wide educational strategy needs to be developed for transition to adulthood. Education about the benefits of transition services and supports is needed at many levels: community members, professionals, employers, families, etc.
  6. All transition services and support programs should participate in outcomes-based research and evaluation. Evidence is needed to support the development and sustainability of services, supports, resources and community initiatives. Specific guideline statements were developed for each of these recommendations, at the level of policy, services and communities. These will be available in the full report when it is released.

What do the findings mean?

This evidence-based approach to developing best practice recommendations and guidelines ensures that services and supports are based on current 'best evidence'. They are written as guidelines, and as such they can now be reviewed, adapted and implemented at multiple levels (provincial, community, service system, and family) to work within local contexts. Through the collaborative efforts of all the people involved in this field, youth with disabilities can each be supported during the transition to an inclusive and meaningful adult life.

What's next

A full report of this study has been submitted to the Ontario Ministry of Health and Long-term Care and the Ontario Neurotrauma Foundation, which funded the study. Upon approval, the project report will be available on websites of the Ontario Neurotrauma Foundation and CanChild. The investigators plan to write more educational materials from this study, which will be posted on the CanChild website and the new D.O.O.R. 2 Adulthood website.

For more information contact

Deb Stewart, CanChild Centre for Childhood Disability Research, Phone: 905-525-9140, Ext. 27803