Resource Centre

Preparing for Adult Life: Resource & Role Development

The need for information related to transition planning was identified by the families within our advisory groups as well as being clearly documented in the literature.  Families want information about services and resources available to them as well as the tools to foster the skills needed in adult life. 

We set out to develop a resource that would support youth and families to prepare for transition.  In addition, we were interested in developing a tool that would assist us in auditing their progress towards their readiness for adult life.  A wealth of transition related resources exist and much time was spent reviewing those available.

Timetable for Growing Up

The Timetable for Growing Up was adapted from a resources developed by the Adolescent Health Transition Project at the University of Washington in Seattle.  This resource was developed to provide families with suggestions on how to promote skill building starting at an early age.  The content was designed to promote conversation within families and encourage them to take action.  The Shared Management Model was incorporated into this resource by reflecting the shift in responsibility from parent to youth within the text.  At Bloorview, these are being distributed to all families at an early age.  Poster versions are also displayed in clinic rooms to promote further discussion during appointments as well as in waiting areas. 

Developing the Skills for Growing Up

The series of checklists, “Developing the Skills for Growing Up”, were initially conceptualized as being checklists for clinician use to track progress.  Feedback from families led to the recognition that families need their own tool to track progress.  This shift in responsibility also fit well within the Shared Management Model.  These checklists are designed to address a holistic view of life vs. purely medical transition.  At Bloorview, clients and families begin working through the checklists at age seven.  They are handed out in multi-disciplinary clinics where families may discuss issues or goals further with their health care team. 

Professional Checklist

A professional checklist has been developed to complement the Developing the Skills checklist.  It provides an audit of the distribution of the resources and tools and records any dialogue or referrals initiated as a result.  The professional checklist also provides an audit of when critical information has been delivered to the client and family prior to medical discharge.  This checklist has changed it’s focus from tracking progress to providing consistent delivery of transition related information at designated times.  This shifts the responsibility from health care provider over to the family and client which is consistent with the Shared Management Model. 

Portable Medical Summary

A portable medical summary was identified as an important tool for young people with complex medical histories to have as they enter the adult world.  MyHealth Passport, developed by the Hospital for Sick Children in Toronto, has been selected as the mechanism for this summary.  It lists items such as a person’s medical conditions, past procedures, medications and allergies.  Clients will complete this summary in partnership with their health care team prior to medical discharge. 

Family Facilitators

A lack of programming for parents of youth was identified within a review of Bloorview’s existing practices.  The concept of the Family Facilitator was born out of a discussion with family on the advisory committee.  One parent commented that she learned the most valuable information from other parents.  Evidence of successful parent led programs had been observed during site visits and the literature supported peer led programs as well. 

The introduction of this role has been extremely successful at Bloorview.  Family facilitators meet with families on an individual basis and in groups.  They participate in the organization of parent education sessions.  They also provide excellent feedback and input to the organization as a whole for the purposes of planning and development of new programs and services.  Initial evaluation of their impact on families has shown positive results. 

Youth Facilitators

In addition, the role of Youth Facilitator has been added to compliment the peer to peer support model of service delivery.  The Youth Facilitator is a member of the LIFEspan team who participates in the clinic.  Drop-in times are available weekly where youth can come chat with the Youth Facilitator in a more informal setting. 

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