1. The Development of a Mental Health & Addictions Navigation Service, by Families for Families
Jeanne and Kendyl
Addictions and Mental Health Ontario Conference
May 31, 2016

2. Overview What is the Family Navigation project? History Principles
Model
Lived Experience & Family Engagement
What is Family Engagement/Lived Experience with the FNP
Importance of Lived Experience
Lived Experience Visioning Session Process within the FNP
What’s Next?
System Implications for FNP Model and Approach to Lived Experience
Next Steps
Kendyl

3. The MH&A Service “System”
Think of the WORST Service System possible for youth, young adults and their families who experiencing MH & A issues…….
What are key features of that system?
Jeanne

4. Challenges for families
We don’t know what services we need!
Eligibility criteria is unclear and inconsistent!
Public and Private – which service is which? …and why?
Providers don’t talk to each other!
Providers don’t talk to families!
Waiting for assessments!
Does my child need a youth or adult program?
How can I advocate for my child?
Waiting for services!
Jeanne
How can I help my child engage in services?
Are we waiting for the right services?
How can I help get my whole family back to a healthy state?
There are so many doors – it’s a maze!

5. Our History – By Families, for Families
Started by parents with lived experience, who had come up against hurdles in finding care for their children
Determined to make change so other families wouldn't have to experience the same struggles
Implored psychiatric leadership at Sunnybrook to take action!
Envisioned a high-caliber, personalized service in which they could place their trust – a service that would match the youth and family with the right professional or program in a timely way
When we couldn't find one, we built one
Jeanne

6. Our History (cont’d) Sunnybrook was committed to the program vision
Secured a commitment from RBC in 2013 for the “Run for the Kids” to support the program which seeded the program; and since have garnered support from other private donors
Program unofficially launched in November 2013 in response to overwhelming number of calls after the first run
Over the past two years, program has continued to grow to meet needs
Jeanne

7. Why focus on families?
Families/caregivers are most often the initiators of health care support
Families are the guardians of important medical and family history information
Families are often the only, or at least, the most valuable way of monitoring for progress of treatment
Families are often the centre of the environment in which the youth is living
Few services exist that orient their support to the whole family
Jeanne

8. Our Model of Care
“Blend expert clinical care with the knowledge & understanding of lived experience to connect families to the right care at the right time.”
Model designed by parents with lived experience
Free service, phone and based
Families/caregivers of youth in the GTA with mental illness and/or addiction
Navigators are clinically trained professionals
Psychiatric oversight in all cases
Peer support through Parent Advocate with Lived Experience
Resource matching, case-management, no time limit
Collaboration and coordination with other service providers
Address needs of the whole family; using family-centred care
Kendyl

9. Underlying Principles:
Navigation includes collaboration between families and health care professionals.
The voices of parents and care givers, the voices of youth and the voices of system stakeholders are all critical – we listen to all
The approach is “relationship-based care”
Kendyl

10. What is Relationship-based Care?
Relationship-based, case coordination and family support:
We create a relationship with the family, that is supportive and longitudinal (“get in the boat”)
We create personal relationships with service providers, both public and private (“connectedness”)
We work in a team approach, leveraging the experience and expertise of all members of FNP, including the Parent Advisory Council and alumni of the program
Kendyl

11. Lived Experience Engagement within FNP
Collaboration between lived experience and clinical staff in the design and implementation of the service
Mutual support shared among families
Advocacy by parents/families on behalf of other families
Shared goals & strategies between staff and families
Decision making, advisory and front-line roles in agencies
Leadership in the community
Kendyl

12. Parent Advisory Council
10 parents with lived experience
Supported design, implementation and operations in all aspects including:
Strategic planning
Role profiles, hiring, training
Development of peer support program
Mapping the network and system
Touring and evaluating health care facilities and providers
Budget planning
Fund-raising
With FNP operations now in place, the PAC is transitioning to an advisory role but is engaged in defining and refining the model with management
Jeanne

13. The Parent Advocate with Lived Experience (PAL) role
Role was co-designed between FNP staff and the PAC
Consulted with dozens of agencies who offer peer and family support during the creation of the role
Functions of role include supporting, educating, mentoring & coaching families within the FNP
PAL will attend & participate in community projects and committees, & advocate for families
PAL will attend site visits to evaluate programming and service environments from a “family perspective”
PAL will participate & help develop educational events & material for families
PAL will consult with the clinical team and provide the family perspective to the navigation process
Jeanne
In creating the PAL role, we consulted with the following agencies:
H.O.P.E.
PCMH
OPDI
CAMH
Halton Families for Families
Ontario Shores Family Council
PLEO
Holland-Bloorview Family Leadership Program
Mt. Sinai NICU Parent Resource Program
Sunnybrook NICU Parent Resource Program

14. The importance of including Family Lived Experience
Lived Experience is the “lynch pin” of the culture of FNP
Ensures the service delivery model is tailored to real needs of the family
Gives families comfort that their experiences are valid & understood
Enables us to develop more trusting relationships with the people we serve
Provides the family perspective at all levels of service
Decreases stigma
Provides support & hope
Jeanne

15. Why is it important to maintain family engagement?
Helps families to develop new capacities & skills that they can use to strengthen their families
Engages and empowers families to work together toward common goals
Maintains commitment & momentum of families who have invested time and effort
Enables services to implement strategies that strengthen families long after the project has ended
Leads to more effective service systems and community initiatives due to “real time” feedback from families
Supports projects to deliver services that meet families without barriers for entry
Jeanne

16. Lived Experience Visioning Session at the FNP
Took place in the spring of 2016
Objectives:
To affirm FNP’s vision of lived experience & develop a shared understanding of how it will guide the model moving forward
To develop shared expectations of how to integrate lived experience throughout FNP
Kendyl

17. Process of Visioning Session
Support from 3rd party facilitator
Identified and interviewed key stakeholders (PAC members, FNP Management and Staff, Sunnybrook Leaderships)
Interviews were conducted in focus group format of 1 to 2 hour sessions with set of questions
Facilitator summarized results and identified strengths, opportunities and challenges
Kendyl

18. Outcomes of Visioning Session
Confirmation of shared commitment to embed Lived Experience throughout FNP
Vision statement for Lived Experience, and a Commitment to Lived Experience Charter for the FNP
Shared practical understanding for how it will guide FNP
Kendyl

19. Next Steps – Visioning Session
A co-created list of specific structures and processes to integrate lived experience into all aspects of FNP
Terms of reference and documents to be created to further define roles and mechanisms for engaging lived experience
Kendyl

20. Additional ways to engage lived experience
Councils and Committees
Peer Support Workers
Working groups
Surveys and Focus Groups
Evaluation Forms
Educational workshops & material
Support groups
Social media
Engaging with schools and/or local cultural centres
Mentoring/coaching
Town Halls
Partnering with other agencies that incorporate Lived Experience
Kendyl

21. System Implications
Creation of a family navigation model and process that can be replicable in other jurisdictions (manualization)
Collect and publish learnings from a model rooted in lived experience
Sharing of effective practices through reporting of program outcomes
Reporting gaps in the system from the perspectives of clinical providers and families
Transforming the system through collaborative care
Kendyl

22. What’s Next Evaluation and Research
Comprehensive and dynamic resource data base
Increase the number of Lived Experience Roles throughout program
Develop and implement a Youth Engagement Strategy
Sustainability of program
Engage in public education and system advocacy
Expansion
Kendyl

23. Questions?