Leading Recovery: National Conference on Peer Support April 27-29, 2016 By Families, for Families: Engaging & collaborating with youth, families & community

Overview What is the Family Navigation project? – History – Principles – Model Lived Experience & Family Engagement? – The PAC – What is Family Engagement/Lived Experience – The PAL role – Lived Experience Visioning Session What’s Next? - System Implications - Next Steps

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?

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

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 Parents with lived experience have been involved in all aspects of program design and implementation

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 demand. During that time we have helped over a thousand families.

Underlying Principles: Navigation includes collaboration between families and health care professionals. We listen to the voices of parents and care givers, the voices of our youth and the voices of system stakeholders. The approach is “relationship-based care”

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 (“connected- ness”) We work in a team approach, leveraging the experience and expertise of all members of FNP

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.” Phone and based free service Families/caregivers of youth in the GTA with mental illness and/or addiction Psychiatric oversight in all cases Resource matching, case-management, with no time limit Collaboration and coordination with other service providers Address needs of the whole family; using family-centred care

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 Historically, families have been left out of treatment planning because of: – Privacy issues/consent issues – It takes extra clinician time, or time away from care of the identified client – Families/caregivers can add to the complexity of care (bias, own MHA issues, etc.)

Our Present Structure: 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 role – 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

What is Family Engagement? Collaboration between lived experience and clinical staff in the co-creation of the design and implementation of service Mutual support shared among families Advocacy by parents/families on behalf of other families Shared goals & strategies Decision making, advisory and front-line roles in agencies Leadership in the community

Why is it important to maintain family engagement? Helps families to develop new capacities & skills that they can use to strengthen their families “Real time” feedback from families leads to more effective service systems and community initiatives Engages and empowers families to work together toward common goals To maintain commitment & momentum of families who have invested time and effort To continue to implement strategies that strengthen families long after the project has ended Meeting families without barriers for entry into services

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

Creating the PAL role 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

The PAL role Support, educate, mentor & coach families of the FNP Provide information & guidance to parents Attend & participate in community projects and committees, & advocate for families Attend site visits to evaluate from a “family perspective” Participate & help develop educational events & material for families To consult with the clinical team and provide the family perspective to the navigation process

Lived Experience Visioning Session 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

Process of Visioning Session Identify and interview key stakeholders 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

Outcomes of Visioning Session Confirmation of shared commitment to embed Lived Experience throughout FNP Vision statement for Lived Experience and a shared understanding for how it will guide FNP

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 to be created to further define roles and mechanisms for engaging lived experience

Additional ways to engage lived experience Councils Peer Support Workers Working groups Surveys 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

System Implications Creation of a family navigation model and process that can be replicable in other jurisdictions (manualization) Learnings from a model entrenched in lived experience Reporting gaps in the system Transforming the system through collaborative care Sharing of effective practices through reporting of program outcomes

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

Our Environment Sunnybrook Parent Advisory Council Public Service Providers Private Service Providers LHINsMCYS Lead Agencies Family +

Questions?