Together Towards Recovery: Exploring the National Guidelines for a Comprehensive Service System for Family Caregivers of Adults with Mental Health Problems and Illnesses Presented by: Francine Knoops, Chris Summerville and Liz Wigfull 10:30-11:45a.m., September 11, 2013 Winnipeg, Manitoba,

/ 2 Welcome and Introduction Todays speakers: Chris Summerville Executive Director, Manitoba Schizophrenia Society Liz Wigfull Knowledge Broker, Mental Health Commission of Canada Francine Knoops Lead, Strategic Policy and Stakeholder Engagement Mental Health Commission of Canada

/ 3 Presentation Overview TopicSpeaker Welcome and Introductions Overview of MHCC Liz Wigfull Overview of the Mental Health Strategy for CanadaFrancine Knoops Whats it like for caregivers these days? How can the Guidelines make a difference? Chris Summerville Guidelines Overview From Guidelines to Action Francine Knoops Liz Wigfull Questions and DiscussionLiz Wigfull Wrap-upLiz Wigfull

/ 5 1. What percentage of Canadian adults provides care to a family member, friend or neighbour living with a serious illness? a) 1% b) 2% c)10% Do you know…?

/ 6 2. What percentage of family caregivers have been providing care for more than five years? a) 28% b) 32% c) 47% Do you know…?

/ 7 3. What percentage of family caregivers felt that there was no other option but to provide care? a)38% b)52% c)72% Do you know…?

/ 8 4. What percentage of family caregivers pay out- of-pocket expenses to compensate for inadequate social assistance for people living with mental illnesses? a)60%b) 70%c) 80% Do you know…?

/ 9 5. What percentage of caregivers lost income due to caregiving responsibilities? a) 13%b) 19%c) 27% Do you know…?

/ 10 The Mental Health Commission of Canada Who are we? The Mental Health Commission of Canada Who are we?

/ 11 Mental Health Strategy for Canada A strategy for all people in Canada Built on F/P/T initiatives Establishes common priorities Ambitious but practical recommendations for action Adaptable in each jurisdiction Input from thousands of Canadians & from governments across the country

/ 12 Two-phase process VISION: All people in Canada have the opportunity to achieve the best possible mental health and well-being.

/ 13 Key Challenges Breadth: balance interests of broad and diverse interests and stakeholders Constitutional context: clear directions for change without being prescriptive Accountability: a mental health strategy for the whole country but no authority to implement it

/ 14 Six Strategic Directions 1. Promoting mental health and preventing mental illness & suicide 2. Fostering recovery and upholding rights 3. Providing access to the right services, treatments and supports 4. Reducing disparity and addressing diversity 5. Working with First Nations, Inuit and Métis 6. Mobilizing leadership and fostering collaboration

/ 15 Strategic Direction #1 Strategic Direction 1: Promote Mental Health Across the Lifespan in Homes, Schools and Workplaces & Prevent Suicide & Mental Illness where possible Awareness and stigma reduction Infants, children and youth Workplaces Older adults

/ 16 Strategic Direction #2 Strategic Direction 2: Foster Recovery & Well-Being and Uphold Rights Reorienting policy and practice toward recovery Involvement in decision-making at all levels Uphold rights and address discrimination Reduce over-representation in criminal justice system

/ 17 Strategic Direction #3 Strategic Direction 3 Provide Access to the Right Combination of Services, Treatments & Supports, When & Where People Need Them A full range of services, treatments and supports: primary health care community-based mental health services specialized mental health services peer support supported housing, education and employment

/ 18 SD 3: The importance of INTEGRATION Acute, Intensive, Highly Specialized Housing, Income, Employment Primary Healthcare Peer Support Community Mental Health

/ 19 Strategic Direction #4 Strategic Direction 4: Reduce Disparities in Risk Factors and Access To Mental Health Services Strengthen Response to Needs of Diverse Communities And Northerners Social determinants of health Immigrants, refugees, ethno-cultural and racialized groups Northern and remote communities Minority official language communities Gender and sexual orientation

/ 20 Strategic Direction #5 Strategic Direction 5: Work with First Nations, Inuit, & Métis to address their mental health needs, acknowledging distinct circumstances, rights and cultures Coordinated continuum mental wellness services by and for First Nations Coordinated continuum of cultural and clinical mental wellness services by and for Inuit Métis mental health capacity through engagement and research Urban and rural mental health issues, & complex social problems regardless of where people live

/ 21 Strategic Direction #6 Strategic Direction 6: Mobilize leadership, improve knowledge, & foster collaboration at all levels Whole-of-government & cross-sectoral coordination Data, research and knowledge exchange Human resources, guidelines and standards Leadership of people with lived experience, families

/ 22 Call to Action Not just about government : everyone has a role to play Funding Proposal : 2% points increase Two-track approach to measuring progress

/ 23 Whats it like for caregivers these days? Factors that affect a caregivers experience: historical and current experience of the person they are caring for own age, health, location employment status gender ethnicity language

/ 24 Common caregiver priorities and needs: Relatives quality of life Recognition and respect for their caregiving role Information and opportunities for building skills Recognition of personal needs Whats it like for caregivers these days?

/ 25 The Caregiving Journey Chriss story as caregiver and how the Guidelines can make a difference

/ 26 Guidelines Overview: the What Presents a vision and blueprint for a comprehensive, principle- based, evidence-informed system of care that supports family caregivers to provide the best possible care to adults living with mental illness while maintaining their own well- being.

/ 27 Guidelines Overview: the Why (Purpose) Guide system planners, policy makers and service providers For planning, implementing and evaluating mental health care services Recognize and address the unique and urgent needs of family caregivers

/ 28 Guidelines Overview: the How Led by members of the former Family Caregiver Advisory Committee Development: literature review, consultations with caregivers, people with lived experience & service providers Iterative process among MHCC staff, academic consultant & Committee.

/ 29 Components of the Guidelines Who are the caregivers, what do they do, and what do they need? Principles and Values What to consider in planning services System of support for family caregivers What facilitates system change Summary of recommendations Process to develop the Guidelines

/ 30 Principles and Values Individual : engagement, respect, choice & self determination, distinct needs, sustainability System level: Caregiver inclusion, accessibility, diversity, sustainability, collaboration, evidence informed, fairness & equity, recovery focused, mental health promotion. Policy lens to help plan and design services based on these values.

/ 31 What to consider in planning services -Family information needs on accessing services -Addressing stigma -Diversity of Families -Culture competency -Challenges of rural and remote families -Life course, roles and relationships

/ 32 System of support Transformed recovery oriented programs recognize caregivers Pyramid of Family Care – integrated and coordinated care and support for families : 5 levels Role of family caregiving organizations Clinical considerations Support outside health service system : respite, financial, workplace,future planning

/ 33 Factors to facilitate transformation -Families participate in reviewing, planning & evaluating services -Resource family caregiver support programs -Service provider practice guidelines on working with families -Increase community capacity to support families -Dedicated family coordinator role -Refer family caregivers to caregiver support organizations -Research effectiveness of family caregiver support and services -Strike a cross sectoral task force to translate guidelines into action plan

/ recommendations in 5 categories Integrating Family Support into Mental Health Services Training and Support for Mental Health Service Providers Government and Policy Intersectoral Partnerships Public Awareness

/ 35 From Guidelines to Action: Next Steps Development of a champions toolkit Action Table with Canadian Cancer Action Network Webinars

/ 36 Questions...

/ 37 Discussion question: How could you use these Guidelines in your own work?

/ 38 Thank you! Liz Wigfull, Knowledge Broker: Francine Knoops, Lead, Strategic Policy and Stakeholder Engagement: For more information on the Guidelines, please contact MHCC at