Presented by: Francine Knoops, Chris Summerville and Liz Wigfull

1. 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 Today’s speakers: Francine Knoops Lead, Strategic Policy and Stakeholder Engagement Mental Health Commission of Canada Chris Summerville Executive Director, Manitoba Schizophrenia Society Liz Wigfull Knowledge Broker, Mental Health Commission of Canada

3. Presentation Overview

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?

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 Framework: Vision and broad goals Strategy: Priorities for action 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 • Promoting mental health and preventing mental illness & suicide • Fostering recovery and upholding rights • Providing access to the right services, treatments and supports • Reducing disparity and addressing diversity • Working with First Nations, Inuit and Métis • Mobilizing leadership and fostering collaboration

15. 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 Strategic Direction #1

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

19. Strategic Direction 4: • Reduce Disparities • in Risk Factors and Access To Mental Health Services • Strengthen Response to Needs • of Diverse Communities And Northerners Strategic Direction #4 • 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: Work with First Nations, Inuit, & Métis to address their mental health needs, acknowledging distinct circumstances, rights and cultures Strategic Direction #5 • 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: Mobilize leadership, improve knowledge, & foster collaboration at all levels Strategic Direction #6 • 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. What’s it like for caregivers these days? • Factors that affect a caregiver’s experience: • historical and current experience of the person they are caring for • own age, health, location • employment status • gender • ethnicity • language

24. What’s it like for caregivers these days? Common caregiver priorities and needs: • Relative’s quality of life • Recognition and respect for their caregiving role • Information and opportunities for building skills • Recognition of personal needs

25. The Caregiving Journey Chris’s 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

34. 41 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 champion’s 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: lwigfull@mentalhealthcommission.ca • Francine Knoops, Lead, Strategic Policy and Stakeholder Engagement: fknoops@mentalhealthcommission.ca • For more information on the Guidelines, please contact MHCC at info@mentalhealthcommission.ca