- 1 st International Conference - Community, Work and Family: Change and Transformation

1. - 1st International Conference -Community, Work and Family:Change and Transformation March 16-18, 2005 Faye Porter Vice President, VON Canada & National Director, Care Renewal

2. Community, Work and Family Conference Objectives: • Care • The relationship between care and the rest of life in the context of globalization and social change • Professional practice and policy • Implications of transformations in communities, workplaces and families for policy and practice to improve people’s lives

3. Goals of the Presentation • To position family caregiving and respite in the context of the community, workplace and family • To increase awareness of the Canadian context • To introduce the “Care Renewal: Reaching out to caregivers” project • To review the body of knowledge on respite • To explore the implications for policy, practice & research

4. Working Definition of Respite Respite refers to caregivers’ emotional, psychological, spiritual, physical and/or social relief or renewal which results from services, activities and strategies intended to help them maintain their own health and achieve greater balance in their lives. This in turn enables caregivers to secure better quality of life and greater opportunities for community participation for themselves and the family members or friends for whom they provide care and support.

5. The Language of Respite Respite = Relief from caregiving responsibilities Respite = Relaxation, fun, time for leisure Respite = Recognition of role as partners in care Respite = Choice/Options Respite = Empowerment Respite = Renewal Respite = Community capacity Respite = Respect

6. Canadian Context • 1998 Canadian Association of Community Care National Respite Project • VON with Health Canada funding hosted two Round Tables in 1997 & 1998 • The J. W. McConnell Family Foundation Phase I • Canadian Caregiver Coalition • Founded November 1999 • Senator Sharon Carstairs – Palliative Care Secretariat

7. Canadian Context • Legislative – Compassionate Leave Benefits • Introduced in 2004 • Federal/provincial Health Accord • Political – Minister of State (Families & Caregivers) • Appointment April 2004 • Budget – February, 2005 • $95 million in tax relief for caregivers

8. Background to Care Renewal: Reaching out to caregivers Role of The J. W. McConnell Family Foundation • Canadian Association of Community Care National Respite Project • Phase 1 – VON Canada , “Learning to Listen - Listening to Learn” & seven other projects • Phase 2 – VON as Intermediary for Care Renewal: Reaching out to Caregivers – eight projects across Canada

9. Phase I Outcomes -What we learned • Information is necessary, but not sufficient on its own • Caregivers will not achieve respite as outcome unless they trust that the person they care for is content, well cared for and supported • Relationships are important – building partnership and trust between caregivers, care receivers and service providers • Programs should be as responsive as possible to the priorities of caregivers and care receivers • The same strategies will not work for everyone • Respite initiatives need not be costly

10. Action Taken Paper - A Call to Action: Doing the Right Thing for Caregivers • Set of Guiding Principles • Set of Recommendations: • Champion for caregivers and ensure they have supports and services responsive to their needs and across the continuum of care • Embrace “respite as outcome” • Ensure economic security of caregivers

11. Publication by Silver Donald Cameron, funded by The J.W McConnell Family FoundationPhase 1, Respite for Family CaregiversAvailable on VON Canada’s public web site www.von.ca

12. Organizations Involved in Care Renewal (Phase 2) VON Canada - Intermediary for: • Alberta Caregivers' Association • Canadian Association for Community Living • CLSC René-Cassin, Montreal • Lighthouse, Children & Families/Le Phare, Enfants et Familles, Montreal • MS Society of Canada • Pauktuutit, Inuit Women's Association • Schizophrenia Society of Canada • Seniors Resource Centre of Newfoundland & Labrador

13. Goals of Care Renewal: Reaching out to caregivers • To enhance their quality of life through direct support for their identified needs including, but not limited to, opportunities for breaks from their caregiving responsibilities. • To work with caregivers as full partners in developing, implementing and evaluating policies and practices that affect their lives.

14. Goals of Care Renewal: Reaching out to caregivers • To test and inform the development of policies and practices that provide flexible individualized options for responding to caregivers’ varied strengths, needs and goals. • To increase the awareness and recognition of caregivers’ significant contribution to Canadian society. • To foster a commitment by Canadian society to support caregivers.

15. Caregiver PROMISE As a caregiver, you are the very heart of our caring society. We are here not only to ensure that the work you do is valued and recognized, but also to fulfill your personal need to realize yourself as a unique individual, not only as a caregiver. You deserve to be heard, and to be able to choose how you provide your care. But most importantly, you deserve the opportunity for respite to develop your own personal life to its full potential. We will do everything we can to achieve these goals in partnership with you.

16. Outcome Indicators • Voice • Choice • Respite as Outcome • Caregiver Recognition • Caregiver Empowerment • Sustainability • Knowledge Transfer & Exchange

17. The JW McConnell Family Foundation Family Care Renewal Initiative Recognize the contribution and enhance the quality of life of family caregivers Goal Knowledge transfer of Phase 1 projects Support innovative Phase II projects that focus on respite as an outcome Knowledge transfer of Phase 2 projects Objectives Activities Empowerment Recognition Expected Outcomes for Family Caregivers Choice Respite Voice Sustainability of projects’ outcomes

18. Foundation of Respite • Knowing the care receiver is safe and engaged in a meaningful activity –tenets of service provision. • Access to resources and support to achieve respite as caregivers define it –the right to care. • A committed and responsive system of communities, health and social service organizations, employers, and governments that recognize caregivers as partners in care –the neededsystem response.

19. Framework

20. Commitment to Guiding Principles for Care Renewal • Focus on caregiver as partner in care • Caregiver assessment • Access to an array of services • Coordination and Integration • Education • Caregiver evaluation

21. Considerations for Respite Policy • Gender – mainly women, elderly spouses, middle-aged children • Culture – diverse cultural norms • Eligibility Criteria – limitations, ex. mental health • Demographics – ageing population, de-institutionalization, urban living, changes in nuclear family • Region – access varies in Canada, can create isolation, provincial vs federal jurisdiction issues • Workplace Environment – for working caregivers, employer policies major impact

22. Policy Agenda Respite Policy Day, Health Canada • Synthesis Paper – Body of knowledge to date through VON • Policy Lens for policymakers • Consultation Day • Redefined Policy Lens – reinforcing guiding principles

23. Policy Agenda (cont.) Other areas of action: • Minister of State (Families & Caregivers) • Support public consultation • Provide recommendations to address caregiver needs

24. Current “Practice” Obstacles toExperiencing Respite • Lack of information • Focus of services – not on caregiver • Inflexible models of care delivery • Limited availability of services • Restrictive criteria

25. Obstacles toExperiencing Respite (cont.) • Not culturally sensitive • Unequal access to service • Waiting list • Limitation of human & financial resources • Financial barriers creating hardship for caregivers

26. Practice Agenda • Promote and advocate for caregivers as “Partners in Care” – ex, VON Canada Model of Care • Promote caregiver assessment tool • Promote flexibility & array of services • Advocate for caregiving “Best Practices” • Ex., VON Canada Best Practice Manual, available at www.von.ca

27. Research Agenda Developing & maintaining connections: • Supporting evaluation nationally & by project • National Advisory Panel • International review of caregiving policies & practices - Mount St. Vincent • Dr. Janice Keefe, Research Chair on Ageing & Caregiving Policy • University of Alberta: • Hidden Costs - Invisible Contributions

28. On the Horizon Repositioning Care Renewal - Building Capacity: • Social Capital • Social Networks • Social Innovation

29. Next Steps Multifaceted approach • Care Renewal - next 2 years • Evaluate outcome indicators • Knowledge Exchange & Transfer – internal & external • Advocate for caregiver needs – practice, policy & research • Support Minister of State & public consultation regarding National Strategy • Support the Canadian Caregiver Coalition in developing a National Strategy for Family Caregivers - www.ccc-ccan.ca • Engaged and learning from practice settings, applying research in Canada and beyond

30. Care Renewal: Reaching out to Caregivers Questions/Comments