Ethical Toolkit

1. Ethical Toolkit Training Session For First Nations, Métis, OR Inuit Programs and Services Ethical Review Committee Members

2. Training Session Outline Day One • Opening remarks and introduction of participants • Overview of the ethical toolkit • Implementing the ethical toolkit • Lunch • Viewing and discussion of “Do you find this unethical, partner?” • Case study

3. Training Session Outline Day Two • Case study (cont.) • Lunch • Application of the ethical toolkit to areas outside of health • Viewing of “Child Welfare: The State as Parent” • Wrap-up, discussion and next steps

4. Overview of the Ethical Toolkit

5. Purpose • The purpose of the ethical toolkit is to provide to First Nation, Inuit and Métis health care and social service leaders, administrators, practitioners and front-line workers an innovative resource to redefine their relationship with federal and provincial/territorial governments and other outside funding agencies. • Included in the framework are accountability standards required of the outside funder by the community, organization or group throughout the period of the intervention.

6. Ethical Toolkit Goals • Reduce and eliminate risk to vulnerable individuals and groups resulting from the introduction, delivery or termination of any and all front-line health care and social services prevention and intervention programming. • To make equitable and reciprocal levels of accountability between outside funding agencies and Métis, Inuit and First Nations communities and organizations.

7. Ethical Toolkit Goals • To assist in creating an ethical relationship between Métis, Inuit and First Nations communities and organizations and their outside partners (government and non-government) in health care and social services design and delivery. • To prevent risk to vulnerable clients and to front-line workers delivering health programming resulting from intentional or unintentional harmful program design, implementation and termination practices.

8. Ethical Toolkit Goals • To assist in protecting against the “watering down” of evidence-based or “best practice” models of programming in ways that place vulnerable individuals/populations and/or front-line workers at risk of experiencing harm. • Across the spectrum of design, implementation and termination to determine from a Métis, Inuit or First Nations perspective “best practices” for ethical delivery of health care and social service interventions targeting vulnerable individuals/populations.

9. Background • The idea for the toolkit comes out of community-based participatory research data and analysis guided by Indigenous stakeholders from across Canada and by the First Nations, Inuit and Métis Advisory Committee to the Mental Health Commission of Canada.

10. Methodology • Forms of data collection • 2009 national roundtable on ethics and Indigenous mental health and addictions • Two working papers exploring ethics from various vantage points were completed. The documents review the research and gray literature on ethics, with a focus on biomedical, public health and Indigenous ethics • Two educational documentaries were completed

11. How Communities Can Benefit • Currently, government systems and processes fail to include formal ethical standards in community partnership engagement and in policies, programming and funding decisions that target vulnerable and marginalized groups. • By modifying and using the toolkit, First Nations, Inuit and Métis communities and organizations will have an ethical foundation upon which they can negotiate health and social welfare agreements with governments.

12. Introducing the Ethical Toolkit • Create a Programs and Service Ethics Committee (PSEC). • The committee can be new or an expansion of the duties of the local research review committee, if one exists. • The role of a PSEC is to review and make recommendations on health care and social services related policies and initiatives proposed by federal and provincial/territorial government departments or other outside funders.

13. Introducing the Ethical Toolkit • The PSEC serves as a protective body for community and organizational interests, ensuring the design, delivery and termination of health and social welfare policy, programs and services introduced to the community or organization from outside meet ethical standards for work with vulnerable populations. • Separate committees can be set up for health care and for social welfare or they can be combined into a single committee.

14. Introducing the Ethical Toolkit • The role of the PSEC is to review existing and proposed health and social services policies and programming (prevention, intervention and promotion) using a set of ethical guidelines approved by the community or organization. • If a proposed policy, program or service does not meet ethical standards, the committee will make a series of suggested changes that the funder is required to make in order for the initiative to proceed.

15. Introducing the Ethical Toolkit • The committee should be made up of approximately 6-10 members, including a chair and a designated note-taker. • The chair is responsible for reviewing each proposed initiative and providing a summary to committee members prior to the committee’s discussion. • In the review the chair provides any pertinent information that is excluded from the proposal, a general overview of what is being proposed and areas that may be of concern to the committee.

16. PSEC Mission Statement The mission of the Programs and Services Ethics Committee is to ensure that ethical standards of care are met within all health and social welfare policies, programs and services introduced to the community or organization by federal and provincial/territorial governments and other agencies. In this context, the PSEC will, for both the community or organization (including front-line workers) and clients who are targeted by initiatives, monitor and work against potential harms resulting from the introduction, implementation and termination of all health and social welfare initiatives.

17. Program and Service Ethics Committee • Example One: Reserve—First Nations • Elder (2) • Band council health representative (1) • Band council social services representative (1) • Health director (1) (co-chair) • Child and Family Services director (1) (co-chair) • Senior front-line worker (2) • Front-line worker (2) • Service recipients (2)

18. Program and Service Ethics Committee • Example 2: Urban—front-line services • Elder (2) • Executive director (1) • Board member (1) • Health programs director (1) (co-chair) • Child welfare director (1) (co-chair) • Senior front-line worker (2) • Front-line worker (2) • Service recipient (2)

19. Modifying the PSEC Membership • Who is targeted by the program/service? • Are all potential stakeholders included on the committee? • Are the voices of the most vulnerable present and respected? • Is the committee empowered to make recommendations?

20. PSEC Committee Process 1. PSEC chair(s) reviews and summarizes information received from funder about proposed project(s) and funding opportunity. 6. Final project proposal and partnership agreement is reviewed and signed by PSEC committee and the funder. 2. Committee meets to review the project(s) and makes recommendations. 3. PSEC chair(s) submits committee’s review and recommendations to the funder for review. 5. PSEC chair and local health care leaders work with funder(s) to revise proposal to meet ethical standards. • 4. PSEC recommendation: • Acceptance • Acceptance with minor changes • Acceptance with major changes • Rejection of project and funding

21. Implementing the Toolkit

22. Introduction of New Interventions by Government • Government department introduces a new program that targets certain communities or organizations • Some form of programming design is provided with the funding and is based upon “best practice” evidence from the medical research literature. Modification to programming to meet local circumstances, training of workers and evaluation are areas where there may or may not be resources assigned.

23. Introduction of New Interventions by Government • Government department requests communities or organizations to submit proposals in a certain area of interest • The government funds successful proposals either as pilot projects or short-term contracts (1-5 years). Communities or organizations have the opportunity to submit ideas that are locally derived to meet the needs of clients, however generally these proposals draw upon local, government and scientific knowledge/evidence in their design.

24. Risk Assessment Potential risk can be determined by questioning: • Does the program/intervention target a vulnerable group? • Does potential risk exist for individuals or families targeted by the intervention? • Is there potential risk to front-line workers? • Is there any risk to the broader community or organization?

25. Ethical Guiding Questions: Programming • Is the program/funding introduced based upon an existing “best practice” or “evidence-based” model? • Does the funder provide details about the application of the “best practice” model? • Does the funder allow for modifications of the model based upon local circumstances and realities? • Does the funder provide adequate resources for optimal success of the program, including the protection of vulnerable clients and front-line workers?

26. Ethical Guiding Questions: Funding • Does the overall funding structure support optimal conditions for the success of the initiative? • Is there a funding and programming accountability policy that outlines mutual accountability expectations for the funder and community or organization? • Does the funder allow for budget flexibility if modifications to the intervention are required in order to meet local needs and circumstances?

27. Ethical Guiding Questions: Client • Does the intervention have clear policies and an implementation plan that ensures the protection of vulnerable clients at all phases of the project? • Does the intervention have a client disengagement policy that ensures the protection of vulnerable clients? • Does the intervention have a client-helper relationship policy that addresses equal and healthy relationships between the client and the front-line worker/program?

28. Ethical Guiding Questions: Client • Does the intervention have clear policies and procedures to ensure that all information shared by clients, recorded in client files and collected for evaluation or research purposes is kept confidential? • Does the intervention have clear policies and procedures to obtain informed consent from clients or from guardians or parents of children involved?

29. Ethical Guiding Questions: Workers • Are workers empowered to provide programs and services that meet the ethical standards of the PSEC? • Are policies in place to protect workers’ interests and confidentiality if they voice concerns about anticipated or unanticipated negative impacts on them and/or their clients resulting from some aspect of the initiative design or implementation?

30. PSEC Recommendations • Option 1: Acceptance of the proposed program or service without change to its design or funding. • Option 2: Acceptance of the proposed program or service with minor changes required by the funders and/or community/organizations. • Option 3: Acceptance of the proposed program or service with major changes required by the funders and/or community/organizations. • Option 4: Rejection of proposed program or service.

31. Factors for Success • Collective support from local leadership, regional governing bodies, provincial/territorial and national governments. • Political stability and leadership within the community or organization is necessary to create the level of continuity needed to establish positive and healthy relationships between the community or organization and outside funders.

32. Factors for Success • Leadership and champions of ethical standards can come from all levels of government as well as from local elders who have knowledge of linguistic and cultural understandings that compare, expand and explain the meanings of local concepts that equate to Western concepts such as “ethics,”“moral governance,”“risk” and “ethical space.” In every local context it is important to identify champions who are individuals who will make a concerted effort to advance this idea within the community or organization, and as importantly with federal and provincial/territorial governments who provide funding and programming support.

33. Factors for Success • Government readiness and cooperation: Success of the PSEC will rely to a certain level on government readiness in recognizing the importance of cultural safety and ethical responsibility. Widespread adoption of the toolkit and advocacy work are necessary to encourage government (funder) support and participation.

34. Factors for Success • Collaboration and reconciliation: As a grassroots movement, the ethical toolkit is intended to transform the current relationship that Indigenous communities and organizations have with government funders. This requires a commitment to nation-to-nation collaboration in building ethically and culturally safe processes. Recognition by both parties that the status quo is not working for Indigenous peoples and that health and social welfare policies and programming are greatly enhanced by ethical standards that are derived from both Indigenous and Western worldviews will support the reconciliation of past wrongs created by colonial policies and practices and experienced by Indigenous peoples.

35. Documentary 1: Do You Find this Unethical, Partner?

36. Documentary 1: Questions for Discussion • What do you think ethics is or what does ethics mean to you? • What makes a healthy community? • What are other examples of transition moments that can lead to harm in the health care system? What can be done about them? • What can be done at the community level to address these issues?

37. Documentary 1: Questions for Discussion • Who is currently involved in making funding/program delivery decisions for your community? • What are some examples of funding or program cuts or gaps that have affected you or your community? • How does accountability currently work and is it working?

38. Case Study • Application of a Best Practice Fetal Alcohol Syndrome Prevention Project in Northern Saskatchewan First Nation Reserve Communities (Tait, 2008) • Outlines the implementation of a mentorship program intended to reduce the risk of Fetal Alcohol Spectrum Disorder (FASD) births in four northern reserve communities.

39. Case Study An ethical review of this program would have flagged the following: • funding commitment—three-year pilot • lack of adaptation of the program to fit the community • watering down best-practice models • reporting requirements (through FNIHB and NITHA) • questioning why a proven “best-practice model” was being piloted rather than implemented as a permanent program may have addressed the stop-start nature of the program

40. Application of the Toolkit • Areas outside of health: • Child welfare • How can delivery of child welfare services in communities benefit from a review using the tools in the ethical toolkit?

41. Documentary 2 Child Welfare: The State as Parent

42. Documentary 2: Questions for Discussion • What is the best way to ensure the well-being and safety of children? • What are individual and community responsibilities towards children? • What needs to change with the current system and how can we make this happen? • What are some of the ethical considerations around the current child welfare system?

43. Wrap-up and Discussion • Questions • Next steps