Jason Newberry, Senior Researcher

1. Building a Recovery Focused Mental Health System: Reflections on Systems Change and Growth in Community Mental Health November 7, 2008 Canadian Innovations in Recovery Conference Kitchener, ON Jason Newberry, Senior Researcher Allan Strong, Recovery Education Coordinator

2. Outline of Presentation 1. History and background 2. Overview of the training 3. The evaluation process 4. Preliminary findings, learnings, next steps 5. Questions and discussion

3. Our Purpose Today • To provide an overview of how the mental health system in our region is changing to be more recovery focused. • The background of our local context • The building of a multi-organizational partnership to pursue a recovery focus. • The development of organizational & community training. • To describe the evaluation of “recovery focused case management” in the region. • How consumers contributed to defining outcomes • The evaluation design and approach • Findings so far

4. Background and History • 2005 - Ministry of Health and Long Term care provided funding for the enhancement of case management in the area ( 1.13 million dollars) • Decision about how the money should be allocated must be made by consensus • Planning process involved 3 community agencies, 3 hospitals and an alliance of consumer - survivor groups

5. Organizations Involved in Planning • Waterloo Regional Homes for Mental Health • Grand River Hospital • Trellis Mental Health and Developmental Services • Homewood Health Centre • Cambridge Memorial Hospital • CMHA Grand River Branch • The Self Help Alliance

6. How did we do it? • Developed and agreed to a decision making process • Adopted a statement of values and principles to guide our work • Designed services that were “true” to guiding principles and values 6

7. What does Recovery mean? • What does the word “recovery” mean to you and how would you know when you have recovered? 7

8. The Values and Principles • Statement was developed by the Self Help Alliance • Statement addresses how the system will look if values and principles of recovery put in place 8

9. A recovery oriented mental health and addiction system will : • Value Empowerment – The system will provide opportunities for individuals to exercise control and power with respect to their lives. • Value and Instill Hope – Recovery can not occur without hope. The system will encourage hope and in doing so will focus on skills and abilities.

10. Value Self Determination – The system will recognize and accept that consumers will make their own decisions about their life and they will be in control of those decisions. • Work toward the Elimination of Prejudice and Discrimination – The system will work toward the elimination of prejudice and discrimination toward people with mental health issues.

11. Value Meaningful Choice – The system will recognize and accept that individuals will make their own decisions about their life and they will be in control of those decisions. From these key values, principles were developed - copies of the document are available

12. This approach was different because....... • Started from a shared set of values and principles that were developed by consumers. This has not been usually been the case. • Values and principles provide not only a common understanding but also something to hold each other accountable. 12

13. Setting the stage • Trip to Ohio - service providers went to Ohio • Self Help Alliance had been developing its own programming based on recovery (independent of service providers) 13

14. Consumer and Case Manager Training • A central part of system transformation. • Training of staff in recovery values and principles, and practice. • Training of consumers about recovery and their role in planning 14

15. Consumer and Case Manager Training 15 Since April 2006, 30 staff training sessions. 247 staff (case managers, housing staff, ACTT, management). Since January 2007, 85 consumer training sessions. Over 250 consumers participated. 15

16. Recovery Action Planning 16 Learning the planning process… Six steps: Ranking & selecting a component Determining the status The “MUSE” Determining the goal(s) Identifying skills & knowledge, developing an action plan Community Resources 16

17. We are a non-profit and independent community-based research organization located in Kitchener, Ontario, Canada. We engage in diverse streams of work, including applied research and evaluation, needs assessments, systems change initiatives, training & education, facilitation & planning. Our values emphasize community participation, action, and relevance in the work we do.

18. CCBR was contracted by the community partners to develop an evaluation framework in reference to new system changes. The purpose of the evaluation is to…. “To understand how a recovery focus in the Waterloo-Wellington-Dufferin mental health system leads to positive changes for individuals using case-management services” Building an Evaluation Framework

19. CCBR promotes the use of participatory and collaborative research approaches. In this project, we engaged with consumers in two cities to help us define what the outcomes of the recovery process should be. We also hired and trained consumer researchers – almost all our data from consumers was collected by our consumer researchers. Our Process

20. An important element of our evaluation was the creation of “logic models” – visual diagrams the depict the relationships between CM services and expected outcomes. CCBR developed a set of logic models through community forums with service users and case managers (separately). Synthesized the models and fed them back to our steering committee. The Logic Model Process

21. The logic models helped us gain an understanding of recovery focused outcomes from the perspective of different stakeholders. Helped us plan the evaluation – what to measure, how, and when. The Logic Model Process

22. Intensive Case Management Service Standards (in Ontario) provide standards and indicators of best practices. However, they are not focused on outcomes – the actual benefits experienced by consumers. They are largely focused on service delivery. Example: Where possible, assertive outreach will be offered to engage potential consumers in their place of choice, considering the safety and security of the consumer and the provider. Service provision must be managed in a manner that responds to fluctuations/variations in consumer need. Recovery Outcomes – A Different Emphasis

23. A few of the Standards (and their indicators) approach and outcome orientation (e.g., consumer satisfaction, perceptions of accessibility). Our logic model sessions generated a greater range of outcomes that: add to the Standards, giving a fuller picture of consumer experience. help us think critically about why we think recovery planning will lead to outcomes desired by consumers. are recovery focused and quite different from traditional outcomes (e.g., rehospitalization, medication compliance, etc.). Recovery Outcomes – A Different Emphasis

24. Connecting Increased opportunities, resources & connections to work & volunteering Increased meaningful work and volunteering Increased knowledge of the concept & process of recovery Increased skills & knowledge to pursue goals Increased stability in employment Willingness to take risks, to fail, & to learn from it Sharing the process & success in relationship to others Greater participation in regular, day-to-day community life Acting on one’s own plan for recovery (practicing options) Increased confidence & faith in own decisions, needs, values Sense of renewal, spirit, joy, hope Increased self esteem & sense of dignity & respect People express their identity beyond the mental health system Greater quality of life Feelings of personal empowerment Greater self-fufilment & contentment Housing, Practical Support, Information, & Advocacy Planning Respectful relationships * * Linking to formal health supports Linking to peer support environments Creating social connections with the community Involve & educate family & social networks in person’s health Providing support in acquiring & maintaining adequate housing Providing practical support & resources Developing a proactive & personal plan to prevent crisis Provide information & advocacy re: services, benefits, rights Practical assistance in pursuing career, employment; finances Work with employers to discuss health issues, accomm’s, etc Developing a consumer-driven & realistic wellness plan about future goals Ensure open & transparent reciprocal communication -- honesty in relationship Use of accessible, plain language Providing services that are respectful sensitive to cultural diversity * Developing interpersonal skills & relationship goals Ongoing listening without an agenda Case management occurs where desired Educating consumers about principles of recovery Communicating & exploring options Feelings of support in crisis Increased awareness of legal rights re: discrimination, employment, etc. Improved housing stability * Increased feelings of comfort, trust, & respect for lived experiences Increased sense of control & choice regarding their health, lives Improved overall physical health Increased financial security & stability Increased self-awareness & recognition of reasons of health problems * Increased connections & sense of support in community, social & family life * * Increased choice in accessing different aspects of system or alternative support Minimal disruption to your life when having difficulty Increased resources & support in daily living Outcomes for Service Users (synthesis) A sense of diminished professional boundaries -- more informal relationship, openness, Understanding & believing in your personal goals & dreams Increased confidence in workers & system * * Increased feelings of hope & ability to dream about recovery Recovery Focused Case-Management Logic Model: Outcomes for Service Users Improved mental health & stability Increased movement toward personal goals

25. KEY RECOVERY-FOCUSED OUTCOMES An emphasis on hope and dreaming, risk-taking and action, confidence in the system, and decision making leading to a cycle of recovery.

26. How do we get there…?

27. Priority Outcomes and Questions Service User Model • How and to what extent is a recovery-focused approach to case management helping people gain the skills and knowledge they need to develop their wellness plan and pursue their own goals? • Are people beginning to understand the idea of recovery and what it can mean for their own goals? • How and to what extent is recovery focused approach to case management helping to alter the traditional relationships between case managers and people they support?

28. What is being done to ensure a reciprocal, honest and open relationships between case management and people? • To what extent are people feeling an increased sense of control and choice regarding their health and lives? • To what extent are people beginning to dream about recovery and are hopeful that they will reach their goals? • To what extent are people active in their recovery plan – taking risks, practicing options, and achieving learning and confidence?

29. Priority Outcomes and Questions Service/System Model • What are the experiences, successes, & challenges of the organizations within partnership in building a collaborative, system wide approach to recovery-focused case management? • What is the impact of the training on the knowledge and skills of case managers to promote a recovery focus What are the successes and challenges? • Is a recovery focus apparent in the practice? Are there attitudinal or organizational barriers?

30. Design & Methodology – Service Users • Service User Survey Interview • A mix of demographics, existing & customized scales focused on outcomes, and qualitative questions focused on service use. • This is our main “pre-post” to examine change. • 86 participants • Service User Qualitative Interviews • Qualitative interviews to explore ideas about recovery, its relationship to case management, and expected outcomes. • 9 participants (4 Well.-Duff.; 5 Wat.Reg.)

31. Design & Methodology – Case Managers • Case Manager Online Survey • A combination of custom scale items and open-ended questions to assess: • the implementation of the recovery training • use of the recovery action plan tool in practice • perceptions and attitudes regarding recovery values and practice. • 57 case managers completed the survey • Case Manager Focus Group • To gain a deeper understanding of the survey findings. 10 case managers participated.

32. Design & Methodology – Managers • Management Key Informant Interviews • Interviews with members of the committee to gain insight regarding… • building a multi-organizational partnership • creating system wide service delivery policies • Successes & challenges in translating policy into practice • Future initiatives of the system partnership • 5 key informant interviews were conducted.

33. Feedback on the Case Manager Training • Training has been well-received and appreciated by most case managers. • There was a desire for more training with more practical dialogue, exchange and discussion. • Difficulties with the training, when cited, would appear to linked more so to “difficulty with the tool”.

34. Attitudes & Perceptions • There was very strong support for the principles and values of recovery (80%+ above the midpoint of the scale). • CMs tended to believe that their home organization was doing a good job of incorporating principles and values of recovery – but the system had a long way to go.

35. Use of the Recovery Planning Tool • 41% reported using the tool; 18% with some modifications; 26% were not using the tool • 66% were engaged in 1-5 plans; 23% in 6-10 plans; 11% in 10 or more plans • Explanations for modifying the tool ranged from simple changes to make it a bit easier to significant changes (and abridged summary form). • From the focus group: • “For some clients the smallest amount of paperwork can be intimidating. With 1 hour of flipping back and forth with this cumbersome book, it’s pretty intimidating. Clients say; “I don’t want to go there”. When in fact they have a vision of what recovery is but the book and paperwork in front of them prevents them from moving forward because they are frightened by it.” – focus group participant

36. RE: the Recovery Planning Tool & Process • The tool/process was viewed by CMs as difficult or confusing for some service users and CMs alike. • 44% of CM agreed that many service users are not ready to go through the process; 37% believed the process was not suitable for many service users. • We also heard in some cases the tool wasn’t being used with service users – information was being gathered by CMs and then the tool was being filled out later. • This represents a lack of engagement with the recovery plan process.

37. RE: the Recovery Planning Tool & Process • A very positive finding was that case managers, system-wide, have been truly engaging with the tool to try to improve it and have initiated processes to make it more user-friendly and accessible. • Case managers also reported feeling supported by their supervisors and organizations in the area of recovery planning.

38. Case Managers’ Perspectives on Outcomes • At this point, there is little evidence that relationships between CMs and services users (from CMs perspective) has improved, although a majority of CMs cite “improved communication”. • Perceptions of service user outcomes were only moderate (mean between 4 and 5.5 on a 7-point scale) (see Table 12, p. 38) • This is baseline data, and is expected. It could also be a function of mental averaging of CMs. • We will be following up on this data in the next phase.

39. Service User Evaluation – Demographics • 86 service users participated • 57% were male, 43% female • CM service use ranged from .5 to 39 years, • Average length was 11 years and 6 years for their current agency • 55% had completed H.S.; 21% had college/university; 24% had primary school.

40. Service User Evaluation – Baseline Outcomes • Our survey assessed: • Community Integration • Social Support • Knowledge of Recovery Concept and Own Goals • Hope and Dreaming • Risk-taking, Action and Confidence • Relationships with Staff • Independence and Interdependence • Control and Choice (empowerment)

41. Service User Evaluation – Baseline Outcomes • This is baseline data. We do not expect “good outcomes”, but a range of responses and moderate or low averages. • We appear to have “good measures” – they were internally consistent & reliable, there was lots of variation, there were no “ceiling effects”. • The measures intercorrelated in ways that made theoretical sense: • Better relationships with staff are associated with high MHR scores. • Sense of control is associated with MHR scores. • Greater interdependence, community integration, and social support are associated MHR scores.

42. Increased knowledge of the concept & process of recovery Increased skills & knowledge to pursue goals Willingness to take risks, to fail, & to learn from it Acting on one’s own plan for recovery (practicing options) Increased confidence & faith in own decisions, needs, values Increased sense of control & choice regarding their health, lives Increased feelings of trust, comfort, and respect for lived experience A sense of diminished professional boundaries, informal relationships Increased confidence in workers & the system Increased feelings of hope & ability to dream about recovery STAFF RELATIONSHIPS CONTROL ELEMENTS OF RECOVERY

43. Increased knowledge of the concept & process of recovery Increased skills & knowledge to pursue goals Willingness to take risks, to fail, & to learn from it Sharing the process & success in relationship to others Greater participation in regular, day-to-day community life Acting on one’s own plan for recovery (practicing options) Increased confidence & faith in own decisions, needs, values Increased sense of control & choice regarding their health, lives Increased feelings of trust, comfort, and respect for lived experience A sense of diminished professional boundaries, informal relationships Increased confidence in workers & the system Increased feelings of hope & ability to dream about recovery Increased connections & sense of support in community, social & family life SOCIAL SUPPORT & COMMUNITY INTEGRATION ELEMENTS OF RECOVERY

44. Re: Community integration… “…without the Recovery Plan I don’t think I would have made it to go here or to go there. For example meeting, coming out from the house, catching the bus, coming to meet people is a very good thing for me. Talking to people where I know that I can discuss about my problems.” – service user interview Re: Moving towards recovery... “My case manager put me in a state of mind where I would look forward to the future rather than “just sit on ODSP.” She helps me with self esteem and problem solving. I have confidence now that I can go back to work. My case manager is very supportive and empathetic.” – from the survey

45. Re: the “Cycle of Recovery” – risk, action, confidence “Over time my case manager said: `why don’t you try certain things to see if…go step-by step and see how you might do’….I’m hopeful for achieving my goals considering my past experience in the last 5 or 6 years. I went to school and took 10 courses over 5 years and I did fairly well in all of them. That gives me the motivation then to want to continue to try and do something more if at all possible.” - Service user interview Re: Recovery planning... “My case manager put me in a state of mind where I would look forward to the future rather than “just sit on ODSP.” She helps me with self esteem and problem solving. I have confidence now that I can go back to work. My case manager is very supportive and empathetic.” – from the survey

46. Re: Relationships “It's always very important to me in any relationship that it be a good relationship. However, some of the workers I've had in the past have not respected the fact that if they constantly cancel appointments, if they say they're going to do something and then they don't do it, that affects me. That to me is very difficult….I'm available when I'm supposed to be, and I'm doing that I'm supposed to do and just like with anything I think that that needs to be mutual.” VS. “(In a good relationship) I feel more empowered. I feel like I'm – I've had a good appointment, we've come up with some really good solutions, I'm going to try this and I'm more motivated to keep going during those really tough times.” – service user interview

47. Participation in the Recovery Process

48. Participation in the Recovery Process • Among those who had a plan in process: • 56% had a copy of their plan, 44% did not • Of those with a copy: • 12 (39%) had not consulted their plans • 14 (45%) did so only “rarely” or “sometimes” • 5 (16%) did so “often” • This finding is an area that deserves attention.

49. Future Evaluation – Phase II • Re-administering the service user survey as a time 2 follow up, to compare to baseline. • Re-administering selected pieces of the case manager survey to compare changes over time to practices. • Recommend collecting more qualitative data from a more diverse cross-section of service users. • These three activities comprise the main components of the next evaluation phase. • Questions, Comments?

50. Open Discussion… Think about the Saskatchewan experience… • What are the greatest challenges to pursuing a recovery-focused system in your region (province, city, town, community)? • How can they be overcome? 50