National Council for Behavioral Health

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1 National Council for Behavioral Health Domain 2: Consumer Voice, Choice and Advocacy Presenters: Cheryl Sharp, Anna Gray, and Reba Smith June 13, 2016

2 Today s Presenters Anna H. Gray, M.Ed., C.P.S. Consultant PRO International Cheryl Sharp, MSW, MWT Senior Advisor for Trauma-Informed Services National Council for Behavioral Health Reba Smith, M.S. Consultant National Council for Behavioral Health

3 Overview Listening to Customers Empowering Consumers What Does this mean in a Trauma-informed Organization Listening to the Voices

4 Principles of a Trauma-Informed Approach Safety Trustworthiness and Transparency Collaboration and Mutuality Empowerment Voice and Choice (Fallot 2008) 4

5 Polling Question 1 We have at least 2 consumers/peers who are currently or have received services in the past from our organization on our core implementation team? Yes No We have peer support workers/specialists/family advocates on our core implementation team? Yes No 5

6 Domains of Trauma- Informed Care (OSA) Domain 1: Early Screening & Comprehensive Assessment of Trauma Domain 2: Consumer Driven Care & Services Domain 3: Trauma-Informed, Educated & Responsive Workforce Domain 4: Provision of Trauma-Informed, Evidence-Based and Emerging Best Practices

7 Domains Domain 5: Safe & Secure Environments Domain 6: Community Outreach & Partnership Building Domain 7: Ongoing Performance Improvement & Evaluation Sustainability

8 How Does Consumer Voice, Choice and Advocacy Apply to Each Domain?

9 Domain 1: Screening and Assessment Implementing Screening and Assessment process vetted by consumers/peers Consumers/peers were surveyed to determine how comfortable they are answering screening and/or assessment questions Consumers/peers are offered an option to answer or not answer screening and assessment questions Consumers/peers are offered the option to be screened and assessed at a later date Does the process offer consumers/peers options to pursue services that are trauma-informed?

10 Domain 2: Consumer Driven Care and Services There is consumer representation on the following: Policy and procedures committees Key standing committees Task forces Workgroups New staff interviewing and hiring panels Councils Advisory and agency boards

11 Domain 2: Consumer Driven Care and Services Consumers/family/peers employed in various positions directly influence the provision of services Consumers/family/peers are hired to provide: Direct services such as leading and co-leading groups Advocacy such as participating in service planning at the request of the consumer Welcoming and orienting new consumers/families to the organization Involvement in orientation and training of all new and existing staff in trauma-informed care and services

12 Domain 2: Consumer Driven Care and Services Formal Feedback Formal system in place to: Continuously gather consumer feedback Identify problem areas Make improvements as needed

13 Domain 2: Consumer Driven Care and Services High priority placed on assessing consumers/peers perception of: Safety Choice Collaboration Trust Empowerment Done through: Surveys / Focus Groups Advisory Councils Discharge Interviews

14 Domain 2: Consumer Driven Care and Services Consumer s voice and choice are respected and encouraged Consumers receive information about their rights and program opportunities: Education/information about the impact of trauma Exploration of options to ensure that they participate fully in making informed decisions about every aspect of their care Programs avoid direct or subtle coercion or punitive actions when consumer choices/preferences are inconsistent with program recommendations (in other words the program serves the person rather than the organization)

15 Polling Question 2 We have hired at least one Peer Support Specialist since we joined this Learning Community or are planning to add peers to our workforce in the near future Yes No Our Peer Support Services are reimbursable through Medicaid Yes No

16 Domain 3: Trauma-Informed Educated and Responsive Workforce Leadership has communicated that every employee is crucial to and committed to a trauma-informed seamless system of care by: Encouraging consumers/peers to speak up and have their voice heard Every person served is a customer deserving of choice, dignity and respect As customers, leadership listens to consumers voice and choice regarding who is helpful and who is hurtful Staff understands that their trauma-informed/non-trauma-informed behaviors impact performance reviews Staff is acknowledged for the ability to listen; trained for care and compassion Staff also has a voice

17 Polling Question 3 We have engaged consumers/family advocates as co-presenters in at least one staff training event Yes No We have included a consumer/family advocate on our hiring panel Yes No

18 Domain 4: Evidence Based and Emerging Best Practices Focus on What s strong, rather than what s wrong Focus on What happened, rather than what s wrong Menu of options are offered that support consumer/peer empowerment, self-directed practices and recovery Array of trauma-specific or trauma-focused treatment/recovery options are clearly described and offered Individual and group educational materials, informational materials (e.g. websites, brochures, surveys, newsletters) reinforce and inform practices that support healing from adverse experiences

19 Domain 4: Evidence Based and Emerging Best Practices Peer delivered opportunities are highlighted equally with therapeutic approaches in accordance with the consumer s preferences (WRAP, WHAM, DBSA, Seeking Safety) Service planning process is designed to include key members of the consumer s support network, (e.g. relatives, caregivers, residential staff, probation officer)

20 Domain 4: Evidence Based and Emerging Best Practices Consumers are fully involved in decisions related to service planning; the selection of services and methods and review of progress and changes to their service plan including; medication changes and choice of practitioners and number and types of services. Service plans are designed to ensure that consumers identify their personal strengths, goals, and express agreement with their service plan

21 Domain 4: Evidence Based and Emerging Best Practices In accordance with the consumer s expressed preferences, the organization promotes collaboration, continuity and coordination of care with other service providers and organizations involved in supporting and treating the consumer (e.g. primary care, inpatient general/psychiatric hospitals, residential services)

22 Domain 5: Creating Safe Environments Organization maintains a safe and secure environment team, including: Consumers/peers to continually assess and correct areas requiring improvement Representatives from leadership Practitioners Support staff Leadership communicates that consumer voice is listened to and recommendations regarding the environment are addressed with consumers informed of same Region 3 Environmental Scan

23 Domain 6: Building Community Partnerships The organization assumes a leadership role in engaging and educating community partners (e.g., courts, police, emergency services, primary care, hospitals, residences, mental health and substance use programs, the general public, etc.) about trauma-informed care

24 Domain 6: Building Community Partnerships Engage and invite partners to participate in service planning and coordination of care meetings with consumer permission External partners include: Primary care facilities Substance use treatment programs Criminal justice system Residential programs Emergency departments Foster care programs

25 Domain 6: Building Community Partnerships Organization takes a leadership position to train and educate partners in trauma, its impact and traumainformed care Consumers/peers are included as presenters in staff trainings as well as in community education

26 Domain 7: Ongoing Performance Improvement and Evaluation The organization has a system in place to regularly measure performance on each of the core trauma-informed care domains The organization shares data related to trauma-informed care improvements with consumers in a manner that is clear and concise Organization uses a variety of methods, including consumer satisfaction surveys to identify and address improvement goals in each domain

27 Polling Question 4 We have made changes to our policies and procedures to engage consumers throughout the organization Yes No

28 Family Partners and Advocates Having a Voice Finding a Connection Building Bridges Navigating Systems

29 Barriers and Challenges Uniqueness of the role Personal family dynamics Finding and cultivating people to fill positions Potential employees understanding their value Boundaries - the sand trap

30 Anna H. Gray, M.Ed. Consultant in Recovery and Trauma Focused Services PRO International

31 Domain 2: Consumer Driven Care & Services Requires a paradigm shift Behaviors as adaptations to trauma vs symptoms People served as full partners in the success of the organization Person served is in the drivers seat The voice of people served speaks for the unspoken experiences of staff The people who seem to complain the most are our best allies Treatment = trauma informed listening to the person served as expert Peer Support is necessary at all levels of service

32 Benefits of Consumer Driven Care and Services Trauma informed care is very similar to recovery based services Systems that have a culture of wellness and recovery show better outcomes Person centered and consumer driven approaches lead to value based systems instead of rule and force based systems Staff morale is higher in services that yield positive results in the lives of the people they serve When the people served identify issues with the system of care and the cultural/environmental unsafe practices, everyone benefits People receiving services are accustomed to voicing issues pertaining to feelings and psychological well being, they become the voice of staff who have adverse experiences and do not talk about them

33 What Does it Take?

34 It Takes a Paradigm Shift Listening through a trauma informed lens we are likely to see evidence of prolonged stress reaction and adaptive behaviors for survival instead of symptoms. When I look for illness and pathology I see an organism to be treated that is ill. When I look for wellness and thriving I can see a human being able to live a fulfilled life.

35 Training and Co-learning of TIC TIC for Everyone Training on Trauma Informed Care is for everyone in the organization, including all of the people served. Include them in staff training groups as they have the same need for trauma awareness.

36 Domain 2: Consumer Driven Care & Services Four Main Standards: A. We are at the decision making table B. We are a vital part of the workforce C. We get to give feedback and influence the system D. Our voice and choice are respected our lives matter we are in the drivers seat

37 Standards in Practice You asked me to do it your way and in the process I lost my voice. I learned to react in anger to stay safe and in the process I lost being heard. Be aware that it may take me some time to realize that I have a voice and that someone is willing to hear it. This is required for all of the standards and especially in my treatment

38 When I AM NOT in the Driver s Seat The voices in my head sound a lot like my case manager, my doctors, my mother, my sister, my pastor/priest/imam/rabbi/all of the above, the adds on TV, my friends, well meaning others, etc., etc., etc. They are all talking about me, at me, telling me how to live my life. If I am asked my opinion, it is usually used to gage how compliant I am.

39 When I AM in the Driver s Seat I get to talk I say what matters I share my expertise You listen You clarify what matters You share your expertise Together we develop a plan that works for my life and my hopes and dreams

40 Domain 2: Consumer Driven Care & Services Four Main Standards: A. We are at the decision making table B. We are a vital part of the workforce C. We get to give feedback and influence the system D. Our voice and choice are respected our lives matter we are in the drivers seat

41 Standards in Practice I am your quality management department. I can tell you what works for your customers and what could be improved. An Advocacy Council made up of people receiving services can identify concerns long before they impact morale and productivity.

42 Standards in Practice What may be safe for you May be re-traumatizing for me Can we find something that works for both of us?

43 Domain 2: Consumer Driven Care & Services Four Main Standards: A. We are at the decision making table B. We are a vital part of the workforce C. We get to give feedback and influence the system D. Our voice and choice are respected our lives matter we are in the drivers seat

44 Standards in Practice Just needed a hug from someone who understands Trauma informed peer support providers can be the difference between my feeling safe and engaging or my hiding from services and the world.

45 Peer Providers have Resources to Share

46 Domain 2: Consumer Driven Care & Services Four Main Standards: A. We are at the decision making table B. We are a vital part of the workforce C. We get to give feedback and influence the system D. Our voice and choice are respected our lives matter we are in the drivers seat

47 Standards in Practice Board of Directors

48 Domain 2: Consumer Driven Care & Services

49 Reba Smith, M.S. Consultant Trauma-Informed Services

50 Gathering Input Organizations can invite the voice of the consumer in several different ways: Feedback cards Surveys One-on-one interviews Focus groups Advisory councils Including Voice in every level of the organization.

51 Making It Stick: What Gets in Tokenism: Perfunctory effort or symbolic inclusion of a group or, a substitute for the real thing. Manifests in: the Way? Just for looks seen, counted, but not heard Perpetual client seeing a person as only and always a client, in need of care, rather than an expert partner. Not paying for expert advice expecting the person to volunteer ** Expecting the status quo expecting the person to say yes, remain passive, i.e. not inviting them to speak their truth.

52 Are you Ready? Assess your resources: Cultural/attitudinal: Does your organizational culture allow for true collaboration between clients and staff? Have you had honest, safe conversations about power and shared decision-making? Do you have a clear definition of peer/consumer? Do you know what you will be asking the peers to do? Does the peer group agree with the scope of work?

53 Resources: Personnel and Time: Do you employ a leader who has time to coordinate, facilitate and sponsor the effort? Do you employ a liaison who can supervise, trouble-shoot, communicate between and among staff and peers? Do you have access to a neutral facilitator who can address the increase in visibility, isolation and conflict that occurs among peers? Money and Space: Can you pay peers to participate? If not, what can you do to show you value them? Can you provide a respectful, equal space, i.e. office?

54 Other resources to consider: Employee Development Training and continuing education on the role of peer support Implementation of training in work related skills through regular and focused supervision Continued attention to value of lived experience, preventing takeover by the dominant culture Employees see the value of peers in their role, not as someone s personal assistant or who can take over when the employee is overwhelmed

55 Peer Skill Development Peer skill development Organization is prepared to assist in skill development Organization understands where the peer comes from. Leadership training Storytelling training Group facilitation/training skills training and mentoring Accountability for co-facilitator and leadership group facilitators

56 Additive Adding peer and community based recovery supports to the existing treatment system Selective Practice and Administrative alignment in selected parts of the system Cultural, values-based change drives practice, community, policy and fiscal changes in all parts and levels of the system. Everything is viewed through the lens of and aligned with clientdirected, recovery-oriented care/trauma informed care including clinical/treatment services Achara-Abrahams,I., Evans, A., King, Joan Kenerson : Recovery Focused Behavioral Health Care System Transformation: A Framework for Change and Lessons Learned, In Kelly, J. & White, W. Addiction recovery management: Theory, science and practice. New York: Springer Science (2010)

57 Culture Change You think that because you understand one that you must therefore understand two because one and one make two. But you forget that you must also understand and. -Sufi Teaching

58 Contact Information Cheryl Sharp Anna H. Gray - ahgray59@gmail.com Reba Smith reba@wingspanconsult.com

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