Adapted from Contextualizing Self-Determination within a Mental Health Recovery-Oriented Service and Support System St

1. Adapted from Contextualizing Self-Determination within a Mental Health Recovery-Oriented Service and Support SystemSteven J. Onken The National Self-Determination and Psychiatric Disability Invitational Conference:We Make the Road by Traveling on ItOctober 2003, Chicago IL: University of Illinois at Chicago National Research and Training Center

2. Based in part on the work of The Mental Health Recovery: What Helps and What Hinders? A National Research Project for the Development of Recovery Facilitating System Performance Indicators Steven J. Onken, Jeanne M. Dumont Co-Principal Investigators Priscilla Ridgway, Douglas H. Dornan Ruth O. Ralph Co-investigators

3. Purposes of the Project To increase knowledge about what facilitates or hinders recovery from psychiatric disabilities, To devise a core set of indicators that measure elements of a recovery-facilitating environment, and To integrate the items into a multi-state �report� of system performance in order to generate comparable data across state and local mental health systems.

4. Phase One of the Project A qualitative research design guided by a grounded theory design Incorporated a structured focus group approach with a purposive variability sample frame The data from each focus group underwent structured content analysis identifying individual meaning units and emerging groupings A common set of critical concepts and interpretive themes was then developed for the pooled data set across all focus groups A member check was conducted to maintain rigor and assure credibility

5. Findings: Recovery as the ongoing, interactional process/personal journey and outcome of restoring a positive sense of self and meaningful sense of belonging while actively self-managing psychiatric disorder and rebuilding a life within the community. Recovery is facilitated or impeded through the dynamic interplay of many forces that are complex, synergistic and linked. While recovery is a deeply personal journey, there are many commonalities in people�s experiences and opinions.

6. Recovery is a product of dynamic interaction among characteristics of the individual (the self/ holism, hope/ sense of meaning & purpose), characteristics of the environment (basic material resources, social relationships, meaningful activities, peer support, formal services, formal service staff), and characteristics of the exchange (choice, independence/ interdependence).

7. Self-Determination Self-Governance - behavior is experienced as autonomous (an essential ingredient of psychological health, growth, vitality, and well-being) Refers to acting as the primary causal agent in one�s life and making choices and decisions regarding one�s quality of life free from undue external influence or interference (a causal agent is someone who makes or causes things to happen in his or her life)

8. Self-Determination and Recovery SD is embedded as both a necessary process and outcome within the dynamic interaction of forces and factors that facilitate recovery This actualization occurs within and builds upon the characteristics of the individual, the environment and the exchange A threefold strategy: building SD knowledge, skills and competencies in the individual facilitating self-determination enhancing environments promoting empowering exchanges

9. Core Components Focusing on Formal Service Systems Autonomy Competence Relatedness Intrinsic Motivation Meaning-Making Concept of Self Concept of World Concept of Self-in-World Choice Making Interdependence Empowerment Supports Vital Engagement Growth External Influence Internal Locus of Causality

10. Person-Centered Elements of Recovery Hope Concept of Self Sense of Agency Meaning and Purpose Awareness and Potentiality Transtheoretical Change Model (Prochaska & DiClemente, 1983)

11. Hope tends to involve: A Temporal Dimension - future focused A Potentiality Dimension - what you seek/desire is achievable An Agency Dimension - goal-directed determination A Pathway Dimension - available and accessible ways to reach what you seek/desire An Interconnectedness Dimension - links you to someone or something beyond yourself.

12. Concept of Self The self over time, or, one�s identity Constructed through various meaning-making processes Development of hope, purpose, understanding & a positive sense of self Ability to control important outcomes, one�s life destiny Active engagement with one�s resulting goals, triggering self-agency

13. Concept of Self w/in Service Systems Dreams demeaned, pessimistic staff, emphasized chronicity/ pathology, stripped decision-making Lack of education & information about one�s condition, potential to recover, resources for such Pattern of failure, helplessness/ dependency -triggered shame, self-loathing, internalized stigma - diminished/ destroyed hope, purpose Meaning-making avenues in the community risk rejection if one were to disclose Restricted services/ health care coverage for cognitive behavior therapy/ rehabilitation, integrated psychological therapy & other interventions that develop problem-solving, social and behavioral competencies that strengthen one�s sense of self

14. Concept of World - Social/Emotional Secure Relatedness - a core of active, connected, mutually supportive relationships - fueled by belief that recovery is possible and this being supported by others - fosters intrinsic motivation/ active engagement/ self-agency Enduring Partnerships - respected as an equal, complete and accurate information, collaboration Peer-to-Peer Connection - social support, helping one self through helping others, experiential knowledge/ self-help, role models, sense of normalcy/ understanding - counteracting internalized life scripts regarding chronicity/ pathology/ helplessness with those emphasizing self-responsibility & self-management

15. Social/Emotional w/in Service Systems Social/ personal isolation, emotional withdrawal, controlling relationships, poor social skills, immigrant status, past trauma, social stigma undermine relationships/ reinforce lack of security or stability in such connections. Neutral/ detached professional helpers, constant turn-over, disrespectfulness, condescension, not listening, low expectations, culturally insensitivity, uncaring, untrustworthy - attitudes that under-mine motivation, self-determination and recovery The tacit knowledge base (i.e., those things that one knows through having lived the experience) that constitutes peer-to-peer connection is not valued or accepted in professional circles, nor funded.

16. Concept of World - Instrumental Housing � a place that is safe, private, affordable and feels like home Substantial Livelihood � an income that one can live on, transportation, phone Physical Health � full health, dental & prescription coverage and access Meaningful Activity - work, education, voluntary and/or advocacy activities Mental Health � accessible, flexible, individualized, noncoercive, effective, consistent, consumer driven services Holistic Approach � mind-body, spiritual/emotional/mental/physical integration

17. Concept of World - Instrumental People have basic subsistence needs that �the safety net� does not meet - poverty; unsafe, substandard and segregated housing and neighborhoods; no/limited health care; poor transportation Un/Underemployment, exploitation, disincentives, prejudice, discrimination - loss of meaningful work/ student roles (a core identity), loss of sense of productivity and purpose What assistance is available too often is experienced as demeaning as well - bureaucratic program guidelines, limited access to services and supports, abusive practices, poor quality services, negative messages, lack of �best practice� program elements, lack of holistic focus

18. Concept of World - Instrumental Conditions placed on receiving instrumental support can undermine self-determination and thus sabotage recovery Formal social service system is experienced as a gatekeeper, intent on shaping and controlling the lives of those who receive benefits People are belittled for what assistance they do get, questioned, monitored and threatened as to their need or qualification for such Widespread fears of the risk of losing assistance forces people to amplify, intentionally or through self-fulfilling prophecy, what is wrong with them, their dependency, vandalizing their intrinsic motivation and sense of self-governance

19. Concept of World - Instrumental Formal system undermines the development of self-responsibility - the system decides for you what you want or need based on what it is prepared to provide The lack of education, choice, selection, needed range of program/ treatment options, and continuity of care and of caregiver undermines secure relatedness and decision making competencies needed for self-determination The formal service system largely overlooks the central experience of trauma in psychiatric disorder - a trauma sensitive & healing culture is one of belonging, safety, openness, participation, citizenship and empowerment � actualizing self-determination and autonomy

20. Concept of World - Instrumental Actualizing self-determination - making choices and decisions regarding one�s quality of life free from undue external influence or interference - is not possible in coercive service systems External threats, surveillance, evaluation shift one�s locus of causality from internal to external, making one feel less like the origin of one�s behavior, less autonomous, less responsible for it, diminishing intrinsic motivation Coercive systems limit/ remove choices; use treatment, services, medication as means of social control coerced consent forms, court mandated services, forced medication pressure, threats and force to accept treatment

21. Concept of Self-in-World: A Vision for Self-Determination in Formal Service Systems Choice Interdependence Vital Engagement

22. Choice Exchange characterized by having choices among meaningful options, competencies in making choices, and the ultimate decision making power, fosters self-governance, self-responsibility, resiliency, flourishing Access to relevant, accurate info is critical Exercising meaningful choice free from undue external influence or interference Having options, including alternative paths that are accepted as legitimate choices, or at least not blocked Having opportunities for choice-making and to build choice making competencies Taking responsibility for choices, including the right to take risks, make a mistake, and to fail

23. Substantial Freedoms (Sen) and Capacities Approach (Nussbaum) Substantial freedoms Basic Needs � Life, Bodily Health, Bodily Integrity Reason, Emotion, Imagination Social Connectedness: Affiliation, Social Respect Nature and Play Citizenship: Political and Material Control The enabling social opportunities and circumstances that must be in place for the person be able to exercise her or his person-based capacity to act

24. Interdependence Self-determination totally unconstrained can push people to an autonomy that can be disconnecting. Interdependence is about relationships that lead to a mutual acceptance & respect - a fabric effect, where diverse people come together in a synergistic way to create an upward effect for all. Defines the problem not from what is wrong with the person, but from the context of limited supports to allow the person the opportunity to participate and advance - it repositions the problem to be deficit in service system and/or cultural-social structure by not having appropriate supports for full participation for all.

25. Interdependence - Empowerment Promotes and empowers the person to take more charge of his/her life Have the right/ privilege to determine their own situation Explore the dimensions of their self-esteem and self-direction Focus on appreciating one�s worth and importance, appreciating the worth and importance of others, affirming accountability for one�s self, and affirming one�s responsibility toward others The process of recovery also involves empower-ment, i.e., an awareness of the circumstances of one�s illness, the desire/will to alter these circumstances, and a feeling that one has the power to effectively recover, due in part to the strength of internal and external resources

26. Interdependence - Supports and Opportunities Achieving independence moves from being measured by the quantity of tasks one can perform by him or herself, to that of the quality of life one can have with supports People having adequate opportunities to establish a wide range of relationships Challenging the status quo and attempting to reframe the systems and structures of society that keep people harnessed and separate - demands that whenever �new� is achieved, it must remain in the spirit and integrity of consumer control and dignity Focusing on capacities, not just strengths

27. Vital Engagement Opportunities for meaningful activities and engagement in life - characterized both by flow, or enjoyed absorption, and by meaning, or subjective significance Dynamics of flow facilitates the stretching of capacities, to find flow in what one is doing is to grow - competency building One derives a sense of meaning and significance from vital engagement, can deepen over time Perpetuated in part through one�s membership in a community of practice and interactions with other members of the community Set of enjoyed pursuits expands over time, exposing one to to new activities, encounters, people, communities, or institutions

28. Vital Engagement Meaningful, flexible employment often described as the best therapy there is - access to, and choice among work opportunities and career development Other avenues of meaningful activity include engaging in knowledge development and educational opportunities � the intrinsic value in learning, volunteer work and artistic expression Engagement in advocacy as a means to gaining voice, of moving towards self-determination and recovery - Self-advocacy is integral to self-determination - group or systemic advocacy activities can trigger referent power opportunities, and provide people with a sense of being members of an extended community

29. �We can�t stop here but there�s hope in watching the system evolve & the changes that are taking place.� Self-determination is encouraged when basic needs for autonomy, competence, and relatedness are met. Such an environment promotes choice-making and self-responsibility. It addresses people�s needs holistically and contends with more than their symptoms. It meets basic needs and addresses problems in living. It empowers people to move toward self-management of their condition. The orientation is one of interdependence and hope with an emphasis on acceptance, empowerment and capacities. It fosters creative supports and assists people to connect, including mutual self-help. It focuses on positive functioning in a variety of roles, vital engagement in meaningful activities, and building or rebuilding positive relationships.