yale program for recovery and community health

1. yale program for recovery and community health On Defining Appropriate Consumer-Centered Mental Health CareLarry Davidson, Ph.D.Program for Recovery and Community HealthYale University

2. What I hope to cover in 20 minutes: • Why mental health care needs to be made both “appropriate” and “consumer-centered” -- (i.e., why it isn’t already). • How systems can be transformed to make mental health care both appropriate and consumer-centered. • What appropriate and consumer-centered mental health care looks like in practice.

3. Isn’t Mental Health Care Already Appropriate and Consumer-Centered? This is the “what’s broken . . .” problem. Are things (really) so bad that they need to be transformed? To this question, there are at least two answers: 1) Objectively speaking, yes, things are so bad that they need to be substantively transformed; however 2) The degree of awareness of these issues, and the amount of support for making transformative change, vary considerably from state to state and will determine how much change will be possible (i.e., elected and appointed officials alone will not be able to effect such change without the broad-scale investment of their constituents)

4. How is mental health care notappropriate or consumer-centered? • According to the President’s New Freedom Commission on Mental Health (DHHS, 2003), mental health services are “fragmented and in disarray [leading to] unnecessary and costly disability, homelessness ... and incarceration.” • Current care “simply manages symptoms and accepts long-term disability” (DHHS, 2003). • The rights of people with mental illnesses to live, work, learn, and participate fully in their communities have been “derailed by outdated science, outmoded financing, and unspoken discrimination” (DHHS, 2005). 

5. What are the costs of this to your state? Mental Illnesses Alcohol and Drug Use Disorders Alzheimer's Disease and Dementias Musculoskeletal Diseases Respiratory Diseases Cardiovascular Diseases Sense Organ Diseases Injuries Digestive Diseases Communicable Diseases Cancer Diabetes Migraine

6. Employment as one example • In the U.S., mental illnesses are (by far) the single greatest cause of disability and lost productivity • While 70% of adults with serious mental illnesses express a desire for competitive employment, only 15% are employed at any given time • Currently less than ½ of 1% (.005) of adults on SSDI ever get off of disability, with more money being spent on keeping people disabled than on offering them treatment, rehabilitation, or supports

7. But isn’t that because people with mental illnesses simply cannot work? No. When provided with adequate supports, up to 65% of people with serious mental illnesses have been able to work in competitive jobs (a full half of the population more than are currently employed). A remaining segment of the population could be employed in affirmative/social cooperative business models, peer or consumer-run businesses, or other subsidized settings, working and occupying valued social roles as the route to securing a livable wage (e.g., The Village; Trieste, Italy; Canadian and Swiss models).

8. But is this “realistic”? While well-meaning practitioners and family members express concerns that work may, in fact, be stressful for some people with some mental illnesses some of the time, they overlook the equally important fact that: Being out of work and poor is sure to be stressful for most people with most mental illnesses most of the time

9. The shift is subtle but profound and far-reaching According to: • Surgeon General’s Report on Mental Health (1999) and Supplement on Culture, Race & Ethnicity (2001) • New Freedom Commission on Mental Health Final Report: Transforming Mental Health Care in America (2003) • SAMHSA FederalAction Agenda: First Steps (2005) It requires dramatic, substantive change: “Transformation . . . is nothing short of revolutionary. . . It implies profound change—not at the margins of a system, but at its very core. In transformation, new sources of power emerge and new competencies develop” (DHHS, 2005).

10. What “new sources of power” emerge in transformation? The power of people with mental illnesses reclaiming their lives. In a transformed system, people with mental illnesses are no longer viewed as a burden on taxpayers or as a problem the state mental health system has to address. Instead, they become the most valuable, yet relatively untapped, resource available to a system of care. When offered effective treatments and adequate supports, they become contributing citizens.

11. What new competencies need to be developed in order for this power to be maximized? • To shift from people with mental illnesses being viewed as problems to their occupying the role of citizens who contribute to the common good, mental health services and systems need to be reoriented: • from containing and reducing illness • to promoting resilience, recovery, and the pursuit of a safe, dignified, and gratifying life in the community for everyone

12. New Competencies to be Developed • For people with mental illness, this requires shifting from getting rid of or being cured of the illness to learning how to live with, manage, and have a whole life despite the illness. • For practitioners, this requires shifting from taking care of people to enhancing their access to opportunities to “live, work, learn, and participate fully in the community” and offering the supports needed for them to take advantage of these opportunities.

13. How Systems can be Transformed • Distinguish between recovery and recovery-oriented care: • Recovery is what the person with a mental illness does to manage his or her illness while in pursuit of his or her own life goals. • Recovery-oriented care is what health care practitioners offer in support of the person’s own efforts toward his or her recovery. • Acknowledge the crucial first step of restoring civil rights. “A keystone of the transformation process will be the protection and respect of the rights of adults with serious mental illnesses” (DHHS, 2005). In particular, the fundamental rights to: • Self-Determination and • Social Inclusion

14. Social Inclusion People with mental illness are entitled to a life in the community first, as the foundation for recovery—not as its reward. For example, It is very hard to recover if you don’t have a place to live (a home). Housing cannot be contingent on compliance or improvement in one’s condition.

15. Self-Determination People with mental illness retain the right to make their own decisions—both in life and in treatment—unless, until, and only for as long as there are compelling reasons for society to interfere with their sovereignty. That means that . . . . . . Psychiatry is a form of health care. As in all (non-emergency) health care, people reserve the right to be free from coercion, and to have all care provided only with their informed consent . . . even when they still have symptoms or deficits, just like in other forms of health care.

16. What does recovery-oriented carelook like in practice? -- Not a pilot program -- Not an add-on to existing care -- Not a new provider-driven practice -- Not what happens after care, treatment, or cure -- Not a new term for compliance or adherence -- Not limited to self-help, peer support, or quality of life -- Not ancillary or supportive of ‘real’ treatment -- Not a fad, fashion, or flavor of the month

17. Connecticut’s Systemic Approach Rather than developing several pilot recovery-oriented programs, DMHAS Commissioner Thomas Kirk, Jr. viewed recovery and evidence of healthcare disparities as calling for major systemic changes. This called for a multi-level and multi-dimensional approach to transforming all aspects of the system of care, from basic policy and funding decisions, to program development, to the delivery of care at the level of the individual person/family. And people in recovery led the way . . .

18. Vision of Recovery-Oriented System of Care

19. “Recovery” Defined Recovery involves a process of restoring or developing a meaningful sense of belonging and positive sense of identity apart from one’s condition while rebuilding a life in the broader community despite or within the limitations imposed by that condition.

20. Recovery-Oriented Care Defined Recovery-oriented care identifies and builds upon each person’s assets, strengths, and areas of health and competence to support the person’s efforts in managing his or her condition while regaining a meaningful, constructive sense of membership in the broader community. “You can do it. We can help.”* *The Home Depot faith work or school treatment & rehabilitation Self-help housing social support family belonging

21. Essential Elements of Appropriate Consumer-Centered Care • Promotes resilience, recovery, and community inclusion • Identifies and builds on each individual’s interests, assets, strengths, and areas of health and competence • Supports the person’s efforts to manage his or her own condition while pursuing or regaining a meaningful, constructive sense of membership in the community • Is based on person-centered care planning and practice principles that orient care to the person’s own goals • Allows for maximum choice and is culturally responsive • Holds providers accountable for positive outcomes

22. Domains of Practice Guidelines • Primacy of Participation • [Prevention and Early Intervention] • Promoting Access and Engagement • Ensuing Continuity of Care • Employing Strengths-Based Assessment • Offering Individualized Recovery Planning • Functioning as a Recovery Guide • Community Mapping, Development, and Inclusion • Identifying and Addressing Barriers to Recovery • [Assessing and Monitoring Outcomes] [still under development]

23. Sample Standards

24. Sample Standards, continued

25. yale program for recovery and community health Take Home Messages? • Current systems are fragmented, outdated, ineffective, and only manage symptoms while accepting disability • An equally significant barrier to recovery is the stigma/ discrimination people with mental illnesses face within the mental health system • Transformation begins with restoring rights (i.e., self-determination & social inclusion) and dignity to people with mental illnesses and their taking the wheel in steering 1) their own care and 2) the system as a whole • Transformation then requires choice and accountability, with services and supports identifying and building on strengths and interests to enable people to have safe and meaningful lives in the community despite disability