On Defining Appropriate

Consumer-Centered Mental Health Care

Larry Davidson, Ph.D.Program for Recovery and

Community HealthYale University

yaleprogramforrecoveryandcommunityhealth

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.

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)

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of people with mental illnesses to live, work, learn, and participate fully in their communities have been “derailed by outdated science, outmoded financing, and unspoken discrimination” (DHHS, 2005). 

What are the costs of this to your state?

0 5 10 15 20 25

Percent of Total Disability

Causes of Disability in the United States, Canada, and Western Europe

Mental Illnesses

Alcohol and Drug Use Disorders

Alzheimer's Disease and Dementias

Musculoskeletal Diseases

Respiratory Diseases

Cardiovascular Diseases

Sense Organ DiseasesInjuries

Digestive Diseases

Communicable Diseases

CancerDiabetes

Migraine

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

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).

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

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 Federal Action 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).

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.

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

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.

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

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.

Social Inclusion

Self-DeterminationPeople 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.

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

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 . . .

Direction ParticipationEqual opportunity for wellnessRecovery encompasses all phases of careEntire system to support recoveryInput at every levelRecovery-based outcome measuresNew nomenclature of recoverySystem-wide training for culturally diverse, relevant, and competent servicesConsumers review fundingCommitment to Peer Support and to Consumer-Operated servicesParticipation on Boards, Committees, and other decision-making bodiesFinancial support for consumer involvement

No wrong doorEntry at any timeChoice is respected Right to participatePerson defines goals

ProgrammingIndividually tailored careCulturally competent careStaff know resources

FundingNo outcomes, no incomePerson selects providerProtection from undue influenceProviders don't oversee themselvesProviders compete for business

Vision of Recovery-Oriented System of Care

“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.

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

membershipin the broader community.

“You can do it. We can help.”*

*The Home Depot

faith

Self-help

social support

belonging

family

housing

work orschool

treatment & rehabilitation

Recovery-Oriented Care Defined

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

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]

Sample StandardsDomain Degree to which

practices . . .Sample standards

Primacy of

participation

place emphasis on the participation of people in recovery and their loved ones in all aspects and phases of the care delivery process.

People in recovery comprise a significant proportion of an agency’s board of directors

Administration enforces ethical practice through supervision and proactive human resource oversight

Promoting Access

and Engagem

ent

facilitate swift and uncomplicated entry into care and identify and remove barriers to receiving care; address basis needs.

People can access a wide range of services from many different points.

Staff examine organizational barriers or other obstacles to care before concluding that a client is noncompliant with treatment.

Ensuing Continuity of Care

ensure continuity of the person’s most significant healing relationships and supports over time and across episodes and agencies.

Motivation is no longer viewed as a pre-condition for treatment but as one outcome of interventions oriented to address pre-action stages of change.

People have a flexible array of options from which to choose which allow for a high degree of individualization.

Employing

Strengths-Based

Assessment

balance critical needs that must be met with the resources and strengths that people possess to assist them in the process.

An individual’s needs are not captured by a label or diagnosis, but by an accurate description of his or her functional strengths and limitations.

Strengths-based assessment is conducted as a collaborative process and all assessments in written form are shared with the individual.

Sample Standards, continued

Offering Individualized Recovery Planning

are based on an individualized, multi-disciplinary recovery plan developed in collaboration with the person and any others that s/he identifies as supportive.

• The planning process solicits the individual’s unique goals and these are documented in the plan in the individual’s own words. • The person’s cultural background, identity, and other social affiliations are incorporated and addressed in all aspects of recovery planning.

Functioning as a

Recovery Guide

remove personal and environmental obstacles to recovery, link the person to the community, and, where not available naturally, serve as a mentor in processes of recovery.

• Providers offer practical assistance in the community contexts in which their clients live, work, and play. • Efforts are made to identify sources of incongruence between the person and his or her environment and to increase person- environment fit.

Identifying and

Addressing Barriers to Recovery

identify and address characteristics in the service system and the community, as well as factors intrinsic to the person’s behavioral health condition(s), that unwittingly contribute to the creation and perpetuation of chronicity and disability.

• Providers are aware of the importance of discrimination in the lives of people with behavioral health disorders• A person’s symptoms are explored not only in terms of the difficulties they pose, but also in terms of their potentially adaptive function in his or her efforts to cope with the illness and other life stressors. Delusions, for example, may be understood as one component of a person’s efforts to understand his or her experiences of hallucinations and disordered thought processes.

Community Mapping,

Development, and

Inclusion

involve a participatory process of mapping the resources and capacities of a community as a means of identifying existing, but untapped or overlooked, resources and potentially hospitable places in which contributions of a person with a disability will be valued.

• People in recovery are viewed primarily as citizens rather than as clients and recognized for the gifts, strengths, skills, and resources they have to contribute to community life.• Institutions do not duplicate services that are widely available in the community through individuals and associations.

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

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