Report of the Subcommittee on Consumer Issues:
Shifting to a Recovery-Based Continuum of Community Care

March 2003

A Recovery-Oriented Mental Health System

Mental health research shows that people can and do fully recover, even from the most severe forms of mental illness. Most fundamentally, recovery means having hope for the future, living a self-determined life, maintaining self-esteem, and achieving meaningful roles in society. Most consumers report they want the same things other people want: a sense of belonging, an adequate income, a way to get around, and a decent place to live. They aspire to build an acceptable identity for themselves and in the community at large. These are the essential ingredients of recovery from mental illness.

An emerging literature on the success of the recovery approach comes from the self-help movement, testimony of consumers, the psychiatric rehabilitation community, and research. Public and private sectors of the mental health community are initiating recovery-based programs, services and self-help technologies to overcome the barriers faced by people living with a mental illness in America. Recovery is an organizing principle for mental health services, programs, and supports that is based on consumer values of choice, self-determination, acceptance, and healing.

For recovery to take place, the culture of mental health care must shift to a culture that is based on self-determination, empowering relationships, and full participation of mental health consumers in the work and community life of society. To build a recovery-based system, the mental health community must draw upon the resources of people with mental illness in their communities.

It is widely recognized that changing the mental health system to be more responsive to consumer needs requires the participation of consumers at all levels of policy planning and program development, implementation, and evaluation. Meaningful involvement of consumers in the mental health system can ensure they lead a self-determined life in the community, rather than remaining dependent on the mental health system for a lifetime.

A recovery-oriented mental health system embraces the following values:

• Self-Determination
• Empowering Relationships
• Meaningful Roles in Society
• Eliminating Stigma and Discrimination

Policy Options

In order to facilitate recovery from mental illness, the Subcommittee urges Federal, state and local governments to together develop a National Recovery Initiative that promotes consumers' self-determination at both the collective and individual levels of recovery. The policy options that follow comprise the key components of the proposed National Recovery Initiative.

Policy Option 1. Promote Collective Self-Determination

The Subcommittee recommends increasing collective consumer self-determination by ensuring consumers' significant participation in the development of a National Recovery Initiative. This initiative would inform policy, evaluation, research, training, and service delivery at local, state and national levels in all systems integral to recovery from mental illness.

Employ Consumer Leadership in a National Recovery Initiative

The Subcommittee urges Federal, state and local governments to employ consumers in leadership roles in the development of a National Recovery Initiative, including the following:

• All boards, panels, and committees where mental health policy and research decisions are considered should include significant consumer representation. This might be accomplished by developing consumer representation guidelines and providing incentives for consumer inclusion.
• Where major barriers to recovery such as a lack of housing, education, or employment exist, ad hoc committees with meaningful consumer involvement should be convened to develop policy options.
• The government at all levels is urged to organize stakeholder panels to (1) explore ways to create more flexible funding streams for housing supports, TANF programs, community-based waivers and housing set asides; and (2) develop more integrated and voluntary approaches to treatment, housing, employment services, and other supports.
• National leadership is encouraged to organize a Policy and Research Task Force for Consumer Affairs composed of consumer members of the various boards, panels, and committees. The Task Force would meet regularly and develop integrated mental health policy recommendations from a mental health consumer perspective.
• The Subcommittee recommends establishing a panel with significant consumer representation to address streamlining the process for accessing disability benefits, educating people with psychiatric disabilities about disability benefits and services, and encouraging states to adopt the Medicaid Buy-In option, which allows recipients to retain Medicaid coverage after returning to work.

Involve Consumers and Promote Recovery in All Aspects of Research Design, Conduct, and Evaluation

The Subcommittee urges policy makers and researchers in this arena to talk with people diagnosed with a mental illness to learn about the challenges to recovery that they face. For many consumers, current research methods and standards—which are intended to advance our understanding of mental illness and effective services—pose challenges to their values and hopes for recovery.

• Providers and administrators who are also consumers have a unique perspective to offer on research design and evaluation involving persons diagnosed with a mental illness. As such, funds should be made available to support a summer training institute for these mental health professionals in order to further build their research and evaluation skills.
• NIMH is urged to create special research initiatives to study emerging evidence-based practices such as peer support programs and to develop and measure service satisfaction and outcomes that reflect recovery principles and other service outcomes important to mental health consumers (e.g., healing, personhood, well-being, or effects of coercion).
• The Subcommittee recommends that NIMH offer incentives to researchers to encourage research on recovery from mental illness.
• The Subcommittee recommends that CMHS continue to support the development of a core set of system level indicators that measure critical elements and processes of recovery, and that CMHS integrate these items into a multi-state "report card" of mental health performance measures.

Campaign to Increase Awareness of Recovery and Reduce Stigma and Discrimination

The Subcommittee recommends a broad campaign to reduce stigma and discrimination, increase awareness that people can and do recover from mental illness, and that people with mental illnesses are no more violent than the general population. The campaign would target all levels of the mental health system, including providers and administrators, as well as families and the general public.

Policy Option 2. Promote Individual Self-Determination

The Subcommittee urges the mental health system at the Federal, state and local levels to increase individual consumer self-determination by helping people with mental illness to acquire the self-management skills needed to manage their own lives. To accomplish this, we urge a shift from traditional services to recovery planning services, such as peer support services and services provided by independent living centers.

The Subcommittee encourages state mental health authorities to include recovery competencies as part of their licensing and professional certification programs for mental health professionals. The inclusion of recovery competencies and consumer participation in the design and implementation of professional training programs is also urged.

Integrate Peer Support Services into the Continuum of Community Care

We recommend that peer support services be integrated into the continuum of community care and that public and private funding mechanisms be made sufficiently flexible to allow access to these effective support services.

• The Subcommittee proposes that a carve-out from the Federal Community Mental Health Block Grant funding be established to support the integration of community-based peer support services within the continuum of community care.
• We encourage the inclusion of billable peer services under the Medicaid Rehabilitation Option.

Promote Inter-Agency Collaboration to Better Inform Consumer Choice

The Subcommittee urges CMS, SAMHSA and RSA (Rehabilitation Services Administration) to collaborate on an initiative that would enable individuals with psychiatric disabilities to manage their Medicaid benefits and obtain needed private and public services. This assistance would be analogous to that offered to people with other disabilities through Independent Living Centers.

• HHS, CMS and the VA are urged to ensure that any programs receiving Federal funding provide evidence that consumers play a primary role in the design, implementation, and evaluation of their individual recovery plans and that these plans are based on the consumers’ goals.
• Agencies should ensure that consumers are fully informed of and have voluntarily chosen any services they receive that are government funded or provided in a government facility.