Mental Health Programs
About CMHS
Center for Mental Health Services National Advisory
Council Subcommittee on Consumer/Survivor Issues
Attachment 1
Needs, Models, and Evidence-based Practices
"The notion of recovery reflects renewed optimism about the outcomes of mental illness, including that achieved through an individual's own self-care efforts." (1)
-Surgeon General's Report on Mental Health
Overview
Self-care approaches offer individuals who experience mental illness means to improve their lives. For over thirty years, self-care - which includes self-help, self-management, and mutual/peer support activities - has become an increasingly critical component in improved delivery of healthcare services. Self-care models in public and private mental health systems are proliferating. Self-care is identified as an evidence-based practice; a growing research base supports its values and benefits. A wide array of stakeholders and policy makers endorse self-care. To date, the public and private mental health systems have not fully embraced the self-care initiative. The time is ripe for the New Freedom Commission on Mental Health to promote widespread expansion of self-care approaches.
Needs of Mental Health Policy
Public mental health programs need effective technologies to meet consumer demand as resources shrink and systems change.
The public mental health system has shifted from centralized hospital-based institutional care administered by state agencies to decentralized community-based outpatient settings administered by county-level agencies. Occupied psychiatric beds have declined. More people use outpatient services than inpatient services and yet most public mental health funding is for outpatient care.
The number of people who use mental health services is rapidly growing. Annual public spending on mental health care is increasing yet per capita spending is declining.
As demand increases and resources decrease, intensity of outpatient services - as measured by number of visits - is declining. Overall consumer satisfaction with inpatient services has declined since 1995.
As systems changed from inpatient to outpatient care, the priority missions have been excellent in healthcare value and performance improvement. Accountability has been a major goal. Meanwhile, consumers voice their desire for services that promote recovery. President Bush's New Freedom Initiative now drives Federal effort to maximize consumer independence and community integration. Altogether, these factors increase demand for federal mental health policy that promotes outcomes of recovery. Self-care is such a model. The need for self-care is clear. People who experience psychiatric disability can become disoriented and need to learn actions that promote recovery. Medications, hospitals, and programs have limited capacity to keep a person sane, stable, sober, and safe. Self-maintenance and self-monitoring are vital in helping people with psychiatric disabilities avoid relapse. People who experience psychiatric disability are most successful when they are the agent of their recovery.
Traditional mental health staff cannot provide full support for all people who have psychiatric disabilities. Follow-up and outreach can be done by others who have experienced psychiatric disability, treatment, and recovery. Positive support can come from learning from people who are themselves in recovery. Skills for living in the community often can be best learned from people who have "been there."
Self-care can help people who experience psychiatric disability avoid the stress, depression, and anxiety that can accompany any disability. People who experience psychiatric disability can use self-care principles of self-help, self-management, and peer support to access recovery.
Self-Care and Mental Health: A Closer Look
Self-care is a fairly recent development in the arena of human services. The modern self-care movement has roots in the 1935 founding of Alcoholics Anonymous. Over recent decades, virtually every health issue has developed self-care approaches. Perhaps 2 to 3 percent of the American population is involved in a self-help group at any one time. (2) Former Surgeon General Dr. C. Everett Koop observed that "the benefits of mutual aid are experienced by millions of people who turn to others with a similar problem."(3)
The mental health self-care movement began about 25 years ago. In major East and West coast cities, self-help groups consisting of people using mental health services began to meet for mutual support, information, and growth. Since then, the number and variety of mental health self-care groups have flourished. By 1993, 3,000 such groups were estimated to exist at local, state, national, and international levels. (4)
Individuals participate in self-care groups and efforts for many reasons. Certainly they get and give peer support. Their common experiences develop common capacity for empathy, trusting relationships, and compassion. Peer support offers socialization, a sense of belonging, and acceptance for whom one is. Peer support offers coping strategies as members share information and insights based on their own experiences.
Members of self-help groups also serve as positive role models. By demonstrating recovery and overcoming of problems, they instill hope and motivation. In contrast to traditional services, self-care is accessible and affordable, inexpensive, or free. Self-care emphasizes consumer education and increased knowledge of conditions, treatments, and services. Self-care provides a forum for personal discussion about discrimination, stigma, and needed policy changes. Self-care avoids discrimination and stigma that accompany traditional professional support. Self-care participants experience the "helper's principle," whereby people who assist others experience heightened self-worth and self-esteem. Finally, self-care helps consumers build skills and partnerships with healthcare providers to achieve improved outcomes. (5)
Mental health self-care is based on unique principles and values. They include empowerment, acquiring the ability to make the decisions that affect one's life; independence, the focus on self-reliance, community integration, and opportunity to act as productive citizens; responsibility, being accountable for one's self within one's community; choice, self-determination in use of voluntary services and supports that are based on informed consent; respect and dignity, recognition that all individuals have value, skills, and strengths to offer society; and, hope and recovery, realization and promotion that people can overcome mental health problems. It is worth noting that self-care can be an adjunct or alternative to traditional services. (6)
Models of Mental Health Self-Care
Self-care approaches in mental health have taken many forms. These include self-help groups, peer counseling, self-management and wellness approaches, peer education, consumer-operated services, consumer research, and consumers being hired within traditional mental health systems.
As the U.S. Surgeon General's Report on Mental Health noted, "Consumers are now involved in all aspects of the planning, delivery, and evaluation of mental health services, and in the protection of individual rights." (7)
Mental health self-help activities led to Public Law 102-321 and its establishment of state mental health planning councils. State mental health agency access to Federal block grant funds requires state planning councils to include consumers and families.
Self-help groups run by people who experience mental illnesses exist in every state. A 1993 survey found that 46 state mental health departments funded 567 self-help groups and agencies for persons with mental health disabilities and their family members. (8) Since then, the number of publicly-funded mental health self-help groups have expanded exponentially.
The Federal Center for Mental Health Services (CMHS), as part of the Substance Abuse and Mental Health Services Administration (SAMHSA) of the Department of Health and Human Services (HHS), supports state-wide consumer networks and five technical assistance centers that assist mental health self-help efforts. Additional models of self-help have proliferated through Recovery, Inc., GROW, Depression and Bipolar Support Alliance (DBSA), The National Alliance on Mental Illness (NAMI), and the National Mental Health Association (NMHA). Consumers provide innovative services such as drop-in centers, educational programs, supported housing, case management, employment programs, public education, crisis response, benefits acquisitions, and much more.
Model self-care programs such as Dr. Mary Ellen Copeland's Wellness Recovery Action Program (WRAP) and various care management programs are becoming widely popular. These models educate consumers in how to take control of their own services and provides guidelines to pursuit of recovery (9)
As in the addictions field, mental health consumers are being hired within traditional mental health service provider systems in roles that vary from direct care to program administration.
Finally, consumers now help develop policies to improve and evaluate mental health services. Thirty state public mental health service systems have hired consumers to guide policy in self-help. Consumer satisfaction teams, report cards, and other consumer-based quality improvement initiatives operate across the nation. According to the Surgeon General, we have "witnessed the blossoming of a vibrant consumer research agenda and the growing belief that consumer involvement in research and evaluation holds great promise for systems reform, quality improvement, and outcome measurement." (10)
Evidence Base for Mental Health Self-Care
On an individual level, research reports that self-help benefits include: increased independence and self-reliance; improved self-esteem; enhanced coping skills and feelings of personal empowerment; and increased knowledge of services/rights, housing, employment, and other issues of concern to consumers. (11) On a systems level, the U.S. Surgeon General notes that consumer self-help "has substantially influenced mental health policy to tailor services to meet consumer needs." (12)
A recent study by the Depression and Bipolar Support Alliance (DBSA) revealed the following benefits of self-help to consumers: interpersonal support; improved coping with problems and crises; support in making better decisions; increased understanding of medications, treatment, and willingness to follow treatment plans; and improved communication with doctors. A significant finding was that people who attend self-care groups for over a year were less likely to have been hospitalized during that time. (13)
A similar study concluded that people involved in self-help groups are 50% less likely to be hospitalized than those in comparable programs without self-help. (14)
In a New York State study of mental health self-help groups, participants reported improved confidence, self-esteem, and handling of problems. The study found that self-help group participants were significantly more optimistic, successful in achieving goals, happy, and hopeful about the future. (15)
Other research demonstrates that peer support services enhance the effectiveness of traditional mental health services. Ninety percent of surveyed self-help group leaders report positive change in the lives of individuals who participated in consumer-run organizations. Persons who receive intensive case management services from teams that included peer specialists had greater improvement in their quality of life and fewer life problems than other individuals served by teams that did not include consumer peer specialists. (16)
In another study, 80 percent of mental health self-help groups report that their members use inpatient services less because of self-help; 80 percent report that their members are holding a job; 90 percent report that their members are living more independently and are assuming more responsibility; 70 percent report that their members have better family ties; and 70 percent report that their members are getting an education. (17)
A 2002 study of recipients of "Double Trouble" mental health and addictions self-help groups found that participation in those groups correlated with treatment adherence, successful supported living, fewer stressful life events, reduced severity of symptoms, and less use of inpatient services. (18)
The Surgeon General's Report notes that self-care's benefits include: less experience of isolation, increased practical knowledge, enhanced coping efforts, fewer symptoms, lower hospitalization rates, and greater self-esteem and well being. (19) That same report highlights improved outcomes that accompany consumer-operated services and hiring of consumers on case management teams. (20)
A Federal cross-site evaluation of consumer-operated services revealed that consumer-operated programs increase the overall quality of life, independence, employment, social supports, and education of people who use mental health services. (21)
Widespread Endorsement of Self-Care Approaches
The value of mental health self-help is widely endorsed by public and private mental health leaders. The Robert Wood Johnson Foundation has supported patient education, consumer activism, and several models for self-determination. The RWJ Foundation has highlighted the need to support organizations for people with chronic conditions - such as mental illnesses (22). The Foundation has also noted that "Collective consumer action can also be a potential driver for better quality of care."(23)
The National Association of State Mental Health Program Directors issued a position statement on "Consumer Contributions to Mental Health Service Delivery Systems" that highlights the value of consumer participation. This document argues that: "client-operated self-help and mutual support services should be available in each locality as alternatives and adjuncts to existing mental health service delivery systems…financial support should be provided to ensure their viability and independence." (24)
The Institute of Medicine in their recent report entitled "Crossing the Quality Chasm" states that consumer participation and control is a key strategy in improving America's healthcare delivery systems. It notes that "Patients' experiences should be the fundamental source of the definition of "quality." (25) The IOM affirms that "Patients should be given the necessary information and opportunity to exercise the degree of control they choose over health care decisions that affect them." (26)
The World Health Organization in its 2001 World Health Report noted that: "Patients with mental disorders can be very successful in helping themselves, and peer support has been important in a number of conditions for recovery and reintegration into society". (27) WHO recommends expanded consumer participation and states that "Non-governmental organizations and consumer groups should also be supported, as they can be instrumental in improving service quality and public attitudes." (28)
References
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