Mental Health Issues
Americans with Disabilities Act, p. 790
assertive community treatment, p. 792
community mental health centers, p. 788
community mental health model, p. 788
Community Support Program, p. 786
consumer advocacy, p. 786
consumers, p. 790
deinstitutionalization, p. 789
institutionalization, p. 788
intensive case management models, p. 792
managed care, p. 787
mental health problems, p. 785
National Alliance for the Mentally Ill, p. 786
National Institute of Mental Health, p. 786
recovery, p. 791
reinstitutionalization, p. 790
relapse management, p. 791
severe mental disorders, p. 785
systems theory, p. 791
wellness recovery action plans, p. 797
—See Glossary for definitions
Anita Thompson-Heisterman, MSN, PMHCNS-BC, PMHNP-BC
Anita Thompson-Heisterman began practicing community mental health nursing in 1983 as a psychiatric nurse in a community mental health center. Her community practice has included clinical and management activities in a psychiatric home care service, a nurse-managed primary care center in public housing, and an outreach program for rural older adults. Currently she is an assistant professor in the Division of Family, Community and Mental Health Systems at the University of Virginia School of Nursing, and her faculty practice is with the Memory and Aging Care Clinic at the University of Virginia Department of Neurology.
Providing community services and nursing care to people suffering from mental illness or emotional distress is complex and influenced by many individual and community factors and requires a variety of approaches. Factors include: (1) the scope of emotional and mental disorders, (2) uncertainty about specific cause, cure, and treatment for most severe mental disorders, (3) severe chronic disabling nature of some mental disorders, and (4) complexity of the community mental health services sector. The scarcity of resources compounds the problems and presents challenges in community mental health work.
Cultural beliefs and economics influence the amount and types of services and treatment available in countries. However, two universal truths exist: services for people with mental disorders are inadequate in all countries, and mental illness has a significant effect on families, communities, and nations. Therefore, specialized knowledge and skills about severe mental illness and mental health problems are necessary for effective nursing practice in the community. It is helpful to understand both the organization of mental health services from a historical perspective and the trends in current health care demands and delivery. Knowledge about populations at risk for psychiatric mental health problems and understanding illness outcomes in terms of biopsychosocial consequences are even more important. Finally, it is necessary to refine and broaden nursing process skills in treatment planning to include the impact of mental illness on families and communities.
This chapter focuses on the scope of mental disorders, development of community mental health services, current health objectives for mental health and mental disorders, and the role of the nurse in community settings. Conceptual frameworks useful in community mental health nursing practice are also presented. Because other chapters in this book are devoted to high-risk groups such as the homeless population and those with substance abuse problems, this chapter’s focus is on the variety of mental health problems encountered in communities, with an emphasis on populations who have long-term, severe mental disorders and groups who are most vulnerable to mental health problems.
Scope of Mental Illness in the United States
Mental health is defined in Healthy People 2020 (USDHHS, 2010) as encompassing the ability to engage in productive activities and fulfilling relationships with other people, to adapt to change, and to cope with adversity. The World Health Organization (WHO) expands the definition, describing mental health as a state of well-being in which a person can realize his or her potential and notes that mental health is essential if a person is to have health (WHO, 2008a). Mental health is an integral part of personal well-being, family and other interpersonal relationships, and contributions to community or society. Mental disorders are conditions that are characterized by alterations in thinking, mood, or behavior, which are associated with distress and/or impaired functioning. Mental illness refers collectively to all diagnosable mental disorders. Severe mental disorders are determined by diagnoses and criteria that include degree of functional disability (APA, 2000).
Mental disorders are indiscriminate. They occur across the life span and affect persons of all races, cultures, genders, and educational and socioeconomic groups. They are the leading cause of disability in North America (WHO, 2008b). In the United States, approximately 57.7 million adults (ages 18 and older), or 26.2% of the population, suffer from a mental disorder in a given year, and 6% of the population suffer from a serious mental illness such as schizophrenia. Nearly half of those with any mental disorder meet criteria for two disorders (Kessler et al, 2005; NIMH, 2010). At least 13% of children and adolescents between ages 8 and 15 years have a diagnosable mental disorder in a given year (Merikangas et al, 2009). Eight percent of youth between 12 and 17 suffer from a major depressive disorder, but only 39% receive treatment (SAMHSA, 2007). Nearly 17% of people over age 55 experience a mood or anxiety disorder (Byers et al, 2010), and these rates will rise as the number of older Americans increases over the next two decades. Alzheimer disease, the primary cause of dementia, affects about 5.3 million Americans each year and creates a significant mental health burden for individuals and families (Alzheimer’s Association, 2010). The number of cases in the population doubles every 5 years of age after age 60 and will become a public health crisis as the “baby boomer” generation ages. Affective disorders include major depression and manic-depressive or bipolar illness. Although bipolar illness may only affect a small proportion of the population, major depression is pervasive and is the leading cause of disability among adults ages 15 to 44. Anxiety disorders—including panic disorder, obsessive-compulsive disorder, posttraumatic stress disorder (PTSD), and phobias—are prevalent, affecting 18% of American adults each year. Mental disorders can also be a secondary problem among people with other disabilities. Depression and anxiety, for example, occur more frequently among people with disabilities (NIMH, 2010).
The impact of mental illness on overall health and productivity in the United States and throughout the world is often underrecognized. In the United States, mental illness causes about the same amount of disability as heart disease and cancer. Depression is the leading cause of years of productivity loss because of disability in the United States (WHO, 2008b). Despite the prevalence of mental illness, only 25% of persons with a mental disorder obtain help for their illness in any part of the health care system, and the majority of persons with mental disorders do not receive any specialty mental health care. Twenty-nine million persons 18 years and older received mental health care from a variety of providers in 2007. However, another 11 million who had a mental health need received no care (USDHHS, 2008). Of young people ages 4 to 17 years who have a mental disorder, 60% received help through private or community-based providers and 40% through schools (USDHHS, 2009). The WHO (2008b) reports the global burden of mental health, substance abuse, and neurological diseases at 14% and, in recognition of the lack of resources, launched a mental health global action program (mhGAP) to begin to address the needs (WHO, 2008a). Their poster “No Health Without Mental Health” effectively describes the need to integrate physical and mental health services. Given this information, it is critical that nurses recognize and provide health services for those with mental disorders in a variety of non-traditional community settings.
In addition to diagnosable mental conditions, there is growing awareness and concern about the public health burden of stress, especially following terrorist attacks around the world, natural disasters such as Hurricane Katrina in New Orleans and the earthquake in Haiti, and man-made disasters such as the 2010 oil spill in the Gulf of Mexico, the wars in Iraq and Afghanistan, and the effects of the economic crisis (NIMH, 2010). Strengthening the public health sector to respond to these events involves developing community mental health responses as well as addressing physical health concerns. Community mental health nurses (CMHNs) play an important role in identifying stressful events, assessing stress responses, educating communities, and intervening to prevent or alleviate disability and disease resulting from stress (Clark, 2010).
Although all of us are vulnerable to stressful life events and may develop mental health problems, persons with chronic and persistent mental illness have numerous problems. Mental illness is misunderstood, and those who suffer from it often experience stigma and lack of social support, which is so critical to health. Persons with mental illness are often identified by the illness as a schizophrenic instead of a person with the illness. The onset of the disruptive symptoms of schizophrenia often occurs just as young persons are attempting to finish schooling and develop a career, shattering lives and driving many into a lifetime of underemployment, poverty, and lack of access to adequate health services, housing, and social supports. Many accessible and coordinated services are needed to enable people with chronic mental illness to live in the community, yet these often are not available. Despite the inadequacy of resources, advances have been made in the treatment of mental illness. These advances have been influenced by two major movements: consumer advocacy, and better understanding of the neurobiology of mental illness (Tomes, 2006; Rick and Douglas, 2007; Weiss, 2007). Naturally the financing of mental health services impacts access to care and influences treatment. The system known as managed care had a significant impact on service delivery for the past 20 years, and passage of mental health parity and national health care reform will undoubtedly influence mental health care during the next decade.
Consumer advocacy movements for people with mental illness, like those for other illnesses, came about to fulfill unmet needs and to attempt to decrease the stigma associated with mental illness. Specifically, the National Alliance for the Mentally Ill (NAMI) was the first consumer group to advocate for better services. This consumer advocacy group worked to establish education and self-help services for individuals and families with mental illness. Efforts of the NAMI gained momentum in the early 1980s. Subsequently, political groups and legislative bodies responded with direct support. One example of direct support was funding for the Community Support Program (CSP) by the National Institute of Mental Health (NIMH). The CSP provided grant monies to states to develop comprehensive services for persons discharged from psychiatric institutions and invited consumers to participate (Tomes, 2006). These and similar efforts have helped bring consumers, families, and professionals together to work toward improvement in the treatment and care of persons with mental illness.
Neurobiology of Mental Illness
Mental illnesses are complex biopsychosocial disorders. Considerable emphasis in the past 20 years has focused on the biological basis of mental illness. The 1990s were declared the “decade of the brain” as great strides occurred through research in neurology, microbiology, and genetics that led to understanding the structural and chemical complexity of the brain. Consequently, more is now known about the functions of the brain than at any time in history. We have learned that the brain is not a static organ. The concept of brain plasticity demonstrates that new learning actually changes brain structure. For example, traumatic experiences change brain biochemistry, as do significant positive experiences (Rick and Douglas, 2007; Weiss, 2007). This information supports the thought that both experience and psychosocial factors have effects on the etiology and on the treatment of mental illnesses. Both somatic and psychosocial interventions need to be used to treat mental illness. In addition to research, neuroradiological techniques aid diagnosis and treatment of people with psychiatric disorders. Angiography is used to screen for abnormalities of the vascular system, such as atherosclerosis and brain tumors, that can lead to behavior changes. The use of non-invasive scanning of the brain can help in making diagnoses. Computed axial tomography (CAT) scans provide a cross-sectional view of the brain, whereas nuclear magnetic resonance (NMR) imaging offers the advantage of imaging the brain from different planes. Still other techniques, such as positron-emission tomography (PET) and single photon emission computed tomography (SPECT), provide information about cerebral blood flow and brain metabolism. The information gained from these advanced technologies can lead to better understanding about mental illness and treatment.
Discoveries in psychopharmacology have also revolutionized treatment of mental illness (Boyd, 2005). New atypical antipsychotic drugs used in the treatment of schizophrenia can improve the quality of life for many, primarily because of fewer side effects. However, new adverse effects, including weight gain, insulin resistance, and dangerously high blood glucose levels, known as metabolic syndrome, have created fresh concerns for consumers and providers (McElroy et al, 2005; Newcomer, 2005; Correll et al, 2006).
Newer antidepressant medications known as selective serotonin reuptake inhibitors (SSRIs) are now considered the first choice in the treatment of depression as well as for many anxiety disorders because they lead to good responses with fewer side effects. They are now widely prescribed by primary care physicians as well as psychiatrists and are some of the most prescribed medications in the United States. Although considered safer than older agents, evidence suggests that the SSRIs accelerate bone loss and may lead to osteoporosis (Saag, 2007) and they may not be more effective than non-pharmacological interventions, such as exercise, in treating depression.
Systems of Community Mental Health Care
Managed care is a system of managing health care to ensure access to appropriate and cost-effective services. Managed mental health care grew rapidly during the 1990s, and by 1999 nearly 80% of Americans were enrolled in a managed health care plan. Initially a method to control costs and access to mental health care in the private insurance sector, managed care became a significant factor in public mental health, and by the turn of the century more than half of all Medicaid recipients were enrolled in a managed mental health care plan. Consumer outcomes such as health status, quality of life, functioning, and satisfaction are considerations in deciding if services are effective. Since one purpose of managed care is to control costs, often by substituting less costly services for more costly ones, the findings about consumer outcomes are critical. For example, the provision of quality comprehensive services in the community is not inexpensive, but it is generally less costly than hospital care and frequent admissions. Services must fit the needs of the consumer, and outcomes research can help guide care and policy decisions.
Changes continue to take place in mental health funding, and changes in one sector can have far-reaching consequences in many others. Although legislation was passed in 1996 ensuring parity for mental illness coverage in insurance plans, the implementation at the state level and the effects on insurance plans had been rather negligible for a variety of reasons, and further legislation passed in 2008 was needed to improve service access (Mental Health America, 2009). The seemingly constant changes in mental health funding present challenges for nurses, who need to make judgments about the positive and negative outcomes of these changes on the people they care for before research findings that can be generalized to the population are readily available.
Mental health problems and mental disorders are treated by a variety of caregivers who work in diverse and loosely connected facilities. The landmark surgeon general’s report on mental health, in an attempt to delineate where Americans receive mental health services, defined four major ways through which people receive assistance: (1) the specialty mental health system, both public and private, (2) the general medical or primary care sector, (3) the human service sector, and (4) the voluntary support network, including advocacy groups (USDHHS, 1999). Nurses need to understand that delivery of mental health services may occur in any of these systems. In fact, most older adults receive mental health services through the primary care sector, whereas most children and adolescents are served through human services that include schools. Those with resources, less severe mental health problems, and access to primary care are more likely to have their mental health needs addressed within the context of a visit to their primary care provider. Because of the influence of managed care, access to a specialist, if indicated for psychiatric treatment, occurs via this route as well.
The community mental health model is the primary method of care for people with serious and persistent mental illness. Components of this model include team care, case management, outreach, and a variety of rehabilitative and recovery approaches to help prevent exacerbations of illness. In most states, services are provided through comprehensive community mental health centers (CMHCs). There is great variance in how each state and locality implements mental health service delivery and each version continues to evolve in this era of health care reform, as the CMHCs react to societal, political, and fiscal pressures. As resources diminish, the focus narrows and many CMHCs are unable to provide services to populations other than those with serious and persistent mental illness. It is unclear how the growing focus on integration of mental health into primary care, parity in insurance coverage, and the recent passage of national health care reform might impact the community mental health system of care (IOM, 2006; Manderscheid and Berry, 2006).
Evolution of Community Mental Health Care
The manner in which the community has perceived the etiology of mental and emotional illness across the ages has influenced the care and treatment of persons suffering from these disorders. These patterns were often cyclical. In ancient times, mental illness was viewed as resulting from supernatural forces and those afflicted were shunned. During the Greco-Roman era, mental and physical illnesses were seen as interrelated and resulting from physical conditions. Treatment was aimed at curing the disease by restoring balance. A return to a belief in supernatural etiologies occurred during the Middle Ages in Europe and continued in the colonies well into the eighteenth century. These beliefs led to poor treatment of the mentally ill, including incarceration, starvation, and torture. Near the end of the eighteenth century, the revolution in mental health care known as Humanitarian Reform took place. This reform movement, influenced by Philippe Pinel (1759-1820) in France and Benjamin Rush (1745-1813) in North America, led to hospital expansion, medical treatment, and the community mental health movements (Boyd, 2005).
Before the Humanitarian Reform, persons with mental illness were often housed in jails because health and social services had not been developed. Even later, after the development of hospitals as a site of treatment, persons with mental disorders were neglected and mistreated. Although the first psychiatric hospital in the United States was built in Williamsburg, Virginia, in 1773, approximately 50 years passed before widespread construction of facilities in other states took place. One person in particular, Dorothea Dix, led reform efforts to correct inhumane practices (Boyd, 2005).
Dorothea Lynde Dix (1802-1887) focused attention on criminals, those with mental disorders, and victims of the Civil War. She believed that people with mental disorders needed health and social services, and her efforts influenced the improved organization of mental health services. Her work led to the development of hospitals as the primary site of care, and she influenced standards for hospital administration and nursing care. Because of her lifetime efforts, often through political action, treatment for mentally infirm persons was altered in both North America and Europe (Boyd, 2005).
Hospital Expansion, Institutionalization, and the Mental Hygiene Movement
Psychiatric hospitals constructed during the expansion era were located in rural areas and were intended for small numbers of clients. However, they soon became overcrowded with people who had severe mental disorders, with older adults, and with immigrants who were poor and unable to speak English. Clients were essentially separated from the community and isolated from their families. Many were institutionalized for the rest of their lives, in response to both a continued fear of persons with mental disorders and a lack of community resources. Institutionalization of large numbers of people, combined with minimal information about cause, cure, and care, resulted in overcrowded conditions and exploitation of clients.
At the beginning of the twentieth century, institutional conditions were reported publicly in the United States by Clifford Beers, who had been hospitalized both in private and in public mental hospitals (Boyd, 2005). Beers urged reform and influenced the founding of the National Committee for Mental Hygiene. During the mental hygiene movement, attention shifted to ideas about prevention, early intervention, and the influence of social and environmental factors on mental illness. These ideas about treatment also influenced the development of multidisciplinary approaches to treatment. The mental hygiene and community mental health movements increased understanding about mental illness.
Further understanding about the scope of mental illness was gained during the conscription process for the armed services in World War II. Many of the persons screened for military service during World War II were found to have neurological and psychiatric mental health disorders. Even more military personnel required treatment for mental health problems associated with social and environmental stress during and after the war, not only in the United States but also in Europe, Russia, and Pacific Rim countries (Boyd, 2005). At the same time, the community mental health model continued to expand slowly while populations consisting of individuals with severe mental disorders and older adult persons with dementia grew larger in the state hospitals. Demands for mental health services in communities, combined with concerns about conditions of state psychiatric hospitals, prompted federal legislation that influenced development of the community mental health concept.
Federal Legislation for Mental Health Services
The first major piece of legislation to influence mental health services in the United States was the Social Security Act in 1935. This act, created in response to economic and social problems of the era, shifted the responsibility of care for ill people from the state to the federal government. The federal government’s role expanded when the demand for mental health services increased during and after World War II. Key points of legislation that influenced the development of community mental health services are summarized in Table 36-1.
|1946||National Mental Health Act||Education and research for mental health treatment approaches began (NIMH).|
|1955||Mental Health Study Act||Resulted in Joint Commission on Mental Illness and Health, which recommended transformation of state hospital systems and establishment of community mental health clinics.|
|1963||Community Mental Health Centers Act||Marked beginning of community mental health centers’ concept and led to deinstitutionalization of large psychiatric hospitals.|
|1975||Developmental Disabilities Act||Addressed the rights and treatment of people with developmental disabilities and provided foundation for similar action for individuals with mental disorders.|
|1977||President’s Commission on Mental Health||Reinforced importance of community-based services, protection of human rights, and national health insurance for mentally ill persons.|
|1978||Omnibus Reconciliation Act||Rescinded much of the 1977 commission’s provisions and shifted funds for all health programs from federal to state resources.|
|1986||Protection and Advocacy for Mentally Ill Individuals Act||Legislated advocacy programs for mentally ill persons.|
|1990||Americans with Disabilities Act||Prohibited discrimination and promoted opportunities for persons with mental disorders.|
|1996||Mental Health Parity Act||Attempted to address discrepancy between mental health and medical–surgical benefits in employer-sponsored health plans.|
|2008||Mental Health and Addiction Equity Act||Prohibits discrepancy in coverage between mental health and physical health benefits in employer-sponsored and private insurance plans and added substance abuse as a covered mental health condition.|
|2010||Patient Protection and Affordable Health Care Act||Prohibits discrimination in coverage for preexisting conditions.|
Prohibits discontinuation of coverage because of illness.
In 1946 the National Mental Health Act was passed and the National Institute of Mental Health (NIMH) administered its programs. Objectives included development of education and research programs for community mental health treatment approaches. The act also included financial incentives for training grants to increase the number of professional workers, including nurses, in mental health services. Education and research programs materialized readily, along with advances in science and technology and the development of psychotropic medications. In 1955 the Mental Health Study Act was passed and the Joint Commission on Mental Illness and Health was established by the NIMH. Members of the commission studied national mental health needs and submitted to Congress a report entitled Action for Mental Health. Recommendations of the report included continued development of research and education programs, early and intensive treatment for acute mental illness, and shifting the care of severely mentally ill persons away from the large hospitals to psychiatric wards in general hospitals and to community mental health clinics. Along with prevention and intervention, community services were to include aftercare services following hospitalization for individuals with major mental illness (Boyd, 2005). The shift in the locus of care from state hospitals to community systems was begun.
The Community Mental Health Centers (CMHCs) Act was passed in 1963, and the CMHC concept was formalized. Federal funds were designated to match state funds to construct CMHCs and start programs. CMHCs were mandated to have five basic services: inpatient, outpatient, partial hospitalization, 24-hour emergency services, and consultation/education services for community agencies and professionals. In addition, regulations encouraged states to offer diagnostic and rehabilitative pre-care and aftercare services (Boyd, 2005). However, many CMHCs, especially those in poor and rural areas, were unable to generate adequate money for continuing their start-up programs. Funding did not follow the client to the community. The deinstitutionalization of persons with severe mental disorders was well underway before some of these shortcomings were recognized.
Deinstitutionalization involved transitioning large numbers of people from state psychiatric hospitals to communities. The cost of institutional care was perhaps the main reason for the movement; other influences included the discovery of psychotropic medications and civil rights activism (Boyd, 2005). The goal of deinstitutionalization was to improve the quality of life for people with mental disorders by providing services in the communities where they lived rather than in large institutions. To change the locus of care, large hospital wards were closed and persons with severe mental disorders were returned to the community to live. Many were discharged to the care of family members; others went to nursing homes. Still others were placed in apartments or other types of adult housing; some of these were supervised settings, and others were not.
Not surprisingly, as with any abrupt, dramatic change, problems related to unexpected service gaps between the hospitals and the CMHCs led to continuity-of-care problems. Although deinstitutionalization was a noble idea, there were not adequate resources to support the implementation. For example, families were not prepared for the treatment responsibilities they had to assume, and yet few mental health systems offered them education and support programs. Although many older adult clients were admitted to nursing homes and personal care settings, education programs were seldom available for staff members, who often lacked the skills necessary to treat persons with mental disorders. And finally, some clients found themselves in independent settings such as rooming houses and single-room occupancy hotels with little or no supervision and few skills to manage living in the community. Clients, families, communities, and the nation suffered as poor living and social conditions were associated with mental disorders. Homelessness and placement of the mentally ill in jails and prisons also occurred. These conditions may have increased the stigma associated with persons with mental illness. The placement of persons with mental illness in nursing homes, assisted living facilities, and jails was often referred to as “reinstitutionalization,” since it only shifted people from one institution to another. These issues prompted additional legislation and advocacy efforts.
Civil Rights Legislation for Persons with Mental Disorders
The development of CMHCs was based partially on the principle that persons with mental disorders had a right to treatment in the least restrictive environment (Boyd, 2005). Although CMHCs were less restrictive than institutions, they lacked necessary services. For example, people with severe mental disorders require daily monitoring or hospitalization during acute episodes of illness. Even though hospital services were available, many individuals expressed their rights to refuse treatment and resisted admission. Also, transitional care following discharge for those persons who were admitted to hospitals was not available in most communities. In addition to the right to refuse treatment, advocates for mentally ill individuals focused on such civil rights issues as segregated services, inhumane practices in psychiatric hospitals, and failure to include clients in treatment planning. Activism for minorities and handicapped persons also influenced civil rights legislation for persons with mental disorders. In particular, during the 1970s institutional conditions of persons with developmental handicaps prompted the Developmental Disabilities Assistance Act and the Bill of Rights Act. Other legislation shifted funding from the federal to the state level. The Mental Health Systems Act was repealed in 1980. This action limited the federal leadership role, shifted more costs back to the states from the federal government, and further impeded the implementation and provision of community mental health services.
State systems of mental health services developed in unique and diverse ways and were often inadequate. In general, individuals with severe mental disorders were vulnerable and neglected and either lacked or were unable to access health and social services. In an effort to offset these problems, in 1986 the federal Protection and Advocacy for Mentally Ill Individuals Act and the Mental Health Planning Act were passed. Advocacy programs for mentally ill persons became part of the same state advocacy systems developed earlier under the Developmental Disability Act, and consumer involvement in CMHCs was mandated (Boyd, 2005). In spite of advocacy efforts and legislation, the CMHCs were unable to meet the increased and diverse demands for mental health services in their communities. The lack of services, combined with concerns about discrimination against all people with disabilities, led to additional legislation.
The Americans with Disabilities Act (ADA) was passed in 1990. The ADA mandated that individuals with mental and physical disabilities must not be discriminated against and must be brought into the mainstream of American life through access to employment and public services (Boyd, 2005). History reveals that past legislation promoted the rights of persons with mental disorders, but litigation was also responsible for the lack of growth, if not the decline, in community mental health services. In 1996 the Mental Health Parity Act was passed to address discrimination in insurance coverage and in 2008 the Mental Health Parity and Addiction Equity Act (MHPAEA) was passed, prohibiting differential coverage for mental health disorders (Mental Health America, 2009). The community mental health nurse can advocate for clients to ensure equality in access to health services, housing, and employment.
Consumers or survivors, defined as persons who are current or former recipients of mental health services, along with their families have had a significant impact on mental health services. As in all areas of health care, the rights and wishes of consumers are important in planning and delivering services. However, consumers of mental health services have traditionally had difficulty advocating for themselves. In the past, treatment programs often fostered passivity in clients and excluded them from the treatment planning process. In addition, family members were responsible for care in the home, but they lacked resources and even information about treatment (Tomes, 2006). Like consumers, family members suffered from the stigma of mental illness and public attitudes that contributed to self-advocacy problems. In contrast, self-advocacy and involvement in treatment planning fosters self-confidence, promotes participation in services, and may have a significant influence on policy decisions (Tomes, 2006). Consumer and family groups fostered these objectives.
Family members led self-advocacy efforts in the 1970s, when small groups organized to challenge and change mental health services. These early efforts resulted in the formation of the National Alliance for the Mentally Ill (NAMI), which today has both state and local affiliates. Soon, consumer groups formed to advocate for better services, changes in mental health policy, self-help programs in treatment, and empowerment. Several advocacy groups that support these consumer efforts are summarized in Box 36-1. In their assessment of resources, nurses can identify community advocacy and support groups.