Using Medicaid to Support Working Age Adults with Serious Mental Illnesses in the Community: A Handbook. Evolution of Community Support


Fifty years ago, government-funded mental health services principally consisted of large state-run mental institutions, funded solely with state funds. Community-based services -- especially for low-income individuals -- were scant and not well-organized.2 First-generation antipsychotic medications that effectively relieved the psychotic symptoms of many individuals -- most notably chlorpromazine (Thorazine) -- were discovered during the mid-1950s. These medications -- coupled with litigation to end the confinement and segregation of individuals in mental institutions -- catalyzed the deinstitutionalization of thousands of individuals from state mental institutions. However, it was soon evident that communities were ill-prepared to provide the mental health care and basic life supports that many individuals needed. As a result, many people lived isolated lives in poverty, were often homeless and experienced high rates of crisis and rehospitalization.

At the urging of President Kennedy, Congress enacted the Community Mental Health Centers Act of 1963. Federal funding was provided directly to localities for the development of community mental health centers to furnish essential services, notably for the uninsured poor. This landmark legislation sparked the creation of centers around the nation that became the foundation of publicly-funded community mental health systems. The Act also was the federal government’s first step in providing federal financial assistance for community mental health services. The centers were given the broad charge of furnishing mental health care -- principally in outpatient clinic settings -- to all individuals with mental illnesses, regardless of their type or severity, within their designated geographic catchment areas. Community Mental Health Centers (CMHCs) were not directed to focus exclusively on individuals with serious mental illnesses.

During the 1970s, a consensus emerged that successfully supporting community life for individuals with serious mental illnesses required the adoption of a more comprehensive approach to meeting their needs than tying services exclusively to treatment in office-based settings and outpatient clinics. While outpatient services could address the needs of many people, they had their limitations, especially with respect to individuals with serious mental illnesses. A different approach was needed to address the multiple challenges these individuals face.

In the 1970s, as a result of studies conducted by the National Institute of Mental Health and dialogue within the mental health community, the “community support system” (CSS) was formulated to serve as a conceptual framework for supporting individuals with serious mental illnesses who are especially reliant on mental health and other com-munity support systems to live successfully in the community. The federal Community Support Program (CSP) was launched and is now located at the Center for Mental Health Services (CMHS) in the U.S. Department of Health and Human Services Substance Abuse and Mental Health Services Administration (SAMHSA). Starting in 1977, CSP made grants to states specifically to aid development of service systems for people with serious mental illnesses. CSP also underwrote technical assistance, federally sponsored research and demonstration programs, and active networking.3

The CSS framework encompasses a core set of principles concerning the provision of services for individuals with serious mental illnesses. In particular, services should be:4

  • Person-centered
  • Empowering of individuals
  • Ethnically and culturally appropriate
  • Flexible
  • Focused on a person’s strengths
  • Normalized and incorporate natural supports
  • Tailored to meet special needs
  • Coordinated

The CSS concept also identified the essential service and support components that are necessary to successfully support individuals with serious mental illnesses in the community, as illustrated in Figure 1-1.

In CSS, specialized mental health services are a critical component. However, CSS strongly emphasizes the importance of supporting individuals in the everyday world rather than confining services to fixed-site clinics and offices. CSS also points to the importance of crisis response capabilities and recognizes that individuals with serious mental illnesses frequently need supports beyond treatment and clinical services. These supports include income support and services (e.g., vocational rehabilitation) that help them obtain employment and, thereby, achieve greater independence and self-esteem. Assistance in securing community housing also is vital. CSS also underscores the critical role that peers, families, friends, and other sources of community support outside the formal service delivery system can play in helping individuals to live successfully in the community. Because CSS spans multiple types of supports, case management/service coordination is an essential feature of CSS, both to assist individuals to obtain other supports and to coordinate services.

The CSS framework has had a significant influence in shaping public community mental health programs. During the late 1970s and throughout the 1980s, community support programs were started around the country. Indeed, today in some states (e.g., New York) services for individuals with serious mental illnesses who need intensive, ongoing supports are known as community support services. Early community support programs had promising results in aiding individuals to experience positive outcomes in the community.5

The past two decades have been marked by state efforts to amplify and mainstream the essential components and features of CSS in their public mental health systems. State-operated mental health facilities now typically provide short-term treatment.6 States have shifted their resources to community support, concentrating more intently on supporting individuals with serious mental illnesses.

As a result of the CSS framework, consensus exists that a comprehensive consumer-centered system of specialized mental health services for persons with serious mental illnesses should span multiple components, as Table 1-1 on the following page illustrates.7 Especially important has been the coupling of rehabilitation with treatment to assist individuals to overcome the functional limitations that stem from serious mental illnesses. Rehabilitation assists individuals to regain the essential skills that they need in order to live more independently, reduce their dependency on the service system, and build self-esteem. 

TABLE 1-1: Consumer-Centered System Components
  • Diagnosis
  • Comprehensive evaluation and assessment
  • Service planning
  • Psychiatric and psychological services
  • 24-hour pre-crisis and crisis services
  • In-home treatment services and services provided in other environments, including jails and homeless shelters
  • Rehabilitation services, including full and partial day treatment programs
  • Basic living-skills training
  • Vocational rehabilitation
  • Employment services
  • Services to assist people who are homeless
  • Services (and support coordination) for people with dual or multiple disabilities
  • Outreach

In subsequent chapters, more information will be provided concerning the nature and scope of many of these services and supports. Not every individual with a serious mental illness requires or will use every one of these services. Rather, these components describe a constellation of services and capacities that a community system should have available in order to respond to the unique needs of each individual. An effective community support system is individually centered, capable of tailoring services to each person’s needs and changing circumstances, and respectful of each person’s right to make decisions concerning their services and how they are provided.

The greatest potential for improvement does not lie in mental health systems, it lies within the individual who has faith that she or he can recover, does recover, and then shares that good news with others.

Larry Fricks8

Recovery has emerged as an especially compelling and powerful paradigm for supporting individuals with serious mental illnesses. Recovery has its roots in the fundamental principles of the CSS concept and stresses how critical it is for people with mental illnesses to take responsibility for their lives, make decisions about their services, and achieve independence. Recovery engages and empowers individuals with serious mental illnesses to take control of their lives. Recovery shares many of the same philosophical underpinnings as the broader self-direction movement among people with disabilities of all types who are asserting greater authority over service provision and assuming personal responsibility for improving the quality of their lives.

Successfully transforming the mental health service delivery system rests on two principles:
  • First, services and treatments must be consumer and family centered, geared to give consumers real and meaningful choices about treatment options and providers – not oriented to the requirements of bureaucracies.
  • Second, care must focus on increasing consumers’ ability to successfully cope with life’s challenges, on facilitating recovery, and on building resilience, not just on managing symptoms.

The President's New Freedom Commission on Mental Health9

Also in recent years, effectively supporting individuals with serious mental illnesses has benefited from development of new pharmaceutical products for treatment of certain disorders, including the development of atypical antipsychotics for schizophrenia. Today, there is a wider array of effective medications to treat many disorders. There also have been significant strides in medication management.

“Evidence-based practices” (briefly described on the following page) are being identified that have demonstrated efficacy and cost-effectiveness in securing positive outcomes for individuals with serious mental illnesses.

Evidence-Based Mental Health Practices
An “evidence-based practice” (EBP) is a method to address a condition, which meets scientific and stakeholder criteria for safety, effectiveness, and cost-effectiveness. EBPs translate research findings into practice. The deployment of EBPs is widely regarded as central to improving health care quality. EBPs have been developed and are being researched across a broad spectrum of health services.10 There are now six recognized11 adult mental health EBPs12:
  • Assertive Community Treatment (ACT; a.k.a., Program for Assertive Community Treatment (PACT)) targets individuals with serious mental illnesses (a) for whom traditional or less intensive services have been ineffective; (b) who experience the most difficulty in independent community living; and, (c) who are frequent users of inpatient hospital and crisis services. These individuals frequently experience homelessness, criminal justice system involvement and/or use illegal substances. ACT was pioneered in Wisconsin in the late 1970s; most states now have ACT teams. ACT is furnished by interdisciplinary teams of 10-12 professionals, including case managers, a psychiatrist, nurses and social workers, vocational, substance abuse treatment, and peer specialists. Each team serves approximately 100 individuals. Individualized services are available on a 24-hour basis and continue as long as necessary. Treatment, support and rehabilitation services are furnished in community settings rather than offices and clinics. Studies have shown that individuals who receive ACT experience reduced hospitalization rates, a better quality of life, and higher employment rates. Studies also have shown that the costs of ACT (about $9,000 to $12,000 per year per person) are offset by reduced hospitalization costs.13
  • Family Psychoeducation. It is estimated that between one-quarter and one-third of adults with serious mental illnesses reside with their family, usually a parent. Thus, families play a critical role in supporting individuals. Family psychoeducation is “a method of working in partnership with families to help them develop increasingly sophisticated and beneficial coping skills for handling problems posed by mental illness in the family and skills for supporting the recovery of the family member with a mental illness.” Family psychoeducation identifies strategies for handling difficult situations, educates family members to better understand the person’s mental illness, and links families to other families who have similar experiences. Family psychoeducation has been demonstrated to improve the quality of the family’s and individual’s life as well as to markedly reduce costs through reduced hospital admissions, shorter hospital stays and reduced crisis intervention.
  • Integrated Dual Disorders Treatment. The percentage of adults with serious mental illnesses who also have a co-occurring substance abuse disorder (abuse or dependence related to alcohol or other drugs) is estimated to run as high as fifty percent. However, only a small percentage receives treatment for both disorders. People with co-occurring disorders are at high risk of negative outcomes, including hospitalization, violence, legal problems, and homelessness. They are the heaviest users of costly services and have poor clinical outcomes. The bifurcation of the mental health and substance abuse service delivery systems can pose problems in effectively serving these individuals. Integrated Dual Disorders Treatment combines mental health and substance abuse treatments within the same system of care. It features a “comprehensive range of integrated services including counseling, case management, medications, housing, vocational rehabilitation, social skills training, and family intervention that are modified to include both diagnoses.” This practice promotes positive outcomes, including improved quality of life, reduced hospitalization and lower costs.
  • Illness Management and Recovery Program (a.k.a., Wellness Self-Management) is “based on research which has shown that by learning more about managing mental illness, people who have experienced psychiatric symptoms can take important steps toward recovery.” This program has been shown to decrease relapses and hospitalization, reduce symptom distress, and result in more consistent medication use. Practitioners work with people to “develop personalized strategies for managing mental illness and achieving personal goals.” This three-to-six month program is designed for people who have experienced the symptoms of schizophrenia, bipolar disorder, and major depression.
  • Medication Management Approaches in Psychiatry (MedMAP). Medications are a part of the recovery for most people diagnosed with serious mental illnesses. MedMAP promotes the systematic selection of medications, measures outcomes, uses the results to modify medications and, and enhances the individual’s adherence to medication regimens. MedMAP also stresses shared decision making by the individual and practitioner in the selection of medications. MedMAP aims to eliminate ineffective practices in prescribing medications and improve the results achieved from their use.
  • Supported Employment. Individuals with serious mental illnesses have an estimated unemployment rate of 80-90 percent.14 Most individuals want to work, and with support a majority of them can succeed in the work place. Supported employment programs aid individuals to secure regular jobs in the community. These programs do not screen individuals for “work readiness” or employ intermediate settings like “pre-vocational” units or sheltered workshops. Employment specialists work with individuals in locating and acquiring a community job and furnish ongoing supports to individuals, usually outside of the work place. Supported employment has demonstrated effectiveness in promoting community integration and securing meaningful work for individuals.

The President’s New Freedom Commission on Mental Health has stressed the importance of increased use of evidence-based practices.15

The principles of recovery and the emergence of evidence-based practices are exerting strong influence on the provision of public community mental health services. For example, the New York State Office of Mental Health has launched a major initiative, entitled “Winds of Change”, to incorporate evidence-based practices into its system.16 Many other states also have launched initiatives to introduce and amplify the use of evidence-based practices in their community mental health systems. SAMHSA and the Robert Wood Johnson Foundation are co-leading a nationwide effort to promote the application of evidence-based practices. Georgia has revamped its coverage of Medicaid mental health services to embrace the essential principles of recovery by redefining its array of services and including more peer oriented approaches.17 Ohio has strongly emphasized recovery as well. Other states are engaged in similar efforts.

In summary, the CSS framework had a major influence on public mental health systems. In the case of working-age adults with serious mental illnesses, public systems are frequently designed to: (a) address multiple dimensions in supporting individuals with serious mental illnesses in the community, stressing not only treatment but rehabilitation and other community living dimensions; (b) organize around meeting each person’s unique needs; and, (c) focus on recovery. The translation of “science to service” is leading to the adoption of evidence-based practices that promise to improve the value of community mental health services. A robust community mental health system promotes both positive outcomes for people with serious mental illnesses and pays substantial dividends in the form of reduced state, local and private costs due to hospitalization and incarceration.

States are at different stages in their capabilities to support individuals in the community. Many face major challenges in marshaling the resources necessary to meet the needs of working-age adults with serious mental illnesses in the community. This is why the funding of mental health services is a major issue nationwide and why the Medicaid program is increasingly important.

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