Recovery and rehabilitation of persons with severe mental illness: a vision.

Although some progress has been made to counteract the myths, misperceptions, and stereotypes surrounding mental illness, stigma still prevents many people from seeking treatment and causes countless others to keep their conditions secret for fear of losing their jobs, health insurance, or homes. This article describes the mission of the Center for Mental Health Services and its current initiatives in the area of vocational rehabilitation. A model mental health service system is described with particular emphasis on the involvement of mental health consumers in designing and implementing the services. The article concludes with discussion of the emerging vision of the future of psychiatric rehabilitation services.

Statistics regarding the number of children with emotional disturbance and adults with mental illness and the subsequent impact on productivity are overwhelming.

* Approximately 9-13 million children and adolescents (14-20 percent) from birth through age 21 have a diagnosable emotional disturbance and require mental health services (Brandenburg et al., 1990). Yet, less than one out of five receive appropriate care (Office of Technology Assistance, 1986).

* During any given year, more than 40 million adult Americans are affected by one or more mental disorders; 5.5 million Americans are disabled by severe mental illness, such as schizophrenia, manic-depressive illness, and severe depressive disorders (Bourdon et al., 1992).

* Even by conservative estimates, up to 600,000 people are homeless throughout the country on any given night (Burt & Cohen, 1989). One-third are estimated to be adults with serious mental illness (Manderscheid & Rosenstein, 1992; Tessler & Dennis, 1989).

* For people with mental illness, the unemployment rate is estimated to be 85 percent (Orrick, 1992, President's Committee on Employment of People with Disabilities).

* Morbidity costs--the value of goods and services not produced because of mental disorders--was estimated at $63.1 billion for all mental disorders in 1990; schizophrenia alone accounted for $10.7 billion (Rice Miller, 1993).

* At least two-thirds of elderly nursing home residents have a diagnosis of at least one mental disorder (National Institute of Mental Health, 1992,1990).

* Between 6 and 14 percent of the correctional population are estimated to have major psychiatric disorders (Government Accounting Office, 1991b); 61,000 inmates of state adult correctional facilities received psychiatric care or lived in separately designated housing units (National Institute of Mental Health, 1992).

The Center for Mental Health Services

The 1992 Alcohol, Drug Abuse, and Mental Health Administration Reorganization Act (Public Law 102-321) established the Center for Mental Health Services (CMHS) to provide national leadership for the treatment and prevention of mental illness. The act mandates vigorous federal leadership in mental health service delivery and policy development. CMHS is a component of the Substance Abuse and Mental Health Services Administration, one of eight Public Health Service agencies within the U.S. Department of Health and Human Services.

The center pursues its mission by helping states improve and increase the quality and range of treatment, rehabilitative, and supportive services for people with mental illness and their families and communities. Congress further provided support for a wide range of programs to respond to the increasing number of mental, emotional, and behavioral problems among America's youth and for programs of outreach and case management to serve hundreds of thousands of Americans who are homeless and severely mentally ill. In addition, the center supports efforts to create and enhance the effectiveness of consumer run and self-help alternatives (CMHS, 1993).

Definition of Serious Mental Illness

Clearly, the development of quality programs and supports for adults with serious mental illness and children with serious emotional disturbance is a CMHS priority. As part of the CMHS mandate, Congress required the development of a common definition of serious mental illness. This permits uniform estimates of the number of adults with serious mental illness and children with serious emotional disturbance and encourages comprehensive planning for mental health services to address multiple needs.

The new definition encompasses two parameters:

* the disorder itself, and

* the impact of the disorder on functional status.

The definitions for children and adults are identical, except for age and type of functional impairment.

Children with serious emotional disturbance are defined as persons "from birth up to age 18 who currently or at any time during the past year have had a diagnosable mental, behavior, or emotional disorder of sufficient duration to meet diagnostic criteria specified within DSM-III-R that resulted in functional impairment which substantially interferes with or limits the child's role or function in family, school, or community activities." Functional impairment for children is defined as "difficulties that substantially interfere with or limit a child or adolescent from achieving or maintaining one or more developmentally appropriate social, behavioral, cognitive, communicative, or adaptive skills."

Adults with serious mental illness are similarly defined except they are age 18 and over and their functional impairment "substantially interferes with or limits one or more major life activities," including basic daily living skills such as maintaining a household, managing money, getting around the community and taking prescribed medication, and functioning in social, family, and vocational-educational contexts" (Federal Register, 1993).

The term "severe" mental illness is a subset of "serious" mental illness. Severe considers the duration of the disability (i.e., has lasted or can be expected to last 1 year or longer) and has a higher threshold for the disability itself.

Model Mental Health Service System

Mental health service delivery systems too often lack the necessary resources to prevent or treat the mental health problems of youth and adults with either serious or severe mental illness. In the past, children with serious emotional disturbance and adults with severe mental illness were commonly confined for long periods of time at institutions that were often far from home and provided only custodial care. Unfortunately, this still happens today, despite the fact that significant gains have been made in creating community based psychiatric rehabilitation programs. In the late 1970's, a special federal initiative was launched that was designed to assist states and communities to develop a range of basic community services and supports for persons with severe mental illness. This has become known as the community support system (Stroul, 1988).

A community support system is defined as "an organized network of caring and responsible people committed to assisting persons with long-term mental illness to meet their needs and develop their potentials without being unnecessarily isolated or excluded from the community." This network includes a spectrum of treatment, life support, and rehabilitation services (Stroul, 1988).

Briefly, the components of the community support system include:

* Client Identification and Outreach

- client identification

- outreach

- transportation

* Mental Health Treatment

- diagnostic evaluation 

- supportive counseling

- medication management

- substance abuse services

- Crisis Response Services

- crisis telephone services

- walk-in crisis services

- mobile crisis outreach services

- crisis residential services

- inpatient services 

* Health and Dental Care

* Housing

- supportive housing 

- residential assistance for homeless persons 

* Income Support and Entitlements

* Family and Community Support

- support and assistance to families

- support and education for the community

* Rehabilitation Services

- social rehabilitation

- vocational rehabilitation

- Protection and Advocacy

- Case Management

CMHS Activities Related to Vocational Rehabilitation

Effective employment interventions are a central component of the community support system model. CMHS's community support program (CSP) facilitates the development of vocational rehabilitation services for persons with serious mental illness through funding of state demonstration projects. From 1989-1994, CSP funded six services research demonstration grants to evaluate models of organizing and providing rehabilitation services and two service system improvement grants for training and education for consumers.

Within the area of services research, a grant in New Hampshire supports a model of vocational rehabilitation--Individual Placement and Support (IPS)--for persons with severe mental disorders that combines supported employment with assertive community treatment. A training manual has been produced on how to set up and implement such an IPS program in a community mental health center (Becker and Drake, 1993).

A project in Michigan is designed to show how vocational services can effectively be added to existing community support programs. Vocational and case management staff are teamed to promote and maintain vocational placements and supported work initiatives.

In Massachusetts, a project is comparing the efficacy and costs of an experimental psychiatric vocational rehabilitation (PVR) program model with standard vocational rehabilitation services. PVR provides a month-long prevocational phase of campus instruction followed by an 18-month period of comprehensive services.

A service system improvement grant in Ohio seeks to empower other consumers through a job search and preparation program using consumers as job search specialists. CSP will disseminate a monograph of executive summaries of final project reports in late 1995.

CSP also works with state mental health authorities to foster new community initiatives and encourages projects to collaborate with federal and state vocational rehabilitation agencies. In a number of states, interagency agreements between mental health and vocational rehabilitation agencies have been signed to provide additional, nonmental health resources for persons with serious mental illness.

Through joint funding with the National Institute on Disability and Rehabilitation Research, CMHS supports two national rehabilitation research and training centers. One is the Thresholds Research and Training Center in Chicago; the other is the Boston University Center for Psychiatric Rehabilitation.

Thresholds has published a manual entitled Assessing Vocational Performance Among Persons with Severe Mental Illness: A Handbook of Clinical and Research Assessments. The first section includes vocational assessment and ongoing case logging tools. Instructions and suggestions for their use are provided, as well as mechanisms for planning and tracking psychiatric vocational services. The second section contains a basic introduction to measurement of variables often studied in employment research involving persons with disabilities, especially psychiatric disabilities (Cook, et al., 1994). An Overview of Vocational Research Activities conducted by the Boston University Center for Psychiatric Rehabilitation (Anthony, 1994) offers 40 references to published books, book chapters, and articles in the area of vocational rehabilitation and psychiatric disabilities.

A recent CSP Request for Applications solicited proposals for demonstration projects to conduct multisite, cooperative studies of interventions to enhance competitive employment opportunities. Funded projects will develop, implement, and evaluate the interventions (CMHS, 1994).

Within its mission of facilitating the application of findings and practice-based knowledge, improving access, and reducing barriers for people with psychiatric disabilities, CMHS convened in early 1995 a 2-day round table discussion, "Psychiatric Disabilities, Employment and the ADA: Turning Policy into Practice." Consumers, employer representatives, and legal and mental health experts examined and addressed practical issues of implementing Title I of the Americans with Disabilities Act for people with psychiatric disabilities. Major conclusions of the discussion will be published and disseminated for use in future education and technical assistance efforts.

Values

Central to all service provision for persons with severe mental illness in the community support system is an underlying philosophy about how such services should be made available. The development and provision of mental health services should incorporate the following values and operational philosophies (Stroul, 1988):

* Human dignity is primary. Individuals with mental illness are first and foremost persons with basic human needs, aspirations, desires, and feelings. The dignity and privacy of persons with mental illness must be respected.

* The value of fostering growth, improvement, and movement toward independence for individuals rather than dependence and "chronic patienthood" is critically important.

* The community is the best place for providing long-term care. Inpatient care is only to be used for short-term evaluation and stabilization, with only a small percentage of people needing long-term hospitalization.

The community support system philosophy is further embodied in the following principles (Stroul, 1988).

* Services should be consumer-centered. They should be based on and responsive to the needs of the consumer rather than the needs of the system or the needs of providers.

* Services should empower consumers. They should incorporate consumer self-help approaches and should be provided in a manner that allows consumers to retain the fullest possible control over their own lives. Consumers also should be actively involved in all aspects of planning and delivery of services.

* Services should be racially and culturally appropriate. They should be available, accessible, and acceptable to members of racial and ethnic minority groups and women.

* Services should be flexible. They should be available whenever they are needed and for as long as they are needed. They should be provided in a variety of ways, with individuals able to move in and out of the system as their needs change.

* Services should focus on strengths. They should build upon the assets and strengths of consumers in order to help them maintain a sense of identity, dignity, and self-esteem.

* Services should be normalized and incorporate natural supports. They should be offered in the least restrictive, most natural setting possible. Consumers should be encouraged to use the natural supports in the community and should be urged to participate in the living, working, learning and leisure time activities of the community.

* Services should meet special needs. They should be adapted to meet the needs of subgroups of persons with severe mental illness who are members of minority and ethnic racial groups, elderly individuals and people with multiple disabilities.

* Service systems should be accountable. Providers should be accountable to the users of the services and monitored by the state to assure quality of care and continued relevance to consumer needs. Primary consumers and families should be involved in planning, implementing, monitoring and evaluating services.

* Services should be coordinated. They should be coordinated through mandates or written agreements that require ongoing communication and linkages between participating agencies and various levels of government. Coordination must occur at the consumer, community, and state levels. Mechanisms should be in place to ensure continuity of care and coordination between hospital and other community services.

* These principles have been promoted and practiced for 15 years, creating a new model from which there is no turing back. As Anthony has stated in Rehabilitation of Persons with Long-Term Mental Illness in the 1990's, "Consumers and family members have entered the arena and demanded to play a role in treatment. The psychiatric rehabilitation field has moved inexorably toward acknowledging this role." Clearly, the key to designing and implementing services that are acceptable and work for consumers is to listen to the consumer of the service (Anthony, 1988).

As psychiatric rehabilitation moves toward the year 2000, philosophies and practices continue to evolve. While the guiding principles of the Community Support System still serve as a strong foundation for the development of mental health services, certain elements have emerged as equally important.

* Hope and Recovery. Unquestionably, consumers want to be offered the hope that they will recover. Every individual with mental illness must be offered a vision of hope and possible recovery, even while recognizing that the need for community-based supports may be lifelong for some.

* Safety. Every consumer needs to feel safe both in treatment settings and in their home and community. This safety is much more than being safe from abuse and neglect: it is also feeling secure that your choices will be respected and your individual rights will not be taken away.

Each person needs a safe place of their own. This is not to suggest that everyone must have ownership of a place; rather it means that everyone should have a safe space in which they can live and be free of intrusion. The freedom of choice of where to have, what to do, and what mental health services to choose and accept should rest with the consumer to the greatest extent possible. The basic feeling of safety creates a solid foundation from which any individual can learn, grow and live to his or her fullest potential.

* Rights, Respect and Dignity. People with mental illness must be afforded respect for their rights, personal values and choices. Whatever their disability, they are to be treated equally and guaranteed the full protection of their legal rights. Even those with severe mental illness are full and equal citizens under the law and are entitled to equal access to the same opportunities, rights, services, supports, privileges, and responsibilities afforded all members of society (National Association of Protection and Advocacy Systems, 1994).

* Empowerment. In the treatment setting, to the extent possible, consumers should set their own goals and decide what services they will receive. Consumers should unquestionably be more and more involved in operating consumer-run programs and as service providers at all levels of treatment and rehabilitation. They must be accepted as copartners in service provision. New career paths must be established that place value on the experience of people who have lived with severe mental illness. Mental health programs should take advantage of the knowledge, experiences and empathy of persons who have been "in the system."

At the services level, consumers should be actively involved in planning and policymaking, and included on all relevant committees, boards and councils. Planners, providers, and administrators should dialog with consumers and respond to their stated needs and concerns.

* Community Integration and Employment. Participation in community life is essential. Every consumer has the right to live a fully integrated life in the community and to work in a chosen job. Service providers and policymakers need to acknowledge the principle that people with mental illness can and do live meaningful and productive lives and should be given every opportunity to do so.

* Families as a Key Resource. Families are often the most important resource and support for individuals with mental illness and should be involved, wherever appropriate, in mental health services planning, policy development, delivery, monitoring, and evaluation. Families are big stakeholders in the manner in which mental health services are operated. While informed consumers are increasingly the best source of opinions about treatment options (which are often consistent as a whole with family wishes), consumers and families working together, rather than individually, can more dynamically impact the mental health delivery system.

* Cultural Sensitivity. Mechanisms to assure provision of acceptable and workable services include the use of culturally appropriate needs assessment tools; relevant quality assurance indicators; alternative service delivery models; engagement of neighborhood support systems; adequate representation on advisory boards, planning councils and program planning committees; cross-cultural training for staff; and use of indigenous workers and lingually fluent staff with cultural sensitivities.

* Responsiveness of Services. Services should be flexible, available and accessible to all. The rights, wishes and needs of primary and secondary (family members) consumers are equally important in planning and operating the mental health system. Mental health providers and consumers can in partnership develop and operate services that are comprehensive and coordinated, encompassing a range of options and resources from which the consumer can choose. Services should be individualized and provided in a manner that enables consumers to retain the fullest possible control over their own lives, while at the same time drawing upon the knowledge and experience of mental health providers. For the majority of individuals, the community is the best place for providing services.

Vision

As psychiatric rehabilitation moves toward the year 2000, a world is envisioned in which consumers, families, and providers are working together to ensure that persons with severe mental illness:

* have a place to live, which they chose, in a community they prefer;

* are provided the supports and services they want;

* have available health and mental healthcare that is affordable and effective;

* achieve their maximum potential and live independently;

* are employed and fully integrated into community life;

* are respected, and treated with equity and fairness; and

* receive equal protection of their legal and human rights.

This is our vision and our challenge--together we can make it so.

Bibliography

1. Anthony, W A. (1988). Rehabilitation programs in the 1980's: Laying the groundwork for the 1990's. In L. G. Perlman & C. E. Hansen (Eds.), Rehabilitation of persons with long-term mental illness in the 1990's: A report of the 12th Mary E. Switzer Memorial Seminar (pp. 9-17). Alexandria, VA: National Rehabilitation Association.

2. Anthony, W A. (1994). An overview Of vocational research activities. Boston, MA: Boston University Center for Psychiatric Rehabilitation.

3. Becker, D. R., & Drake, R. E. (1993). A working life: the individual placement and support (IPS) program. Concord, NH: New Hampshire--Dartmouth Psychiatric Research Center.

4. Bourdon, K. H., Rae, D. S., Locke, B. Z., Narrow, W E., & Regier, D. A. (1992, November-December). Estimating the prevalence of mental disorders in U.S. adults from the Epidemiologic Catchment Area Survey. Public Health Reports, 107, 6.

5. Brandenburg, N. A., Friedman, R. M., & Starr, E. S. (1990, January). The epidemiology of childhood psychiatric disorder: Prevalence findings from recent studies. Journal of the American Academy of Child and Adolescent Psychiatry, 29, 1.

6. Burt, M., & Cohen, B. (1989). America's homeless: Numbers, characteristics and the programs that serve them. Washington, DC: Urban Institute Report.

7. Center for Mental Health Services (1993, May). (Available from Office of Consumer, Family and Public Information, CMHS, Rockville, MD). Federal Register 58, 96.

8. Center for Mental Health Services. (1994, August). Cooperative agreements for employment intervention demonstration program. (RFA No. SM 94-09). Rockville, MD: Community Support Program.

9. Cook, J.S., Bond, G.R., Hoffschmidt, S.J., Jonas, E.A., Razzano, L., & Weakland, R. (1994). Assessing vocational performance among persons with severe mental illness: A handbook of clinical and research assessments. Chicago, IL: Thresholds National Research and Training Center.

10. Manderscheid, R. W, & Rosenstein, M. (1992). Homeless persons with mental illness and alcohol or other drug abuse: Current research, policy and prospects. Current Opinion in Psychiatry, 5,273-8.

11. National Association for Protection and Advocacy Systems (1994). (Available from National Association Protection and Advocacy Systems, Washington, DC.)

12. National Institute of Mental Health. (1990). In R. W. Manderscheid M. A. Sonnenschein (Eds.), Mental Health, United States, 1990 (ADM 90-1708). Washington, DC: U.S. Government Printing Office.

13. National Institute of Mental Health. (1992). In R. W. Manderscheid M. A. Sonnenschein (Eds.), Mental Health, United States, 1992 (SMA 92-1942). Washington, DC: U.S. Government Printing Office.

14. Orrick, S. (1992). Accommodating Mental Disabilities. In K. Kirchner & K. Tanasichuk (Eds.), The Annual Review of Disability Management 1992. Washington, DC: Washington Business Group on Health.

15. President's Committee on Employment of People with Disabilities. Worksite accommodations for people with psychiatric disabilities.

16. Rice, D. P., & Miller, L. S. (1993, May). The economic burden of mental disorders. Paper presented at the American Psychiatric Association 1993 Annual Meeting.

17. Stroul, B. A. (1988). Community support systems for persons with long-term mental illness: Questions and answers. Rockville, MD: National Institute of Mental Health, Community Support Program.

18. Tessler, R. C., & Dennis, D. L. (1989). A synthesis of NIMH-funded research concerning persons who are homeless and mentally ill. Rockville, MD: National Institute of Mental Health.

19. U.S. Congress, Office of Technology Assessment. (1986, December). Children's mental health: Problems and services (OTS- BP-H-33). Washington, DC: U.S. Government Printing Office.

20. U.S. General Accounting Office (1991b). Mentally ill inmates: Better data would help determine protection and advocacy needs (GAO/GGD-91-35). Washington, DC: U.S. Government Printing Office.

Dr. Arons is Director, Center for Mental Health Services, and Ms. Schauer is in the Protection and Advocacy Program, Center for Mental Health Services, Rockville, MD.