The Systemic Neglect of New York's Young Adults With Mental Illness

Young adults with mental illness aged 18 to 25 years, particularly those who are poor and homeless and rely solely on public services, are neglected by the mental health service delivery system. This systemic neglect is long-standing and is most evident in the absence of appropriate housing, services, and programming designed with this population's particular clinical and developmental needs in mind.

Young adults with mental illness are in a period of developmental transition as they move from adolescence to adulthood. In addition to the stress of dealing with the effects of emotional, cognitive, and behavioral disorders, they are also subject to the press of developmental forces from within as well as society's expectations that they should participate as independently functioning and contributing adults. Young adults with mental illness desire to live their lives in as full and complete a way as possible. They have the same basic desires as other young adults: an education, a decent job, a place of one's own, friends, intimate relationships, and, perhaps, a family of one's own (1).

The current organization and delivery of mental health services and housing do not reflect the personal and social reality of young adult development, which should be taken into account by any system or organization that treats illness and promotes mental health. A review of the Web sites for all the state departments and divisions of mental health in the United States showed the division of the mental health delivery system into child and adult services (2). Neither the states nor the various mental health agencies of the federal government have a bureau or division of young adult services that could organize and develop efforts on behalf of this population.

Covenant House New York

Covenant House New York, the largest social service agency in the country that serves youths who are homeless and at risk, has been working with this population since it opened its doors more than 30 years ago. Covenant House serves the needs of youths who are up to 21 years old on admission, including young mothers and their infants and children. On any given night more than 400 young people are under the care of Covenant House New York in three residential programs: the crisis center shelter, mother and child residence, and the rights of passage transitional living program. The mission of Covenant House is to serve the suffering children of the street and to provide opportunities for them to grow and develop as full persons. Toward that end, an integral aspect of the philosophy of the program is the importance of work as a first step toward independence. In addition to its residential programs and casework services, Covenant House New York offers a full-service health clinic, a mental health day program, vocational and educational services, vocational training and earned income programs, a pastoral ministry, and recreation programs. Covenant House also operates community resource centers in each of the boroughs of New York City, a street outreach program, and an outreach program to homeless young adult inmates of Rikers Island prison who are in need of housing and services on release. The crisis center provides food, clothing, shelter, and services for up to 4,000 homeless youths a year, and the outreach programs and community resource centers serve up to an additional 5,000 youths.

Covenant House relies on private contributions and foundation grants for 85 percent of its operating budget; the remaining 15 percent is from federal and local government grants. The largest percentage of government money comes from the Department of Housing and Urban Development. Other sources of government support are the New York State Department of Health, the New York City Department of Homeless Services, and the New York City Department of Health and Mental Hygiene

Covenant House New York's mental health day program

The mental health day program was started in 1996 with only privately fund-raised money in response to the increasing presence and demands of young people with mental illness in the crisis center shelter. On any given day the crisis center provides housing and services for 25 to 35 young adults with mental illness, many of whom have recently been discharged from psychiatric inpatient units of the city's hospitals. These persons represent 15 to 25 percent of the average daily census of the single persons aged 18 to 21 in the shelter. The mental health day program provides psychiatric evaluation and medication, educational and vocational programming, casework services, benefits management, and, its primary mission, referrals for mental health housing. The family and social support resources of our residents are assessed and reunification with family is pursued whenever clinically appropriate. In 1998 Covenant House received a grant from the New York State Office of Mental Health in partial support of the mental health day program, which is now managed by the New York City Department of Health and Mental Hygiene through a contract to provide on-site rehabilitation services.

Since 1996 a total of 875 homeless and mentally ill young adults have been admitted to the mental health day program after psychiatric evaluation found them to be eligible candidates for mental health housing through the New York City Human Resources Administration 2000 referral process (3). Only 150 of these young adults, or 17 percent, were placed in the adult residential system. The average resident in this system is aged 45 years.

The adult residential system requires young adults with mental illness to live in unstructured settings with older adults who are mentally ill. A practice that would be completely unacceptable on a college campus— having persons aged 18 and 19 years room with persons aged 40 and 45 years—is accepted practice in the mental health system, even though it violates the basic principles that underlie the organization of social relationships.

Anecdotal evidence from both our work with young adults whom we have placed and who return to Covenant House for aftercare services and from agencies that have accepted them for placement indicates that young adults do not stay long in unstructured placement because they are ill prepared for independent living. Housing agencies find young adults extremely difficult to manage, because these agencies have neither the financial nor capital resources to provide the kind of structured residences and support that young adults need. When young adults are placed in an unstructured residential setting, they do not have the skills necessary to manage their resources, their medication compliance decreases, their alcohol and drug use increases, decompensation is prevalent, and they eventually drop out of the program and return to homelessness and the streets.

Of the 875 young adults, the majority (83 percent) did not receive such housing because a supply of beds and supportive programming were not readily available for them. Also, only a small number of nonprofit agencies are willing to work with young adults with mental illness. The outcomes for the young adults who were not placed in the adult residential system included return to the streets or unstable housing situations, entering the adult shelter system, and psychiatric hospitalization. A small percentage (5 percent) of persons with mental illness is reunited with their families as a result of our case management efforts.

Young adults with mental illness

Available data reveal that significant numbers of young adults with mental illness would benefit from treatment, housing, programming, and supportive services that were designed with them in mind. In New York City psychiatric disorders were the second leading cause of hospitalizations for persons aged 18 to 24 years in 1997, rising from the third to the second leading cause of hospitalization, with 4,935 young adults psychiatrically hospitalized that year. In addition, suicide among young adults rose from the fifth to the third leading cause of death in the decade between 1987 and 1997 (4).

The 1999 New York State Office of Mental Health Patient Characteristics Survey showed that 10,712 young adults aged 18 to 25 years received mental health services in New York State: 1,230 were in adult residential programs, 515 were homeless, 1,238 were on inpatient units, 1,942 were enrolled in community support programs, and 7,086 received outpatient services. The data for New York City showed that 4,736 young adults received services: 370 were in adult residential programs, 332 were homeless, 602 were on inpatient units, 587 were enrolled in community support programs, and 3,249 received outpatient services (5).

New York's adult mental health residential system

Data from the New York State Chartbook of Mental Health Information for the year 2000 shows that 18,407 contracted beds in the adult residential system—8,153 in New York City and 10,254 in the other regions of the state—were operated by nonprofit agencies in New York State from September 1, 2000, through August 31, 2001; the average resident in the adult residential system is aged 45 years (6). As indicated above, the New York Office of Mental Health's 1999 Patient Characteristic Survey showed that 1,230 young adults were in some type of mental health housing scattered throughout the state and New York City (5).

In New York City, in addition to 8,153 contracted beds reported for 2000 to 2001, the Chartbook notes that there were 1,462 New York/New York supported housing beds specifically for adults who are homeless and mentally ill (6). Not one of these 9,615 beds was dedicated to serving young adults, even though 370 young adults were scattered throughout the city in housing programs run by various nonprofit organizations in addition to 332 young adults who were homeless and mentally ill and in the shelter system.

The young adult chronic patient

In 1981, after years of work with young adults at Rockland County Community Mental Health Center, Pepper and colleagues (7) described young adult chronic patients as a population "who present persistent and frustrating problems to community caregivers in mental health and other social service systems. We are referring to people between the ages of 18 and 30 or 35 years who are psychiatrically and socially impaired, so seriously that they are continually or recurrently clients of mental health and other social service agencies over a period of years…. They are stuck in the transition from childhood dependence to adult independence, from parental or quasi-parental support to self-supporting work, adult autonomy, and an expanding network of relationships—the fundamental amenities that keep our own lives going." With regard to the specific needs of this population they said, "There is a crying need for residential programs for our young adult chronic population…with a supportive staff and well-defined structure, designed specifically to meet the developmental needs of young adults and to mesh with their treatment programs."

Cournos and Le Melle (8), in their look back at the work of Pepper and the team at Rockland and their review of what has transpired for the young adult over the past 20 years, remark, "The young adult chronic patients of the early 1980's are now middle-aged and have been joined by a new cohort of young adult chronic patients…. We must join with patients and families in the difficult task of advocating for the financial resources that are necessary to create a more humane and comprehensive system to care for the treatment of young people who are stricken by chronic mental illness."

Conclusions and recommendations

The systemic neglect of young adults with mental illness in New York State is most evident in the absence of a readily available supply of housing with appropriate levels of supportive programming for young adult consumers. Despite the projection of the New York State Office of Mental Health (9) of having more than 28,000 beds in the adult residential system by 2005, not one of these beds has been designated for a young adult. The absence of these resources promotes continued hopelessness, homelessness, psychiatric instability, and the failure to make gains toward psychosocial, educational, and vocational growth and financial independence.

The following systemic changes are recommended. First, in the interest of promoting mental health—that is, functioning at full potential—the mental health system needs to adopt a developmental perspective in the design of treatment and housing programs for adults. The current practice and organization of adult mental health services is a homogeneous one—for example, persons aged 18 years or older are considered adults—and it does not take into account adult psychosocial development. Second, young adults will continue to be neglected unless they are recognized by the system as a population that needs programs and services designed with their needs in mind. The New York State Office of Mental Health and the New York City Department of Health and Mental Hygiene should establish bureaus of young adult services. Such bureaus would be responsible for initiating, coordinating, and overseeing state and local efforts in partnership with nonprofit agencies to study the population and to develop funding streams, residential models, and outcome studies. This organizational change would help fulfill the legislated responsibility of the state to care for the mentally ill. Section 7.01 of the New York State Mental Hygiene Law states that "it shall be the policy of the state to…develop a comprehensive, integrated system of treatment and rehabilitation services for the mentally ill. Such a system should…assure the adequacy and appropriateness of residential arrangements for people in need of service." Third, a proportion of all new housing for persons with mental illness should be set aside for young adults aged 18 to 25 years. Consideration should be given to reconfiguring current housing stock to include specialized programs for young adults and to supporting nonprofit agencies that have expressed an interest in serving this population. Fourth, all mental health and housing statistical reporting by governmental agencies and nonprofit providers should be formatted to include the age groups of 18 to 21 years and 22 to 25 years.

Acknowledgments

The author thanks Bruce J. Henry, J.D., executive director of Covenant House New York, for his direction and suggestions in the writing of this paper and for committing agency resources to provide services for homeless young adults with mental illness and to advocate for changes in the mental health delivery system.

Dr. Giugliano is director of mental health at Covenant House New York, 460 West 41st Street, New York, New York 10036 (e-mail, [email protected]).