Fountain House: How A Community Can Engage Ralph Aquila, M.D. Sidney R. Baer Jr. Center New York, NY

Schizophrenia: “The worst disease afflicting humanity” Strikes 1% of world population or 50 million people Most chronic, debilitating mental illness Person becomes ill in late teens, early 20's - missed opportunities Social toll includes emotional and financial costs to families Persons suffer severe range of symptoms

The Burden of Schizophrenia on Individuals All of us need to “fit in” with jobs, friends, family and social activities The isolation, personal devastation and human suffering is enormous Stigma High rate of attempted / completed suicide

The Burden of Schizophrenia on Families and Society $32 Billion Direct medical costs: costs of providing care Indirect costs: lost productivity on the part of patients and families Other Costs: social welfare administration, crime and the criminal justice system, homelessness, premature mortality due to suicide

Schizophrenia: The Financial Burden 2.5% of U.S. health care costs 22% of mental illness costs 1 in 3 psychiatric hospital beds 25% of admissions to US hospitals 40% of all long term care facilities Source: Rice and Miller 1996

Schizophrenia: Societal and Family Burden Families provide most support - caring for loved ones impoverishes families 33% of homeless (Carpenter & Buchanan 1994) Tax payers pay 2/3 of direct costs for schizophrenia (Rice and Miller 1996)

Homelessness and Mental Illness At any given time, 200,000 of 600,000 homeless in US are mentally ill 1 There are remedies for homelessness in mentally ill populations 2 – 74% to 93% one-year retention rates in supportive housing programs – Homeless patients in NYC stayed 4.1 days or 36% longer per admission to general hospitals. The cost for psychiatric patients was $4,094. 1 US Dept HHS, 1992,; Culhane 1994 2 Center for Mental Health Services 1994 3 Salit et al 1998

Disproportionate Imprisonment of Mentally Ill Persons in US 3 to 20% of persons in jails are mentally ill (Teplin 1990) “...community correctional institutions, the jail and the police lock-up have become the nations new asylums” (Rock & Landsberg G 1998) “Dubious award” for the largest “mental institution”: Rikers Island, NY vs. LA County jail

Suicide Among Mentally Ill Inmates Suicide by inmates with schizophrenia or manic-depressive illness is relatively common. Data collected from New York State jails between 1977 and 1982 showed that half of all inmates who committed suicide had been previously hospitalized for treatment of a serious brain disorder. For each successful suicide in jails, there are many others that are unsuccessful. According to a chief psychiatrist in the Los Angeles County Jail, the ratio of failed suicide attempts to deaths by people with untreated brain disorders is about 20 to 1. Davida Adedjouma 2007 Jails operate primarily on a cost-saving philosophy. They spend dollars only when it will save larger sums, not because the service is needed. One example is the cost-effectiveness of acute treatment for suicidal patients because it shields the facility from the liability exposure of a wrongful death claim from an inmate's family. A result of the effect of prison life on inmates is the alarmingly high rate of suicides. Suicide is the leading cause of death in inmates, accounting for over half the deaths occurring while inmates are in custody. Almost all who attempt suicide have a major psychiatric disorder. More than half of the victims were experiencing hallucinations at the time of the attempt. These deaths are tragic because mental disorders are highly treatable with 60-80% success rates.

Schizophrenia is treatable Outpatient treatment and rehabilitation programs for people with schizophrenia can reduce psychiatric re-hospitalization rates, improve quality of life, prevent homelessness and increase the likelihood of gainful employment (Hargreaves & Shumway, 1989) Half of the people who receive treatment for schizophrenia either recover completely or are able to live independently with only modest psychosocial support (Biology of Mental Disorders, OTA, 1992)

Progressive Stages of Illness in Untreated Schizophrenia Slide Overview: One of the consequences of this illness, neurological degeneration, is shown here. This slide depicts the natural course of illness in schizophrenia and how it can be divided into four phases: premorbid, prodromal, onset or deterioration, and residual or stable. Beginning with Kraepelin2, schizophrenia has been viewed as a progressive disorder that results in a “downward spiral” of impairment and lost function. Despite over a century of observation that patients with schizophrenia are at risk for clinical deterioration, evidence of neurological deterioration in schizophrenia has been lacking until research conducted in the 20th century. Key Point: This diagram schematically depicts the clinical and pathophysiological course of schizophrenia in its various clinical stages. Schizophrenia emerges over time, and the illness can be conceptualized as having three pathophysiologic stages, which correspond to distinct clinical stages: neurodevelopmental (premorbid), neuroplastic (prodromal, onset, and deteriorative), and neuroprogressive (deteriorative and residual/stable). The actual course of the illness varies among individual patients. References: 1. Adapted from: Lieberman JA, Perkins D, Belger A, et al. The early stages of schizophrenia: speculations on pathogenesis, pathophysiology, and therapeutic approaches. Biol Psychiatry. 2001;50(11):884-897. 2. Kraepelin E. Dementia Praecox and Paraphrenia. Edinburgh, Scotland: ES Livingstone; 1919.

Key Point: Bipolar disorder is an illness associated with neuroplasticity and morphologic changes of the brain, physical comorbidities, and severe psychosocial consequences.

Key Point: Bipolar disorder is associated with significant morbidity and mortality. Some may be consequences caused by the behaviors, but much of the associated morbidity and mortality is inherent in the disease itself.

Key Point: Bipolar disorder is a confusing and difficult diagnosis to make. Patients present in many different ways and often do not report symptoms of mania but focus on those of depression. This makes it difficult to make an accurate diagnosis.

Key Point: Bipolar disorder is associated with greater unemployment, more work loss, problems with relationships, and a higher divorce rate. The psychosocial consequences are serious. Effective diagnosis and treatment of the disorder offer the chance of great improvement.

Optimizing Outcomes: The Process of Recovery1 Slide Overview: The notion that patients with schizophrenia are destined for deterioration is unnecessarily pessimistic and stigmatizing to those who suffer from the illness. Growing evidence suggests that the course of illness is affected by several factors including the promptness of effective treatment interventions. The goal of treatment is to help patients move beyond the devastating impact of schizophrenia and to engage in valued life roles. This progression of events is termed “recovery.”1 Recovery is a process whereby persons with schizophrenia can learn to live satisfying, hopeful, and contributing lives. Rather than implying a cure, recovery means developing a new meaning and purpose in life despite the presence of schizophrenia. Many factors are likely to facilitate the recovery process. A critical factor in promoting optimal outcomes in schizophrenia is the availability of prompt and effective treatment. Key Points: Effective long-term treatment requires dependable control of symptoms over time. Avoidance of relapse is crucial to functional recovery. Functional improvement requires effectiveness that goes beyond symptomatic relief. By improving symptoms and lengthening the time to relapse, functional recovery becomes possible. With functional improvements, effective treatment can offer patients the chance to maximize their individual goals. References: Anthony WA. Recovery from mental illness: The guiding vision of the mental health service system in the 1990s. Psychosoc Rehabil J. 1993;16(4):11-23. American Psychiatric Association. Practice guideline for the treatment of patients with schizophrenia, second edition. Am J Psychiatry. 2004;161(suppl 2):1-56.

Practice Guidelines? Acute Psychosis Long Term What are the outcomes?

Clubhouse Intentional community/relationships Membership Made to feel needed Member needs to give back Cost-effective Generalist model > 200 in USA

Clubhouse Continued 350 members per day Open 365 days per year 1200 Active members Work Ordered Day Evening and Weekend Program

Rehabilitation/Recovery Alliance Collaboration with patient & system, patient (person) becomes co-team leader Treat symptoms with specific goals in mind Focus on strengths & opportunities instead of only psychotic symptoms Aquila et al. Psychiatric Rehabilitation Journal Vol. 23, Num. 1

Relapse: Psychosocial Lack of support Family &/or caregiver Stressful environment Complex mental health system Only 50% of patients keep first outpatient appointment

The When of Rehabilitation Geel 1300’s? “Maintenance” before 1980 Psychiatrists not included 1990 ACT model incorporates employment Consumers speak up Clubhouse & psychiatry Other models, The Village, Living Skills Modules …

Rehabilitation: a Treatment Necessity Persons with serious mental illness can improve their lives Every person has strenghts Time is an ally Employment and Education as a catalyst Empowerment

A Few More Words about Rehabilitation Non-traditional settings Families as Advocates “Workers” as Advocates Patients/consumers as advocates

Adherence Tips for Psychoeducation Sessions Ongoing contact with involved families is essential Do not use “confidentiality” as an excuse to avoid making contact with the family Listen carefully for concerns about any side effects

Adherence Tips for Psychoeducation Sessions (cont) Family should avoid confrontation over medications Find out if anyone is opposed to medication and try to get that person on board Families can be part of the solution, not the problem

Per Diem Cost of NY/NY Housing & Alternatives The Campaign for New York, NY II: Background Report, February 1998.

Schizophrenia PORT: Recommendations & Implementation Families should be offered a psychosocial intervention that includes education, support problem-solving & crisis intervention Implementation Of sample of 540 outpatients with families, 62.8% had not received ANY family contact or treatment in the last 6 months Dixon et al. Schizophrenia PORT. Schizophrenia Bulletin, 1998;24:1.