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 inUS 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 19942 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

9

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

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

Optimizing Outcomes:The Process of Recovery1

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

Aquila et al. Psychiatric Rehabilitation Journal Vol. 23, Num. 1

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

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 forPsychoeducation Sessions

Ongoing contact with involved familiesis essential

Do not use “confidentiality” as an excuseto avoid making contact with the family

Listen carefully for concerns about any side effects

Adherence Tips forPsychoeducation Sessions (cont)

Family should avoid confrontationover medications

Find out if anyone is opposed to medicationand 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

$0

$200

$400

$600

$800

$1,000

PsychiatricAcute CareHospitals

StatePsychiatricHospitals

CommunityResidence

MunicipalShelters

NY/NYSupportive

Housing

The Campaign for New York, NY II: Background Report, February 1998.

Per D

iem

Cos

t of N

Y/NY

Hous

ing

& Al

tern

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Dixon et al. Schizophrenia PORT. Schizophrenia Bulletin, 1998;24:1.

Schizophrenia PORT:Recommendations & Implementation Recommendation

•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