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

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
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
 Families
settings
as Advocates
 “Workers”
as Advocates
 Patients/consumers
advocates
as
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
Per Diem Cost of NY/NY
Housing & Alternatives
$1,000
$800
$600
$400
$200
$0
Psychiatric
Acute Care
Hospitals
State
Psychiatric
Hospitals
Community
Residence
Municipal
Shelters
NY/NY
Supportive
Housing
The Campaign for New York, NY II: Background Report, February 1998.
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
Dixon et al. Schizophrenia PORT. Schizophrenia Bulletin, 1998;24:1.