Facts About The Forgotten Population

FACTS ABOUT "The Forgotten Population"

15th Annual NAMI Convention

There is growing evidence that there is a subgroup of persons with severe mental illness whose symptoms are largely untouched by current treatment or rehabilitation efforts and who may require life-long supervised living arrangements. The term "the forgotten population" seems appropriate for this group because their needs are often overlooked in the closure of hospitals and the planning and implementation of community services. These individuals can be found in jails and prisons, among the homeless, in nursing homes and care facilities and even in family homes. They remain largely hidden from view and forgotten.

Although the exact number of individuals who are the most severely affected by deinstitutionalization and inadequate community resources for long-term care are unknown, some preliminary estimates are as follows:

Diagnosis of schizophrenia

Persons with schizophrenia are the severely mentally ill group most at risk for chronicity and severity of symptoms. Because of lack of adequate community services they are often homeless, imprisoned and in nursing homes.
Approximately 40% of persons with schizophrenia do not respond well to current treatment. This is equal to 720,000 persons.
Seventy-four percent of neuroleptic-responsive outpatients become noncompliant within 2 years. The consequence of noncompliance accounts for at least 40% of all episodes of schizophrenia relapse and at least one-third of all acute in-patient costs.

Diagnosis of bipolar affective disorder

Approximately 20% of persons with bipolar affective disorder do not respond well to current treatment. This is equal to 220,000 persons.
Although the majority of persons with this disorder lead essentially normal lives, they too are among those in nursing homes and imprisoned as a result of inadequate community resources.
Concurrent alcoholism/substance abuse. An estimated 50-60% of psychiatric inpatients have co-existing alcoholism or substance abuse.

Concurrent chronic medical diagnosis

Impairments of daily living are often compounded by physical incapacities among persons with severe mental illness. Chronic medical illnesses frequently go undiagnosed and untreated. Almost no health services research has been done in this area.
Deinstitutionalization has severely reduced access to inpatient care. The magnitude of deinstitutionalization is evidenced by the following:

The average daily census of state psychiatric hospitals dropped from 559,000 in l955 to 92,000 in l990, a 83.5% decrease.
The availability of psychiatric beds has been reduced from 11 per 100,000 in 1986 to 5.2 per 100,000 in 1990 in spite of the concurrent reduction in availability of state hospital capacity.
The average length of stay in hospitals has been dramatically reduced, particularly with the advent of managed care. From 1969-1988 the average stay in private hospitals went from 39 days to 26 days -- a reduction of 33%.
Since 1988 there have been further drastic reductions in length of stay in psychiatric units in private and general hospitals.

Community resources have failed to compensate for the decline in hospital care. In many cases, resources are not available to meet basic human needs (shelter, food and medical care) Rehabilitation services are largely unavailable leaving persons with little or no ongoing care.

This failure has resulted in:

Jailed severely mentally ill: At least 30,700 severely mentally ill are in jail and approximately twice that number are in prison.
Schizophrenia and bipolar affective disorder are the major diagnoses of those incarcerated.
Homeless severely mentally ill: One third of 600,000 homeless suffer from severe mental illness. Schizophrenia is common among the long-term homeless.
Nursing homes: Approximately 194,300 persons with severe mental illness live in nursing homes. Of those, 27% (52,451) are under 65 years of age. Nursing homes house large number of individuals with schizophrenia and bipolar affective disorder.
Household population: As many as 2/3 persons with severe mental illness live with their families, who often become service providers by default because of the gaps in existing mental health services. The impact on families is enormous, leading to physical illnesses and severe psychological stress among family members.
Group Homes: Of particular concern is the limited numbers of group homes. Only 32,328 live in this setting. In spite of positive outcomes from a structured environment for those who are the most severely ill, there is a growing movement to locate this population in independent living arrangements with limited support.
Suicides: Suicide is an increasingly common outcome of failed deinstitutionalization and lack of adequate community services. About 10% of those with schizophrenia and 15% of those with mood disorders commit suicide. This is in contrast to the rate of 1% for the general population.
Rehospitalizations: The rate of

For further information contact: The Long Term Care Research Project, Co-Directors
Eose Marie Friedrich, College of Nursing, University of Iowa, Iowa City, IA 52242, 319-335-7065, 319-335-9990 (FAX)
Curtis B. Flory, Zircon Company Inc., PO Box 3612, Peabody MA 01960, 979-532-1100, 978-632-0012(FAX)
Published in the 1995 issue of the NAMI ADVOCATE Newsletter