Not so many years ago a diagnosis of schizophrenia was a life sentence, shortened only by the low life expectancy of people with serious and persistent mental illness. Thanks to the recovery movement, we now understand that a diagnosis of schizophrenia or other serious psychotic disorder does not doom people to terrible lives. The quality of individuals’ lives can be better or worse, and which it is depends to a considerable extent not only on the treatment and care that they get, but largely on the conditions in which they live. Safe, stable, and appropriate housing is critical to their quality of life.
Providing decent housing is, however, an extremely complex matter because older adults with severe, long-term psychiatric disabilities live in many different settings. Some live independently. Some live with caregiving family or friends. Some get formal residential care in senior housing, supportive housing, community residences, assisted living, adult homes, nursing homes, or homeless shelters. Some are literally homeless and live “on the streets.” And some are incarcerated in jails or prisons. A few remain in state hospitals for many years.
Independent Living
People with serious, long-term mental disorders encounter several difficulties living independently. First, it is a struggle to pay the rent when cost of living adjustments to public assistance do not keep pace with rising housing costs. Those with housing subsidies, such as Section 8, that cover rents that are over 30-40% of income are protected from this, but relatively few people have such subsidies. Second, people can lose their housing if they have extended hospitalizations or incarceration in jail or prison. Third, in-home services such as home healthcare and psychiatric services that may be necessary to be able to remain at home are often not available. Fourth, and very importantly, living independently can result in social isolation that contributes to—or is a consequence of—increasing levels of depression.
Living with Family
People with serious, long-term mental disorders who live with caregiving family and friends also may encounter difficulties remaining at home. Caregivers typically experience great stress resulting in high rates of physical and mental disorders and increased placement of disabled family members in residential care. In addition, as caregivers age, they are more likely to become disabled themselves or to die, leaving the person who needs help to remain in the community without needed care. Unfortunately, Adult Protective Services, which are supposed to step in when adults cannot live safely in the community, are of notoriously uneven quality and are hampered by a lack of appropriate alternatives.
Living in Supportive Settings
Older adults with serious, long-term mental disorders who live in settings that provide support or care often do not get services that they need.
Community residences and other specialized mental health housing programs are generally designed for younger adults who are physically healthy. Those who have co-occurring disorders often cannot get admitted to these facilities or, if they do, cannot get appropriate medical care. This is particularly true for those who develop dementia.
Those who live in other residential care facilities such as assisted living, senior housing, supportive housing, homeless shelters, and nursing homes generally cannot get appropriate treatment for mental or substance use disorders even when they can get decent physical health care or care for dementia.
Living In Jails Or Prisons:
The number and proportion of older adults in jails and prisons in the United States is rising rapidly and will continue to grow as the elder boom gathers force. Although estimates regarding mental illness among incarcerated older adults vary, the rate is clearly much higher than in the general population. Needless to say, they generally fare very badly.
Whether older adults with severe mental disorders and/or dementia who are not dangerous to others should serve their full terms in prisons is controversial. Those who believe that the purpose of imprisonment is punishment generally oppose early release. Those who believe that the purpose is rehabilitation and public safety generally support early release.
Older Adults in State Hospitals
As the number of people in state hospitals has dwindled so has the population of older adults. In fact, transferring older adults from state hospitals elsewhere has been a high priority, especially because during the peak years of the use of state hospitals as many as a third of the patients were older and suffered from organic brain diseases including dementia.
This has been a matter of debate for over 50 years. But recently, it has gathered new force with vociferous and vituperative ideological disputes about whether deinstitutionalization was a major cause of homelessness and the rise of jail and prison populations and whether a vast increase in long-term hospitalization would reduce these problems.
Public Policy Implications: Residential Problems and Issues
Given the importance of stable housing to quality of life, it seems clear that public policy changes are needed. These include:
- Protection from eviction due to unaffordable rent increases or extended stays out of the home when hospitalized or imprisoned.
- Funding for renovations that are needed to live safely at home.
- Modification of Medicaid and Medicare to fund in-home health and mental health services.
- Protected access to activities that counter social isolation including those in senior centers, social adult day care, medical day care, psychiatric rehabilitation, day treatment, and partial hospitalization.
- Support for family caregivers including respite, counseling, support groups, and tax relief.
- Development of more residential care alternatives that provide as much freedom and access to the community as possible while still providing appropriate care and treatment for people with co-occurring physical and behavioral disorders.
- Reduced incarceration in jails and prisons for older adults with severe, long-term behavioral disorders who are not currently a danger to society.
- Redoubled efforts to end homelessness.
- Resolution of the ideological disputes about deinstitutionalization that have vastly impeded unified advocacy to improve our nation’s mental health system.
- The current public policy assumption that it is preferable for people with disabilities to live independently if at all possible needs to be examined in light of the risks of social isolation.
This article is drawn from a work in progress on public policy issues related to schizophrenia and other psychotic conditions in later life.
Michael B. Friedman, MSW is an Adjunct Associate Professor at Columbia University School of Social Work and co-founder of the Geriatric Mental Health Alliance; Lisa Furst, MSW, MPH, is Assistant Vice-President of the Mental Health Association of NYC and Director of the Geriatric Mental Health Alliance; Kimberly A. Williams, MSW is President of the Mental Health Association of NYC. She is co-founder of the Geriatric Mental Health Alliance and chairs the National Coalition on Mental Health and Aging; Paul Nestadt, MD, is a postdoctoral fellow in the Psychiatric Epidemiology program in the Johns Hopkins Bloomberg School of Public Health and serves as supervising psychiatrist for the Anxiety Clinic in the Johns Hopkins School of Medicine; Lina M. Rodriguez graduated from the Columbia University School of Social Work in 2017 and is Prof. Friedman’s research assistant.
