At Home: Strategies for Serving Older People with Mental Disabilities in the Community

Purchase At Home from the Bazelon Center's online bookstore. At Home Table of Contents Also see Our Own Voice, an advocacy group of older mental health consumers.

From a Bazelon Center book with dialogues between the nation's leading innovators of services and legal advocates for elders with mental disabilities

The mental disability rights movement of recent decades enabled many people with mental illness or mental retardation to rejoin society. One group, however, was left behind: people who had grown old in state institutions. Some languished on the back wards of hospitals and training schools where they'd been sent decades earlier with a diagnosis of mental illness or mental retardation. Others, generally for economic reasons, were "transinstitutionalized" to nursing homes, where they were joined by elders newly diagnosed with depression or dementia, or "outplaced" into shoddy board-and-care homes.

Both groups' circumstances were identical, though. These older adults were seen as needing no more than custodial care while they lived out their lonely, tedious days. Often they were strapped into beds or chairs with physical restraints and silenced with antipsychotic drugs. Under the rationale that they wouldn't be able to "make the adjustment," they were left out of the movement to create humane community-based alternatives. The innovative programs described in At Home show just how wrong that assumption is.

It may be that the reduced availability of federal dollars will inspire more states and communities to replicate the community-support models described here as alternatives to costly institutional care. At the same time, however, we face relaxation of the federal rules that now protect the rights of elders with mental disabilities. It will be all the more important, then, for advocates to make sure that new programs offer their consumers not just a place to live but a life of dignity and choice.

Part I: Elders with Mental Disabilities: Who Are They and Where Do They Live?

Joseph J. Bevilacqua, who has headed the development of community-based service systems as Commissioner of Mental Health in three states, outlines the history of mental health services for elders.

"We need to recognize that elders are the most rapidly growing segment of our population. In the past decade alone, the number of people over 65 has increased threefold. Life expectancy is increasing. In 1950, the average life span was 68.2 years; in 1985, 74.9 years; and the estimate for the mid-21st century is 85 years. These data are pertinent to how we plan for the future, especially since this country lacks a long-term health care policy to address the needs of this growing group. And the programs that do exist have a strong institutional bias, particularly those for elders with mental disabilities.

"So what is wrong with institutionalization? Many elders remain involuntarily confined in psychiatric hospitals, not able to leave but not receiving treatment other than custodial care. There are significant risks to institutional care. Mortality rates are higher for institutionalized people than for noninstitutionalized persons. This mortality rate has been attributed not to poor health, but poor quality of institutional care and the psychological impact of hospitalization. The psychological risks include humiliation, loss of independence and dignity, and feelings of obsolescence. Institutional care encourages, if not compels, passivity and dependency. Residents lose the ability to care for themselves and make decisions for themselves. Neglect is also a significant risk because elders may be viewed by staff as unworthy of attention and incapable of rehabilitation.

"The problems we have today with large, impersonal facilities for elderly people reflect good intentions that did not play out a real understanding of the elderly. By looking at the individual, not the program, and building a network of support, I believe you can begin to make a significant difference in how we rearrange these services. In the end, I think we can present a real quality of life to our elderly mentally ill citizens. We can do it in a way that brings into play their participation, so that quality is not just a professional issue, but is an issue of individuals themselves, who must participate if we are to talk about their true dignity."

Part II: Creating a Community-Based System

Several experts who have developed and operated community-based services systems for elders with mental illness offer overviews of the structure, content and financing of their programs: Ray Raschko of Spokane's Elderly Services Program, Robert Bernstein of Older Adult Services in Detroit, Mark Maurer of the Philadelphia Mental Health Care Corporation and Michael Bernstein of Florida's Gulf Coast Jewish Family and Mental Health Services. All stress flexibility as critical for a successful service system for elders with mental disabilities. As Mr. Maurer put it:

"The key element is flexibility in what the services are because when people are aging, they change and their needs become different. A consumer taught me about the Exactly Disease,' when people do exactly what you tell them to do. I think of providers that way a lot: Here's exactly what we do and here's what we don't do.' Here's exactly whom we serve.' What about the person who falls in the middle? As long as we keep developing services with Exactly Disease, we're always going to have cracks for people to fall into.

"The key is to organize your system to stay on top of the changing needs and be able to bridge gaps through case management, back to the administrative people and policy makers and the people who hold the purse strings. That way I can say to a provider, Your program was great the way it has been the past two years, but now we have this new need. Let's go in and....' It's not a surprise to the provider because when I established the contract, I said my needs may change a couple of years down the road."

Collaboration is critical, as Ray Raschko points out:

"One of the things we must do to establish a successful community-based care system is round up all concerned organizations to take part in the planning of a relevant system. Because if care is not relevant, it can do much more damage than good to at-risk older people. Currently, the organizations that provide services to the elderly disagree on their clients' needs. The aging system argues that at-risk people have primarily physical problems. The mental health system likes to see the at-risk population as the classic Alzheimer's patient who is ambulatory, but who wanders and gets lost a lot. However, most of the at-risk population, about 60 to 70 percent of elders, has all of these needs, and it is vital for agencies to recognize this.

"The main issue, besides identification of people who need services, is that somebody has to say, These people belong to us.' If you called every agency in Baltimore who works with older people, the primary thing they would say they do is information and referral. Everybody's in the referral business and nobody's in the keeping business. What we have as a result are large numbers of people who need, in effect, someone to say, These are our people. We will identify them and we will keep them in the most independent living situation we can keep them in as long as we possibly can.'"

Legal and Ethical Issues in Advocacy for Elders

Robert Bernstein considers advocacy the fifth part of his framework for a model community-based system:

"A model system of services to older adults with chronic mental health impairments goes much beyond the provision of quality mental health services, the reduction in institutional use, and the development of community capacity. In recognition of this client group's long history of social disenfranchisement and its absent political voice, the model program must adopt a formal, active role of advocating."

Admittedly, Dr. Bernstein continues: "This is a rather unusual role to be formally assumed by providers of mental health services to older adults. Within mental health systems, certain other consumer subpopulations often those with highly invested and outspoken parent-advocates have been at the cutting edge of service delivery and the development of community options. Services have been designed for such groups not primarily on the basis of cost reduction; rather, the impetus has been to establish aggressive rehabilitative programs and to offer consumers the dignity of living at home, or at least in home-like community environments. In terms of their level of disability, the long-standing disinterest by mental health professionals in their needs and their history of being regarded as custodial-care patients,' older adults with mental illnesses are not dramatically different from such populations.

"What does differentiate older adults is the general absence of vocal and organized advocacy directed at placing client benefit over cost and demanding the very best for them. In this regard, promoting a model program for older adults primarily on the basis of cost-savings fails to acknowledge what should be an inherent right of elderly consumers to high-quality services that disclaim the institutional biases of the past. The model program takes on the tasks of articulating this standard to policy makers, empowering clients to self-advocate and forming community collaborations necessary to support their position."

Further, advocacy for elders is in the self-interest of current leaders in the mental health field. Mark Maurer echoes Dr. Bernstein's view, urging that the nation give "high priority to studying and developing services for the elderly in general and those with mental illness in particular.

"All of us stand a very good chance of being in one of these groups in the not-so-distant future. If these systems do not evolve to a much better developed stage than they are now, many of you will be experiencing the fearful, dehumanizing and ineffective chaos that we currently call our public service-delivery system for the elderly. We cannot continue to hide behind the barriers which say that we are unable to afford to do what is needed, because the fact is that we must all lobby for changes immediately or we may be doing the lobbying for ourselves as consumers sitting in the dayrooms of less-than-desirable services."