RONALD W. MANDERSCHEID
New trends and directions in the care of persons with mental illness
The threat of loss kindles fondness. This adage has proved again to be true as we continue to reflect upon the horrific events of September 11, 2001.Most of us generally took for granted the relationships we hold dear. After September 11, each of these relationships assumed much more importance.
America’s views of mental health have followed a similar course. Prior to September 11, many Americans did not think much about mental health, either our own or that of our fellow citizens.When we did perceive mental health problems, we were able to attribute them to our neighbors in the next block, to the homeless person on the street, or, less frequently, to our fellow workers. For the most part, we did not perceive such problems in personal terms. September 11, 2001, changed that. Most Americans—both children and adults—experienced a heightened sense of anxiety and stress. And many Americans began to suffer from depression as they struggled to cope with the many new changes in our society.
These new experiences of depression suffered by so many after September 11 help us appreciate our own mental health and well-being, as well as the mental health and well-being of families, friends, and colleagues. And how we as a country handled the psychological wounds of September 11 reveals some interesting shifts in how mental health care is provided in America.
DEFINING MENTAL HEALTH
More than 50 years ago, the World Health Organization defined health as a complete state of physical and mental well-being, and not simply the absence of disease.As such, health relates not only to body and mind, but also to the quality of life with our families, friends, and community. Similarly, mental health refers not only to our interior mental and emotional well-being, but also to the quality of how we live our lives. Each of these was threatened by the events of September 11, 2001.
Mental illness reflects the presence of a disease that can range from clinical depression, which is very common in adults, to schizophrenia, which is rare. Depression is characterized by long periods of feeling “blue,” with little energy, and periods of withdrawal from people. Schizophrenia is characterized by disorganized thoughts and perceptions, which sometimes motivate aberrant behavior. Alternatively, mental illness could be a combination of diseases, such as clinical depression and substance abuse. These illnesses can affect a person’s capacity to think in logical ways, perceive events accurately, control his or her emotions, or express them rationally.
Some of these disorders have a genetic basis, and they frequently are called diseases of the brain. However, social and cultural factors also play an important role. For example, it has been well documented for more than 50 years that persons from lower socioeconomic backgrounds have rates of mental illnesses that are several orders of magnitude greater than those of persons from higher socioeconomic backgrounds. In addition, gender and racial differences have been observed. For example, females are more likely than males to suffer from depression. Similarly, although the research data are not entirely consistent, there is reason to speculate that African Americans may have higher rates of schizophrenia than do other race/ethnic groups.
HOW IS MENTAL HEALTH CARE PROVIDED?
In a given year,more than 20 percent of all adults and children in the United States experience a mental illness. In approximate numbers, this means that about 40 million adults and 15 million children are affected each year. Clearly, these numbers qualify as epidemic levels. Even more frightening, these numbers suggest that perhaps 50 percent of the population will experience a mental illness over the course of a lifetime.
At least half of those people experiencing a mental disorder each year do not receive any care at all. This is a tragic statistic in a society as affluent as the United States. Among the 10 percent of the American population who receive mental health care, about half, or 5 percent, actually see a mental health specialist. These specialists include psychiatrists, psychologists, social workers, psychiatric nurses, marriage or family therapists, and clinical mental health counselors. Typically, these providers see clients either in the practitioner’s office or in a mental health organization, such as an outpatient clinic or a multi-service mental health organization.
The remaining 5 percent of the American population who received care for mental illness were seen only by a general medical practitioner. This pattern is particularly pronounced for children, who likely are seen only in pediatricians’ offices; and for elderly persons, who likely are seen only by their personal physician. Experience and research suggest that most primary care physicians are not adequately trained to recognize and treat the full spectrum of mental illnesses.
About one-fourth of those who experience a mental disorder each year suffer from serious mental illness, such as schizophrenia, and suffer the greatest consequences in loss of community participation. Many of these people are homeless and jobless because of their illnesses. Frequently, they receive their only mental health care through a state mental health agency, sometimes in a state mental hospital or local outpatient mental health clinic.
Each year, many other Americans have a range of mental health problems with symptoms that are not severe enough to qualify as mental illnesses. Only a very small percentage of this group seeks or receives care. Generally, when care is sought, the first point of contact is company employee assistance programs, many of which offer both mental health and substance abuse care.
Anecdotal information from New York City indicates that employee assistance programs were flooded with persons seeking relief from the symptoms of anxiety, depression, and post-traumatic stress disorder after September 11. Employee assistance programs around the country found themselves on the front lines simply because many of the people to whom they provide mental health services had never been to any other mental health care setting, and had never before experienced symptoms severe enough to warrant seeking care.
If so many children and adults have mental illnesses, why do so few receive care? In a word... “stigma.” This perception can lead to the rejection of care for fear that other family members, neighbors, fellow employees, and friends will “find out.”Many interpret care-seeking as a sign of weakness that will have negative impacts in the future, such as diminished job prospects or loss of friends. Stigma can also take the form of negative managerial, boardroom, and legislative decisions about funding for mental health care. It is well known, for example, that insurance for mental illness provides less annual and lifetime coverage than insurance for physical disorders. This differential has spawned major efforts by national mental health leaders to seek parity for mental health benefits in private and public insurance plans. In its most extreme forms, stigma reflects obvious discrimination against people with mental illness.
Some progress has been made in addressing the stigma of mental illness. Depression, anxiety, and even schizophrenia show up on some television shows as part of a character’s story line. Well-known national figures have disclosed their own illnesses. For example, Tipper Gore, the wife of the former vice president, and Mike Wallace, a long-time anchor on 60 Minutes, both have discussed their bouts with depression. Danielle Steel has written a gripping account of the manic depression suffered by her eldest son. National consumer and family organizations have been formed to combat stigma. These include the National Alliance for the Mentally Ill, the National Depression and Manic Depression Association, and the Federation of Families with Mentally Ill Children, to name just a few. Stigma has been diminished, but not yet extinguished.
ON THE ROAD TO IMPROVEMENT
In the past quarter-century, there have been dramatic changes in the way Americans view mental health, and the way mental illnesses are treated.Many of these changes are positive steps, though others have introduced new societal problems. The primary changes include the following:
Care has moved from institutions to the community. There are about 250,000
fewer psychiatric beds available now, compared with 25 years ago. Communitybased
care has expanded dramatically. Yet, many persons have been left behind. Witness
the dramatic growth in mental illness among the homeless, as well as among the
poorer segments of American society.
Care is better integrated into overall support systems. It’s now widely
understood that those with the most severe mental illnesses require care systems
in the community that span mental health, overall health, rehabilitation, and
social support services.At the heart of such systems are case managers who work
to achieve better community integration for their clients. Yet, many of these
systems lack essential components, particularly in the most rural areas and
the poorest urban areas.
Care includes a broad range of modern psychotropic medications. Medications
are available for virtually all of the major mental illnesses. Yet, many people
do not receive modern medications because they lack the financial resources
to purchase them. Even when more effective modern formulations are available,
older medications, some developed as long ago as 50 years, are used because
they cost less. Some clients may have added concerns that they are being overmedicated,
with insufficient attention to other forms of care, such as psychotherapy and
interpersonal support.
Care has become consumer and family centered. A quarter-century ago, mental
health care providers made virtually all of the decisions about the nature of
mental health care and its duration. Now, consumers and family members help
to define the objectives and the content of care. They also provide feedback
on such issues as access, quality, and outcome of care. Yet, a chasm frequently
occurs between provider and consumer perspectives, and between consumer and
family perspectives, that can diminish the effectiveness of care. Much bridging
remains to be done.
There is continued debate over forced treatment. In the past, this debate
focused on inpatient commitment. Now, it focuses on outpatient commitment in
community settings. Some community members and professionals favor outpatient
commitment, or courtdetermined and directed outpatient care, if clients do not
follow recommended treatment regimes. Virtually all consumers oppose it as an
infringement upon personal rights. This debate has fostered creative alternatives,
such as advance directives, which are similar to a living will, in which a person
makes his or her wishes known in advance, and appoints a personal representative
to reflect these views of patient care in subsequent proceedings. It may be
useful to view outpatient commitment as a measure of system failure in that
it generally occurs only when prior care has not been adequate.
Disparities in mental health care have been identified. It has been known
for quite some time that racial, ethnic, gender, and age disparities exist in
mental illness and in mental health care services. Yet, it is only recently
that these disparities have been recognized as national policy concerns. The
implication is that mental health providers and systems will need to adapt themselves
to broader diversity, with a heightened level of sensitivity to cultural and
biological differences.
The integration of mental and physical health care services has begun.
Until as recently as 10 years ago, mental health care and physical health care
systems operated in separate and parallel worlds.With approximately 5 percent
of the American population receiving mental health care only from physical health
care providers, there is an urgent need to open a dialogue on ways to integrate
the two fields better. We now realize, for example, that financial incentives,
training, and new system configurations will be needed. A similar dialogue has
started between the mental health and substance abuse fields.
Looking ahead, several opportunities to promote improved mental health care will present themselves over the next few years. The President’s New Freedom Commission on Mental Health, announced in April 2002, no doubt will have plenty of work to do as it grapples with many of these issues and problems. Another federal program, the New Freedom Initiative, is designed to help persons with disabilities become employed, find permanent housing, and receive appropriate support to remain productive members of the community. The Supreme Court’s Olmstead Decision, which is now being implemented, requires states to deinstitutionalize all persons who would be served better in community settings, and provide for the full range of support they need. As a result of these changes, there is reason to hope that America will have a better foundation for building much more effective community systems of mental health care.
Other issues also will need to be addressed. As we build more effective community care systems in the short-term future, we also will need to consider the role that the faith-based community can play in prevention and early intervention; the potential role of private-public partnerships, particularly with the foundation community; the need for effective linkages with physical health care providers and the human service community; and the need for effective outreach to those who are disfranchised, or subjected to discrimination. Moreover, the new community systems must have the capacity to respond to disasters that have effects upon mental health and well-being, similar to those experienced after the September 11, 2001 disaster.
Looking even farther down the road, several other trends likely will emerge. Specifically, human rights will be established as one of the cornerstones of America’s health care system. From the perspective of 2002, it seems incredulous that the major human rights abuses of the 20th century have not fostered human rights protections in health, one of our most fundamental institutions. There was some hope that Congress would pass a Patients’ Bill of Rights, but the 107th Congress adjourned in October without reconciling the House and Senate versions of the bill. This measure, should it become law, would improve access to better care and provide recourse if a client is not receiving appropriate care. And there is momentum building among new and established advocacy groups to include significant human rights protections with regard to health care. For mental health, these changes are likely to include protections that ensure the right to human dignity, the right to choose care and participate in decisions about care, the right to provide feedback about the quality of care, and the right to expect that care will result in significant improvement.
Another trend that is likely to affect mental health care is the move toward consumer- and family-centered care. Consumers and family members will seek and receive more responsibility for health and health care. Already, consumer-operated mental health services have become more common, with individuals and family members expected to take on a greater role in the direct management of mental disease. As human rights are expanded and as greater attention is paid to prevention and early intervention, consumer and family responsibility will burgeon.
Technology will become an even more important vehicle for delivering mental health care. At the present time, telecommunications, computer, and Internet technologies are being linked to offer “care at a distance.” Several thousand Web sites now offer interpersonal psychotherapy, expanding the scope of mental care services much as the telephone expanded health care providers’ ability to help their patients in the past. Rapid advances also are being made in voice-activated automatic response systems, and in the application of artificial intelligence systems to real-world problems. As a result, it is now possible to receive care and guidance through a computer program without human intervention. Other automated systems are being developed to monitor and report physical symptoms to health care providers at home in real time.
In the short term, these technologies will permit care with or without ongoing human intervention, and should ease many of the difficulties and delays in receiving care. But as non-interpersonal technologies become more pervasive, new concerns may arise about how and where human intervention in the mental health care process is appropriate or even essential.
Most promising of all, perhaps, will be the development of new genetic treatments over the next 5-10 years for biologically based mental disorders. To date, virtually no genetic interventions are recommended or implemented in the mental health field. Now that the basic human genome has been mapped, this situation likely will change radically as genetic interventions are developed for mental disorders that have a genetic basis.
As we move from the present into the future, it seems very important to open a dialogue to establish principles to preserve and promote our humanity and well-being. In other words, how should mental health care fit into the values represented in our vision for people and society? How can we use advances in technology and genetics appropriately so that they serve these values? These are among the key philosophical questions to be addressed over the next century. How the country’s mental health system handled America’s anxiety, depression, and post-traumatic stress disorders after 9/11 should give us reason to be hopeful that mental health services are headed in the right direction. If anything, America’s response to September 11, 2001 has prepared us to engage effectively in this dialogue.
![[photo of Ronald W. Manderscheid]](manderscheid.jpg)
Ronald W.
Manderscheid (CC ’83) has worked in all aspects of mental health and has been
involved in Cosmos Club community outreach efforts, including child mental health
workshops for teachers and counselors from the D.C. Public School System. Marilyn
J. Henderson, his colleague at the US Center for Mental Health Services, provided
invaluable assistance in the preparation of this article.
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